Sunday, May 27, 2012

1 Month Post-Op, Discharge and HOME!

Wow, I totally just realized that today, TODAY it was exatly a month ago that I had this lumbar thoracic to peritoneal shunt placement under the laminectomy (removal of lamina or bone in the spine to create space). I can say with 100% certainty that I am super happy to be on this end of the surgery and although we have some healing to do and potentially some therapy decisions to make with this catheter location and irritation I am still happy to (I know believe it or not that I am saying this) have the 2nd shunt as I do think it has kept us from having a shunt problem so soon yet and headache wise as I think I said in yesterday's update then some H/A's here and there I do feel better.

It was Dr.Bragg's partner this morning on rounds (they switch off ever other sun) and I had already been up a bit when he came by so he left it up to me whether to go home, which wasnt a hard call since I did feel better tan yesterday by far when I saw Dr.Bragg. Before getting released today we did a 4th Lidocaine drip/infusion over about 4 hours (slowed way down) and went really well at the rate we turned it eventually down to (15cc/hr) with my Mom and I playing our usual Scrabble to square away the time. I have to admit she beat me both times although I beat her when she and my Dad visited the other day. :)  Afterwards Pharmacy and all neccessary people did their things in order for me to get discharged and we got out of their arounf 6-ish I think. Ironically I think that was the best Lidocaine infusion ive felt yet. I wanted to stop at Target on the way home and get a few things since I am staying at my parents and I did feel pretty sore but it was a soreness definitely from the catheter/nerve placement but still a bit more manageavle where  I could get through the store albeir really slowly.

As far as therapy to help with the discomfort and apparent nerve irritaition from the shunt catheter in my thoracic spine I have no one clue what that might entail - ie could it be further lidocaine infusion/drips or a stronger anti-inflammatory or moving the shunt catheter - I dont really know and honestly am just going to try and not worry about it for now. I'll focus on trying to heal and feel better and minimize the pain as much as possible through things like the abdominal binder and meds and heat, careful movement, upright sleep, etc. That said I am very curious what my neurosurgeon will think when I go back and see her about healing the nerves as she had varoius ideas about the whole situation.

Tomorrow my Mom and sister are having a get-together/welcome home and should be fun with close relatives. It is hotter than blzes here so in theory could use my parents pool but I know I wont and doubt the others will either given the water is likely pretty darn cold! Non-the-less it is nice to have come home to really warm weather!! :)

All for now,


Saturday, May 26, 2012

Week 4, Day 30 (?) In-patient -Discharged Sun?

I originally was going to get out today and the discharge orders where written but last night was aweful - not as bad as right when I went home and then came back after a day-ish but still pretty bad. My neurosurgeon came in this morning and decided I should  stay and we would do a double dose of the lidocaine but spread out over several hours. We are in the middle of the 1st Lidocaine infusion now and the idea was to do several with a regular dose of oral pain med right after this 1st Lidocaine infusion to see if we could break up the pain cycle. Labs will be done after this infusion to make sure everything looks fine and then if it does we will do the 2nd dose tonight over another 2 hours with vitals continuing to be every 15 mins (which yes means not alot of sleep during that time). I am hoping it works and helps break the pain cycle. I definitely want to go home tomorrow!!!

I was looking up and trying to find information on my thoracic spine and catheter issues and came across a interesting article and feel like I understand the issue (albeit Dr.Bragg has I should add said these very same things to me but sometimes reading something in person is more helpful as I can read and re-read it multiple times) a little better. Here is one statement I copy and pasted from the article: "The decrease of the patient’s thoracic pain as the pump flow was decreased suggests that a pressure/volume effect may have induced his pain symptoms. When pain is unresponsive to increases in medication, this effect should be considered."      In essence just as Dr.Bragg has said the less flow gonig through the shunt catheter in the thoracic area due to the irritation the less pain and so the higher we program the shunt the less pain I will have as we have established. With her partners reccomencatiom we do have the shunt valve set at the 2nd lowest setting as he believes we should get on top of the headaches (as we have pretty well) and in time the nerve irritation will get bettter as they have time to heal.

I think the thing that scares me the most is I know I wonr be able to lie flat and here in the hosptial I have the bed that is very psoitional so for the entire 4 weeks ive been here and the entire 3 weeks ive been back ive been able to sleep  upright (with my neurosurgeon coming in, in the morning commenting several times how uncomcomfortable I looked and she could tell) and so could take the pressure off of my hips and upper spine a little more. I am afraid when I get home the same thing will happen with laying in bed and pressure on my hips and on my upper spine where the catheter lays next to the thoracic spine. I hope it will go better and I hope even laying in my recliner will go ok, please say a prayer. .... I did talk to my Mom this afternoon and since I am going to stay by my parents for a week or so depending on how I heal my Dad is going to move my recliner to their basement/my old room-now nephews room and also going to go out and buy some of the really big pillows that have giant arms on each side to sleep againt to kind of simulate the hospital bed regardless where I sleep. My bed at home is a double stuffed mattressess and so difficult actually to get in when sore/not feeling well so this should work somewhat better - ironically my bed is otherwise awesome to sleep in when not sore/feeling crappy.

Otherwise my Mom and Sister are planning a 'coming home' get together and my mom is making one of my favorites so that should be fun and I am lookig fwd to it. :)
If you want automatic updatec sign up as a follow or email alerts.

Friday, May 25, 2012

Day 28 and 29 Post-Op

Day 29 Post-Op

Well im not getting out today which in all honesty didnt surprise me that much. Dr.Bragg 1st wantd to do the Aldurazyme infusion this afternoon (currently going) since we had it ordered and then tonight she wanted to try doing the Lidocaine drip as she wondered  if since the discomfort that came back last night in my hip, mid-back (thoacic spine where the catheter sits) and neck was worse at night if doing the lidocaine drip at night would help more/longer and in reality maybe it will since i'll likely go to bed shortly after it's done and those areas will have the night to calm down and rest while I sleep. we will see. She still talked abour discharge on Sat though so that is a good thing. I am unsure if she will order a anti-inflammatory drug for when I am at home given we know the long term healing process will be months and the anti-inflammatory could help the nerves. Otherwise I woke up to Dr.Bragg, her NP and my nurse standing right outside my room where there is an entry way and teasingly talking about me (Dr.Bragg has a funny sense of humor and by this point we sort of pick on each other quite a bit) :) and when she came in she commented how we have the strangest conversations which is really true and made me think of my sister who I also have some of the oddest conversations about in amonst actual things we are talking about. Ive had a headache on and off today so in addition to the oral med my nurse gave IV morphine through the port which knocked the level of pain down so atleast I was able to get in the shower and now typing this.

On a different note earlier this week I talked to someone that gave me all the contact info I need as far as holding a job and also keeping Medicare as before all the things I did where pretty much volunteer with all travel paid. I'll be able to work an unlimited amount of hours for a 36mo period should I stay with this Foundation that long and then make  up to a certain amount of pay. With medicaid its a bit more tricky but the guy I talked to said I would be able to work and if keeping medicaid would do a pay program where I likely paid $25 a month to keep it in order fort hat to supplement my medicare costs. It all seems reasonable and I am super excited to be working for this foundation and so far we've accomplished quite a bit it seems in talking to the 2 I work for on thurs. Which that in itself was quite interesting - I had the Cardiology resident (going to be an internits) in here first so she happpened to come when I was first on the phone so I asked if I could call back and that was fine. After the Resident left I called back and we talked for quite a while and then the actual Cardiologist came so I again had to hang up and call back. 1/2 hr later called back and same thing - then the Cardiologist, Resident, Neuro-surg Resident, and my Nurse came to the entry to my room (a sort of nother room with a window to my room and nursing stuff, etc.) and I stayed on the phone for about 10-15 more minutes and finally we hung up and got things started after talking. Definitely a pefect example of trying to balance multiple things in my life!  If nothing else since I could tell they all where interested in what I was talking about on the phone they got a brief education in MPS and rare disease outreach; what I am doing. :)

Will update when there's nore to write about or anything interesting going on. :)
 Sometimes no news is good news!


Day 28 Post-Op -
The Lidocaine dose/drip went fine; we slowed it down to almost 2 hrs and only problem was final flush and some sort of reaction to that rate w/uncontrolled jerking like movements very fast for a few mins and Resident + Nurse had to basically hold me to prevent falling off bed. Strange. Hopefuilly will get out tomorrow. Pain in some areas is imprpove while other areas the same (hips, mid-back are the same and not much improved when sitting up or standing but do seem improved  when laying down. At the same time the rediating symptoms also seem a little better.

Dr.Bragg's NP stopped by later thurs afternoon to ask a question and I in turn asked her a quesiton and we where talking for a while and she jokinly said that in cases like mine Dr.bragg always refers to us as the "patients that Dont follow the manual" ie my body doesnt heal according to the textbooks and so have to think outside the box in order to figure out how to deal with what going on and treat the various problems. Seemed like a fitting analogy and I like it - told Sue it would be one that id more than likely remember! I think in reality with MPS out symptoms are so 'outside the norm' so often that if we cant get a doctor who can think outside the norm than we'll never truly get a good answer and I think Dr.Bragg has finally brought the perspective in many ways that we needed to my care in the past year as ive said before!

This week especially my symptoms seem to ebb and flow so much - it is honestly a little scary not knowing what the healing process holds. Like ive said before it's hard when people are so peppy about it all and I hear what my neurosurgeon has to say - and not that she is giving up bc she doesnt and isnt in reality she just adjusts her approach. It's more that she even feels like there isnt alot we can do at this point especially if the Lidocaine drip doesnt work and that the healing process will just have to work itself out and that can take several months for the nerves to heal. Im definitely not giving up on this because I know it will get better because I have an awesome neurosurgeon and her awesome team as well as we've been through a similar spine-nerve damage issue before that took months to heal and I got through it and could still function albeit just in slightly different ways.  I do hope the symptoms like vision issue improve - I asked Dr.Bragg's NP this afternoon if she thought the vision issue could be secondary effect of the thoracic spine irritation and spinal shunt flow and she mentioned a few things but was going to talk to Dr.Bragg. I am curious what Dr.Bragg says when she comes by fri.. I hope she has some ideas...

Wednesday, May 23, 2012

Day 26 Post-Op

Dr.Bragg  stopped by early this afternoon and wasnt the most awesome news but she spoke to the Rehab dr she works with on many of her spasticity/muscle/nerve issue patients and which she had told me about yesterday. He beleives it will likely take months for this area in my thoracic spine to heal from shunt catheter placement and nerve root irritation. She said he felt it was likely from blood getting in to the nerve roots due to the irritation of catheter placement in that space that caused these issues.  similar to the issues we had with last years lumbar spine nerve issues. The good thing is, is that we got the lumbar spine nerve issues to heal pretty well so this should also heal well minus the only difference is we do have the shunt catheter in  the nerve area for good and will never have enough CSF there,
She also said she was thinking more about the lidocaine drip and my history of cardiac issues and so had a consult with the  Cardiology dept  for the lidocaine infusion.The resident from there came by and then the doc came by and after an EKG and labs (labs where fine minus low potassium so they had me drink some aweful concoction) and the cardiology consult they gave the ok. It definitely was interesting seeing this Cardiologist - a regulat adult doc approach to my issues vs my Cardiologist who has the adult congenital approach and so looks at the entire picture and how different issues affect each other. Im sure this Cardiologist is very good as he seemed nice it was more just an 'I could help but notice' type encounter while he was doing his thing. ..

Earlier Weds night we tried the actual trial dose of the Lidocaine IV drip which was done over a 1/2 hour in which I was hooked up to a Holter type heart monitor and pulse ox, blood pressure, etc + my nurse and the neurosurgery resident where in my room the entire time the infusion ran. It went well and the only side effect was extreme drowsiness as the infusion wore on and so by the end I was a little woozy and dizzy so getting up to go to the bathroom was interesting but my nurse helped and when it was done I just laid down for about a 1/2 hr and then it was pretty fine. I do think while it ran it helped with the pain and I can see how it could help if it is given over a few days to give the nerves a chance to calm down and heal. Tomorrow they are planning to do the regular dose and I am unsure if over a few days on and off or continous.  We will see.
                                             Resident - Mike 2nd year Neurosurgery resident
                                                      Evey - Nurse

 Dr.Bragg and I also talked about starting  a longer term anti-inflammatory drug for nerve roots inflammation but are going to see on that till the lidocaine goes. Her  Plan is she still  feels we should try to break the pain cycle (doesnt mean get rid of it just calm it before going home) so that the nerves dont become so over-inflamed again and cause permanent damage.

I will update when or if there is anything new - hopefully one of these days it will be a 'Im getting out of here' note! :)


Day 24 and 25 Post-Op - In-patient -

This was all written yesterday and in the days before - I will try to update later today after I talk to Dr.Bragg and get updates on whats going on. She did say yesterday she was shooting for the end of the week (yay!!) and her resident said this morning on his rounds they where working on arranging the Lidocaine infusion and would have to do it with cardiac monitoring.
Thanks for stopping by, if you'd like automatic updates please sign up as a follower or for email alerts.


Day 25  - 5/22/12
Just a few quick notes from when Dr.Bragg stopped by today. She tuned the VP shunt back down to the lowest setting and left LP at it's setting. 1.0 LP shunt / .5 VP shunt
She also is talking to a Rehab dr she works with on some of her patients to get his opinion; see if he has any recommendations as he does alot with her with patients with spascticity and muscle spasms.
She also is gathering information on Lidocaine infusioin which is typically done over a few days and every so many hours I believe.

                                                              Paedi-gav - 2nd valve anchored at collar-bone of VP shunt to provide  back-up perssure and prevent as frequent occlusions in catheter due to ventricle collapsing.
 This is a picture of what my Port-A-Cath looks like although obviously only one of these not the whole lot is implanted and is done so at L upper chest for the weekly IV infusions and in-patient procedures/stays.
                    This is a picture of the Aldurazyme otherwise known as 'Golden drug' due to it's                            cost per week.
                                   This is a picture of the medtronic-strata valve that is implanted both in my brain and tunneled down to my abdomen to the peritoneal area in which it drains as well as the same shunt is tunneled from my mid-thoracic area of spine down to lumbar area and then out of the spine on the R side and on R side the valve and reservoir are implanted under the skin and then continues in the tunneled fashion to same abdomen region as the VP shunt where it is anchored and drains.
                              Last this is a picture of the screws and plates in my neck a few months after the c-spine decompression surgery 3 1/2 years ago to stabilize the C2-C4 region of spine.

Day 24
Well I guess to look at  a positive side of being in-patient so long and in general being on the Neuro floor so often is that certain nurses will request to have me on each shift when they are on and I also can request to have specific nurses. This monring it was the nurse that has done my weekly IVE-ERT infusoion the past 2 weeks I had her during the day and tonight the nurse who requested me said she called in on her way in to work to request to have me and make sure I was on her patient list. I wasnt so she asked to have me switched. I think that is just to sweet and does make it a little easier knowing that  these nurses realy like me and I must be fairly easy going. :)

This morning  I woke up with the same headache  I went to bed with and which I had woken up several times and then I threw up several times and so the nurse gave me zofran and another med. It took til labout 1 this afternoon to finally start feeling a bit more normal although the headache was there on and off all day. Thankfully I only threw up the 4 or 5 times this morning. When Dr.Bragg came in this morning she dscontinued the new med and didnt start anything new. I was trying to read up on potential therapies for nerve muscle spasm irritation therapies this afternoon and had thought about botox injections already last night but felt yo crappy and frankly out of it this morning to rememebr to ask Dr.Bragg her thoughts. My day nurse Sally called the NP, Emily and she (Emly) talked to Dr.Bragg about if this might be an option for treating the nerve irritaiton and spasms but they decided that the root of the problem is the shunt catheter sitting in my thoracic spine rubbing on my spine nerves and so the botox wouldnt really treat the source of the problem. I am unsure what Dr.Bragg will say tomorrow but I am going to try and remember to ask her about the lidocainde injections she had mentioned last week when we where talking about diffrerent options to see if that is something we could try. Is worth asking.

Both the LP and VP shunts are now turned down to 1.0 due to waking up throwing up this morning and Dr.Bragg thinking this would maybe help the symptoms. I think it actually did which is awesome.

Sunday, May 20, 2012

3 weeks Post-Op.. In-patient

Last night we started the klonopin which I must admit I was more than leery about starting and I actually think other than maybe 1 time waking up for sleep meds I slept through the night - im not positive but  I think I did which is a positive step.  When Dr.Bragg came in this morning my nurse Amanda was here (one of  a couple of my favorites) and so she, Dr.Bragg and I all talked. Dr.Bragg is adding a day time dose of klonopin but prn (so I can take as needed vs scheduled) and 1/2 the dose I took last night. Amanda and I asked Dr.Bragg what she thought as far as getting discharged ie a timeline and she said if this went well she thought maybe a couple days.....

It has definitely been a long 3+ weeks in-patient but with starting the new med last night and if I can adjust to the morning affects and that goes away I think it will work really well to calm spine nerve issues secondary to where the proximal (1st part) of the catheter lays. The H/A's are well under control minus occassional short ones; and we have room even to adjust downward when we get the spine nerves healed and less irritable.  in respect to the H'As the 2nd shunt was a brilliant idea I think personally and we have room w/it  and even if it did cont to irritate the nerves despite medications to calm the nerves/nerve signals Dr.Bragg had said yesterday we could potentially pull down the catheter a bit if the irritation kept up although she also said there isnt a great place to position it as there just isnt alot of CSF anywhere in that part of my spine (is in thoracic area now) and placing it to far down in my lumbar spine we risk the catheter backing out of the CSF space as it did last year.  The rest will come and my nrsgn said if I do well with this new med maybe get discharged in next couple days!! I think the weirdest symptoms I am having for which I truly keep forgetting to ask her is a almost like light numbness in my fingers and feet even as I am using them like now. Still for now atleast I am chosing to celebrate that the headaches are better than before the surgery 3 weeks ago. I realize we traded one issue for another but we are making progress and I am confident, I have to be.

I'll update when or if there is more to share.

Sorry for lack of updates; the past few days have been pretty exhausting and today except for my parents being here I have slept alot although not completely sure why so tired. One thing is atleast other than an couple hour  short period this morning it hasnt been due to headaches I dont think. That is a positive meaning we still are just dealing with the mid-back catheter/nerve irritation. The one thing that has been newly sore and still I know the cause is my R shoulder (the side the shunt is on) and that is a same discomfort I used to get when I had the 1st LP shunt but in this case has been going on for the past 1 1/2 days although not sure why.

Really the only thing new is that we did completely take away baclofen as even at the 1/2 dose thurs night I had the blacking out episodes although in that case it  was more I kept finding myself sitting on the side of the bed and finally woke up dazed for good after smacking my lip (and I think the side of my eye which has been somewhat sore) on the corner of the bedside table. It literally was weird and down right strange and glad I finally woke up. My neurosurgeon had no problem stopping the med fri morning and wanted to wait till today (sat) to start a new med in which she is going to start one my Pain Mngmt dr also recommended and will do so tonight at bed as it is a 1x a day med. I am hoping it works. I had emailed her about the friend of mine with similar experirence as mine w baclofen and a same class med and in the email apologized (bc I do feel bad even though she has been a really great dr and never acts like im 'in her hair') for taking so much of her time and today when talking to me and my nurse Amanda, Dr.Bragg said I shouldnt apologize for her help over all this time and she never minds. I guess what else is she really going to say but in truth thankfully she is a good dr that is willing to talk to other drs of mine and doctos she knows in her circles and although I more than anything do not want to be here atleast she takes her time and is really trying to break the cycle of pain and get the spine/cathether area on a path to healing in order to prevent it from becoming a permanent problem.

Thursday, May 17, 2012

Day 20 In-Patient ... Almost 3 weeks

 I am still in-patient here on the Neurosurgery floor at UW and we have been ttying various different medications over the past few days especially to calm the nerve signals and to get the nerve issues in my mid-back under control before I can go home. We initially upped the Lyrica to 3 times a day and then after emailing my Pain mngmt dr she suggested 2 different possible meds for the spasms and so Dr.Bragg first tried Baclofen. We went with 3 x's a day at 10mgs but then last night while having a very interesting float nurse I apparently had some side effects. I woke up several times and one of the times I guess I walked out of my room and to the hallway where I stood for awhile asleep and when the nurses came and got me they took me back to my room and bed where I guess I fell asleep right away. This morning my day nurse tried waking me up as apparently the NA tried talking to me several times when I was looking right at her but then I would just fall back asleep as if I wasnt really awale (I dont remember any of these encounters really) and my nurse said it took her a while to get me awake. When I finally started to she asked if anything unusual had happened and I initially didnt respond and then sort of began to ask as if I did rememebr sleep walking/whatever it was and but didnt really complete the thought and she said "what sleep walk in the hallway?" and I responded "yah " or something like that but stil really dazed. It took like an hour before I really snapped out of the sleep 'daze'. My nurse and neurosurgeons + her NPs have spent the day trying to figure out what went on ie was it the baclofen or lyrica and how to rememdy the situation. For now they have cut the lyrica and cut the baclofen in 1/2. Headaches are actually pretty decent and I said to Dr.Bragg I really thought once we got the mid-back irritation under control if we could turn the shunt down a further setting that we would be really close to where I felt when we had the lumbar external drain in and I felt so well. Hopefully wel get there soon!

Yesterday (weds) I had the conference call with the individuals that run the Foundation which had asked me if I would be interested in working for them last weekend. The conference call went really well and I am really excited about the job offer. . Unexpectedly the pay is really well and although I would have taken the position even without any kind of pay I think it will be nice to have that extra income for little things or just for saving. I already have been doing this kind of work in a volunteer basis for the past 3+ years and even more so the past 5-6 years and it is very flexible with as many or as little hours as I like.  Right now I am working on  a database collection for upcoming MPS I research and then that will delve further in to specific information regarding the research. It really isnt to hard and more just transfering data from one place to another and taking the time to gather information from many different sources and sites. EEEEYYYY I still cant beleive I was this lucky to get a job offer like this, how did I get sooo lucky!?!?!?!

I have been actually very much jumped in feet fiest with this and spent close to 4 hours putting together information and data regarding mPS I and families and searching different locations from facebook, the MPS Forum, old sites and the Internet for names and informaiton. Generally I have inked the nformation down on paper to have a rough copy and then transfered it all over to an email but breaking the information down by which site I found as well as a few other key thngs. Ive exchanged quite a few emails with one of the individuals running this group and who started gathering the data as she sends me possible contacts and I send her back completed information.  I am enjoyingit!

On tues night as I mentioned I Emailed my Pain Management dr for her advice and she also emailed me back the other night around midnight and then an additional thought Weds morning which I passed on to Dr.Bragg and her NP's to which they came in this morning and said they had gotten the info. Dr.Bragg was also at a Resident/Attending Grand Rounds this a.m and the talk was on Neuropathic pain and GABA receptors. Dr.Bragg was really excited and she and /her NP are talking to Pain Management about some potential ideas including something addt'l with lidocaine (I think through the IV?) and Ketamine through the PCA pump as well as a couple of the ideas my Pain Mngmt dr thought like the Klonopin which is a neuromodulator as well and increases nerve signals to decrease pain.  She also mentioned baclofen and lastly but deep on her favorites it seemed was something to do with flavonoids which ironicaly in thinknig about it I believe flavonoids are in the supplement Genistein being used in some of the MPS pts especially MPS III and in some cases MPS I and II. I am thinking of emailing the dr that did this grand rounds as I am interested in his thoughts on this and MPS nad I have already pulled up his name to look at his research. He is located here at UW-Madison Dept of Anesthesiology.

Please cross your fingers we get this figured out soon as I would so love to go home very soon!!!!
Take care,


Tuesday, May 15, 2012

Day 18.. One door closes, another opens..

It was a bit if a terrible day emotioinal and physical wise as I wanted to be home so badly by my cats and had so many things on my mind I wanted/needed to get done (pay bills for instance!) and thinking about seeing my nephew(s) and friends/family and on top of we stopped the PCA pump. I totally had thought stopping the pump would go alot better than it did and it did not. Within I think a 1/2 hour I was miserahle and in such pain - not like when I was re-admitted but still really crappy feeling. and nauseous on top of ths I think because of the pain. My neurosurgeon happened to round later than normal so she saw me in discomfort and we talked about what we could change. They added a 3rd dose of the nerve-calming medication Lyrica, another med for muscle ttype spasms (ugh, totally aweful as muscle or something like jump without notice and sometimes twice in a row almost in opposite directions it feels like - yikes! They also on top oif the additional oral immediate release morphine left a IV morphine PRN for now.  I am so grateful my neurosurgeon cares, can read me so well and wants to get this all under control but at the same time I was sad as I just really had wanted to go home. I am hoping in the next day or so as it has been almost 2 weeks since I saw my cats and almost 3 weeks since the surgery. Even Dr.Bragg said today, something like "I know you just want to go home, right" when she asked a questioin. I also feel bad as I know my parents have a life and they have to work full time and have spent so much time driving back and forth to see me after work (an hours drive) after work during the week and weekends.) I am so grateful to have the parents I do and feel bad they have had to take so much time when I am very sure they are already tired.

I have been having a really hard time with people asking really often "when are you going home" or "why are you not home" ot "are you going home today" not because I know they dont care but just because I hate being just that girl with MPS (and yet I realize I am more than that) and even more I think I hate focus being on me, I have never as ive talked about before really gotten very comfortable directly talking about how I feel about my situation except to occassional people.  I think I also struggle with feeling like people think I should be home when I know it's really more up to Dr.Bragg and also I know I generally look better than I feel. There are a few people who are very good at telling when I dont feel well (Dr.Bragg and her nurse have gotten supreme at this) regardless of how I am dressed as they can tell from my face and eyes. I feel sometimes like im disapointing people by still being in the hospotal to, I dont know why but I guess maybe because even for my parents they really get to know only what I tell them regarding what Dr.Bragg is thinking and I am not always very good at re-expressing what she or other providers say.  I think sometimes I should ask Dr.Bragg would she call my parents in a conf call (im sure she would) to explain her thoughts and feelings to them as then I wouldnt have to feel like I wasnt doing a good job.(and even I dont mean to make it feel like my parents make me feel like im not doing good at telling them whats going on but I know they wish they had more information).  We will see I guess...

So I havent really talked about it but the advoacy group I mainly work with APFl closed as of last week and it has been kind of sad as this is a group I have worked with for the past 3+ years and which I feel like in some ways guided me back to realizing I was a person despite having MPS. Not that MPS defined me but just that I could do something also outside of my disorder and also in some cases combine these 2 passions. I had to apply for this position, get 2 reccmendations of which my Pain managemtn dr and another doctor wrote for me and I did a phone interview to get the position. I have loved that I got to work with APF according to my schedule ie some months I was super busy and other months I was doing alot more background advocacy (of which I loved to) and was jsut  a really great group of people from all areas of life; professionals, patients with pain, etc . My regional manager was right here in Madison, it was just fantastic. I worked with organizations like ASPMN-WI, UW-Pain Mngmt Coords., APM-coordinated a support group and also did a run/walk together and many other opportunities big and small. APF closed due to economic and other reasons and one of APF and APFANs employees wrote the statement/paragraph below and I just had to share as it applies to not just pain and APF but to ALL advocacy effotrs big and small everywhere.

“I am reminded of the definition of a movement.  A true movement is more powerful than just the people and organizations who partake in it. A true movement does not begin or end with any one organization or a group of people. A true movement lives on in the hearts and minds of those committed to it – spreading from one person to the next, strengthening over time.  And in that sense, fighting for the rights of people with pain is a powerful and sustainable movement with or without APF.  I have seen how passionate each of you are in your work and your support. I have seen the insane strength that so many of you have to fight your own internal battles with pain and simultaneously fight discrimination and the injustice of the pain world.  This energy amazes me every time I witness it.  This is the energy that feeds this movement  and makes it powerful and contagious.  I feel confident that this energy will move all of us forward to what we each do next and to exactly what needs to be done. Perhaps some of you will work together with new leadership, create leadership within, or perhaps join forces in other organizations, but all the while carrying the same, powerful intention - fighting for the rights of people with pain  - strengthening the movement.” - Elin (APF Manager)

As I think I think I mentioned yesterday in a different post I received a different oppotrunity through another group ive done a little collaborative efforts since last fall to work for their group and I have a conference call tomorrow (weds) with them to learn more and get details. I am really excited!  I also have been working on a resume and addendum to apply for  a  FDA Patient Representative position which is a position that patients can apply for to get involved with their particular disorder and patient advocacy and research awareness. I am super excited to try and get one of these positions. I dont know if I will but it sure cnat hurt to try!  This is hte link to the program:

More soon,


Monday, May 14, 2012

Day 17 Post-Op, New Opportunities, Otherwise not to much/

 Dr.Bragg, my Neurosurgeon just came by monday morning and looking at potentially weaning PCA pump  tomorrow - initially they talked about today but then decided on tomorrow more than likely as Dr.Bragg adjusted the VP shunt back down to the lowest setting (.5) and we all (she, the NP (see below) and myself) expressed concern would having turned down the VP shunt confuse the picture as far as any issues with going off the PCA pump and on to oral meds. I am unsure if we will turn down the LP shunt any more but the VP shunt dial down was un-eventful which is what we like! Generally it takes about 10-12 hours between turning down a shunt and seeing what effect it will really have on me has so about now is when i'd know and so far as said no issues with this change. The good thing with turning down the VP shunt is also that it does not affect my spine i-nerve irritation although the bad thing is, is that we have no where to go with the VP shunt now and any further changes will have to be to the LP shunt.  I want to ask them tomorrow if they have any suggestions for sleep (which ironically was so good last week, not sure if I was just so out of it?!) as with the plates in my neck I have for years really ben able to sleep in only 1 or 2 positions and now with the irritation in my mid-spine that further limits sleep positions. I am hoping they will have some suggestions and hoping even further more that the irriration and swelling in mid-spine nerves will go down and away quickly! It will be so nice to walk and type and bend over, etc without noticing the 'tension' (best word I can think of) from mid-spine down to L hip.

As far as getting off the PCA they want to give about 4 hrs at first on oral meds and see how I would tolerate it, ie would it be about equivilant in pain and would I be able to function through any difference while the pain heals. They thought a range of 15-45mgs of short acting med coupled with the pain patch I have on for 7 day periods.  My parents want me to come home with them after I get out of the hospital and to let them drive me anywhere (appts, store, etc) - I am unsure as I miss my Apt and definitely prefer to drive myself to appts, etc. I may stay by them for a few days but not give up driving. Since I mo longer drive stick shift I dont see why driving should be an issue with the back surgery and shunt placement. We will see I guess.

Otherwise I have been asked if I would be interested in joining a group that does advocacy for rare disorders and have a conference call on Weds regarding working for this group. I am really excited as ive done collaboratation with the group before regarding research efforts and a really extraordinary effort! I also today came across a FDA Patient Advocacy Rep positions for patients for their disorders for rare diseases and have been working on a new/updated/relevant Resume and Addendum to apply for a position doing this. I think it is just a PRN thing and sounds really near with efforts to be involved with research decisions with the FDA and patients/ representative groups. Cant hurt to apply! The last tiem i applied for any position was over 3 yrs ago for my Leader position with APF so I definitely had some updating to do! In between 3+ years ago ive been invovled in many things but non required actually applying. :)

I was supposed to see Pulmonary today and then Cardiologist on thurs at FMLH and CHW and so rescheduled Pulm and Cardiol. will see when Weds comes ie if I am out-pt will keep it but if still here in-patient will reschedule.

More soon,


Sunday, May 13, 2012

In-Patient day 16 / News

Yesterday Dr.Bragg stopped by and thought we would probably take off the PCA pump today but it turned out to be her partner on rounds this morning which was fine to. I may not have had good expereiences with him in the past but I think it has been moving fwd perhaps bc Dr.Bragg does trust and like me so she is changing his mind? Who knows but it is nice to feel less un-nerved around him. Otherwise Dr.Bragg just turned the LP shunt back down by .5 on Sat. and I am unsure what she will say but I kind of think we need to turn the VP shunt down by .5 as well.  Symptoms have been better though as has been the case when we get the headaches improved then the back pain/discomfort that goes down to my low back, hips and legs seems to get worse.  Dr.Ishkander today who is Dr.Bragg's partner said when he has delt with this 2 part shunt systems in the past it has typically been his experienc that they focus on solely the shunts (with controlling the other pain) and getting the headaches under control and the rest of the dicomfort comes in time. I am unsure but feel that is probably what Dr.Bragg will aim for as she had talked in the past about possibly having to move the lumbar to thoracic catheter due to not enough CSF in the thoracic space but we've not talked about this for a while now. I just want the discomfort and how it affects sleeping, etc to ease up soon! :) The LP shunt is now set at 1.5 and the VP shunt set at 1.0.

I have been thinking alot over the weekend about people giving their opinion of the choices ive made and make and I have partially come to the conclusion that while I cant change other people I can cont to go by my philosophy of  'One day at a tome' and when a situation doesnt neccessarily allow me to deal with a health issue(s) in the one day at a time fashion than I have to take it in a bigger picture and look at how will the situation affect my life further out without worrying about what others think. Many may be well meaning but I cont to be the only one living in my body everyday. It also doesnt mean I dont appreciate people who actually know me and care weighing in but there is a big difference between just being nosy and thinking a person knows best and actually knowing a persons whole situation and wanting to try to help.

I cant talk about it yet but received an email tonight from someone ive been communicating with in the MPS community and will learn more later this week but am excited! I am very excited to share the information and possible opportunity  to!

More soon, stay tuned. It has been almost 2 1/2 weeka in the hosptial so im curious what this week will bring! I got to see my nephew, sister and parents today and was completely AWESOME!

                                            Balloon (walking kitty) from my sis and Nephew)
                                         Out on the Hospital Patio playing Scrabble.

Friday, May 11, 2012

Hard but not impossible.. Day 8/14 in-patient/Post-Op

Dr.Bragg came by this morning as usual and felt that the nerves in my thoracic spine cont to need time to heal especially because there is such little space and there is so little CSF (spine fluid) so the catheter has little area and rubs on the spinal nerves in this area. She turned the LP shunt up to 2.0 and left the VP shunt at 1.0 but I am unsure what she will do with this information if the symptoms where o stay the same. I am unsure if she would just give it more time to heal or would she want to move the lumbar-to-thoracic catheter as she has mentioned previously. I just dont know yet what her plan would be or even how long before id get released from being in-patient.

Ive had several people ask me if this surgery to place the 2nd shunt was worth it, honestly I know people just dont get it bc I look fine and as ive talked about in the past I generally go out less when I dont feel well and I also go out mostly in the late afternoon as that is the time of day I feel best when there is shunt issues or even when there just wasnt enough CSF being drained. I dont know really know how to answer people's question on this bc yes, this has been a really slow progress and yes it probably does seem like to others ive not had progress but with having MPS ive learned to not always expect perfection with a surgery right away or even to expect an answer to health issues to be clear. Sometimes it's a few weeks or a few months (as was the case with my c-spine surgery, my 1st lumbar revision and spine surgery with Dr.Bragg last spring and even my thenar-tendon replacement surgery 1 1/2 yrs ago which  took a  long, time to get improvement and be able to use it pretty normally. With this surgery I dont think any of us expected to have to still be in-patient 2 weeks after the 2nd shunt was placed and have this on-going referred pain but I also know despite the ups and downs in symptoms that this shunt HAS made the overall headaches improved and made the 1st shunt (the VP) more stable as far as the intermittent occlusions and thus intermittent symtpoms of autonomic issues. Is symptoms perfect? No. Does it probably seem like nothing was gained to those around me? Yes, im sure it does seem that way. Was it worth it to me to have to go through all of this? I think so. I believe time will tell but I dont think I will regret it because I know despite looking pretty good to most people (bc the 1st shunt did work fairly well it was more that I had significant vision issues as well as issues with sleep and my shunts where failing almost on a every other week basis requiring shunt revisions nearly every month or in some months several times a month. Our hope is with the 2nd shunt it will take some pressure of the 1st shunt and make the 2 shunts work more in tandem and balance pressure equally thus have less shunt failures and need for revisions as 1 shunt will have less work to do bc of the over-production if the CSF along with the changes that MPS causes to the brain and ventricles with stiffness and compliance. I am as I tend to say a 1 day at a time person and I try to look at things 1st with how will this day be and how can I made this days issues better before I try to tackle issues that will happen tomorrow or 5 days from now much less a month or more from now.

I know alot of people dont understand my life and how I can look so fine and yet have these significant issues and frankly im not going to sit here and try to make someone understand it but I do wish if people where going to question me they could atleast try to accept my decisions and answers. I may not be right but I have a neurosurgeon who is the one behind my care planning it and talking to others in the adult and pediatric neurosurg field and so I generally most of the time feel comfortable with what she decides and gather information plus dont take decision making lightly.

I hope to those reading this you can understand if you yourself are not sick but know someone who is most people struggle with what they should do with their care and we really just either need support or someone who will stand beside us and kick some ass if we dont feel up to it but arent getting the care thats needed. On the flip side of that statement try not to underestimate a patietnts decisions and insread ask question (but not accusingly) in order to get more informed but dont question them as if they have no clue whats going on and are simply making baseless, ill-infomred decisions.

On a different note please say a prayer for a cousin of mine who was in a serious ATV accident and in a induced coma now due to brain swelling - he has a shunt (due to congenital hydro) and we pray he will heal well.
God Bless amd Be well,



Thursday, May 10, 2012

Day 7 re-admit, 12 days Post-op, 12 1/2 days in-patient.

Just another quick update, Dr.Bragg (neurosurgeon) stopped by this morning and just a few thigns. She opted to turn the LP shunt up by .5 to 1.5 which is basically in the middle of the pressure settings. She left the P shunt at 1.0. She also opted to leave the PCA pump in place atleast for now as she wants to give my body more time to heal and till we decide what the right step is ie adjusting the shunt settings or re-placing the lumbar-thoracic catheter to a place in the spine with less nerves. We'll turn either shunt up or down if needed though we mroe than likely would turn the VP shunt down if to many headaches as this doesnt directly affect teh nerves in my spine which are causing the radiating and at times excruciating nerve pain in mid and low back + hips and down leg.

She asked if I was having any symptoms like spasms (wich I am) and  I do have twitching like sensations in my legs which can be fairly annoying and not easily able to stop/control. She said she has seen this happen often in others of her patients with other conditions as the nerves re-awaken (I think that was what she said it was from) and we will watch it + try to control it as best as possible.  Otherwise not real idea when i'll get out of here.

My insurance Case Manager, Dr.Bragg and Pharmacy here are working to get my weekly ERT drug approved for here at UW and just a couple hoops to 'jump' through - that needless to say was much like banging my head against a wall thanks to the unit Pharmacisr as  my Primary Insur/Pharmacy benefit  was fantastic about approving it and Dr.Bragg really tried to push for getting it done. Her NP also tried to help with the Pharmacist today and commented how connected I was with so many people - to which I just replied I really thrive on things being done the best they can and being on top of my care which is only the truth! I appreciate as ive said before though that people can see I try hard to get my care well controlled and arranged to make it flow better.

Will try to update again soon,


Wednesday, May 9, 2012

Day 6 re-admit (13 days Post-Op

Balloons and gift from the Prince Family - Atlanta, GA
Today Dr.Bragg stopped by as usual and as planned wanted to up the VP (reictly in the ventricles on the brain) shunt to the same 1.0 setting that the LP shunt was at. Her NP came by a  little later and did this but it turns out the shunt was already at 1.0 likely from the MRI the other day although the Resident had checked it then. Regardless Emily, the NP came back a little while later/this afternoon after talking to Dr.Bragg and said that Dr.Bragg wanted to give it one more day and if symptoms where still the same from yesterday to today to tomorrow we would figure out the 'next step' although I am unsure what that would be. The only other thing I can off hand remember Dr.Bragg talking about was moving the lumbar-thoracic catheter of the LP shunt if that was still irritating the nerves. She told Emily and myself her focus is really on my spine and getting this to a less painful place as I think she feels that in turn will help the remaining headaches. I am ok with that as I know she doesnt make hasty decisions.

The oicture above is of balloons I got from friends of mine whose 2 daughters also have MPS I - they are from GA and their one daughter Savannah has had alot of shunt issues herself. The balloons and flowers in the background are from my parents.

I dont know alot so will sign off with this and update again tomorrow hopefully. Please keep praying we get a good answer and for Dr.Bragg in all her amazing wisdom not to get discouraged and the same for myself in all this.
Thank you,


Tuesday, May 8, 2012

Day 5 re-admit In-patient, 1 1/2 wks post-op/In-pt.

A Thoracic MRI  was done Tuesday night per my neurosurgeon to make sure the lumbar-thoracic catheter was in the correct location and not lying directly on a nerve or the dura. This was fine.
She (Dr.Bragg) turned up the LP shunt from .5 to 1.0 to give nerves in the spine a chance to heal and become less irritated and will turn up the VP shunt romorrow - weds to 1.0 to also give equal pressure on all fronts and try to get the nerves a chance to heal and hopefully less symptoms in spine, hips, down legs and headaches.

 Dr.Bragg wants to do one thing at a time so we know when something works and dont confuse the picutre, She did also say its possible these things wont resolve the picture and we will still have to go back in and adjust the lumbar-thoracic part of the shunt catheter if the symptoms continue despite the non-invasive things we are trying.
She has been great about staying on top of the residents and making sure if there are any questions they go straight to her even if it means paging her in the middle of the night as the majority of the residents have not been conveying things the nurses or I bring up. I dont think I could ask for a more caring dr.
.                                                     Shunt re-programmer

                                              Sally and I (nurse)

Student Nurses and I
Amanda (Nurse)  and I
Tonight I took a walk down to the cafeteria with the 2 nurses above (2 K's as I am going to call them!) This was nice and exhausting and these student nurses are very nice.,

I guess otherwise things have jsut been slow and trying to heal and find the answers to whats causing my symptoms and too why the symptoms are so variable. I am glad Dr.Bragg is so willing to go about this slowly and not try to do a bunch of things at once that would likely make me feel worse and confuse the picture but I think we all also cant wait to get a answer and feel better soon,
This is just a short update and will try to  write again soon,


Saturday, May 5, 2012

Day 3-4 in-patient, 8 days post-op

Still here at the hospital, Dr.Bragg had the shunt turned back down this morning to low pressure as headaches and vision issues returned in less than a day after re-programming the valve back to a medium pressure valve. With a little caffeine the slight low pressure headache improves. When Dr.Bragg came by this morning and asked hoe I was feeling plus commented that she could see by my face I wasnt feeling good and she thought we should turn the shunt back down + we would manage the spine nerve irritation by trying different medication approaches and also just giving my body a chance to rest and adjust to the new big changes. I dont know when i'll get out of here but she seems to just want to really wait and see and get ahead of the spinal nerves irritation and get the pain in my mid-back and low back and down to hips, and down legs. They have ordered a heat machine sort of like a heat pack but more diverse and loner lasting/more control I guess.

Yesterday I cannot rememebr alot of what went on other tthen what I blogged about and some very, very weird conversations where I completely didnt make sense and gave the people on the end a good laugh. Good storeis for the future im sure.

I'll add to this later if I think of anything, im sure I am firgetting something.
Thanks for stopping by - if you want automatic updates, sign up as a follower to the right of this blog entry.


Nurse (Sally) and I
                                            1/2 out of it
                                                  Medtronic Strata Valve re-programmer

Friday, May 4, 2012

Day 6 post-op, Days 1- 3 re-admitted.

5/4/12- 5/5/12

Last night and todaty have been filled with odd, off inccidendrdl Since I was in so right in the much pain last night the nurses let me take a shower just so I could sit there and try to relax and I ended up falling asleep for like 20mins, which ended up doing my body good but woke up when the nurse came in to check. Today, thurs I literally was falling asleep righgt in the middle of conversations or sittig on the side of the bed I came close to a few face plants due to basically falling asleep so suddenly and then staring myself awake of the nurse or aide would pass by and come gently shake me awake so I didnt in fact fall over. When my neurosurgeon and her NP came to reset the LP shunt reservoir to medium pressure from the low pressure I apparently fell asleep as soon as I laid across the bed. Or I would wake up and be confused where I was for a minute till I re-acclimated. Very strange day! Nausea and vision  have been pretty

Nothing has been to exciting, just frustrating and feeling very badly, will try to update again soon.


So this was originally intended for at most a couple day re-cap but has now turned in to a 'tues to thurs' entry due to so much (and yet so little going on). I called the Neuro-surgery resident on-cal weds night and he gave me the option of either going to the local ER and beibf trasferred to UW, going to UW ER and be admitted or coming to Dr.Bragg's clinic in the morning. I chose coming to her clinic in the morning. So my Dad took me and once in Madison I called to verify it was ok. Turns out the Resident had never alerted Dr.Bragg or her team of our phone call and so they got me in at 10:30 plus Dad and I  waited around in Madison. Dr.Bragg thinks the Shunt catheter which is
threaded up in to Thoracic spine (the mid-portion of ones spine connecting the cervical and lumbar regions) is likely part of the problem and may be irritating the dura,  and CSF pressres not equalized between 2 shunts so while I have good headache relief and even good vision improvement it may be that we are draining to much, to fast. of the cerebral spinal fluid (fluid that surrounds the brain and spinal cord, acts as a cushion). and the nerves are getting swollen or irritated. She isnt sure why the other discmfort in legs, hips (low back would be from surgery) but could be referred pain or from one part or another of the surgery as tjey seem to be fine.

Because there could be to much pressure draining, to fast could be affecting the dura (lining of the spinal cord) where the nerves branch off/lie we may need to re-program the LP shunt to a higher setting atleast for a while to allow body to 're-calibrate' and adjust to such drastic pressure chances between the VP and the LP shunt and in hope they in a sense work better together vs one shunt doing more pressure relief than another shunt. She on thurs (see above) adjusted the LP shunt back to a medium pressure to see if that is the problem, She opted to do  a PCA pump for IV opioid (dilaudid to start and if needed will switch) + an anti-inflammatory and Valium which is often used in pain management to calm the nerve signals down. Dr.Bragg has already said we will play around with this till we can break the pain cycle and change out to other options for relief if needed/not working.

Her nurse, Lisa, talked to the floor nurse who is assigned to me today while they where preparing a room for me back up on the Neurosurgery floor and this happened to be a nurse ive had a few times in the past. When she called me to let me know what room I was going to be in she (Lisa) mentioned my nurses name and said the nurse had told her she'd had me a few times before. and Lisa told mme she (Sally) sounded really nice and that she was happy I was going to have  a good nurse so she wouldnt have to worry about my care. I thought that was incrediby sweet!

I will re-update in a new entry when there is something new.
Thanks for keeping up with these rather long posts,


Thursday, May 3, 2012

Home on tues, swelling/pain, On-call Neuro Resident.. and so it goes..

Another of my many day updates so bear with this being a little scattered. I am home as is detailed below in other day updates but it has been a bit rocky ie up and down pain, swelling, nerve pain and muscle spasms wise. I think I do an incredible job of blocking out how bad previous spine surgeries have been and with the hip issues I have nay swelling in low back also makes that discomfort much worse. I got home tues night and actually slept fairly well, almost to well as Weds I woke up and was so uncomfrtable I could barely roll out of my bed (a double matterss on a taller frame so not ideal for this kind of situaiton although is  very comfortable otherwise) and the was day just didnt get alot better. I was up for a few hours then went back to bed for a few hours and spent the rest of the day still in my pajamas moving from deks chair, to trying to find a way to be comfortable on my bed, to living room chair and back mostly to my desk chair. Last night I fell asleep early again, around 9:30 (early for me) and woke up around 12:30 in even worse pain that no matter what I took (MSIR, dilaudid, lidoderm patch, heat pack, ice pack) I couldnt sit or stand or lay without agnozingly bad spasms in low back, hips (who even knew that was possible!?) and down L leg.

I cant even say how much pain med I took but finally called my Dad around 2:00ish and then the on-call Neuro-Surgery resident bc nothing, nothing, nothing was helping and I was literally pacing from one side (shuffling) of my bed to the lenght of it and back over and over and over for over an hour as nothing would help and everything else made it 30x's worse. The on-call resident said to either come to the ER there and they would admit me or I could be direct admitted to the general care floor or go to the local ER and be transferred to UW. The other option was come right away when clinic opens this morning (between 8-8:30 and see Dr.Bragg plus likely be admitted but maybe something else could be done. Since the resident and I both agreed the ER would be slow and wouldnt be any faster I took more pain med, somehow managed to get in to the shower (interesting feat for sure, should win some kind of ingenious award!)  and stood there for no less than 30mins and after managing to get back out I took atleast another hour to get dressed and laid down on the couch (much lower although presents its own issues!!) and managed to fall asleep while the shower heat worked for awhile. I am here now writing this at 5:30 with pain returning especially in mid-back where I wonder if eithe the catheter from lumbar portion of shunt is aggravating nerves or if some kind of over-draining/issue in that area. I am super tired and barely see straight but ironically it is just a tired blurriness and not the 'to much pressure, shunt not working right' pressure blurrines'. I can tell I have a bit of a low-pressure headache which just started in the past few hours and makes me think the shunt is leaking or draining to much but hopefully will get better. I am going to shuffle to the kitchen and get a soda as that may help. Hopefully I still have some!

I know its likely thinking how can she be writing this if she hurts so bad but it's almost therapeutic to write when I dont feel well and is a distractor - one I desperately need as I am admittedly a little worried. Even a few times ive when drinking or swallowing something swallowed it wrong (not to uncommon I think I couldnt go a day without swallowing something wrong) and that coughing along with so many other otherwise little things aggravates the bejeezus out of the muscles and spasms/pain. So not fun!

I'll update when I get home from the Appt.,


Yesterday Dr.Bragg ok'd turning down the shunt to the final low setting (.5) and so her NP came by again with the Medtronic rep and they proceeded to try to turn down the programmable device again. They dont know for sure but think that the setting may in fact have been at 1.0 over the weekend instread of the 2.0 they thought it may have reset to. That had something to do with the re-programmer they where using was new, and not very clear + an actual confirmation # doesnt flash up the device just stops at whichever # the person sets in. So anyways yesterday they turned it back to 1.0 thinking it had accidentally been turned to high 24 hrs before. Later on Dr.Bragg stopped by after she was done with her surgeries and we talked for a bit + I had been a little frustrated before they walked in trying to do sometihng on the computer and just with not being able to see clearly so she said they would instead of waiting till next week go ahead and turn the shunt down the final setting. That was done fairly easily this time. I still wanted to go home so they let me and had supper at my parents and now am back at my Apt. Sleep last night was surprisingly good minus waking once to go to the bathroom and this morning being so sore I literally could barely roll myself out of bed (I do have a high double mattressed bed so takes some effott getting in to but otherwise is soooo comfy) and reaching down to get anything or move normally just isnt happening yet., If possible I think the past couple days have been more sore than the previous 3 days after surgery! I fup with Dr.Bragg next thurs since I missed ERT this week and there isnt a nurse available to do it now (which is probably ok as id have to drive down to CHW) and it's easier to see Dr.Bragg on thurs then try to fit it in in Madison before or after ERT in milw on mondays. 9

I thought it was incredibly sweet of Dr.Bragg's NP we where talking about the past year and where my shunt care was before I started seeing them, the circuitous route to how I got to seeing Dr.Bragg and my underlying diagnosis + that plays in to it. She after we talked for awhile said something about how Dr.Bragg has this small handful of pts she really worries alot about and thinks alot about and that she (the NP) knew how much Dr.Bragg really cared, thought about my situation and wanted to help as best she could, in not giving up. I think that came up bc I had said something about how it is still scary sometimes even though I trust Dr.Bragg and her team that I cant help but worry when the issues are so on-going she will get frustrated and not be able to help and that I will become a patient who takes to much time already. I know its kind of irrational thoughts and I dont think about it very much anymore but I guess with my past neurosurgeon, the road blocks between him and seeing Dr.Bragg, the on-going shunt complications we've dealt with and the fact that I do get such great periods of feeling AWESOME + she (Dr.Bragg) truely is one of those very awesome providers that has added more than she could probably ever realize to my team and care. (answers, certainty, better communication, trust, etc) I guess it was nice to hear the NP say that they as a team really liked working with me, as a patient I dont require providers to like me or even tell me positive things but i think most people would agree when you spend so much time with a provider it is nice to know they dont think you are a pain and that they do care beyond just the 15mins you might see them in clinic. :)

I  can say this has been one of those hospital stays and up and down emotional few days that really can take a toll on a persons psych. In reality it has been good it's just I think more that ive been here at UW so much over the past few months (and year), I feel like I know some of these nurses and staff better than I do some of my friends and its hard being somewhere that you have so little privacy or self-decision. By self-decision I really mean anything I take for granted at home isnt always easy-peasy here. The rooms are private so it's also not as if I have a roomate to deal with but sometimes
you still here every little noise and dont have the little self choices like when to take meds, when to eat, etc., etc. I dont mean to complain because I get along with the majority of the nurses on the floor very well and have gotten some that even request me when they see my name on the schedule I think its more you just get tired and feel like your doing the same thing over  and over although atleast we make progress and isnt a stalled ship. :)

I had asked Dr.Bragg when she stopped by this afternoon about if having that 2nd VP shunt valve is affecting how much CSF is drained via the VP shunt. She said if it came to it we could think about removing that but she thought it was doing more benefit than harm as we originaly placed it to prevent the intermittent ventricle collapsing by increasing back pressures. She did say it's possible we could go to a less resistant LP shunt valve or even as a few cases she has had have done well with; not having a valve in the 2nd shunt at all to create a continous flow drain. With that she would still place a reservour though as she said we want to have easy access to testing the actual shunt function.  Right now I dont think we have to worry about any of those things but as has been our case all along Dr.Bragg likes to have options and ideas ahead of time, I appreciate that as I am a information kind of patient and when I know something I can feel ok with it.

She also brought up that as she often says we've gotten more of these episodes of sheer good symptom relief especially with each of the external drains (VP and LP alike) and we would keep making changes till we got as good of relief of symptoms internally as we do externally. She didnt want me to get discouraged as she had options and we werent going to give up. Another quality I appreciate about her, very personable but also tenacious in seeking answers for her patients and yet she isnt careless about it, she reaches out to her former colleagues where she trained, to her current colleague and to the Pharma companies that manufacture these shunts to get input.

One other thing she told me after surger fri was with the LP shunt when she placed the distal-peritoneal catheter she used a different brand then the medtronic-strata and I cant remember if she said it was shorter or she cut it shorter but just said that a long distal valve increases resistance of CSF fluid flow in Hydrocepalus shunts. She made it shorter so that to would be less resistance for CSF to get past. I dont think she used a 'Y' connector to connect the 2 peritoneal catheters but I also know that isnt always done.

I had. had to be cathed by the nurse on Sat as I couldnt go on my own and also had to lay flat for the 24hrs but then when I could get up Sat night was fine. Turns out though as is so often the case I guess bc of the nerve-bladder issues I got another UTI with symptoms starting sun. This one is another of the drug resistant bacteria I was originally on  Cipro and then switched to  Levaquin antibiotic. This is the same antibiotic resistant bacreria I had a couple months ago and for which everyone has to do isolation measures at UW and yet all previous UA's between that last infection about 2 monrhs and 4 surgeries ago and now showed clear! Makes you wonder where that bacteria was lingering??? I have no doubt the tests where clear as they where done before each surgery as part of pre-op and then another time to double check it was cleared. Weird!

This is a article on programmable shunts (specifically Codman and Strata) and household magnets.:

All for now,


                                          Swelling on monday

                                                    Lumbar incision