Tuesday, September 27, 2011

1 1/2 weeks post-op / how it's going

So ive neglected any updates what-so-ever to basically anybody over the past 1 1/2 weeks - last week I spent parts of several different days by my sister and nephew (5) and niece (9mo) but otherwise really didnt accomplish alot other than a few trips to the grocery store and pretty well avoided any phone calls as much as possible. I just wasnt in to talking to anubody yet other than those who already knew what had went on. In other words last week still kicked my arsh from the previous weeks surgeries and I pretty well ended the entire week adjusting to the new shunt. healing the incisions and being low key. Today I woke up about an hour and a 1/2 early thinking about my life and just how surreal it feels much of the time - alot like some of the stuff seems so like it 'happens to someone else' that even though I am experiencing it and in the case of all these shunt problems while it is very real it is also very surreal. Maybe thats a good thing I dont really know - maybe the ability to think about it little by little and not let it all stop me from pursuing those things im interested in is good but then on the other hand maybe  I have such a difficult time talking about "how I am doing" bc it still doesnt always feel like it is happening to me. I know thats probably maybe not normal but surreal is exactly how it does feel much of the time - real but surreal!

I follow up with my neurosurgeon on thurs to get the staples and gauze taken out of my head this coming thurs and removed the dressings and tegaderm from my stomach and side incisions over the weekend as it was getting pretty darn itchy. The 2 stomach/side incisions seems to be doing really well - pretty uncomfortable when I lay down (propped up) at night and where my bra sits on the R hand side it seems to rub right on the catheter which literally is a pain and not all that comfortable. When I lay down at night this same areaas well as the abdominal/stomach incision are what cause pain but I think it may just be bc the catheter sits so close to the surface of my skin and there wasnt much fat for my neurosurgeon to tunnel under. Since ive lost like 6-7 pds on an already thin frame in the past month that really hadnt helped this shunt palcement/tunneling. There appears to be some fluid around the abdominal/stomach incision catheter incision as well although this may be normal and may go away so im not particularly worried about it. The remaining fluid at my lumbar incision where my neurosurgeon cleaned off excess/built-up CSF during the VP shunt placement hasnt absorbed yet and this is very noticeable though a very small amount of CSF as a pressure feeling on my back and back pain/discomfort. Im hoping it reabsorbs soon! Ive not had botox in close to 6 mo (normally every 3 mo) in my mid and upper back/neck as well as not being at PT for about 2 mo now due to the surgeries and other things so between that CSF build-up and the other 2 factors my mid-back pain has been worse again but I think with restarting PT soon this may help and I cont to stretch out each day which helps it from being worse.

A for how th VP shunt is it definitely was not a quick fix like the LP shunt revision/back surgery in may with this same neurosurgeon ie while my headaches where gone due to the EVD (external drain) having been in for 4 days I did have to adjust to the shunt placement and new mechanics which took about 3 days but by monday afternoon I could notice a noticeable difference though not perfect. It also took till mid-week to get GI system back to a more normal from the increased pain meds and anesthesia and that I do think has a significant impact on the shunt. Being on a new pain patch vs oral long acting pain med has also helped and I generally only take 1-2 of the immediate release pain med nowdaily. It all combined to having a more normal GI system which is great - not perfect but still great and better!! By late last week I also seemed to be acclimiating to the new shunt location even better and by this morning finally having less headache when I woke up in the morning. (when my neurosurgeons nurse called me early last week to pass along a message from my nrsgn about my dr wanting me to know I could wash my hair if I covered the incisions w a dry wash cloth (they still have the gauze type stuff to over sutures and held by the staples) she asked how I was doing and we talked about a few things - I asked her if the morning headaches where just something that ones body acclimates to and thus get fewer and shorter lasting headache in the morning she said definitely and that she wuld expect within a few weeks I wouldnt have the headaches when I wake up. Yay!! I would be lying if I didnt admit then when having something new put in ie the initial LP shunt 4 or 5 years ago and this VP shunt 1 1/2 weeks ago I dont have atleast one moment in days when the surgery incisions are still healing and body still adjusting that I wonder to myself  "will these side effects/surgery symptoms go away this time?' or "Did I make the right decisions doing this surgery?" but inevitably I usually end up adjusting fine and when the surgery ends up being a bit benefit then I know again I made the right decision and worth whatever intial pain came with it. I think sometimes it's just the hard part when answers arent always clear or even in this VP shunt case when we knew from the EVD that my symptoms cleared up dramatically and that a VP would likely help that you cant help but still second guess bc your still dealing with adjustment to something new in your body and big or small figuring out how it will or wont affect you. You also with any of this surgeries deal with so much discomfort to in turn feel good but sometimes when you do feel bad it isnt that easy to know if you made the right decision. In any case I am glad my neurosurgeon too her time, gathered info and that we are at this point in this post-shunt surgery and hopefully the last shunt surgery for a long while. 5 in one summer was definitely enoughh in my book!

On a different note we are headed to the Mississippi this weekend for 4 days, myself, my parents, my sister and her family (4) and my brother and his family (3) - should be fun and chaotic and since it is my parents 30th anniversary, my brothers and sister in laws anniversary (4 years I believe) and my nephews 5th b-day I am betting we will have a great time!
Will update on thurs appt sometime soon after or next week.

ps i'll also update pics from the APMwalk/run this past sat in West Allis which proceeds go to APF and so myself and my regional manager who happens to be here in WI both attended. Was a fairly nice morning and a good time. :)

Monday, September 19, 2011

In-patient 8 days, 2 surgeries, Post-op (2nd) 3 days; Home 1 day

The title of this about says it all - ive been home since yestterday afternoon and each day is getting better soreness wise and head discomfort wise as well. I am sincerely glad it is not a week ago at this time as without someone telling me things that happened or without reading my blog I have very little memory of the little or even many big things other than sat night and sun where terrible, I ended up in the ER and from there they sent me by ambulance to my neurosurgeon at UW. Monday the Neurologist came by that my nrsgn was working with on my case and afterwards my neurosurgeon and her NPs also stopped by and a few visitors that day as well. I totally dont remember monday night or much of tues other than being very tired/drowsy and being hungry on tues but not being able to eat due to the surgery being later in the afternoon. I know CT scans and Xrays where done both at BDCH and at  each done multiple times throughout the week again atUWHC and I can remember a tiny bit of talking to my neurosurgeon and the anesthesiologists before tues nights surgery but I cant remember the conversation with the neurologist or my neurosurgeon or the nurses on monday or at other points tues. Definitely a weird feeling to virtually remember nothing of the week up till finally thurs I remember more when pressures started to even out due to the EVD and my neurosurgeon had an idea of what she would place for a shunt and where. I do remember her saying to me fri when she stopped by the 2nd time before surgery (or it may have been thurs) with 1 of the 2 NPs that she wanted to bring the NP back just so she could see what an amazing difference there was in the 3 or 4 days since the EVD (ventricular drain) and ICP monitors where placed and the reservoir and catheter un-kinked after having been flipped over + tied off. I sincerely hope to not be that sick again for a very long time (forever would be great!)  and I think my neurosurgeon, my family and myself most of all where simply amazed by just how disoriented in a way I was from the pressure building up so quickly seemingly as before the shunts atleast seemed to function somewhat/intermittently ie enough to take off some pressure so while I had headaches/pressure and nausea, etc I didnt have continous vomiting and wasnt so drowsy I could barely carry a conversation for 5 mins at many points.

The shunt now is I think doing well and I am adjusting to the new location and different mechanism (route) for relieving the pressure - amazingly so far since the LP shunt has been tied off I also have not had mid-back pain which is awesome as that often went down in to my hands. About 1/2 way through today is when things really seemed to change even better ie pain better controlled with less med and movement doesnt make me feel the sudden changes. The incision in my belly is impossibly uncomfortable to sleep on or touch yet but the shunt catheter route down my R neck and into my chest isnt very unfomcortable which is the area where my neurosurgeon had the most difficulty passing and tunneling the tubing due to my being so thun and so little extra tissue to go through. This is still quite bruised but no hard to move my arms or hard to have clothes against. The sorest is probably my R forehead at the area where the valve sits though really it isnt even the valve area it is the area to the side of that covered in a wet-resistant gauze and stapled to my head that is most uncomfortable probably muit-factorial due to incision and due to the staples in multiple locations. This goes back behind my head and ends up behind my ear where another incision is and also covered in gauze and staples and very uncomfortable to any touch and then down the neck. Just like the Port-a-Cath tubing the shunt is noticeable if your looking and not well hidden but im not so sure the average person would really notice it just is slightly bigger than the Port tubing and also under the skin.

I talked to the nurse today who as always is sweet as pie and we scheduled follow up for a week from thurs when the gauze, staples and sutures will all be removed. In the mean time though the paperwork said not to wash my hair till 5 days post-op I couldnt take it and carefully, mildly washed out my hair as best as I could today as with my thick craziness for hair the dry shampoo does nothing but make it look worse with that much surgery stuff soaked in. I have a few bandanas hich are tie behind my head and when I go out in publicc minus for little things i'll tie one of those in my hair to semi-cover the very notieable gauze bandage on front of head. The other incision and gauze are pretty well covered by my hair. Sleep has been hard as if I lay on the L side propped up I get like an ear ache but the other side is to sore and I cant take laying flat due to breathing issues and some right now the headaches adjusting so I try to sleep propped up as much as possible.

I spent today over at my sisters who lives about 15-20mins away and with my neice and nephew and just chilling out - I skipped ERT which means no infusion for 2 weeks now due to the sudden emergency admit last week so am hoping to maybe be able to make that up later this week but if not i'll go next week. I have to try and work this out for this week with my GC. Otherwise other than our walk/run for APFAN on sat in Greenfield which I and my regional manager are working together to have our materials available and since the proceeds will go to APF. The rest of the week really is quiet so far and so will be plenty of time to recoup and rest. My goal is to stay healthy for as long as possible from these shunt issues (as I think is my neurosurgeon and her nurse as she (dr) made the joking comment to my parents after last fri's. surgery she hopes that we'll be able to restrict seeing each other to 1 appt a year after this. :) She has jokingly made the comment she owes me a summer but in all reality im just grateful for her help and for having had her to champion getting the shunt issues fixed and continuing to believe me throughout so much!

I'll try to update a few other things soon,
Thanks for the prayers and well wishes,


Saturday, September 17, 2011

In-patient 7, Post-op (1st) 4 days, Post-op VP shunt - 1 day

Well surgery for the VP shunt was yesterday about 1:30 and as with these previous surgeries I was completely awake in to the OR while they placed all the monitors, oxygen mask, and set-up. Once this was done they used the mask for the general anesthestic vs using a sedative before I got in to the OR and my being loopy. I dont love the loopy sedative and appreciate that the anesthesia drs and my neurosurgeon are ok with my being awake right up till they start. Anesthesia itself went well with the camera scope being used just as it was tues and with other surgeries. In total the surgery took a little over 3 hours and consisted of removing the ICP and EVD monitors from my ventricle and brain, placing the VP valve and tunneling this down the back of my head and back around my ear down the back of my neck to chest downward to peritoneal (stomach) area. According to neurosurgeon this tunneling in my neck and chest was difficult due to very little reserve bc of how thin I am and little fat so that took a little longer and the tubing is noticeable but then again so is the Port-a-Cath tubing on the other side of my chest albeit the Port-a-Cath tubing is smaller in size it appears. I dont have a cap on but have a gauze type cover on the valve incision at top of my head and this is stapled shut then there is more staples behind my head w/more gauze type stuff and more staples behind my ear. With the incision in my stomach my neurosurgeon had hoped to detach the peritoneal catheter tubing from the LP shunt valve and re-attach this to the new VP catheter but she ran in to to much scarring and could not locate the LP peritoneal catheter and so had to completely replace the peritoneal cathether.  She said it isnt a problem to have these 2 sets of catheters in that area.The LP shunt is also tied off at the valve side of the shunt in addition to the reservoir side of the shunt now to. . Lastly she cleaned off the CSF fluid that had built up around the lumbar incision cathether of my LP shunt and the last remaining small amount should dissolve on it's own. She opted to leave in the LP shunt but tied off in case we should ever need to go back to it and this way she wouldnt have to place an entirely new system and She left the LP shunt in place bc if we ever need to go back to it and given the difficulty and amount of scarring in my lower back where the shunt begins.

Interestingly last night I could actually feel the shunt valve working it does sort of a tapping thing I assume as it's letting fluid out - very strange and at first I was totally like what is this but then I realized it was likely the shunt valve and is kind of curiously, weirdly, fascinating.   Today nrsgn has ordered imaging which include both CT scan and shunt series - i'll update when I know anything new but so happy to be this weekend and not last weekend! Also very grateful to this neurosurgeon for recognizing last weekend what even I didnt rexognize with the LP shunt and though I dislike being in the hospital am grateful for her care and help in this all.
Take care -


Thursday, September 15, 2011

In-patient 5, Post-op 2 Pre-op 1 Final Shunt fix???

I cant believe actually how many people have visitied today and commented how different or how much better I look from just a couple days ago - my neurosurgeon stopped by this morning and was extremely happy and ive had 3 visitors since then 2 of whom saw me earlier this week and all where just amazed the biggest thing they said was I am less drowsy, more like my normal self and brighter eyes - it is funny how often this summer ive gotten the comment from friends, family and providers that they can always tell how im feeling by my eyes - something I guess ive never noticed. The other day I received balloons, a new cat to go with the ones my parents have bought each of the 3 previous surgeries and earrings today, cookies, movies, lots of candy (HA! everyone knows my sweet  tooth!!), a yahtzee to go amongst other things from my sister :)  as well as flowers, (not allowed in NICU but the nurses and my Nrsgn both pretended as if they arent here since I should be back on neurosurgery floor tomorrow) also received an e-card from a  friend I met last spring who works at my Pain Psychol. office and tons of fb messages. Thank you everyone! Im amazed how bad I felt the other day and that I didnt realzie it was the shunt but yet my neurosurgeon knew it was and was her usual brilliant self and had me sent to her hospital and admitted. I'm also amazed how little I remember from sunday, monday and tues - totally crazy the things they keep telling me nothing bad just things I dont remember - I can barely remember who visited.

So the plan is my neurosurgeon did another CT scan today and has surgery scheduled for tomorrow at 1:30PM and will take out the ICP monitor, the EVD (external ventriclular drain - (one sits in the ventricle and one sits outside the ventricle in what is called the parenchymal space) and will tie off the LP shunt (already tied off at the reservoir side which sits closest to my lumbar portion of shunt) at the valve (sits next to the reservoir but on the peritoneal (stomach) side of the shunt and then leave the LP shunt in place in case we ever need to go back to that. She then will place a VP shunt with a medium pressure valve and tunnel this down to the existing peritoneal incision and connect the new tubing to the old catheter after double checking the drainage. (which should be fine since she just fixed this about a month ago). She also will drain off the fluid build-up around the LP shunt - a bubble that has been present since last week - she said some may still be there for a little while but she will remove as much as she can. Sounds like a lot for 1 surgery but in all ties together relatively well and hopefully shouldnt be to bad. I'll update when I can. Pray  for anesthesia to go well - the anesthesia folk stopped by tonight and said they had reviewed past records plus planned to stick with the camera to place the breathing tube give the troubles the other anesthesiol. have had with these previ9ous surgeries even with the scope.

Thanks again everyone for the encouragement, words of support, prayers and all around for all the sweet gifts and cards from those close.


Wednesday, September 14, 2011

In-patient day 4 Post-op 1

Surgery yesterday turned out to be at about 7pm and everything went fine including intubation (thankfully - thwey used fiberoptic) and the placement of the ICP and EVD drain. When my neurosurgeon got to my side incision at my LP shunt she found that the reservoir was flipped over and she believes this was kinking the tubing and why I was so sick over the weekend. She re-situated this and ties off the shunt so no ICP would get through. I got back up to the NICU floor which is where i'll be till this EVD and ICP are removed. I cannot get out of bed without a nurse helping due to all of the monitors and wires and they have to re-calibrate the EVD drain height everytime I sit up or move. Needless this part is less than thrilling!

My neurosurgeon stopped by earlier with 2 of her team and said depending how I handle this she'll likely take out the drain, remove the LP shunt and place a VP shunt on fri. Tomorrow she is planning to do a few brain compliance testing with fluid to see how I handle this.

Ive had quite a few visitors and as well an e-card, bunch of balloons, visit from one of my pastors, my parents have been here every day since sun and the Pain Coord I work with through APF has also stopped by everyday. Non-the-less I CANNOT wait for this drain to be removed it irritates my head so much it's ridiculous everytime I move it moves a little and rubs.That and the pressures tend to drop very low at times which results in love pressure headaches orherwise really my 'normal' pressure headaches are no longer here which is nice!

Will update when I know more,


Tuesday, September 13, 2011

Shunt surgery later today, visitors at hospital

Just a quick note about today:

My neurosurgeon just came by and she is thinking 4:00 for the surgery, she will tie off the valve/reservoir of the LP shunt and place the EVD and ICP monitors in the OR. They will then test adding saline water to see how brain complies despite stiffness and also how it complies taking away fluid. She is thinking fri for surgery probably a VP shunt if I handle this well and she will also then completely remove the LP shunt in that surgery. otherwise we will figure out what to do with the LP shunt.

Deb Gordon visited this morning and we talked quite a bit about her moving to Seattle and also talked about today and this week ie surgery wise. My regional manager for APF also stopped by with yummy looking cookies for later and a bunch of balloons one of which is a monkey and all are very cute. My Dad also found me another cat to go to with pink cat collection this one is more like a scark but adorable no less!

Will update tonight or tomorrow on ow surgery went,
Take care,


Monday, September 12, 2011

Admitted to Neurosurgery floor; surgery tomorrow for shunt, monitor placement

It has been a wild few days -  starting last thurs fluid was building up again around the lumbar shunt incision and swelling was also following along to the shunt reservoir and valve which where swollen so much to the point of looking lile sausages. Sat night i started getting a terrible headache so I went to bed and woke up several times the last time I got up and took a few meds to try and knock it down. I woke up again a few hours later and felt ok so figured the headache was gone and woul be ok. I got up, showered, got dressed and met my mom and we went to saukville to a car sho my Dad had his chevelle in. Needless to say 1/2 way there I started to get sick again and by the time I got to the park I was feeling nauseated and aweful, I spent the hour I was there in the very gross public bathroom and then when my Mom and I left I proceeded to throw up 2-3 more time right out in the open. Yuck and I can only imagine what other people thought. Eek!

Mom drove home and by the time we got bck to where my car was I threw up 3 more times. I got back to my apt and laid down throwing up multiple times. At one point because I was getting chills and fever/sweating to so I called my primary drs office and my internal med dr happened to be the one on call. She was concerned due to the consistent throwing up and not keeping anything down. She reccomended I go to the local ER. I did this and the ER staff admitted me in there did IV meds of zofran multiple times as well as multple trials of pain med which I would throw up multiple times after each was given with throwing up about 5-6 more times. They did CT of head and chest X-ray and then called my neurosurgeon at UW who asked that I be transferred to her at UW and she would admit me directly to the neurosurgery floor. They wanted me to go by ambulance which I ened yp doing and my parents followed behnd. Today i've been here 24 hours and I talked to the neurologist this morning that I was originally supposed to meet with w my neurosurgeon. Then a while after he left my neurosurgeon and her NP's came in. Dr.B feels from talking to the neurologist that in doing this EVD (external drain) and ICP monitoring + tying off the LP shunt will give us some answers on the brain compliance/stiffness. She talked about something where they can add to the pressure ro see how my brain compliance reacrs and I cant remember what this was as I was feeling pretty terrible and very tired when talking to her. She has this surgery on the OR schedule for tomorrow (tues) as a 'E' case meaning we wont know what time it is at until either tomorrow morning or up to as close to an hour notification before the surgery. The hard part is my parents what time do they come and also not being able to eat after midnight if the surgery isnt until the afternoon . Once the testing is done of which im not sure howmany days this will be in for but then we will have a plan for what we want to do ie keep the LP shunt tied off and put in a VP shunt or fix the current shunt with a different type of system/set up.

I will update when I know something - needless the past couple days have been very busy and crazy between the hospital in BD, the ambulance ride (which was my first) and now being hooked up here at UW on neurosurgery floor. Tomorrow after the surgery is over I will go to the NICU room whereas right now I am just on the general neurosurgery floor.
Will update,

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Thursday, September 8, 2011

Appt date

Just another quick note - Appt with my neurosurgeon and her neurologist (which she works with on her complex shunt pts) is monday at 10:20 - this means missing ERT but honestly I dont care bc would rather meet with them and figure out what we are next step is going to be and sooner we meet the sooner we'll get to overall final plan. My neurosurgeon in her email yesterday did say she likely would also still schedule the EVD and ICP monitr placement + tying off the LP shunt for sometime next week to. Her usual surgery days are tuesday and fri although she usually is at an outreach clinic on weds but sometimes does not have this clinic and so it's possible she would do the admitting then to. She said we would decide this on mon. We'll alos decide with the Neurologist what they both feel is the right ultimate step after this monitor is done ie place a new valve on the LP shunt or keep it tied off and place a VP shunt.

Today I saw my Pain mngmt dr and we talked about a wide variety of things including possibly should I ask my Neurosurgeon does she reccomend any neurologists at UWHC/AFCH who might have experience in my other issues to - ie managing the spine stuff (though I plan to ask nrsgn if she might take charge of watching over the spine stuff or if my PCP would order the MRIs when needed would neurosurgeon read/follow them for us. Some of the other issues my current neurologist manages include the autonomic stuff and overall carpal tunnel/hand -nerve testing. We also talked about the new pain patch I am on and she said she may not keep me on this long term due to the rash and itching she can visibly see even at the site of a patch I took off 5 days ago (still a very visible raised rash). Overal the patch works well so for now we're going to let it and keep using it and see how it goes - I do unfortinately have a rash and hive reactionto pretty near every adhesive be it EKG leads, tegaderm, surgical tape, band-aids, IV tape, etc. when left on for more than a few hours. The reason we want to use the patch for now is it has alot less GI side effects even with my continuing to use MSIR (immediate release). This dr also asked if I might be willing to take one of her newer pts under my wings and help her - a cardiac transplant pain pt who has not yet had transplant and doesnt have alot of support. She is going to talk to this pt further about this.

Next week is the week of our APFAN table at UW so I spoke with the Pain dept coord at UW and my regional manager who is the other one doing this table with me and we all agreed if surgery isnt tues (which I would be a little surprised it was but yet nothing surprises me I suppose) then we will go ahead and do our table tues and if not in-pt by thurs we will also do it then. 

Today I noticed fluid building up a great deal at the lumbar incision although im not sure when it started up ie did it just begin today or did I just not notice it? And this same swelling and fluid is now very backed up to the side valve and reservoir incision and this is very puffy and almost distended plus every so often pinches for whatever reason. The swelling must extend downward bc my L leg is so irritated and has otherwise been fairly good for a while now and overall discomfort at area is there. I saw in the pew at cburch tonight and just even to stand up or sit down or to shift sends some pretty awesome signals along the shunt area. Snce I see my neurosurgeon mon already I figured I might as well not bother them again. Hopefully doesnt get any worse than this as I have both my nephews this weekend (age 5, 9) and very looking fwd to having both of them though im sure i'll be even more wiped out by the end of the weekend.
Will update after monday,


Wednesday, September 7, 2011

Brief update on shunt news

Just a super quick note - I talked to my neurosurgeons nurse yesterday late afternoon and they are working to coordinate the appt between my neurosurgeon and the neurologist who will help my nrsgn figure out if this could be a pressure issue or just needing a different valve issues. My neurosurgeon also sent me an email reply to a couple questions I had and said that she would also try to coordinate the drain and monitor placement and tying off the shunt (to make the drain more accurate) for next week. I'll post one part of her email as it is quite interesting but needless while I desperately just want to get this done and figured out next week is about the worst possible week this all could be happening (I had hoped by some small miracle we could do it this week although w the holiday it made it hard and it does mean o'll be able to keep both of my nephews this weekend which should be nice and will make both happy especially Zan my youngest one.) Next week is the week I will be at UW anyways 3 of the days for the APF table myself and my regional manager are staffing for sept pain awareness month. If this really does happen next week this will be the secnd year in a row that I will be forced to pass off or cancel the event as last year I had my other WI APF leader manage the table for me due to another surgery being moved up. Sometimes I hate MPS with a very deep passion.

Earlier today I went with my sister to pick up my youngest nephew from his 1st day of 4K which he will do 3 days a week and then will do his early childhood 2 afternoons a week and his Autism ABA class in between this schedules to. Everyone was concerned how Z would do but he apparently did great and when he would get overwhelmed with the other kids noise he would tell his aid or teacher "it's very loud in here" or something along those lines instead of breaking down in a fit/crying and he also will have a area of the room he can go when he needs a little time alone. Im super proud of him an the strides he has made!!!

This is only a small portion of the email but I dont want to include it all and I also dont want to post any detail oriented info - just thought this was interesting and a different but good explanation of the causes of pressure in MPS:
"CSF pressures in general are not compartmentalized, but pressures can build in one area and cause a generalized increase in the brain pressure.  Pseudotumor is likely more of a problem with absorption of CSF, whereas hydrocephalus can be that or it can be an obstructive problem.  Problems with absorption of CSF are also seen in other syndromes, like glycogen storage diseases.  The problem isn't so much the definition, but defining what the problem is and working at solving it.  Sometimes addressing one or both still doesn't solve the problem because it doesn't necessarily deal with brain compliance (how stiff the brain is)."

Will update when I know more - just please say a prayer I can cont to have patience and that symptoms do not get any worse than they have been as this has been a tryin past 2 weeks especially at times given the headaches which seem to get worse and the vision issues that come and go with the H/A's and then other hip/stomach and hand issues which are not related but the hip and hand issues I do need to get taken care of sooner or later.
Take care,


Friday, September 2, 2011

shunt News

Earlier today the nurse from the orthopedic hip surgeons office in Mn called just to check in and see if there was anything they could help with - ive not met this Ortho yet but we've communicated via email (he is one of the MPS docs) and they where/are aware of the shunt issues going on and that ive kind of been trying to sort those out before I reschedule this hip appt. Anyways she just gave me her direct line and told me to let her know a few dates that would work for my schedule when I was ready to come up and she would make it happen. Just thoguht it was nice that they would fup especially given ive not met this provider yet and I know he is  very popular dr amongst MPS pts and in general. 

I also heard from my neurosurgeon who emailed me as there appeared to be some connection issue when she tried to call my cell (I only use the cell as im not home enough for it to make sense to have a home line to). Anyways i'll copy part of her email below because it explains her ideas far better than I could in a concise but easy way and while asking if I was ok with the plan. The hardest part of healthcare is waiting like ive said before because of the unknowns but on the flip side the best part is providers who want your opinion and input! There are a few things I have a question or two about but nothing earth shattering on my part or that I disagree with - she's a pretty fair and patient oriented doctor! So see below for this email - I wouldnt normally post an email like this but in this case it doesnt really given identifying info and is good information in general I think for MPS families especially to have.

I was waiting to hear from one of our neurologists to see if he could meet you next week with me.  I read over your previous surgeon's notes and they sound very similar to the troubles we have been having.  I do wonder some about the original diagnosis of pseudotumor, but am also convinced that when drainage is working well, your symptoms do resolve (as I have seen myself as well).  I would like to get Dr. Hs opinion because he also helps us with many of our complex shunt patients.  He has extensive knowledge and background in mathematics and can help us figure out if this is a valve issue or simply a pressure issue that isn't being resolved with the LP shunt.  In reading the notes, it doesn't seem like the effects have been long-lasting, as in our case as well.  I still feel that it isn't unreasonable to place an external drain (in the brain) to allow for drainage of CSF and to correlate your symptoms.  I do think that if we do this, however, that we should tie off the LP shunt so that we get accurate information.  We would also monitor ICPs again. 

I think we can try to coordinate this soon (within the next week), but I would like to have you meet Dr. H before hand.

Is this OK with you?

I promise to keep you updated as soon as I hear from him. I do apologize that it took me longer to get back with you.  I appreciate your patience especially when I know you are not feeling well.

Talk again soon

I'll update when I know more but in the mean time am hoping for a nice weekend with little rain for the car show tomorrow and flea market sunday - love, love, love these! Hopefully will be feeling atleast semi-ok!


ps: If you'd like automatic updates please sign on to the right as a follower or via email updates. :)

Thursday, September 1, 2011

Sept Pain Awareness Month - activities in WI

Sept is Pain Awareness Month

Posted below see the details for a Walk/Run being held in Greenfield, (WI) hosted by Advanced Pain Management a pain group with offices throughout WI and which I have worked with on the Pain support group, who I have collaborated with (as well as ASPMN-WI) regarding the state secured-PAM Proclammation and on general awareness. APM will be donating proceeds from the walk/run directly to the American Pain Foundation and I will be attending the Walk as one of 2 represenatives for APF and hosting a table with many of our educational materials that day. The day promises to be filled with excellent exercise, good materials and a chance to be in the outdoors - all great things as well as a chance to learn more about how to treat pain. See below.

Other events I will be hosting in WI include our secured PAM Proclammation, a live table at UW Hospital (Madison) on tues, thurs and fri the 2nd full week of Sept. with a diverse option of materials available to patients, healthcare providers and families interested in learning more about how to help themselves or help others.

This next week my regional manager and I will be on a call with each other regarding planning the afternoon portion of our Pediatric Pain meeting which is tentatively being planned for next summer/fall - the morning portion of this meeting with include healthcare providers and a focus on talks aimed at healthcare providers while the afternoon portion will be geared towards families and children with pain. Interestingly on a side note one of our speakers is also a Peds Pain provider in CA with a vast knowledge of MPS of which I learned after I referred another MPS I family to her! Small world! :)

This morning I was on a conference call with the MPS I marketing director and another MPS I/lysosomal associate  I have previously known regarding the interest in focusing on and identifying the un-met needs of adult with MPS I and what can better be done. I am in the process of identifying several young adults and several older (old for MPS I is 40's that I know of at this point)  adults to participate in a skype/conference call to give in-put on what we all brainstorming together feel can be better done. After this call I will then re-group with the 2 marketing folks and we will decide on what we think should be done. One thing we've decided is to re-purpuse the Gaucher materials for adults with MPS I but these will also have to be further detailed as Gaucher and MPS I are 2 similar but yet very different lysosomal disorders in which people are typically diagnosed young and grow up with the disorders - MPS I just happens to be one of the lyso disorders that affects virtually every organ, joint, system and cell.  This seems like a interesting project and looking fwd to taking it on.

I will cont to update with further Pain Awareness Month activities including our APF 'If I lived in a world with less pain' campaign on facebook and updates to the WI American Pain Foundaion-Action Network (WI) page.  http://www.facebook.com/#!/pages/American-Pain-Foundation-Action-Network-WI/131350163565401 - WI APFAN page

Remember see below - and   I will also update when I know something from my neurosurgeon/office I am just praying I do before the weekend so I can worry a little less about that all and just know what her thoughts are! Knowing is sooo much easier than wondering!



Pain Awareness 5k/3k Run/Walk

Location: Greenfield Park, 2028 South 124th Street, Milwaukee, WI 53227-1047
Audience: Healthcare Professionals, Public
Start Date: 24 Sep 2011 - End Date: 24 Sep 2011

Time: 9:00 A.M. & 9:05 A.M.
Race Packet Pick Up: 7:00 A.M. - 8:30 A.M.
The 5K run will begin at 9:00 A.M. with the walkers following shortly thereafter. The 5K course will initially travel a traditional-style cross country run course following the scenic surroundings of the Greenfield Golf Course on the perimeter of the property. You will run the gently rolling hills of the golf course as a trail run for the first 2K.
The remaining 3K will be run through the plush forest area of Greenfield Park on paved terrain. The 3K walk will begin at 9:05 A.M. The event will run through Greenfield Parks beautiful paved trails. Strollers and wheelchairs are welcome. To accommodate the broad range of abilities and skill levels, the 3K walk will proceed along the paved pathways.
Aid stations will be provided on both courses. Please, no pets.
Following the run/walk, APM will host food, fun and awards in the picnic area!
Fees: $25 Early Bird Registration/ $30 Race Day Registration
Registration Closing Date: Thursday, September 22, 2011 at 12:00 P.M. PST
Additional information, online registration and mail-in registration forms can be found at http://www.painawarenessrun.com.

If I lived in a World with Less Pain Campaign: