Thursday, June 30, 2011

Back at home..4+weeks post-op

I am writing this from home for the first time in over 4+ weeks which wow is all I can say - both where did these past 4 weeks go and at the same time feels like time has stood still in other ways. Ive been staying with my parents since that initial 1st week in the hospital for the past 3 weeks which was a big help, my dad helped me bring my 3 cats to their house (my youngest cat totally adored their 2 big dogs which often was funny to watch) and so I didnt worry about them and my neighbor took care of the strays cats that hang around my apt building so that also was little worry. At just over 2 weeks post-op I was able to start driving again because my neurosurgeon wasnt concerned w/my left sided leg weakness affecting my driving and so I would stop at my apt 1 or 2x a week when I was headed to milw to get mail and grab a thing or two and drop of a thing or two which is what made it all bearable. I live only about 15 mins highway time from my parents so not to bad overall. It will definitely have ups and downs being home ie some things are definitely not back to normal and thus will be harder doing some things but that I can deal with and work around. Even in the 5 or so mins ive been sitting here at my desk my leg is becoming increasingly uncomfortable and painful from low back down the back which is an area that has really woken up a quite a bit in the past 5 or so days and so while im thrilled that it's is waking up/losing the numb feeling I definitely dont enjoy this pain/unfomfortable feeling it needless makes sitting and driving a very interesting chore! Weds on my way back from milw which is about 1 hr I stopped no less than 3 times to stand up as it became so uncomfortable and getting in and out of the car on the drivers side is no easy task just yet so needless I wasnt all that happy about it or with my body! My low back conts to move between numbness which is when I have increased bladder and bowel issues to painful much less numb feeling w/subsequent muscle/nerve irritation at just about any point. This still is an improvement bc even a week ago I had much less feeling, much more sweling (there conts to be some at very base of spine and around shunt/spine incision but less than even a few days ago) and overall much more issues with GI and bladder than currently. I am hopeful this will cont in an upward trend! Walking improves though kind of sits right now with a mixed limp/foot-leg dragging combination due to some numbness in other parts of leg and so while I can do stairs carefully it is much less painful and overall simpler on leg and low back/incision to walk with this weird leg thing bc everything doesnt quite go together yet in a quick fashion.

I do have to say I feel like im in this sort of limbo of my own making perhaps because its not that easy to just go out and do a lot at once so I only tend to do a little especially if I am driving and it feels like summer hasnt even been I suppose mostly bc my nephews havent been here for a summer party yet nor has my neice and I havent seen as much of either of nephews due to this surgery and I miss them like crazy, (Quinn is coming this weekend and will see Zander to). I also feel like life has been a little on hold bc of this surgery and recovery and the length of it all + while ive cont to work on projects most especially for APF ive not been doing the outreach aspect as much (more helping families, connecting to groups and getting awareness of pain out to people in general) other than with a few smaller projects I was previously working on.  I do have meetings coming up on the 12th and 21st and perhaps those will make me feel a little more a part of the actual human life?? Hope so cause this is a really weird feeling - one im sure ive experiened with other surgeries and just dont remember but non the less weird!

Will update soon - off to endocrine tomorrow,


ps wisdom teeth so far has been very smooth.

Tuesday, June 28, 2011

1 month post-op

Just a quick update - not to much going on new atleast - on a none medical front myself representing APF (american pain found), Advanved Pain Mngmt and American Society for Pain Management Nursing-WI have secured the Sept Pain Awareness Proclammation which is good news for our sept ventures and for overall awareness.  I also have a couple other projects going on w APF as well as we are in the process of arranging plans for the Oct-central and Eastern conference in Albany, NY yearly training.

On to medical things - this week I see Oral surgery for wisdom teeth removal tomorrow which thankfully this shouldnt be complicated as it is all fully out and so all 4 teeth should be fairly easy. In fact I am driving myself to and from the appt as the surgeon and I agreed we wanted no sedation and only local w/this due to the airway issues and my endocrine dr agreed to just let me increase the daily cortisol replacement but w/oral meds for the next 3 days and then back to normal.

I also happen to have scheduled a 6 month fup with my endocrine dr for this fri so good timing I guess. Her nad I always talk about the impact of the increased intracranial pressure on the endocrine levels/issues (she is a big believer that atleast some of the endocrine hormone issues are/where caused by un-diagnosed hydrocephalus that went on for some period of time. In the past we had been able to document increases and decreases in the various hormone levels w/these headaches/shunt malfunctions and so it will be curious to see what levels show this time.

Otherwise it has been exactly 4 weeks or a month since the surgery and here is a brief update on where soem of the things are at:

I have been experiencing foot numbness especially when sitting on chairs where my feet are not touching the floor/a flat surface and in my L foot I cont to have numbness at the bottom of my foot and really I can only tell this bc of water temperature (when water touches other surfaces it is much warmer then when it touches this foot or even difference from L foot to the R foot temp wise and same goes for the top of my thigh and down the side of my L leg. I cont to walk w the cane but this to has gotten easier and pain overall comes and goes but is more of a neuropathic feeling than it is actually pain and muscles tighten up and then get really painful quite frequently on L side and all throughout + below incision/above buttocks.   Bowel and bladder seem to actually be improving a bit - definitely is slow but this is the first week I feel like there is a little improvement and while this still comes and goes as far as the improvement atleast it has been coming and going!

There is still some swelling at incision site/around the very direct incision site like a fluid collection but not as big as it was right after surgery and there also conts to be swelling above buttocks in lumbar-sacral spine area which all taken together does make sitting/laying on those areas uncomfortable but this has improvement atleast some since even 2 weeks ago so that has been nice. I mostly sleep on my right or left side.  

Related to these things I see GI in august as well as the neurogenic urologist (see last weeks note for that appt with mid-level provider)  at UW to and the week before these appts have urodynamic testing. July there are other things going on un-related to the surgery and cont work on projects for APF and hopefully more time w my nephews given ive not seen either as much as usual in june.

I'll try to update soon,


Wednesday, June 22, 2011

Ooh how we must go...

Saw Urology at UW yesterday and while it wasnt that helpful atleast right now it may be that if this issues keep up (which hopefully it will resolve sooner than later) the urodynamic testing which isnt slated until late july/early august will tell us a little more about whats going on and the follow up with the neurogenic bladder urology specialist (this may be who my Nrsgn talked to while I was in-patient as each  day she would stop by she would keep me up to date on who she talked to of her colleagues and other specialists) who apparently has alot of experience with these type of nerve-bladder related issues. The PA I saw really didnt have a good idea of what was going on so it seemed alot like most of the time was spent with my filling her in on things that have been going on and with what my Nrsgn has told me re things she was told regarding this issues. For now i'll keep cathing up to 4x's a day and otherwise going what my body will on it's own. It's always mildly (m-i-l-d-l-y) frustrating when you go in to an appt and it ends up that the provider knows very little and has no new information - we as patients already spend so much time w/providers and so add in those providers who know nothing about MPS, know very little about the issue you are seeing them for and seem perplexed and it just can create a very underwhelming feeling of why do these providers not do even a ounce of research or talking to our providers ahead of time? If you know the patient is being referred post-surgery and the surgeon has talked to one of your colleagues at the least wouldnt you try to talk to the surgeon or find out who the colleague was? I know time is limited but it shouldnt be at the patients expense...

So on that note but something ive written about before do you ever have to cringe and yet almost laugh a little to yourself at the reports  some providers write? Why is it some providers can recognize a patients sincerity right away and have no problem working with other providers/corresponding say when it comes to surgeries and other providers have some form of god complex? For instance ive had a really good luck this spring with ortho and with neurosurgery - both seem to understand MPS and where open to talk to other providers/other providers talking to them. I happeneed to be talking to my pain mngmt dr the other day and it just struck me how she realizes im not just a patient whose going to try and scam you (for what I have no earthly idea!?!) and im not going to try and be somebody im not. It's seems some providers have some sort of complex with patients who become friendly with their nurses and who keep in touch with people outside of the clinic on occassion... It also seems some providers have an issue if you dont worship the ground they walk on and will take that out in very un-professional calls or reports that are very un-truthful just so they can feel better???? I happened to be reading 2 different old reports from about 3-4 years ago and was struck by the tone of the reports - comments made that had absolutely nothing to do with why I was at those appts and comments made about my behavior (because I was sick that day and was frankly very frustrated with the way the appt was going - apparently to some providers it is illegal to become emotional at appts. Needless to say I now keep my emotions in check, am very careful about what I share with who and just plain dont go in to alot of detail about my personal life bc those providers that really know me know I am very involved with the positions I have and keep busy but those  occassional providers that had seen me once or twice or who had not talked to any of my group of specialists ahead of time seemed to find it ok to classify me according to their whim. Hello people is a book not read unless opened???

Anyways just my venting - will update soon - pics this weekend probably after Z's party!


Monday, June 20, 2011

Faith in adversity

“My God, My God, why have you forsaken me” – Mark

Words that one could often say and ask – especially one of us living with MPS (or any chronic illness for that matter)… But really why not me? Why not you? I don’t know why God has chosen me to have MPS – I don’t really think it’s because I am any stronger than any other person or because I am any more ‘fit’ than any other ‘normal’ person but I think it is because sometimes God lays before us things we cannot possibly comprehend – challenges in which we either leap or we fall. I don’t always handle having MPS so perfectly (but no person is perfect and we all must realize this in order to become better christians) but I try to look at it as ‘why not me?”  Why shouldn’t it have been me – instead of say one of my siblings? Though in the incredibly rough times I wish I’d feel better and I wish that I didn’t have to explain to the 9000th person what MPS is, why I look so normal if I have a disorder that has affected nearly every organ and body system and have had to explain to what seems like the 50th person that no that isn’t right and this is how it should have been billed or covered or approved.  In the end I usually realize that while I am feeling incredibly frustrated in that moment – I know my savior could have felt a 100 x’s more frustrated in all he went through and yet he went forth with glory and faith and willingness despite all the thorns he faced.    I usually realize later  after having faced a trial that this is what God has given me and surely  he knows the very path he has set forth for me. I can’t possibly always  understand why I have to face the life I do  but t I can try to learn and grow from all that is set before me.  “Always be prepared to give answer to everyone who asks you to give the reason for the hope that you have.” – 1 Peter 3:15

.  “My grace is sufficient for you, for my power is made perfect in weakness.” – Corinthians 2 12:9

Ive always had a really hard time talking about myself – sometimes we as patients just need things that are our own and that we don’t always share with everyone – sometimes it does feel like as patients you become ‘community property’ to the doctors and the medical establishment and then an open book to the family and friends around you.  I am not a very good open book and a lousy investment for a community property. I think if someone where looking for a return on investment health information wise from me regarding my own health they’d probably be sorely disappointed.  I actually really enjoy sharing what I know health wise about MPS in general and helping to educate the medical establishment and families about these disorders, what to look for, the little unusual differences in MPS related health problems vs normal non-MPS health disorders.  (ventricles in communicating hydrocephalus for instance and how these rarely expand but that cannot be used to rule out increased intracranial pressure) .  Ask me about these same problems in myself and I’ll likely tell you a little but either tell you a site to go to in order to get more information or hand you information on the problems vs going in to great detail about what is going on with myself and if your family you know I just don’t talk about most of it a lot – sometimes you need a place/people who are free of the medical stuff!. I think I have gotten better about sharing my own health issues with the medical establishement because ive realized 9 times out of 10 I will know more than the provider I am seeing and it is my responsibility fair or not to share information on what MPS is, and how it presents so I can get proper care.  I look to my savior and what he did in order to try and overcome my shyness in talking about my health issues – he after all is in control and knows the path I am to take. A paragraph I came across in the monthly ‘Forward in Christ’ magazine seems fitting – “Don’t ever forget that things and events in this world that offer so much grief and trouble and confusion cannot overcome God’s people.” – Mark Shroeder– No matter the suffering we feel – our Lord is greater and always in command – he will heal and guide and protect our hearts and minds and souls and I am learning that I can share about my own self and sometimes when I just don’t want to share that’s ok to – not every person needs to know everything!

“For I know the plans I have for you, declares the  Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

Today after infusion (which took closer to 4 1/2 hours and for which I was extremely ready to be over) I went from Childrens Hospital (Milw) to Elmbrook and saw my Pain Management dr which went well. She is one of my better drs and one in which I keep in closer contact with via email, occasional text (during the surgery a few weeks back I used this and email to update her) or phone as she is easily available after hours although I rarely ever use that because I hate taking peoples time even if they dont mind! She and I talked about her feelings regarding my surgery outcome (extremely happy about the relief of most headaches and she just said she felt really upset that I had yet more issues to deal with when she first read my text post-surgery about the spine nerve root issues and injury. We talked though about the feeling that this atleast the most complicating issues will heal as my drs in madison feel it is just temporary problems caused by the swelling, irritation and nerves needing to heal. We talked about some of my drs and considering changing onesl ike my neurologist (who I actually really liked my neurologist she just does not have the time and my PM dr said she was switching some of her other pts to other neurology drs now) and we talked about the urology stuff and some urologists that she knows if for some reason I dont like the UW group but we do both think they will be ok especially since they seem to have worked so well with my Neurosurgeon without having met me while I was in the hospital for the  post-op period. We talked about more in general drs lack of understanding of ramifications of un-treated communicating hydrocephalus and she talked some about how concerning it was the problems that would have occured and far worse had my neurosurgeon not caught my lumbar spine compression. (again 2 for 1 - I could look at this as a bad situation the having to self cath and having had the UTIs + the swelling and numbness in my lower back and numbness in L leg. (likely periperhal neuropathy secondary to nerve injury and neurogenic bladder/bowel).. Otherwise we agreed on increasing the Lyrica for now to 3x's a day at a 75mg dose but 150mgs at bedtime. to try and cut down the nerve signal in order to help healing and prevent long term nerve pain signals from going hay-wire and becoming over-active even after the nerves heal. If the lyrica would cause side effects she just asked me to call and will cut back the dose and we'll try something else. She also was fine with the continued use of the lidoderm patches at my very lower back below the incision which help with the nerve pain and work well. (ironically the work by numbing the area but the area is already numb so not sure how that works in helping the nerves!?!?

All for now, will update after tomorrow appt at UW. (hop skipping the state this week :) )
God Bless,


Thursday, June 16, 2011

Post-op 16 - Cats ball of yarn

Follow up today at AFCH with Neurosurgeon which went well the most exciting part being she is letting me drive again simply bc my R leg is not affected by the spine and shunt surgery related nerve issues and bc I drive a automatic car. I said to her and her nurse (whom I love) that it seriously must have been fate last fall that I sold my saturn which was manual transmission (after the R thenar tendon transfer surgery) and bought a grand am which is automatic transmission! I am just incredibly relieved  to say the least to be able to drive myself places again - it makes the rest of this waiting on healing more bearable I think! She said that if I had driven manual she wouldnt have given the ok bc of concern about damage to the nerves as they begin to heal or something along that lines. 

We talked more about the bladder issues and she told me a little about what she expected urology might do testing wise and that she didnt think it would be to bad for the simple fact of not having sensation (nice way to put a positive spin on sucky testing there and i'll accept that!) She also thinks that this specialists will be able to help with some of the other bathroom related issues (ahh I simply cannot believe the info I have shared here - eeekkkss!!!! but there again in some way if it could help another family  with living with MPS then I guess I can get past my squamishness about sharing!) . She also again mentioned having talked  to some of her colleagues about what all is going on and all believe this is only temporary and will at some point return to normal - hopefully sooner rather than normal but time will only tell. I appreciate that she is willing to ask those she works with for their advice as it means she is not one of those drs who thinks they know everything and I love that most about her!  We talked some about how my feet/ankles swell considerably by the end of the day (they look like water balloons) and she told me something about this being related to nerve damage but for the life of me I cannot remember what it was but also that as the nerves heal this to will/should improve.   She took of the steri strips on my side incision and removed the bandages/gauze from my back incisiion and while there is still some stitches that havent dissolved on my back she told me I didnt have to worry about covering them for showeing and can also get them wet in other avenues (swimming!!!) as long as I am cautious and careful w/my body which I totally understand - heck I move at a snails pace so not to much to worry about as long as in the pool others leave me alone - we are a family known for horsing around so i'll just have to avoid that for now which may be hard but family gets it! ;) She talked about how on the MRI and in surgery she was able to clearly see that no nerves had been cut which is one reason she is optimistic about my regaining sensation/functions and she talked about that there is still a sac of fluid around my incision now but expects this will go down to - I think that is what makes it so aweful to lay on my back at this point!  The other thing she talked about was the actual site of the bundle of nerves and how unusual this was + compared it to unraveling a cats ball of yarn and then sticking/placing each of the nerves back in the right places which is probably why it was/is so irritated. She just said this was extremely unusual and I think she said this was something  she hadnt come across before but probably atleast partially due to repeated LP's and surgeries in the area.  I follow up with her in a month she just said she "didnt want to abandon me' (very nice of her and her staff although I wouldnt feel they where either way) and asked me to let her nurse know on tues how the appt went w/urology bc while they would get a clinic note it's nice to hear from the pt how things went".. She mentioned she would be out of the office the beginning of july due to getting married but if i needed her for some reason she would be around and her nurses would be able to get ahold of her should any issues arise.

Other things coming up I see my Pain mngmt dr for the first time since surgery on monday after ERT (different hospital) and the urology appt (back at UW)  on tues and a different appt thurs and this sun - fathers day is a car show - my Dad's 67 rebuilt custom chevelle is always in this and always nice with my brother and sister in law coming up and my older brother also tentatively planning to come as well as my sisters family and I. Should be nice. :)

Will update soon,

Erica                                           Lumbar incision - most stitches minus a few have dissolved and fluid sac                                                    persists but should dissolve my Nrsgn said in time

                                               Close up

Tuesday, June 14, 2011

Post-op 2 weeks

It has been a slow recovery some days seem almost normal minus the L leg issue and bladder issue and other days like today are up and down and up and down due to constant numbness/burning and pain in very lower back/buttocks/L leg that is there and then gone and then there again. I think the worst part conts to be having to walk with a cane and just not having normal sensation in my lower L 1/2 including the above mentioned areas. Yesterday I had to call my nrsgns nurse and ask her who I order new cathethers through as I am almost out and I hadnt thought to ask the neurorusrgery floor nurses before leaving last tues. She in turn called urology and the case manager (im not sure who that is) and said she to had never had dealt with something liike ordering these so was an learning experience for her. My neurosurgoen must have kept her up to date on what was going on teh 8 days I was in-patient as she asked how I was doing and talked about the days initially after the surgery. I have a couple questions for thurs appt and hope also maybe they will let me start driving since the issues I am having do not affect my R leg for driving. I jsut said to my Dad earlier today maybe it was fate that I sold my saturn last fall which was manual transmission-stcik shift as that would have required both feet to drive. (I sold it a month or so after my tendon transfer surgery in my R hand as although I loved the car I wanted/needed something less intensive due to so many surgeries. Good timing I guess..

Otherwise ERT was pretty well yesterday - very hard to sit for that length and despite getting up for short periods I still felt really sore after. Ive rescheduled most other appts I have till july other than with my pain mngmt dr which is for after ERT on this coming mon. I also am going to meet my Insur Case Manager in July which should be neat - and also wie have rescheduled the UW APF meeting for beginning planning on our meeting for pain education for providers and families - that will take place in july.

Thats about it for now - will try to update after thurs appt.,


Saturday, June 11, 2011

Post-op 12 - A few pictures and recovery

Lumbar spine incision - L3 down (Lumbar portion of lumbar peritoneal shunt w/reservoir and horizontal/vertical device in lumbar area of spine and also the laminotomy L3 down and nerve root decompression of spine.

Medications I came home on from the surgery 8 days post-op (lyrica, dilaudid, nitrofurontoin (sp?), ketorolac (anti-inflammatory Toradol)
Medications I take on a daily basis - a few of the meds from the hospital I will be on for a while and others I have now finished and still others are dose changes. (Hydrocortisone, Lasix, Dilitiazem HCL, Avinza, MSIR, Zofran, topamax, (fish oil, zsinc/copper, biotin)

Today was the best day yet - still shuffling around and still hard to go to the bathroom but a little better I think (or hope!!). Swelling is still pretty fierce in my legs adn especially my left leg and when that increases is when my leg pain also increases a great deal. I cant sit or stand comfortably more than 20mins and am continuing with the cane for great deal of support. I have been able to use the stairs though w/one step at a time vs skipping up them like I tended to use to. Ive been able to ciut back on pain meds some bc the pain I do have is a type that just isnt helped by any of the meds I take nad frankly it is better helped by localized pain patches ive been using (lidoderm for local numbing and flector for localized anti-inflammatory. These help significantly. Ive cont to sleep about 6-7 hrs so needless am pretty tired but other than when swelling is really bad havent had headaches which is extremely awesome!!! I ussually wake up once at night to go to the bathroom which is no quick afair due to getting out of bed slowly, walking down the hall slowly and all and then has been taking about 30-45mins to fall back asleep. 

I'll cont to update here and there.
Thanks - take care,


Friday, June 10, 2011

Post-op day 11 (from my parents)

Here is a destription of the surgeries I had done in my lumbar spine: - laminotomy (removal of bone from each side of the lamina covering the spinal cord and decompress the nerve roots) which where scarred together from previous LP shunting surgeries, previous Lumbar punctures and very little CSF (cerebrospinal fluid) getting past the shunt due to it's system of draining into side and stomach compontents) - Lumbar peritoneal shunt ( for communicating hydrocephalus)

Lumbar laminotomy

Lumbar laminotomy: A lumbar laminotomy is surgery to remove parts of bone and/or disc to widen the spinal canal in a region where there is pressure on the nerves from compressed vertebrae
Ive been home since tuesday night and has been up and down as far as symptoms and pain level goes - I am actually still amazed by how much swelling, black and blueness (is that a word!?!?) and irritation there is at the shunt and back surgery scar levels and down to my buttocks all the way down my leg. The incicions itself looks really good - far bigger than any of my other shunt scars but that is more because of the back surgery/decompression and nerve root repair than it is about the shunt itself. The stitches are all dissolvalbe - the ones on my side are still covered in steri-strips and the ones on my back from what I understand from my Nrsgn will dissolve on their own but from where placed from under the skin (im not sure how that works) vs closing it from the outside. This has to be covered with a large tegaderm when I shower. I am still having to self-cath about 50% of the time - the 1st full day I was home and yesterday I ended up more but this correlates signiticantly with the swelling/irritation - when this is improved then the bathroom issues are also improved. Walking conts to be up and down with the same thing when I am on my feet more it hurts more and thus gets more swollen and irritated but at the same time if I sit for long periods it also gets really sore. I had actually gotten approval from my GC to make up one of my ERT infusions yesterday (thurs) due to having missed the past 2 weeks and it takes about 1 1/2 hours to get there from my parents house where I am staying and then another 4 1/2-5 hours of sitting there for the infusion which itself is about 4 hours. Needless by the end of the infusion I was feeling a whole ton of neuropathic pain in my low back, buttocks and leg and even ice was only doing so much. I cont to take pain meds (the different ones than before) and this has been ok - dealing with the side effects of these but working to sort that out as well. ) which  dp help quite a bit. Once this healing gets done I will go back to what I was on before and through my Pain mngmt dr. The irony of my having been in pain mngmt before this shunt revision (ive had 3 others but the headaches have been going on for years for those unfamiliar bc I have so many providers and so many just couldnt decide if it 'was' or 'wasnt' the shunt and needlessa as we see now it 'was' the shunt.) but my Pain mngmt dr and I could never find a medication (and believe me we tried - kudos to my dr bc she is fantastic at her work!) that worked for the headaches but we found meds that atleast helped my back pain and joint pain so I could function and cont to stretch out and try to keep my body in a semblance of shape while having a life despite on-going pain. (,my middle back has some issues and all the stress from my cervical spine surgery and instrumentation goes directly onto my thoracic spine region) . So when I go back to her I will probably not be on any less pain meds but at the same time once this spine surgery heals and I am back in PT for a couple months maybe we will get to a point of lowering meds some??? I would never rule it out!)

I am going to look at new camera today (mine was stolen along with my GPS from my car wen I had left it unlocked) and I had bought a new phone which I hated so when I returned that I figured id look at new cameras or a new portable DVD player (broke it to a point even my brother couldnt fix!)  - I am pretty excited!! I also am going to look for a cane bc I think I am to a point where I can walk with that for support on my L side vs the walker. I also am thrilled about this - the PT's at the hosptial when I asked how I would know when I could switch just said they where pretty sure I would know and I think they are right. I imagine I might use the walker from time to time but think the cane would be easier.

For follow up appts I go back next thursday to see my neurosurgeon at UW I suppose to check the 3 incusions, check my residual functions post-surgery and into recovery ie the weakness/swelling/numbess/pain
and just overall evaluate. The following week I follow up with Urology although that clinic has been fantastic and is trying to get it coordianted sooner. Other appts will probably be rescheduled for now that I have. (Pain mngmt, PMnR, Ortho, etc)

I will try to update again soon,


Tuesday, June 7, 2011

Post Op 8 - (Released, Freedom, Adios!!) (Added to)

6/7/11 11:30

Just a quick note - so I know I did a pretty fantastically bad job of trying to describe the surgery I had in addition to the shunt replacement last week but here is a very brief description and as I thought it essentially did just to my L3 level what I had done at C2-C4. The difference is that at cervical decompression I had plates and screws put in to hold the door open in a 'open door' type fashion done by a orthopedic spine surgeon at UofMn and with this surgery my neurosurgeon removed a piece of bone (lamina) to create room and then put the nerves where they where to go instead of sticking out and scarred together. In addition of course amazingly my Nrsgn replaced the shunt itself into the L3 space - dont even ask me how that is done - I am amazed actually and have so many more questions really out of sheer curiosity in some sense.... I was looking at previous MRI from several years ago and it says the level below L3 is also the same as L3 was but I think my Nrsgn said some of the nerves she repositioned she believed where not from the actual level they where scarred at or something to that effect. I will have to ask her about this next week - it makes me nervous a little and to wonder is it the shunt thats causing these scarring issues or is it both this and MPS deposits? Would be interesting to see her take. 

I am staying at my parents for now and will update about that soon - take care.
Good night,


So I totally feel like ive been in a cloud this last week and completely cant believe an entire week has gone by - shoot a week ago at this time I was literally still in surgery with an hour is left - and I totally never thoughgt id be going home with these differences - even if short term they are differences that one never expects to happen to them! The week has been filled with highs and lows (and yes I realize what is possibly high about surgery and a different outcome) that sometimes had me in tears and frustrated and other times like now I feel like things are improving even if ever so slowly. The highs right off the top of my head have been that I found this neusorgeon, that she is so cautious, seems to really care and took her time in surgery to do her best to try and relieve my headaches. After so many years of near constant being told it wasnt my shunt and that I was to focused on this it's nice that the solution really was fairly simple (yes in a totally complex surgery way) and my Nrsgn didnt need to do further testing bc she immediately found what she thinks was the source of the headaches. (shunt valve). Other highs have been some great nurses and staff, residents that where actually pretty nice and not bossy-kow it all as ive encountered in the past. Lows of course where waking up from surgery with no headache and thinking I had sailed through  surgery despite the unexpected long length really well despite the spine nerve root decompression/complication and then several hours later losing sensation in bowel, bladder and down entire left leg and pain + tingling on touch at bottom of foot. That was hard and at first I totally didnt comprehend the magnitude of it nor did I really get that it ment it would be a undefinable recovery ie we couldnt put a date on when sensation would return and thus I am walking out with  a walker today. Still a meet me in the middle point of that is that I am atleast walking out!!

I asked Dr.Bragg about which levels she placed the shunt at as a couple people/providers have asked me this and I honestly didnt know - the actual shunt is sitting at L3 and then below this is where she had to open up actual bone and clean up/decompress the nerves roots that where bundled together (she said she was almsot amazed by this as it is so unusual and was just so narrowed in the area she had to work in + when she took bone out which they do not have to do in simple LP shunt placement there was just virtually CSF fluid from chronic shunting and lumbar punctures.  She then had to release the nerves that where scarred into a bundle and place them back into the proper place (in the spine?)  and then place the actual shunt catheter tubing into the area she had jusr worked on. Thus the reason for lenght of surgery. She said the pain should start to go away in another week, and rhat she cant tell me a recovery date for the bowel/bladder sensation it again could be 5 days or more weeks but bc of the delay in onset of loss of sensation that is a really good sign. I am not quite sure why and keep forgetting to ask (i'll ask at fup it's not that important)  but apparently she opened all 3 incisions as even my abdomical one has surgical glue but I had no pain so I know she didnt have to fix anything in there - not sure what they would have done w/that incision as all issues where with the flank/middle incision and lumbar incision which apparently is now quite a bigger wider and longer then it was.

Worked with PT for a short bit today and she thought even stairs had improved  a bit and showed me another way to do these. They are recommendinng doing this 2x's a week so while it looks like my therapist whom I really like will be able to do this it really depends on his schedule to if he has openings this quickly 2x's a week. In the mean time I will get approvals through my insur case manager who is usually very helpful with this sort of thing. Home health is being worked out re my insur paid for the walker vs us renting it and having to return it and about the cathethers and anything else - this is being done w Social Work.

Dietician stopped by and she actually gave me what might be a really good tip - since my diet is so terrible (I dont drink much soda or juice but also dont eat much meat)  my providers have always recommended a multi-vitamin of which ive tried super expensive ones, and lesser ones all with terrible nausea and so this dietician actually said why not jsut try a simple kids flintstone so your getting sone and do drinks like ensure - the good thing is my weight has always stayed pretty stable despite all the nausea, vomiting, etc from headaches.

Today is my beautiful light of my life, son-shiny nephew Zander's 5th bday - 5 years ago today I first met a neurosurgeon and fist talked about shunting - 2 weeks later I had my first LP shunt. Zander means the world to me though bc of his fantastic smile, funny personality and his quirks that just make you laugh even if sometimes you maybe shouldnt! He is a doll in a little boys body! I LOVE him like he is my OWN and CANNOT wait to see him!!! He totally made my day when he visited several days ago!

I will maybe update later when  I am home - there is a ton to do ie have to go to my apt with my Dad who is picking me up here at UW (took parrt of afternoon off and also taking thurs off for we can go to milw for infusion as mt old ERT nurse has agreed to do my infusion)  - have to get clothes, my cats, all my bills to pay, and just anything related to everyday. Have I ever said I hate staying somewhere else just bc I dont have the organization and laid out - know where everything is atmosphere of my own home and cant just go grab or make what I wanr when I want it??? I love my parents dont get me wrong just cant wait to be in my own place!

More soon,

discussing w Deb the not being in control thing

Monday, June 6, 2011

Post-op 7 (Where did it go?)

Monday 6/6/11 re-updated
Just a quick note to say that I now apparently have a UTI and am still here in-patient - maybe tomorrow? My Nrsgn has been talking to her colleague who ironically I saw 1x initially a few years ago and whom I did not have a good visit with due to his thinking I was there for the wrong reasons. (II was already being followed by pain mngmt but bc I was so sick the day I saw him w/headaches/nausea he accused me of making up my symptoms and so I just walked out and never went back and finding my now Nesgn Dr.Bragg was pure coincidence through the adult Nrsgn I initially saw at UW and who recommended her).
Anyways Dr.Bragg has been running my complications past him to get his advice which he probably doesnt even remember me and regardless I am really happy she is so willing to consult with other doctors to try and make the best medical decisions for me!
Tuesday is my nephews 5th birthday so I really, really, REALLY want to be out!!! I am praying and my Neurosurgeon tends to stop arround in the mornings so will know then I suppose. PT and OT came around and was somewhat helpful I think really it is you arent going to know how things affect you until you are home and using daily living things and trying to adjust! So we will see..... Nrsgn has cont'd  talking to Urology apparently and working this out.
I also spoke with Genetics Counselor and she got the ok for me to do my infusion on a different day so I  didnt have to miss 2 weeks in a row. Right now it's just a matter of which day it will be bc I am still in-patient here and wihch day the 2 nurses who've said they'd be willing to do it and which decides to do it.  Will keep updated as usual.
Feeling a bit out of sorts this morning - slept about 4 o5 5 hours last night and about a 2 hour nap yesterday afternoon after my family left. I think part of what I need is a night of 8-9-10 hours of sleep with little interruption and not that the staff here has even been waking me up thankfully I think they know  I am sleeping so poorly that when I do sleep they just wait on 4 hour checks and meds. I am grateful for that.

My Neurosurgeon just stopped by today and said although we where shooting for getting released today she doesnt want to guarantee it yet and we should just wait and see how it goes. She spoke with urology yesterday and they said that they dont typically start medications until 2 weeks after a nerve injury so that it can give plenty of time for the body to try and heal itself re loss of sensation and inability to just go and holding after having gone. She is working with them to set up consults and testing likely when I am out-pt but she and the residents did say they may do some of it today to. She talked again definitively about having the nurses teach me to straight cath bc of the importance of not having free standing urine left in the bladder after having gone to the bathroom - and that this to will likely be a short term problem but we just cant say how long =/ - she just doesnt want anything to occur in this period of bladder not quite working right and when it is back to a more normal.   As far as PT/OT she wants them to really focus on the whole ADL thing bathing/showering (she did say id have to keep the incisions covered), stairs, dressing and all of the other little things that a perosn takes for granted and might not think of. As well she wants to get this coordinated for at home re these therapies and assistance devices. Feeling a little daunted by it all but I know day to day is the best way to look at it.

As for ERT I talked to the genetics clinic about trying to get it done a later day this week, we will see.

Will update when I know more later,


Sunday, June 5, 2011

Day 6 Post-op (Im-patiently a Patient)

Well im still here in-patient here at UW and same lack of sensation/numbness along my lower back/buttocks/leg down to borrom of foot where any touch sends sharp tingly  feelings. Bathroom is one of the biggest challenges right now - so after each time I go the nurses have to do the bladder scan to see how much I have still in there. Fun. (insert sarcasm). I constantly feel much like i have to pee but just does not work ie sit there for 20 mins and go a little and 10mins later go a little more. My Neurosurgeon stopped by this morning as she has each morning and we chatted for a bit - she wants to get a Urology consult re starting a medication possibly ditropan I think was one (she wanted to run past uro docs and pharmacy to see about potential interactions with meds I already take).  to get better control of bladder/bowel until all sensations return to normal and if all conservative meausres fail and this continues for some time they'd have to teach me how to straight cath myself - (good lord the info ive shared on here this week - EMBARASSING - but perhaps it will all help some other family avoid some of this at some point. I honestly just never thought id be the person dealing with a walker and loss of sensations and all this deeply personal stuff. I pray and pray and pray it improves which we all do believe it will.

My Neurosurgeon did say she thought we could look at tomorow (monday) as a release date - we'd have to do the PT first to get their help on my bathing, dressing, and all other ADL's - I guess that will happen in the morning im not honestly sure. Urology would probably end up doing out-patient testing re these issues to see about overall function and we'd just take it day to day. I just said to one of the nurses today I feel alot like a normal person masquarading as a patient as if we where to take away my lower 1/2 everything minus keeping the right leg which is fine (other than deep cramping at night which apparently also can be connected to this spine stuff) I feel normal - a tired, normal person who just happens to be having 1/2 of her lower 1/2 not work right. I definitely hate that feeling when you dont quite think you belong on a floor but yet you know you do bc you need there help. My Nrsg has been the one holding out on releasing me so it's not that her or the residents or nurses/aides make me feel like I shouldnt be here as they have all been really good, it's just that I as a person feel like I could just walk out and be normal excepy I know im not bc of the add on "accessories" for now. Weird for sure!

Mu sister, Mom, nephew, neice and brother in law came to visit today for a few hours which was very nice break and I think my sister and nephew miss me as much as I miss them and it has only been a week ago I saw them. I rode in the wheelchair (dont think I could make it those long distances with the walker yet ) which although extremelt uncomfortable it was so awesome to cruise the halls, go outside, go to the cafeteria and some of hte other places we walked around to and sat at. My nephew had a blast as well!

Will update when I know more,


Saturday, June 4, 2011

Day 5 Post-op weekend

Medications remain the same, compression stockings remain on 24hrs and continuing to work with walking w/the walker. (how many different w words could I just use in that sentence!?!). Sleep is pretty bad yet with about 2 hours last night in a row and then up for another few hours dozing on and off for an hour here and an hour there Probably about 4-5 non-solid hours of sleep and believe me I feel exactly like a sleepless zombie to! I feel like I read something and tatally cant remember it, the pages blur and I just doze off for 10-15mins during random things.

Neurosurgeon stopped by and said she'd like to just wait and see how the weekend goes, see what PT recommends and if we get to a point where we all feel like I can make the same improvements at home then we'll make arrangements for home rehab w/my own PT who I see and the in-hospital therapists just wrote down their info so my PT can contact them re cautious, slow rehab. My neurosurgeon just said she'd stop by again tomorrow and we'd decide what we think is best  - she emphasized that if needed she'd keep me in-patient but we also do want to get to the point soon of going home and hopefully PT here can help me figure out how to modify some things at my parents and at my house till I no longer have to use the walker for support. She took the dressings off of the incisions and said the right side where the valve sits is all dissolvable incisions and the back incusions (which they changed the dressing but still covered) is all incisions under the skin that will also dissolve on their own. Their is an impressive amount of bruising yet along the shunt tract but this too will improve. Otherwise ir's just a matter of getting normal bowel and bladder function (ie sensation) as right now I can go to the bathroom but have no sensation of going unless I hear it hitting the cup inside and no bowel since last monday =/ Such joys. (sarcasm)

I do still feel like there is slowwwwwww, sloooowwwwww progress despite this turning into a much longer stay then I ever anticipated! My Nsg said yesterday while her, the Pain Coord and the PT where in here that she was sorry to have traded me one big issue (the headaches/shunt) for another big issue but I dont hold anything against her bc in the long run she has probably saved me another spine surgery at that L5-S1 area of levels (which we knew from previous imaging was abnormal to begin with). and as long as this shunt doesnt malfunction my headaches are sooo improved and really just a little residual nausea which isnt bad compared to the headaches, nausea and vomiting + with the vomiting always came bladder loss of control... which I now wonder probably was related to that neuroma/spinal nerve bundle she found scarred together as that is the area of the spine thatcontrols all the functions and is why she thinks I am having issues now with sensation along the one leg/foot and whole behind. If the symptoms would have been present right after surgery we would have had more to be concerned about ie regaining that sensations/normal functions but since the problems didnt start till 3-4-5 hours after surgery when I was already laying flat for the 24 hrs that she thinks it is from swelling and inflammation as those nerves try to heal now.

More soon,
                               Side and back incisioms - sjunt track/catheter/valve/ HV device and reservoir

                              Back incision

Friday, June 3, 2011

Day 4 Post-op

Side incision where valve sits. No picture of back incusion yet.
Physical Therapy just stopped by this morning as did Pain Coord (unofficically on my team - more a colleague through APF but has been wonderful!!!). My Neurosurgeon also stopped by about this time and all talked, exchanged each of their input. Nrsg is increasing neuromodulator for neuropathic (nerve) pain. PT is ordering a walker to help ambulate as I can walk carefully, guardedly but not able to fully extend the left ankle down so walk on tip toe with that one. PT thought initially perphaps some in-pt rehab would be a good thing but thinks that therapy while I am here on Nrsg floor and under Dr.Bragg's care and then when I do get out of here she'd like my PT to consult with them re lighter rehab without stressing the nerves that where manipulated further and thus stressed/aggrevated. So far she just showed me one exercise I can do sitting down and has one I can do starting soon laying flat with gate belt also this one laying flat will only work on the ankle to knee muscles and not aggravate the lower spine causing further inflammation.  I went down for the MRI before in a wheelchair with cushions under my, knees, hips and mid/lower back - was about 30mins and thankfully I am so exhausted today (approx 2 hours of sleep last night) so I kept dozing in and out bc I have quite a bit of nausea and some dizziness from laying down and the trip across the hospital in the wheelchair + soreness.

My Neurosurgeon just said as far as release she was in no hurry to release me as she would rather we have everything sorted out and rehab in a good place with better ambulation on my own (with the walker for short term) and better control of the nerve irritation and resulting pain/numbness and the tingling in my foot/ankle with any kind of touch including anyone touching it.  So im not sure when i'll get out my dr didnt give a timeline just that I guess more day to day - coul be today by some miracle or tomorrow or who knows.

The steroids are both now oral 20mgs of solu-cortef vs 100mgs and the dexamethasone is 6 (I think off hand) oral. Other meds are being tweeked.

Will update more when I know more,
Take care,

Thursday, June 2, 2011

Day 3 Post op

Last night equaled about 4-5 hours asleep which is the most ive gotten since sunday night and made the night go a little faster. All meds cont most oral with the solu-cortef continuing being IV as well as 1 or 2 others PRN. (zofran, toradol). I did end up sleeping on my right side again all night which means that hip conts to be somewhat uncomfortable but there just is no sleeping directly on my back with direct pressure nor can I sleep on my left side as that pain/numbness is pretty bad and especially so with direct pressure. The ankle foot pain/tingling/numbess is also still the same and worse with any touch or with the little bit of walking ive been able to do to the bathroom or this morning to the chair to wash up for about 10 mins. My neurosurgeon stopped by and did her neuro check and ask about symptoms + said she'd stop back this afternoon right now I think she just would like to see the swelling and resulting symptoms go down some. I think one of the worst parts besides not being able to lay at all comfortably on my back or left side is that I take lasix daily and havent totally gotten back notmal bathroom function and so have to go often but takes a long time as it only is a little at a time so end up sitting there up to 30mins. Aggh!!!  Im not sure when im getting out of here, maybe tomorrow??

Will update again soon,


Wednesday, June 1, 2011

Post surgery day 2

Hello, not sure how much of this i'll get through but surgery went on well yesterday with just a couple hiccups. Because intubation was so difficult they just ended up going back to a LMA and doing the entire surgery with my being propped up on my left side/hip. This could bring it's own complications but they managed ok. My Neurosurgeon took apart and tested the shunt valve which is placed in my right side below rib cage and she said this looked 'suspicious' for problems so switched that out for a new one. She also removed the cathether tubing between the valve and lumbar shunt and replaced this. Because she wanted to add a reservoir to my shunt for easier testing in the future in addition to keeping the horizontal/vertical device so she had to take this out and move the entire devices/shunt down a level in which she found an exposed bundle of nerve roots from S1 that where literally sticking out in a very abnormal fashion (these nerves usually sit inside of the spine disc) and which where scarred together. Because this prevented the tubing and devices from being implanted she had to clean out this nerve bundle and go in to the dura which is what covers the spinal canal to repair this abnormality whch she thinks may be from repeated traumatic lumbar punctures. Because of this extra spinal surgery once I woke up in recovery the start to finish time for the surgery ended up being 6 hours vs the exoected relatively short 2 hours to just fix the shunt itself. I also had to lay flat the first 24 hours till about 2 today which was extremely difficult and really ended up being able to only lie flat on one side due to severe hip pain, leg pain and foot pain probably from both being on that hip for 6 hours and then swelling from the nerve bundle repair in addition to shunt placement at such a low level. Medications included teh solu-cortef, dialudid, normal avinza, alternated to oxycodone and then back to the dilaudid both IV and oral. (oral last longer and larger dose).
Today my Nsrg added toradol for inflammation, a higher dose of my normal lyrica for neurpathic pain and dexamethasone for an additional steroid to try and reduce inflammation in my spinal cord and thus her thought was in my buttocks, hip, down the leg and bottom of foot which that feels more like little zaps of pain and the rest is like deep nerve and musclular pain.
This afternoon after having the foley removed last night and a whee bit embarrassing straight caths I was able to get up with gate belt assistance and slow move across the room to go to the bathroom. Tonight I got the last dose of solu cortef (cortisol replacement - stress med) and will go to higher dose oral hydrocortisone tomorrow tapering down for 5 days. Im not sure when im getting out of here I havent walked on my own and in a lot of discomfort yet and my Nsrg hadnt given any aindication this morning. Yesterday after surgery when she went down to talk to my parents and then when I was in a room she told me maybe thurs or fri. We will see. My good friend Deb has been a huge asset as far as getting a good pain mngmt routine down and so while she isnt really one of my providers (we work together at APFAN here at UW) she went way out of her way to help and talk to my drs to work out what she felt was a best case plan of care. I am really thankful to her. One of my pastors from church stopped by tues later afternoon after I was in a room (also an hour drive down for them) and so while my hip was aweful feeling bc of the time on it in surgery the rest of my body wasnt yet worn off of the surgery meds. I am grateful to that kind time he took and that I have a church that cares even despite my never having really shared info about my medical history or previous surgeries with the church in the past. (ive been going there about 2 1/2 yrs and went to the same synod in the other cities I lived in also and at the church I grew up in some including the one pastor knew of my medical history and at the church  I went to in college which was smaller but same synod this pastor also knew of what I had/was going through.

I will update again when I have some time - needless to say I am just grateful that what I suspected as the problem really did turn out to be the source and my headaches have improved a great deal while also having NO low pressure headache which is something I had for atleast a week tapering down after all of my previous shunt surgeries! Im not kidding when I say this Nrsg is quite good and seems to really want to do everything she can. I think I accidentally stumbled into a truly good set up and provider - which makes me feel a little grateful and lucky bc in the past 6 months this is the 2nd new provider ive found that really seems to go out of their way to make sure things are the best they can be while also taking the time!

More soon,