Friday, March 16, 2012

Shunt failure aka intermittent obstruction and occlusion.

So I flipped around the original appt from today to next thurs with the appt w/neurosurgery that I had changed to next thurs and made that today. The other appt is a hand surgeon appt more or less because of carpal tunnel re-occurence (not new though has been since last spring I just put it off) and since it has been well over a year that ive had the thenar tendon transfer in my right hand I guess i'll get details on my L hand at the appt next week. Im not sure if i'll have it done in my L hand though -not because it didnt help alot in my other hand but because the recovery with no use of that hand is so long (3 months hard cast) and I dont have tons of strenght in my R hand plus even if L hand bothers me atleast I can still open containers. We'll see.

So anyways I saw Dr.Bragg today and she in her usual good style tested the shunt reservoir refill time right away and noted this is very slow to refill so no need to even do the shunt tap as she knew it would just show very little CSF able to be drawn out due to partial catheter obstruction again.
Not that I didnt know the answer but I guess out of hating these shunts issues, disliking taking her time (she really is so fantastic though and she + her nurse really are so easy to talk to.)  and just wanting the shunt to be good for a whole lot longer of a time I asked her do alot of their  shunt pts really have this happen so often and she talked about a few other of their patients experiences and how the small non-elastic ventricles create the suction instead of continous drain. (today's analogy was like sucking jello through a straw; you may get some but it will leave some jello (brain material) behind in the straw (shunt) and this in time causes the straw (ventricles) to become clogged.) She also said she really believes even though we got a much better symptom result with this latest valve (the programmable)  and having it set at the  lowest setting she does think I still need to drain more CSF and talked about oneof her partners patients who has both a VP shunt as well as a LP shunt to maximize drainage and symptom resolution long term. I dont think she has fully decided on what she will do this next revision and didnt seem like she wanted to add a 2nd drain so I do think per her style she will be looking at different options right up till surgery which is fine.  One other option she talked some about was moving the tip of the shunt catheter further in to the 3rd ventricle and I think the foramen of monroe but honestly cant remember if it was that or the foramen of magnum to get the tip to a space that is more 'fixed' and less elastic and less likely for tissue to occlude because less likely for ventricle to collapse and occlude and eventually obstruct.

Her nurse is calling on mon with the surgery date and in the mean time I will schedule pre-op since the last surgery a month ago (this weekend :=/ ) we slid under the 30day pre-op rule w/just 2 or 3 days before it would have expired. If you have a pre-op on file from one surgery and have another surgery within that following 30 days the paperwork and pre-op results still count so this time we have to get it done again as this will be 3rd surgery since mid-Jan (and many moons more since last May) but the last pre-op was mid-Jan. bc of the surgery in Febr being w/in a month. I think my PCP knows the drill well by now. I'll see if I can do that mon after ERT since my  PCP is next door to CHW/infusion.  I asked Dr.Bragg if we could not do the revision next week since although I want to feel better I want to keep up a promise I made to my sister for my 5 1/2 yr old nephew  a couple weeks ago Sara, my sister had  asked if I might be able to watch Zander on tues-weds-thurs and fri next week in between his 4K, early childhood and ABA classes. I cant watch him thurs but agreed for tues-weds and fri and really he is so busy both in 4K (which i'll drop him off at and pick him up from) from 7:45-11 and then ABA usually 11:30-1 and tues early childhood he goes to at noon. I'll have to get him up, help him pick out clothes, make breakfast and lunch but otherwise not to bad.  I drop him by his Dad on Weds and fri at 2 so I can get to the others things I have going on. For that kiddo id bend over backwards, stand on my head and do cartwheels (non of which I can do!) to make sure he's happy as he means the world to me. I can live with my symptoms for that extra week if it means being there for him. Lisa, Dr.Bragg's nurse said to me on the way out that not that many patients who need brain surgery put someone else before their own needs/how they feel and she's so right and I told her Z is as close to having my own kid as im ever going to get so sometimes we do nutty things to ourselves for someone who means everything and the moon! :)

For those unfamiliar with shunts who may wonder why so many shunt malfunctions and revisions I thought id post a  tidbit of info on the statistical average for shunt failures in the first month alone which is 50-60% and 45-50% the first few months and not a whole lot better after that. Research is on-going in how to improve this and my neurosurgeon + her colleagues are continually researching and looking at different ways to get long term results in their hydrocephalus patients. I am glad she thinks outside the box and too doesnt just judge me how I 'might' be feeling based off how I look. (ie some people assume if you look good you cant possibly feel bad). Very few people as ive talked about before are great at just looking at me and figuring out how im feeling.

Dr.Bragg had asked about pain medication if there is anything ive used in the past (she has asked this before in an attempt to help) that really would help these headaches especially since I asked to wait a extra week on the surgery and she is just that kind of provider that really wants to help her pts in any way.   I am on a 1 every 7 days pain patch, a neuromodulator (for nerve discomfort/pain) and a immediate release pain med as needed and the only thing I could really think about on the way home after we had talked about it some was a steroid but even that im not sure can be used as I take twice daily hydrocortisone which is a form of long term steroid for cortisol (bodies stress hormone). I may ask her nurse about that when she calls mon but the things that really make the H/A's worse I avoid like laying flat, laying back against pillows (versus fully propped up) and during the day the headaches ebb and flow.   A couple things ive thought of to ask Dr.Bragg and which I emailed her from our conversation and some subsequent reading I was doing on pubmed and google yesterday was 1. since she commented about do we need to drain more CSF can this theory be tested by placing a lumbar EVD (external drain usually placed in the ventricle) in addition to having the VP shunt open and running? The other was can a brain and spine MRI dye study be done to see if dye gets fully through spine and brain with no obstruction from compression or  potential obstruction(s).

As she was leaving Dr.Bragg commented jokingly that it's a good thing she likes me and my family alot since we spend so much time together and I replied back to her and her nurse that I also am lucky to have in her particular position on my team since she gets it! And I totally mean it, I cant imagine going through all of this with someone who just wasnt as good natured as she is and I also am grateful as ive said before that she has an interest in hydro!

The only other thing really going on is the cardiac stuff and my cardiologist was going to review my chart and try to come up with a 'next step' - im not sure what he'll decide if anything and will fup on that in the next few days. Its just another symptom so no rush on my part and I still dont really know that it is cardiac related. I think it is but not sure. ** I got an email from him today and he wants me to come in to the clinic =/ so ive talked to his secretary and they are figuring that out; im unsure if it will be next week or when.

I guess i'll try to update soon but otherwise be well and enjoy this weather wherever you are reading this from! Here in WI it has been absolutely gorgeous for March and no snow to be seen anywhere around!!


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