Problems with dura patch

[katydee]

My daughter had decompression surgery over three years ago and still has the pain, exhaustion and other Chiari symptoms.  Her neurologist could not explain it and had no suggestions.  We finally took her out of state to the Chiari Institute on Long Island where Dr. Bolognese explained what was causing her poor recovery.  Her original neurosurgeon did not use a patch, instead stitching the edges of the dura to the muscles of the back of the neck causing a large meningocele to form.  Apparently this used to be an accepted way of doing the surgery but since the dura is not perfectly sealed with a patch, contaminants are entering the csf and causing chronic chemical meningitis.  His recommendation is to reopen the dura, create a patch from beneath her scalp, and put in a shunt to monitor the possible increase in pressure.  He would also shave off part of the tonsils that still linger.  Has anyone heard of that??  I've heard good things about Dr. B but wonder if I should get a third opinion.  Has anyone else had the no-patch surgery?  Any recommendations on NS in the northeast?

[selmaS]

  Hi, I had my surgery at TCI 4.5 yrs ago.....and I know they do not treat everyone the same they look at each and suggest what is best for that person.

I did have my patch from skin harvested from my scalp, and I had a drain to help prevent a buildup of pressure while still in ICU....

My only continuing issues are due to other conditions....not my Chiari....

So as far as removing part of the tonsil this is to create more room...mine were cauterized....not cut, but ur DD's may be longer and wrapped around  things .....again, they look at the individual there and do what they feel is best for them.

Dr B is one of the best in the country ,.....he did not do my surgery but was in the OR with me.....

If u still are not sure, u should get other opinions.....I have heard of the older method and I know there are a few Drs out there still doing it, but they generally are not the type of Dr we consider to be true Chiari specialists in they  do not do research and devote all their time with Chiari and related conditions....so if u compare do so with another true specialist..

[katydee]

Thanks for your reply, Selma.  I liked Dr. B very much and felt confident that he understood my DD's present condition.  The cauterization idea threw me at first, assuming that all parts of the brain have some function.  He said she wouldn't miss the part they removed.  I guess you didn't notice any deficit in that department?  Anyway, regarding the first NS, the reason we chose him was that he was considered an expert in CM surgery, had done so many decompressions, and was published in research journals on the subject.  Dr. B even uses a programmabile shunt valve that the first Dr. helped to develop.  However, I think his age (>70 yrs) could be a factor in that he might be set in his ways, preferring the old method.  It's tough finding a balance between experience and "cutting-edge" technology.  I just wish we had been told there was more than one option regarding the patch.

[selmaS]

  I know what u mean, so many go to a NS and are told this is what I use on everyone....and we r all diff so they need to consider the patient  first not the patch ....

I didn't notice nething different...in fact all I could tell was I felt better directly after the surgery....meds play a big part in that so it is easy to think we can do all and have no issue, but that is short lived....then u have some return of symptoms as u heal and it takes time, but things should and do get better....

I can honestly say, for each yr that has passed I noticed marked improvement .....u do not notice it at the time but when u sit and look back, I think goodness last yr this time I could not do such and such and here I am doing it with out even thinking about it...

That is not to say I  do not have bad days as I do....I have TCS and EDS and they can cause some bad days....but knowing it is not Chiari helps....and I can still see I have improved that is the biggy for me....

Not that I think neone of 70 is too old to be active in the OR, but if they do not continue to use new methods that are tried and true, to continue to use out dated methods is more the issue....

Again, another reason I suggest we all talk with a few Chiari specialists not just one they need to be of the same caliber so u can compare...other wise u r comparing apples to oranges and that is not the same just bcuz they are fruit...same with a NS u can not say they are both a NS...u need to compare and then go with ur gut...it is all we can do other then educate ourselves so we know who to lean toward if our gut fails us.....

Sorry u and ur DD have to go thru all this again, and sending out prayers this will be the one to get her feeling right as rain : )