Chiari/syringomyelia diagnosis whirlwind

[kmk431]

I found out less than a month ago I have chiari 1 and syringomyelia and surgery is needed. I will be having surgery in less than 2 weeks. Trying to stay positive. Feel confident in my choice of doctor and facility (although there are some trying to put doubts in my head from other forums). It is an easy and hard decision all at once. I know it needs to be done, but the risks. Then I think am I just being a baby about the pain and should I just deal with it. But then I think no, it is damaging your nerves and life wont be like I know it if nerves continue to be damaged. I was told my syrinx is very large and doing damage. Just looking for support I guess from others like me. I have EXTREMELY supportive family and friends, but they do not know all that is going on in my head and can't truly understand it all.

[selmaS]

  Well, we all have our own deff of a specialist...mine is one that has their whole practice focused on chiari and chiari related conditions....

In 20 yrs, a NS can do quite a few surgeries for chiari, but  they do not do research on chiari like one that has their focus on chiari...

The problem is what did he tell u...how did he say the surgery should impact u?

Doubters r out there bcuz many of us have seen NS's with egos that do the surgeries many times but do not have the experience for a surprise when they r inside...and that is when the patient has issues during recovery...set backs that the NS can not seem to see when the patient describes the problems they r having post op.....

The others may be trying to warn u, and may not be doubters....just not well informed as to how to explain y they were concerned.

I always like to say it like this...a car mechanic can work on a car...ne car...for ne issue right?....would u take a foreign car with a transmission problem to a brake specialist?.. or  transmission specialist for cars made in the USA?.they both r mechanics?...both r
qualified....But there is a diff in the experience one will have over the other bcuz of how  much time is spent doing that one thing....

And this is ur brain....u have to make the decision, u have to know what is best for u.....and only u can make that choice.

Follow ur gut....know all u can about ur dr, ur condition...and go from there.

  Know that regardless of whom u pick, there is no way to know how ur body will respond to the surgery....so, even with the best dr u could develop set backs u did not expect....that is part of the risk of this surgery....

  Make sure u have a good NL set up for ur post op care....and that ur PCP is brought up to date on what chiari is so he/she can help in ur overall care.

   "selma"

[kmk431]

I asked the dr, "I am not your 2nd, 3rd, or 4th surgery right?" and he said no I have done a lot of them. He has been practicing medicine for over 20 years, board certified, has a partner who does many chiari surgeries in peds and teenagers. I feel I do have confidence in his ability, so should I just ignore all the doubters? or are there doubts going to creep into me??? so just because his name is not out there on a chiari site doesn't mean he is not a great doctor and has not dealt with the condition.

[selmaS]

  Hi and welcome to the Chiari forum.

  Surgery is only suggested and needed if ur chiari/syringomyelia is affecting ur overall health....when it does the benefits usually out weight the risks...and there r risks as with ne surgery.

Having the right NS is key....and with ur dx and surgery being so close together...could be y u or others around u giving u doubts....

Look to how experienced the NS is...how frequently he sees and treats chiari/syringomyelia patients.....and u being comfortable with the dr is key too....

There r many drs that do not understand chiari, so do not fault ur friends...but do invite them to join us here, if just to get an idea of what  u r going thru.

  "selma"