confused

[crash1279]

In 2001 I had a decompression surgery for acm my symptoms have never fully gone away. About a month ago I started experiencing extreme weakness in my legs and in the last week my arms. I had a mri done of my cervical spine which says I have a syrinx a pseudomeningocele a disc protrusion and a bulging disc. My neurologist says the only option is to treat the symptoms as surgery is too risky. He also stated that all damage already done is irreversable. I seem to be getting worse by the day. Does anyone know how true what my neuro told me is. I cannot do many things I use to and its only getting worse.

[*Stormy*]

Hello!

First thing I noticed in your post is that you are dealing with a NL and not a NS. I don't think you would get an accurate opinion from your NL on whether something surgical can be done about b/c it is really not their field. I would definitely get another opinion from a Chiari specialist if you can.

Also, did the syrinx just pop up recently? Or did you have it before the surgery in 2001? If it just came up now then I would definitely make sure you get looked at b/c if the the surgery did what it should then you should not be forming a syrinx!! I don't know about reversibility of symptoms but from my understanding, ppl with a sx have recieved relief when the sx shrinks. If that is the only option he is giving you, if it was me, I would get several other opinions b4 accepting that.

I pray that you will see some relief in your symptoms! Good luck.

Carolyn

[selmaS]

Chiarians r prone to autoimmune and connective tissue disorders like RA, DDD, so the disk problem is  not uncommon  if u have chiari.

It is very important that u get to a true chiari specialist like  Wolf said.....

"selma"

[ChiariWolf]

Just a word of caution. Most of us here have experienced seeing NS and or NL who don't specialize in Chiari. It really is worth the extra effort to find one that does truly understand Chiari. It is akin to taking your new shiny Harley to a Chevy dealer to get a dx. You just wouldn't do that! The same is true here, I learned the hard way, a Chiari Specialist understands the symptoms as well as their cause.

It sounds like you had the EMG test? They ran that on me as well. Before my dx of Chiari they felt that the ruptures in my neck were causing rgt shoulder problems as well as the low back problems. EMG came out clean showing no impingement. We do have a list of Dr's on this forum who do specialize in the treatment of Chiari, have you seen that list yet?

Wolf

[crash1279]

thank everyone for your responses. No there is no impingement although it is extremely close to touching the spinal cord. All I know is the pain gets worse each day. The neurologist gave me meds but told me to take them at night bc of the side effects well it helps a lil when I first wake up my legs nor arms are cramping but also I feel like I'm floating I don't want to feel "high" just to not hurt as the morning goes on my symptoms return. Idk if my neurologist is a chiari specialist I did not ask. I am definately gonna get a second opinion. Hope everyone has a blessed day gotta get ready for work.

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry ur symptoms r progressing as they r....no one should have to go thru this. Syringomyelia (syrinx) are not always something that can be treated with surgery as they can be too small for a shunt or stent.The pseudomeningocele is a result of ur other surgery....
and I am not sure what is done for this other than a possible drain.....

Do u know if ur bulging disk is causing ne impingement on ur spinal cord?

It is true if u have nerve damage , that it would be permanent ...did ur dr do tests to check?

Is ur NS a true chiari specialist?....I would consider getting a second opinion...and testing to know what all is going on....ie- if u indeed have nerve damage.

We r happy to have u join our little family here, so sorry for the reasons u had to seek us out.

"selma"

[ChiariWolf]

I do not know the answer to your question, sorry. However, for me personally I'd be looking for another NS with experience and get a second opinion. No NS is a God despite what some of them seem to think.

A few years back, nearly 6 years now, I was in a similar situation for different reasons. My lower back MRI showed no attachment between those lower vertebrea. They where floating around as I walked. I went through numerous NS who all said basically the same thing. They told me that because of the position and the curvature of my spine they could not do anything as surgery would lead to paralysis or death. They also said doing nothing 'could' yield the same result if I where to take a serious fall or get into a MVA. I let it go for a bit, after about 6 mos of anxiety over it my wife and I set out to find another surgeon. We found a NS, very humble guy, who listened to my concerns, listened to what others doctors had said, then said Ok I can do this. Well the questions came one of which was "How many times have you done this before" this is a question that I use to see if they are honest with me or not. This guy leaned back against the wall, got very quiet and said "Yes, I've done it before. Twice I've done it in my career. One time was very sucessuful." I asked him about the other and he told us that that particular case was his first time with a back like mine and it did not turn out well.

Long story short, it turned out very successful. Don't ever cut yourself short because of one mans opinion. True we are imperfect and human so everything doesn't have a fix so to speak. But You deserve the best. Gather your wits about you, calm your mind and find another NS for another opinion. JMHO

Sincerely
Wolf