is surgery always require if csf is restricted?

[Munchies2012]

Im still not particularly interested in getting surgery. But seeing some comments lately made on these boards I feel the need to ask...

I was told I have restricted flow. I dont know how

I was told I had no syrinx. But I dont think the scan was a full spine.

I have "mild" sleep apnea I think less than 10 times an hour I stopped breathing in the study. Oxygen levels remained good. On my second sleep study the report was negative pretty vague but I guess that means its barely even mild aponea.

as for other related conditions. I am un aware or any I have. I will enquire about other tests when I go see neurologist next april. The ns "specialist" I saw was only interested in talking to me if I wanted my head cut open. He basically told me to get lost till I wanted this done... he was very rude..


rambling over.... just cause I have restricted flow.. does that mean I need surgery? Or can I still go on living with it and watch and wait for anything to worsen?

[wonderchiari]

hey I am also from India., ...This place is really a solace for ACM patients ..Please check your inbox for my msg.

[ninigrli]

@ram1
I did read the post but it doesn't say why u needed a second surgery and where it was done. You can send me a mail if you don't want to post. I am jus curious as I plan to see another NS for new symptoms after initial decompr. Did they do another CINE prior to the second surgery or wass it a leak??

[ram1]

Can you see the post by me "Is there anyway for a normal life?"

[girlinxile]

I went back and forth about the surgery. I knew it was time when the symptoms became unmanageable and daily and my work was affected. Now I am counting down the days SO READY to get this fixed becuase it has been a very rough few weeks. I feel like you will know when you know. But if you don't, I would get regular follow ups

[ninigrli]

@ Ram1
Do u mind sharing your symptoms before and after surgery? What was the reason for the second surgery? Was it done by the same Ns and was Dr a chiari specialist.

[Munchies2012]

:( maybe you had more than chiari going on? Were u tested for other conditions beforehand?

[ram1]

till now more than 20 DRs I have met..but all r saying taking physiotherapy is the only choice i had.i am suffering a lot ,i don't want any more people to suffer like me.that's y

[Munchies2012]

Ram1.. so sorry to hear that :( but everyone recovers different. I cannot base my decision on others out comes.

if u find u are worse after surgery. Why dont you find another specialist to help try and rectify your problems :(

[ram1]

Pls don't go for surgery.i had two surgeries for chiari malformation.but my condition is worst after surgery only.

[ninigrli]

@munchies2012
I have the same question you do the only difference is I've had the decompression surgery done already and now having symptoms that I never had and having to seek help somewhere else. I was told I have an obstruction in CSF and its was either do surgery or nothing.

Please take your time to do more research, ask lots of questions and see a Chiari Specialist. My NS was meant to be a specialist but after reading the post on this site, I now know that there are those that call themselves so called Chiari Specialist because they work for one of the best hopitals in d country smh.

SelmaS is right. Because you have an obstruction in CSf with no syrinx doent mean syrinx cannot develop. I didn't have any collection of CSF and did not want to have it.

[selmaS]

  I know what u mean....a few I went to could not say it ....it is frustrating to say the least....

I pray ur next Dr is more helpful, knowledgeable and experienced with Chiari and related conditions.

Keep us posted.

[Munchies2012]

I saw his name on a few pages thats why I requested to see him. And he was just as useless as a normal gp... my nl retired. And will see a new one next april. I will request a full spinal mri and all other stuff I hope he or she knows about chiari... sick of seeing doctors that tell me they had to google the condition... idiots. ..

[selmaS]

  Not everyone is who they claim to be....there are many that say they are Chiari specialists bcuz they do a few chiari decompression surgeries a yr....but in my opinion that does not make them a specialist....what does is one that not only does decompression surgeries, but research and looks for all related conditions b4 suggesting surgery.

And yes a NS will only want to see u if u want surgery as that is what they do....they do not DX....only treat with surgery....and that is the rub as they are the only ones that know Chiari so it is difficult for us to navigate with out a Dr....so u also need a good NL or PCP that is willing to learn and work with u.....

As far as no surgery...again that is up to u, if ur symptoms are manageable...but know a syrinx can form very slowly over time or very fast....so u need to be aware of changes to symptoms....

Have u ruled out a syrinx in all areas of the spine? Lumbar, thoracic and cervical....? If so, these are the areas to watch, not just the cervical spine where many Drs stop the search....

From what I understand those that have more issues, syrinx's  or more obstruction can take longer to heal....I did not have a syrinx, but I also did not want one to form from the obstruction I had plus,.having drop attacks was too much for me, so I had surgery to prevent the formation of a syrinx...we all have to decide when and if the time is right by educating ourselves and knowing when and who is the right Dr for us....

I have no idea who created the Ann Conroy List, only posted it so u have a place to find names to research....do not accept they are specialists or right for u by being on the list...and see more then one to compare them.

[Munchies2012]

The thing is his is a suppose specialist lol he is listed on a ann conroy trust ? I think it was (uk based)

yea some blockage. But not total blocked just restricted flow so its still getting there and back! Just not at a pace it should be :/

[frankie_rush]

First thing is you sound like you do no like him at all.  So first thing I would do is find me a Chairi specialist .  Cause if you are not comfortable with him it is not going to be a good help.  With him telling you got obstructed flow but not a syrnix.  I am not a doctor but that is what it is called when being blocked.

[desertstorm2009]

Munchie, Hello...
It doesn't really matter what the Dr's say because you will know when and if you need your surgery. Your symptoms will present themselves to the point it becomes necessary. Until then, thank your lucky stars and remember, the decision is always yours :-) Lisa

[Munchies2012]

I dont know how much*