bachache

when i visited the ns i said that i was having backache which also caused pain going into my legs. I also get tingling and numbness in my feet. The ns said that this was propably not related to chiari. Has anyone else had trouble with back/leg pain or is this a seperate issue????

[rod44]

Is your NS a CM expert?
Have you had a full spinal MRI?

yes it could be a Chiari problem or due to one of the many related CM problems...

Ray

[max666]

ive only met with my ns once and dont think he is a cm expert although said he has done the procedure before. Have not had a spinal mri. The next time i see the ns will be when im admitted for the surgery, dont know if they will do any tests before op.

[rod44]

Surgery is recognised as a treatment not a cure, it's aim is to improve quality of life and to arrest progression of the condition, a full MRI is very important as there are other issues such as Syringomyelia,  DDD  (Degenerative Disk Disease) and overcrowding leading to an obstruction of CSF that may need to be addressed . I dont know if you can get a second opinion or if you can get a copy of your medical records under the NHS but I would strongly advise doing so for the purposes of a second opinion and also having a chat with your GP about your surgery. Most here will agree the most important thing is to have a NS who has good experience of dealing with CM.
Do you know the depth of your herniation?

Ray

Ray

[max666]

haven't really been told that much. I did see another doctor before who wrote on a piece of paper Arnold Chiari Malformation and tonsils upto c2 and syring at c2/3 but this has never really been explained to me. Have found most information by joining here.

[rod44]

I think "Syring" is a Syrinx. this is a cyst in the spinal cord. For more on Syrinx (Syringomyelia) look in the health pages (Top right of this page)

http://www.medhelp.org/health_pages/Neurological-Disorders/What-Is-Syringomyelia/show/645?cid=186

http://www.medhelp.org/health_pages/Neurological-Disorders/What-is-Chiari-Malformation/show/125?cid=186

[denverluv]

I am not a dr- not anywhere close to knowing alot about all this (WHERE IS EVERYBODY? lol) but your numbness and pain could be caused by your syrinx and the fact you havent had a MRI or at least on your back is a little worrisome to me. The numbness and pain really is more of a syrinx issue, but maybe your dr is thinking just doing the chiari surgery is going to help collapse the syrinx- but if you have a syrinx due to tethering of the spine then the chiari decompression is only going to help that syrinx so much - I would ask him if that is where he is going with this. Some doctors want to think that just because you have no symptoms of scoliosis (more of a reason to have a tethered cord) that you don't have it. The only way to know is withat least an X-ray of your back. That way at lease you know exactly what is going on. because if you just have the decompression, then it turns out you also had the syrinx due to a tethered cord, you will be basically having this surgery for not alot of benefit.

[*Stormy*]

Backache and pain down my legs, with tingling, burning and numbness (esp in feet) has always been a major issue with me and definitely from Chiari. I agree that you should think about getting another opinion not only b/c a Chiari specialist would probably know this but also b/c it sounds like you are not getting all the tests and info that you need.

As well, my most severe symptom was a severaly affected gait, making it difficult and painful to walk even a short distance (not to mention the awkwardness). No syrinx was found on my MRI's and I was told that it was caused by the intense pressure around my spinal cord...so you don't even have to have a syrinx to have these symptoms. But it sounds like you do, so it is even more concerning that they haven't linked the two together.

My advice is that before you have surgery, you should go see your NS and get all your questions answered and everything explained to you. Your NS may be a good choice but you definitely need to get more information.

Take care
Carolyn

[selmaS]

HI ...well it is a holiday weekend here and a sunny one at that...so as teh days get warmer we get a bit slower on here....


I did want to add to what denverluv has mentioned in that if u have chiari surgery and u have TC many times u get worse right after surgery as the chiari was being pulled down and this just allows it to go further down when more room is made.This is why several chiari drs would do a TC release b4 a PFD. In those they haven't done that they end up doing one right away with in 6 weeks of the PFD, I was lucky as I did not have a whiplash effect on mine, but was still told I needed the surgery for TC.


It is possible that the PFD will help drain the syrinx...but sometimes they refill....so be open about the diff senerios(sp) and good luck.

"selma"