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Syringomylia
I have a syringomylia & I had a drain inserted in 2009, after the operation my symptoms improved slightly but now 3 and a half years on all the problems are coming back, I have lose of use in my right leg, bad sensation in my left leg, numbness in both feet, and much more, I need to know if there is a specialist in Europe that can help me. I have had a bombardment of drugs & have had enough, I'm looking for real help
Hello Johnbox,
I also have Syringomylia.
When your symptoms worstened after 3.5 years, did you srynx begin to enlarge again indicating that the drain had possibly clogged?
I also have Syringomylia.
When your symptoms worstened after 3.5 years, did you srynx begin to enlarge again indicating that the drain had possibly clogged?
1 Comments
Hi and welcome to the Chiari forum.
Since this is an older thread the member you are addressing may no longer be an active member.you could try and send a PM (private message) which should generate an e-mail to the member letting them know someone is trying to communicate....if no reply, then do create a new thread on this topic to get active members to respond.
Since this is an older thread the member you are addressing may no longer be an active member.you could try and send a PM (private message) which should generate an e-mail to the member letting them know someone is trying to communicate....if no reply, then do create a new thread on this topic to get active members to respond.
COMMUNITY LEADER
Well with Chiari ur days can slip by like a dream too just the brain fog from it can do that ....then add meds and we r zombies....
I know how u feel....and it is hard to find the right mix that works and allows us to feel human....If u have a good Dr he will be able to narrow down what will work best for u, but for the most part it is trial and error.
Yes I take tramadol 50mg three times a day for Paine, Pregabalin 150 mg in the morning & Pregabalin 300mg in the evening,for muscular spasm, It's a very delicate balance and the timing is crucial ,I have tride other medications but this seems to have buckled the Paine, but as I said these drugs are very tiring & my days just seem to slip past in a dream,
COMMUNITY LEADER
Sorry I posted my reply to u above...lol... and looks like I am saying it all to Ray....
this is for u-
Oh ok so urs is acquired from an injury.....
As Ray pointed out, shuts and stents are not always a viable option as - one, u may be allergic to the material the shunt is made from and cause more CSF to be produced or an infection as ur body rejects the shunt.
two- shunts can be affected by Ipads(programmable ones) ans they can malfunction, and get blocked....
three- many times the shunt or stents are too large for the syrinx, and can not even be used....
Ray can talk to u in regards to how one may feel with a syrinx, I do not have one, he does....I do know that they can cause many issues, numbness, loss of feeling, and pain....
May I ask what meds u r on?
COMMUNITY LEADER
Not sure y u r sorry, u added some important info....no worries : )
Oh ok so urs is acquired from an injury.....
As Ray pointed out, shuts and stents are not always a viable option as - one, u may be allergic to the material the shunt is made from and cause more CSF to be produced or an infection as ur body rejects the shunt.
two- shunts can be affected by Ipads(programmable ones) ans they can malfunction, and get blocked....
three- many times the shunt or stents are too large for the syrinx, and can not even be used....
Ray can talk to u in regards to how one may feel with a syrinx, I do not have one, he does....I do know that they can cause many issues, numbness, loss of feeling, and pain....
May I ask what meds u r on?
Hi and thank you for you interest in my case, the answere to your question is that my syringomylia formed many years after an impact to my spine,I now have the paine prity much under controle but the medication is taking over my life,it's for this reason I'm in search of further surgical treatment,
As selma has alluded to it is important to know the cause of your syrinx (acquired or congenital)
Treating the cause is the best way forward.
I have read that spinal shunts can be problematic, shunt failure can lead to a syrinx expansion making symptoms worse.
Treating the cause is the best way forward.
I have read that spinal shunts can be problematic, shunt failure can lead to a syrinx expansion making symptoms worse.
COMMUNITY LEADER
Hi and welcome to the Chiari /.Syringomyelia forum.
May I ask, is ur syringomyelia acquired or congenital?
Did ur Drs rule out Chiari as a cause of ur syrinx?
There is a list of Drs for the UK it is from the Ann Conroy Trust.....http://www.medhelp.org/health_pages/list?cid=186
This list is in the Health Pages....be advised I do not know these Drs or how the Trust selects them,,,,but I am sure it is a good place to start in calling them....Chiari Drs will know about syringomyelia and other related conditions.
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