Re: hi to all from istanbul..!!!

[Guest guest]

I write to welcome you to this fine and wonderful community. I am curious to

know what medical care is like in Istanbul; especially with neurosurgery and

treatment of TSC. I am one who has had my cord de-tethered twice now. You ask

why people have recurrent surgeries. For me it was a matter of symptoms

progressing to a dangerous level, that in the future would cause irreversible

nerve damage. Luckily, I do not have pain in my legs when I walk or run. I do

live with recurrent nerve pain in my lower back and some numbness and tingling

in my legs. With any luck, I will not have to have surgery again... it is my

hope anyhow. The one thing with this condition, beyond anything else is,

uncertainty.

I hope you find comfort and good advice here. Be well.

eser wrote:

i'm a new member from turkey istanbul..! this is a fantatic grop and i

think it si so helpfull to lots of patients from all over the world. i

borned having a Spina Bifida and 7 years ago (now i'm 19) they

diognised tethered cord syndrome they said i need surgery but i was'Nt

havin any pain or something else about the illness and hear that it can

be re-tethered again and again so i refused to have any surgery but now

i have some pain in my legs sometimes and when i tried to run i can't

do it i wanna know if there is anyonr that had no surgery and got so

worse after years????????? i was shocked when i read here like " my

second surgery my 4th surgery detethering " why they keep having surgery

if it is re-tethered again and again ...! thanks to moderator for

creating this group it is wonderful to share your problems ann datas...!

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email kathy@...,michelle@...,

rick@...

[Guest guest]

I write to welcome you to this fine and wonderful community. I am curious to

know what medical care is like in Istanbul; especially with neurosurgery and

treatment of TSC. I am one who has had my cord de-tethered twice now. You ask

why people have recurrent surgeries. For me it was a matter of symptoms

progressing to a dangerous level, that in the future would cause irreversible

nerve damage. Luckily, I do not have pain in my legs when I walk or run. I do

live with recurrent nerve pain in my lower back and some numbness and tingling

in my legs. With any luck, I will not have to have surgery again... it is my

hope anyhow. The one thing with this condition, beyond anything else is,

uncertainty.

I hope you find comfort and good advice here. Be well.

eser wrote:

i'm a new member from turkey istanbul..! this is a fantatic grop and i

think it si so helpfull to lots of patients from all over the world. i

borned having a Spina Bifida and 7 years ago (now i'm 19) they

diognised tethered cord syndrome they said i need surgery but i was'Nt

havin any pain or something else about the illness and hear that it can

be re-tethered again and again so i refused to have any surgery but now

i have some pain in my legs sometimes and when i tried to run i can't

do it i wanna know if there is anyonr that had no surgery and got so

worse after years????????? i was shocked when i read here like " my

second surgery my 4th surgery detethering " why they keep having surgery

if it is re-tethered again and again ...! thanks to moderator for

creating this group it is wonderful to share your problems ann datas...!

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email kathy@...,michelle@...,

rick@...