Chiari Online Support Group

Chairi specialist in South Africa


#1

Looking for a knowledgeable neurologist with a specialisation/interest in Chiari in Johannesburg area to assist with rehab after surgery?


#2

Hello

To be very honest i searched all over joburg for a good specialist but unfortunatly they all gave me tge same result 50 50 chances…

However i did my surgery in kzn and the doc who did mine gave me and my family a promising outcome a 80 10. he even went on to do it even though i had no medical aid im now post opp by 2 months and symptoms are going away slowly as i progress…

I am going now to a physio in benoni who deals with recovery of chairi opperations… i will be gladly to recomend…


#3

Hi T

I coincidently live in Benoni so will be very happy to get the name of your physio, thanks. Glad to hear you are recovering well and think that is the right approach to go to a movement specialist quick as possible. I waited a bit long but hope its not too late.


#4

Haha lol me too im going to a physio in northmead called solomon and long physiotherapist… 011 849 3721/ 011425 5031… ask for the indian lady lol who deals with the recovery… i really hope you het better stay strong if there is anything else let me know


#5

Thank you very much. Will give them a call today!


#6

I hope she can help you please keep me updated on your progress


#7

will do


#8

How was the physio


#9

Hey T
I am full of hope because she seems to think that I can regain some sensation and balance coordination. I haven’t started yet as the sessions was spent on diagnosis of symptoms and then dealing with water retention and trying to open lymph glands. But thank you, she has given me some cautious hope :slightly_smiling_face:


#10

Wow, to have contact with fellow chiarians in Gauteng is new to me. Dr Van der Meulen at Union Hospital in Alberton did my decompression. He is an excellent surgeon. How is it going painwise with you?


#11

Hi Flerrie
Yes good to know we are not alone hey! I am fortunate that I have never really experienced much pain, rather for me it is neuropathy and associated problems that I have been dealing with. I read in one of your posts that you were diagnosed 35 years ago - wow it must have been quite a ride dealing with the symptoms for all those years?


#12

Have you done any kind of rehab?


#13

Hi Ray, I had a lot of bad headaches, stopped gym because of Chiari causing me to feel nauseous etc. The worse was when the pressure built up so badly we simply then had to go ahead with decompression. I took extreme care always. Sometimes go for massage. I manage to work 3 days a week teaching art at a private school. Have not needed to do any rehab. What is your situation Ray? Nice to hear from you.


#14

Glad to hear you are up and about. I am battling with balance, neuropathy and small things like tinnitus, sleep disturbance etc but other than that I am fortunate to be quite healthy and still work and get about as usual.


#15

Ray, have you had decompression? I used to fall a lot. That is sorted. I have tinitus. I do have issues like not finding a word etc. I used to battle with sleeplessness, problems falling asleep, heart palpitations when I lay on my pillow… that is all under control. So, when I see how much other people suffer I count my blessings. I have two gp’s who both understand and know Chiari. My optometrist has all the patience in the world with me as it is always a struggle to get the script right. Always varies from one day to the next. But my problems are the least. God is good to me and life goes on.


#16

Hi Flerrie
Yes had surgery 7 months ago and got better then started deteriorating again about three months afterwards. So don’t know why doctors seem to think all is ok with surgery and brain. So guess its one of those wait and see scenarios.


#17

Hi Ray, where is your neurosurgeon? What has changed since the third month after your decompression?


#18

Surgeon was JJ du Plessis in PTA
Since three months after surgery (first three months felt great was able to walk properly again for a while etc) then my balance issues got worse, numb disassociated feet (as in they don’t know where they are in space until I look at them to calibrate my mind), tinnitus returned on and off, peripheral neuropathy growing and affecting fingers etc, temperature control poor etc.


#19

Has your neuro done tests and checked to see what the reason was for this? You might benefit from a second opinion if you not happy with your neuro’s response. Would recommend Dr Van Der Meulen at Union Hospital in Alberton. Excellent neuro. Been with him for around 13 Years.


#20

Thanks Flerrie. Had to laugh… when I told the neurosurgeon at the 6 month check-up he shrugged his shoulders and coldly told me “Ah well, we tried… he then greeted me and said goodbye.”
I think I need to see a goooood neurologist (not surgeon) as mine says the brain has returned to a normal position and CSF is not restricted any more - only slight pressure at rear.