Seeing support for cervical myelopathy

[Pattycakes1990]

I am looking for people I can talk to, relate to and share information on life after surgery for cervical myelopathy

[Hidden]

Hi pattycakes, everyone as a different story to tell and we all have similar symptoms but some are detected quickly and some so not, I have already applied on other post to you on here I only know of traypod and moderator who keep in touch we spread our knowledge , personally I think cervical myelopathy is poorly understood but there are people who are trying to learn more DRS etc but like as of today we are told no cure

[SheilaDugan Administrator]

Hi Pattycakes,

While all operations are different and unique in there own way. Feel free to look me up on Facebook if you just want to talk. I have had 2 fusions and may be a bit on the extreme as they waited too long to diagnose and I now spend most of my time outside my home in a wheelchair.

[Pattycakes1990 in reply to SheilaDugan]

I will look you up and my heart and prayers go out to you and thanks for responding

[Hidden]

Hi patty cakes I am in the same situation as you I have had 4surgerys all together and now waiting to see urologist, this never ends

[Pattycakes1990 in reply to Hidden]

4 surgeries????? What type of surgeries were they?

[Hidden]

I am 3 years out 2level ACDF in pain night and day. How about you?

[Pattycakes1990 in reply to Hidden]

I had my 2nd surgery in October and this time it as anterior and posterior discectomy, decompression and fusion. I still have difficulty with walking my balance and my strength is gone. I’m so weak and struggling at work

[jointpain in reply to Pattycakes1990]

Hi I have just read your post, may I ask you if you feel happy that you had the operations, or could you have coped with the way you were?

[Hidden in reply to jointpain]

They told me if I didn’t have surgery I would be in a wheelchair. I am not cured by any means and now 3 years later I’ve been asked to have revision posterior,( this time)ACDF 🤦🏻‍♀️

[Hidden in reply to Hidden]

Hi nyjaded, how are you and what is revision posterior acdf , had acdf c4c5 ,2013 , I have just rang the neuro hospital because I have not heard anything they said it could be up to 15 weeks I asked about any cancellations it's getting worse.

[Hidden]

That is a difficult recovery, that surgery. I can tell you that it took 2 years minimum for my surgery to “settle”. I don’t know how you are coping at work. I know I can not work anymore. Thank GD that the SSDI was approved, a miracle from heaven. I am sorry this condition sucks so much. Sending hugs🙏💙😇

[SheilaDugan Administrator]

Pattycakes, I can be found on FB Sheila Thomas Dugan. Sorry I realized I wasn't very specific.

[SheilaDugan Administrator]

Pattycakes have you looked up the Myelopathy Support Group on Facebook I do think it may provide more coping strategies.