Hi. I had my decompression surgery in January. They did a 5.5" incision, removed part of my skull, took out a piece of spine and graft my dura. I felt awesome at about day 10, but at 5 weeks, ALL THE SYMPTOMS came back. I’ve done an MRI and now a spinal tap, everything looks great. has anyone had this happen, what did you do and what did you find it was?thanks for your support, as much live and support as I’ve had here, it’s nice to know people out there understand my pain!
Sara
Hi Susan, thanks for responding! the MRI showed a tiny bit of inflammation but nothing of concern. The spinal tap pressure was 11, so looks good. He said the fluid was crystal clear so is doubtful it’ll have anything when it comes back from the lab. He is sending me to a NL that specializes in headaches and knows chiari. The back ofmy head feels pressure and the headache starts there, mine feels like a rush of pain from back to front, not sure if that’s what others have!?
My doctor is Kris Smith at Barrows. Who is yours? And the NL I saw prior to dr smith said she couldn’t help, it was surgical, so I never went back. I’m just waiting for smith to forward my info to his NL. I would love to attend a meeting! Please let me know about that. I’ve felt so alone in this, glad there’s others in AZ.
Sara
Susan J said:
What were the results of the MRI and spinal tap??? What was your opening pressure from the spinal tap? What does the doctor say is the next step? What does the back of you head feel like?
I’m from AZ too. Check out my profile. I felt great intially after my decomperssion, but before I could return to work everything just fell apart. I have had subsiquent surgeries. Out of curiosity, who was your NS and who is you NL?
Last month I found out that we have a support group in AZ that meets face to face. I went and took my mom and sister with me. It was nice to meet people in person that are going through the same thing that I am. That might be something you are interested in.
Susan J
Hi Poptart,
Thanks for the nerve advice! I just saw my doc yesterday so he knows. The spinal was just done then. He’s sending me to an NL as he doesn’t think anything surgical can be done! I’ll mention the nerve stuff to the NL I see. Thank you so much!!
Sara
Poptart said:
I would call my doctor back and report to him exactly what symptoms came back. Decompression surgery will resolve some issues but may not resolve others. If you have pain caused from damage nerves in the central nerve system then more than likely it will not do anything about that. Everyone will be different because they could have the similar pains but caused by different causes. Your doctor needs to know exactly what is wrong with you so that he can determine whether anything else needs to be done. The pain from increased intracranial pressure is different from the pain from damaged nerves.
I had the surgery about 8 years ago, and I experienced the same thing. From talking to other people it's not unusual to have 5-6 weeks of bliss followed by a return of all the symptoms. I'm not sure why it happens, but for me the symptoms did gradually improve. At 3, 6, and 12 month intervals look back and remember things you couldn't do pre-surgery that you can do after. There will be more and more of them as time goes by.
Hang in there!
Thank to for he positive words! I’m keeping my fingers crossed!!!
Susan in CoMo said:
I had the surgery about 8 years ago, and I experienced the same thing. From talking to other people it’s not unusual to have 5-6 weeks of bliss followed by a return of all the symptoms. I’m not sure why it happens, but for me the symptoms did gradually improve. At 3, 6, and 12 month intervals look back and remember things you couldn’t do pre-surgery that you can do after. There will be more and more of them as time goes by.
Hang in there!