Would appreciate any feedback that is in relation to my issue. Thank you in advance. I had a mylegram with dye contrast 9 weeks ago. I developed a terrible spinal headache and it was confirmed I had a spinal fluid leak. My pain was mostly in my neck, just awful pain and migraine in the back of my head. Could barely get out of bed to use the bathroom. I did have a blood patch 5 days after the milligram test. I Did all the things I was supposed to do after the blood patch (rest, drink caffeinated drinks etc) However,
4-5 days later I started getting some pain in my neck again and a migraine in the base of my neck. Not nearly as bad as it was after the mylegram but a constant discomfort and sometimes quite painful. This went on for 4-5 weeks until I had my surgery.
I ended up having lumbar surgery 3 weeks ago because of an arachnoid cyst that grew between my L4 and L5 and I also had a laminectomy. During that 4 weeks before my surgery, I just kind of dealt with the headaches and neck pain knowing that once I had my surgery, I would be getting another blood patch and hopefully the surgeon would be able to fix the small leak. Ironically, after surgery, the doctor told my husband that he could see a small leak and actually see the SF leaking out (not a surprise to me..I wasn't making the headaches up...!) He said he did a patch, could see my blood clot and he believed it was fixed.
So, surgery was 3 weeks ago . I am still having minor neck pain and stiffness and headaches in the base of my neck. No comparison to when I couldn't get out of bed after the mylogram, but still dealing with this! I am taking butalbital/aspirin/caffeine caps which does help. I can get on with my day but I constantly have pressure in my head, stiffness in my neck and the headaches. The pain level really varies from a discomfort to a moderate pain of about a level 6.
I just had an MRI on my lumbar and neck. All results came back normal and there are no evident signs of a leak. However, my doctor did say the hole can be small enough that the naked eye can't see and it's possible that there is a small leak still which is causing the pain.
Can anyone relate? I've read that small leaks can fix themselves. How long will I have to endure this?? The doctor said we could try another patch and go right in where the milligram was done but I've had two patches and obviously, I wouldn't say I've had great results.
Thanks for your replies.