Hi I am new here and hope to learn a lot from others experiences & sharing experiences!
I had bad headaches since a surgery in Sept 2013 (hysterectomy, rectocele repair, & bladder/ureter sling) then in Jan 2014 it hit a level so bad I was unable to sit or stand for more than 15 mins at a time. Only thing that helped was laying down.
Symptoms were severe head pressure headaches, ears like on an airplane constantly with ringing in ears also, neck & shoulder & back of head pain, couldn't focus mentally or visually very well.
After about 12 doctors & hospitals, numerous tests (including mris, mra, mrv, ct scans, mri with contrast, ct myelograms, cicsternogram) and countless medicines and wrong diagnoses conclusions (including migraines which I blacked out during the migraine infusion, then that doctor said I was depressed - I will be going back to calmly tell him he really needs to listen to his patients) The most important symptom was that the headaches got better laying down & much worse upright. Finally an mri with contrast revealed a sagging brain! This is due to a cerebrospinal fluid leak.
I had 2 blind blood patches in March 2014, total of 29ccs fit before I couldn't take any more. Got minimal relief (mostly on bed rest anyway) for a week or so. I was finally referred to another hospital in NC more knowledgeable in csf leaks and the doc there saw my leak on my previous ct myelogram that was read saying no leaks observed! She did 4-5 fibrin glue/blood patches but was unable to reach the 5mm tear behind C6 through my back. She also started draining a cyst outside my dura that went from C5 area to T11 area filled with csf!
She sent me to California to csf specialist in anterior repairs and more who said he would have to go through C6 to get to the tear and do fusion of C5-C7. I had researched a lot about csf leaks over that time, but was unable to research the fusion information before surgery occurred Nov. 20. 2014.
I am learning now post operatively and am confused a bit.
** My first question is.....with cage fusion is the end goal to have C5-C7 fuse to be one piece?**
Here is what was done form my op report:
1&2) C5-C6 & C6-C7 anterior cervical complete diskectomy
3) C6 anterior cervical corpectomy involving 75% of vertebral body
4) C5-C7 anterior corpectomy cage instrumentation
5) C5-C7 anterior cervical instrumentation with Synthes anterior plating system
6) Surgical microdissection using surgical microscope
7) placement of dural patch graft
8) use of c-arm fluoroscopy with interpretation
9) use of morselized allograft and autograft
I just wanted to add - PLEASE if you know someone suffering from unexplained postural headaches (worse sitting & standing & better laying down) please tell them to look into csf leak. I lost a lot of time (over a year) but many suffer much longer, lost my job, missed out on a lot of things because I had to stay laying down. I never had anyone ever touch my back until one of my emergency room visits for these headaches, that was my first lumbar puncture. It is only diagnosed 5 out of 100,000 people many more go misdiagnosed. Hope that can help someone.
I finally see my physiatrist on April 1st, 2015! Can't wait to see about physical therapy and getting some range on motion back & some pain relief. My neck, shoulders, and back of my head burn & hurt. Only thing is with my csf repair I am dealing with similar symptoms as before but nat as severe due to high pressure so I have a hard time telling which is that pain & which is fusion area pain
My body has to learn to slow down csf production with medications until it levels off.
Thanks for taking the time to read this, I look forward to any replies & will be looking around the site, so much info! Thanks!
Cerebrospinal fluid leak took over a year to find, tear behind C6 repaired via dural patch graft, but had to go through C6 so C5-C6 & C6-C7 diskectomies, C6 corpectomy 75% vertebral body, C5-C7 cage with anterior plating done 11/20/14