Hi, all. I've had severe pain, sought out my neuro and decided to do my brand of research (translation=WebMD is a waste of everyone's time). However, the search parameters don't even begin to give one legitimate hits for "Chiari" + either of these issues.
The backstory:
Chiari I-diagnosed 2009, but probably been a factor in various health issues since 1979. Wrist surgeries for problems not found on xrays, neck and shoulder pain, migraines, vertigo, etc.
I think the herniated disc has also been an issue for a long time, but especially bad in the past 3 years, escalating since last November. Thanks to all the other chronic health issues, I tuned it out until I was done with my usual school courseload and made an appointment for July. MRI finds extreme changes in the herniation that was visualized in 2009 between C5-C6. When looking at the lateral views, you cannot see the bones on the right side of the spine between C4-C-7, so those nerves are severely compressed.
(Went through a round of physical therapy, in which the therapist chose to ignore the neuro's insistence that I do not lift more than 15 pounds. Mild gains, mostly through the use of TENS, traction and strength band activities. Had to have two surgeries unrelated to the Chiari and Herniation, which stopped the PT for at least 3 months-and I never went back.)
The radiologist interpretation was Degenerative Disc Disease causing the pain, and my neuro (fairly new to me, DXed the Chiari in 2009) was telling me my 8 to 9 level pain is due to DDD/Arthritis and that I just have to deal. I asked about the lateral views and what I'd seen, compared to the 2009 images-he apologized that he was just going off of the radiologist's report. Once he looked at it, he agreed that there are issues, but brought up the very real question "Is this Chiari causing problems or the disc herniation?"
I can definitively say my vertigo, coughing, and migraines are Chiari, but the location of the herniation causes many of the same things that Chiari I does (neck and shoulder pain, tingling/numbness on the same side as nerve compression, weakness and twitching of right hand and overall soreness.) I also have difficulty with neck rotation that I can comfortably state is due to DDD.
Here's the thing: I asked him, if this was him with these same two MRIs, what would he do-after he'd told me to deal with it. He then sent me to a neurosurgeon consult, which I was pretty sure would happen before I went to this appointment. Medications and P/T were minimally effective, allergic to Cortisone and epidural injections are not recommended for Chiari patients. This leaves the surgery-so this wasn't that much of a surprise.
However, neuro cautioned me that the neurosurgeon might look at my case and assess that this IS in fact, a Chiari issue and push for decompression surgery. I start a doctoral program in August, and well, I really would rather not go that route if the source of most of my pain is the herniation and DDD.
The feedback for herniations coupled with DDD is that more surgery is as likely as no more for the issue I have. I'm willing to deal with that, but the idea of going through a full scale spinal decompression and the attendant recovery it entails (not driving for months, P/T to resume function), only to find I still have issues from the C5-C6 herniation and still have to undergo surgery for the herniation is not thrilling me.
I figured I would post here, see if anyone else has had this trifecta of head and neck garbage to deal with and had some insights. Even if you haven't, I'd appreciate some feedback on any surgery in this area. I am so leery of any surgery, due to a clotting disorder, but to know I'm a risk for surgeries because of Chiari in addition to that just freaks me out.
So, what say you, fellow Chiarians? Anything I should consider before the neurosurgeon's appointment?