10/5/2020 The Neurosurgeon Appointment

Well, after my EDS specialist managed to get me into to see the latest neurosurgeon I'm once again feeling defeated. He was very polite which is greatly appreciated & he also stressed that my symptoms were not in my head & we're very real. Again, very thankful to hear a doctor say those words. However, despite all of the things showing on my recent MRIs, he says while symptoms match spinal issues, he doesn't believe that my scans show severe enough damage to be causing them & said he doesn't have answers as to the cause. One comment that he did make which I found concerning was "Well since you're in a neck brace & restricting movements then it's really not a problem". So does that mean if someone breaks their leg in two & can't use it, it doesn't matter if they have a crutch to lean on? I fail to see his logic! When I had the stroke last January it was due to slight head movement while the brace was off to shower. Besides, I would love to not have my life depending on this brace 24/7. While the neck brace helps immmensely & I can't survive without out, I also have many symptoms that are not helped by the brace. I'm sure some of those are caused by the damage in my lumbar area.

It's so frustrating to know that many of my symptoms happen with & related to spinal movement, & multiple doctors (at least 4) believe my spine is severe, yet every neurosurgeon so far says otherwise. I know many others with EDS go through this same struggle & end up traveling to New York for help. That's currently not an option for me though. So what next? Are my multiple other doctors correct in thinking I'm severe & need spinal help ASAP, or are the multiple neurosurgeons? Here's the basics of my symptoms. I wear a neck brace 24/7 due to instabilty, pain, a TIA stroke in January from slight head movement, blacking out after looking up, as well as lost bowels on 3 separate occasions due to looking & reaching up, & at times get dizzy &/or vertigo when looking down, or to the side. A few of my doctors also suspect an intermittent CSF leak, & suspected tethered cord. I get lots of back pain in upper, & lower back plus hips & buttocks which is extreme & gets me out of bed every night. I am a part time wheelchair user as I can't be on my feet long. After a couple to a few minutes of being on my feet they go numb, or I get burning &/or tingling feelings. If I hold my arms outreached such as holding the steering wheel, my arms & hands go numb. If I lay on my back my right arm literaly goes paralyzed. I feel pressure at the base of my skull if I lay on my back. I can't tolerate any bumps, or vibrations because it causes shooting pains through left side of my head & eye. My limb muscles suddenly go weak, I get random toe drop & gait changes. At times I have to really concentrate & focus in order to lift my legs to walk, or they drag & trip me. My legs go stiff after sitting. I have also had drop attacks, plus gotten electrical sensations through my leg up through my chest, & also numbness & electrical feeling in my face.

Both of my primary doctors (one specializes in EDS), plus two other of my doctors believe my spine is in severe need of help ASAP, however I have been to multiple neurologists, & neurosurgeons & most pass me off claiming I only have mild issues & nothing concerning, however all tests have been done without contrast because I'm allergic to that as well. The couple neurosurgeons that did find it extremely concerning said they weren't able to help. I can't understand why neurosurgeons are passing me off as no concern while my other doctors find it very concerning. Who is right? So today's question... What next?