I’m 6 months post op lumbar fusion and occult tethered cord release.. NOW I need OC fusion & surgery is scheduled.
Please, give me tips on how to get through this :’)
Can someone tell me that the pain, the bobble head feeling, the motion sickness, the pain & weakness in my arms and face goes away.. that I’ll get my cognitive function back 🥺
Hi folks! I (32 F) am diagnosed with the hypermobile Ehlers Danlod/POTS/MCAS trifecta. I have chronic migraines and have recently experienced an increase in this + other symptoms. Multiple physical therapist have told me that they suspect CCI.
A year and a half ago when I was first diagnosed with Ehlers-Danlos I had the above imaging conducted. At the time, the only thing mentioned in the report was that I had some minor disc degeneration and loss of cervical lordosis. The provider at the time said that these changes were normal for someone, my age but they did not see any signs of instability.
I have since failed multiple attempts at neck, physical therapy because the suggested exercises made me incredibly symptomatic with my POTS and migraines. I have been encouraged to get a second opinion on CCI as a neck brace significantly relieves my symptoms.
I am meeting with my primary care doctor on the 28th to follow up on the issue. I would love to know how others might interpret this so that I can make sure to bring up all relevant concerns with my provider.
Thank you in advance to anyone who takes the time to go over this.
For years I've had neurological symptoms that seem to be caused by neck position -- headaches, dizziness, trouble breathing, confusion, chest pain, heart palpitations, and a shaky/restless feeling. I also have pain that's bad enough to make me semi-conscious/almost faint for several hours a day. It's severely limiting my ability to drive, work, do chores, sleep, and do almost all hobbies/entertainment. I went to the ER a few months ago because the palpitations and shortness of breath were so severe.
I have EDS and I suspect a nerve and/or blood vessel is getting pinched due to hypermobility. My neurologist has done some imaging and "ruled out" CCI, AAI, and Chiari, but the symptoms are still getting worse, and I know there's other imaging that hasn't been done, like a flexion/extension MRI.
I decided to get a second opinion from a doctor that specializes in hypermobility, but she's been unwilling to give me clear advice on what to do next. She's emphasizing physical therapy, even though these symptoms started while I was doing PT. (I don't know if they started *because of* PT, but I think it's possible. And yes, that physical therapist was experienced with EDS and was hypermobile herself.) The doctor ordered a flexion/extension MRI, but we hardly discussed my symptoms at all. When I looked at the notes after the appointment, they said, "Patient was encouraged to abort imaging study should she experience progressive shortness of breath, chest pain, dizziness, hearing/ vision changes, paresthesias, and/or AMS." The doctor didn't tell me this during the appointment, and if she had, I would have told her those are the symptoms I'm experiencing every day.
After many messages and a phone call to try to clarify, it seems like the doctor is unwilling to make a clear recommendation on whether she thinks it's safe for me to do the MRI. I told her I was fairly sure I would faint if I had to hold my neck in those positions for 3 minutes, but that I'm willing to pass out if it'll give us useful information (can't be worse than a tilt table test, right?). She told me not to do it if I thought I would faint.
But she's also saying she's not comfortable recommending lots of other treatments unless I do the MRI. Obviously, I understand no doctor would recommend surgery without doing imaging first, and I hope surgery won't be necessary. But she's not even willing to let me get fitted for a hard cervical collar (I've tried a soft collar and it made the symptoms worse). She doesn't recommend regenerative treatments until after I've completed PT. The physical therapist she recommended that has experience with cervical instability isn't available until the fall. I'm currently doing OMM/OMT but even that doctor says he doesn't think it'll be enough on its own.
I know the severe end of cervical instability can be even more severe than this (bedbound, unable to walk without stumbling, can't speak, etc.), and I'm grateful I'm not at that point, but I'm really struggling to live independently, and I'm frustrated that my doctor doesn't seem to have more urgency to find a solution. I keep thinking I can't be the first person whose symptoms are severe enough to make the imaging inadvisable, but surely there has to be some treatment option other than physical therapy in that case.
I'm wondering, what if I were to do the imaging and it shows that I need surgery or something more intense than PT? If that's the case, I don't want to not do it and never know that. And, would "failing" the imaging (fainting or having to stop) prove anything in itself?
What would you do (or have done) in this situation? Here are the options I'm considering:
- Physical therapy (even though it's made me worse in the past), possibly with someone who's less experienced with cervical instability but available sooner
- Do the MRI (even though it costs $800 and I think it's very likely I won't be able to hold the positions long enough to get useful images, not to mention the risks the doctor warned me about)
- See a different doctor and see what they recommend about the imaging, cervical collar, etc.
- My current doctor also suggested, as an alternative, a dynamic CT scan turning my head in different positions that could show AAI. But I'm sure it's also going to be expensive and still isn't going to give her the information she really needs (she keeps saying the flexion/extension MRI is the gold standard)
- Do you agree that it's unhelpful to do regenerative treatments (PRP/prolotherapy) before PT?
I'd also love to hear from anyone who's had a upright flexion/extension MRI -- how long did you have to hold the positions? The practice that does the MRIs told me 3 minutes for each position, but my doctor keeps saying it's only "seconds."