StarChild56
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Thank you for suggesting this, it makes me feel better about waiting.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thank you for suggesting this, it makes me feel better about waiting.
No it is not. I do have very bad pain where my skull meets my neck - but it also goes down the left side of my neck, into my shoulder, arm and down my hand/fingers - and I get N&T as well. Sometimes the pain goes down the right side of my neck/shoulder arm and I get N&T there as well. I have congenital narrowing in my neck as well as stenosis, severe at some of the facet joints (bi lateral) and the herniations I have in 3 discs protrudes into the dura - 2 others are also severe but not as bad as the 3. I have a lot of bone spurs. I have severe problems at almost every cervical vertebra. My cervical MRI was horrific. My PCP said she'd never seen one as bad as mine.
I did have the extra views that Dr. K wanted done with that MRI.
I've had the left side of neck down arm pain much longer, though, than the skull meets neck area. Since 2013.
While I can't say why he doesn't think you have CCI, I can say I have horrific completely herniated (much bigger than most bulges) discs and stenosis, bone spurs, etc - at almost every level. So having those types of problems for me are in addition to CCI (maybe AAI) and did not rule it out...Struggling for wording so forgive me if it does not make sense.
I got the MRI order! My PCP was very interested in the stories I shared from here, as well as my EDS research. He agrees that this is worth looking into and he put in the order with all sorts of diagnostic codes and notes in the hopes that my insurance will not have any reason to decline. He said he has other patients that may benefit from this research and he will be following my case closely.
(Sedona, AZ is great for living in natural beauty and fresh air but not so great for healthcare options).
I realize that the osteopath is different, but it is still moving your neck.
Not to derail this thread, but is anyone in this thread familiar with lumbar outpouching?
Ask however many times you need to, I completely understand and ask the same things over and over.Thank you for clarifying, and I think I had asked you this once before, but now I will remember for sure! It sounds like we have some similarities with the bulging discs, stenosis, and pain radiating down the arm but I do not have pain where my skull meets my neck, I've never had a migraine, and don't get vertigo (except in 2014 as a med side effect).
Yes, "Flexion and Extension" but if Dr. K wrote it, I'm sure he would include what was needed. What you say your order says may not be the full order that the MRI facility receives, or does not sound like it to me from my experience with my MRIs...but I could be wrong...Do you know what the extra views are? Mine order says "3T MRI Cervical Spine, without contrast".
Oh so sorry I'm sure you will mention that to your PT next time you see her...she may want to change something (or not)...But now that I am active and doing PT and rehab pilates, my neck is not used to this much activity and I am sure this is why the pain is so bad now. Last night the pain radiated all the way down to my lower back (only on the right side) which was a first.
That is so so awesome!!!!All of my worst POTS triggers (climbing stairs, raising arms above head, bending up and down, etc) are gone.
Oh yes I see that now...I wish you did not have to have quite so much pain though and the new pain down your back. Maybe they may want to lighten up your exercises just a tad? Idk. Just a thought.(but it is making my overall muscles stronger so it is a trade-off).
I would not either and do not blame you one bit.I am not touching any meds until I am done with this very slow Cortef taper (and it's taken me approx 6 months to taper from 15 mg/day Cortef to 10 mg/day and at this rate it is going to take me another full year
I hope and believe you will get to that point. Also, tangents are lovely.I might try to speed up the taper but my doctors didn't want me to mess with other meds at the same time. But ultimately, I hope to stop the Atenolol & Midodrine as well. Sorry for the tangent.
Oh my gosh, that is scary and I am so sorry. Wow.I have had two absolutely horrific experiences with osteopaths and my neck (several years ago) and will never see one again. Versus my current PT is excellent and really understands how to do traction. One of the osteopaths injured me so bad, and he knew it, that he gave me a full refund. I was too ill to pursue it any further at that time.
This is exactly what Dr. B told me to get. He said he will order additional scans himself later if he feels they are necessary.Do you know what the extra views are? Mine order says "3T MRI Cervical Spine, without contrast".
This is great news @toyfoof! It sounds like you have an excellent open-minded PCP and your story is going to benefit so many other patients!
I've been to Sedona and agree it is stunningly beautiful but can see it not having a lot of healthcare options. Although if your PCP is there, you found a real gem!
I have had two absolutely horrific experiences with osteopaths with my neck (several years ago) and will never see one again. Versus my current PT is excellent and really understands how to do traction. One of the osteopaths injured me so bad, and he knew it, that he gave me a full refund. I was too ill to pursue it any further at that time.
What you say your order says may not be the full order that the MRI facility receives, or does not sound like it to me from my experience with my MRIs...but I could be wrong...
Oh so sorry I'm sure you will mention that to your PT next time you see her...she may want to change something (or not)...
I hope and believe you will get to that point. Also, tangents are lovely.
This is exactly what Dr. B told me to get. He said he will order additional scans himself later if he feels they are necessary.
I've only seen this PCP twice before, because I moved to Sedona less than a year ago. So I wasn't sure what to expect. I was so happy with his response, and I just love that he wants to use my experience to help others! I want to pay it forward as much as possible, since I've been helped so much by this patient community (I know I've mostly lurked till now, but you all have been helping me behind the scenes!).
Now I'm just going to wait for the neurosurgery diagnosis -- how amazing would it be to find the reason for my neck problems (and other problems) and have a fix?!
I agree and it has been amazing when I have been able to pay it forward. It's great you came out of lurking (and I think I missed your intro thread and rarely have time to read them even though I wish I did)! And I love the picture you just added with your doggie!
That would be amazing and is what happened to me with my autoimmune treatments (except the infusions took 2+ years)! But they ended up being worth every minute.
So I just looked at the email I sent my PCP with the exact orders that Dr. K ordered for me and here they are:Do you know what the extra views are? Mine order says "3T MRI Cervical Spine, without contrast".
That would so amazing and keeping my fingers crossed for you!Now I'm just going to wait for the neurosurgery diagnosis -- how amazing would it be to find the reason for my neck problems (and other problems) and have a fix?!
It really takes a village not just to raise a child but to be chronically ill and having to manage so many different things. I'm glad it was helpfulMy next PT is tomorrow morning and oddly, it did not even occur to me to ask her about this! Thank you so much for mentioning this and I added it to the list of what I want to ask her tomorrow.
However, if I just look in my electronic health record, the order was "MRI - C spine" - from my patient view.
It really takes a village not just to raise a child but to be chronically ill and having to manage so many different things. I'm glad it was helpful
That makes sense.I think mine really just says "3T MRI of cervical spine, without contrast dye" since we are not suspecting CCI or Chiari, etc, in my case.
I have had a couple crashes recently that coincided with worsened autonomic symptoms and this awful feeling of not being able to breathe + head settiling and neck being very heavy. Now I am 100% ready to get a collar. Only question which one? Aspen or philadelphia?
and also is it worth getting a traction device off of Amazon too, in case the collar doesnt help? I thought I would have time to figure this kind of stuff out but this crash is the worst and it would take awhile to get the proper imaging etc.
Thank you. have tried to get parents to pull on my head but it doesnt seem incredibly effective. I would assume a PT would be the kind of person trained in manual traction? Or what about a chiropractor? I have heard mixed things about the latter. i wouldn't want a general referral to PT for conditioning or something due to a misunderstanding, as that would make me a lot worse at the moment. It seems like the testing for this condition and treatment is something that could take possibly a few months and I want to get relief now, so I guess you're saying that manual traction has the best bet if a collar doesn't work?Hi @debored13, The Philadelphia is firmer and more effective against cranial settling. The over-the-door home traction device didn't help me, but it does help some people with this condition.
I'd like to hear a story of someone who showed their test results to one of the three doctors preferred by Jeff and heard back that they don't have CCI or a related condition.
With such a strong pattern of diagnosis among members of these forums, I'd like to rule out a systematic pattern of (potentially false) positives before increasing my confidence that the CCI/Chiari/AAI explanation that was so obviously useful for Jeff can be applied more widely.