star child, curious if you had a "normal" MRI that was enough for your specialist tell you not to get injections.... wondering if your neck issues were seen on a MRI or if you had the tesla 3 MRI or standing MRI or other specialized imaging?
Brain fog very bad so I may misunderstand. I had a cervical MRI in 2014 that showed a moderate degeneration/some herniations, some bone spurs and I had congenital narrowing. But in 2018, when I had a huge increase in neck pain, radiculopathy, and HUGE increase in migraines, severity, lack of good response to meds - my then PCP did not want to do another MRI. He said he already knew I had neck issues among other things. He said I did not need one since I had one in 2014. I was nice but said that considering this sudden and dramatic - and sustained decline, is there any way I may get one...anyway he only agreed to an x ray and an EMG and NCS - and then threatened me that after that if I got an MRI I'd have to have shots or surgery. I immediately switched PCPs.
FTR, I am not against steroid shots - they definitely have their place imo - I had one in my shoulder and it was very helpful. It is only because I have CCI/AAI and CSF leaks that I should not have shots in my neck.
I had a supine MRI BUT I had additional views that my specialist ordered, I gave the exact orders from the specialist to my new PCP who is amazing and she added those special views onto her order for a cervical MRI. Which I did not even ask her for; my first visit with her and explaining I was taking sumatriptan around 30 times a month (should not exceed 12, they usually say 9) and explained all that I'd explained to prior PCP - she immediately said I need a cervical MRI. My specialist works with Dr. Bolognese closely (my specialist brought my MRI to Dr. B the day after I brought it in when I had an office visit with my specialist) so I assume Dr. B has told my specialist which views must be included on cervical MRIs for Dr. B's practice.
And I had my MRI at a facility outside of my health group, as I need an open MRI and my health group does not have any. I did not know anything about tesla so I have no idea what the tesla was...but it ended up being just fine.
My new PCP saw horrific issues on the cervical MRI report - she said in her many years of practice, seeing many patients for neck pain - she'd never seen an MRI as bad as mine BUT she did not see or read about CCI (the radiologist did not write anything about CCI/AAI and doubt they would see it). However I have severe herniations that are indenting into the the thecal sac, almost all my discs are badly herniated - several into the thecal sac - foaminal stenosis bilaterally at at least one maybe 2 levels; a lot of bone spurs especially at the facet joints, still have the congenital narrowing of course and I forgot what all else. It is bad.
I know its a little off topic but wondering how you had your EDS diagnosed?
My specialist diagnosed me with EDS though it did not surprise me much. He tested me on that scale where you can touch palms fully to the floor, uuuuhm...one thumb can touch my forearm, I used to be able to do splits both ways with no prep - people always thought I was "double jointed" - I could put my legs behind my head and walk around on my buttocks - there were other questions and other clinical signs he used but those were the ones I remember. I can no longer do the splits nor walk with legs behind my back - nor even touch floor with both hands (and I could easily put my head through my legs while doing it) - I could stand and hold my leg straight up parallel to my body holding my heel in my hand with my arm straight up...I had natural "turn out" - like ballerinas train brutally for, my legs turn in the hip socket all the way out so I easily assume ballet positions....I always thought my extra flexibility helped me as I became disabled due to back and neck problems but a doctor (not my specialist) a while back said that that actually could have contributed or be the cause of all the early bad arthritis I got (very young, and as I said debilitating in my low back - way before all my other illnesses). I also have MCAS and POTS and autoimmune disease - SIBO and my specialist said that I had the classic pentad - of 5 illnesses one of which is EDS but I forget what the other 4 are. I think they are SIBO, autoimmune, MCAS and POTS.
Even as stiff as I am now, and being horizontal (lying in recliner/bed) for 2 years - I can sit in the "butterfly" position - sitting with my heels pulled together and my knees and legs pressed down on floor (because my legs in my hip sockets move and turn out so easily). I also have super soft skin, bruise easily, get sores easily and they are hard to heal...but I do know some things other than EDS may also have these symptoms. Idk. I'm losing track of myself here sorry.
wanted to add from my last post I hope it sounded like I was discouraging surgery, really want to support everyone who undertakes that journey!
Thanks. I did not feel you did. People have different opinions I know. I am certain about my need for surgery - I have no life and constant pain and migraines. And I am already accustomed to having a good deal of pain but the additional pain in my neck, shoulder, arm - bottom of skull/top neck and the debilitating migraines leave me in excruciating pain.
There is nothing that people here would say that would really discourage me; it will be my specialist and neurosurgeon who is CCI/AAI and CSF literate whose opinions will be my deciding factor.
I feel so frustrated that if seems like there are a million rabbit holes one has to jump in or dodge with this illness. I have been diagnosed with lyme, mold, fibromyalgia, ME/CFS and insomnia. Hence not really wanting yet another thing wrong with me but don't want to miss something that could or should have been treated.
I so feel you on this and I am truly sorry - on top of all those illnesses I put above - I have a ton more. It is overwhelming. I am being treated for babesia now, and can't treat the Lyme / erlichiosis? and Bartonella till this gross babesia treatment is done (the mepron is disgusting and take it 2x a day ugh). Long battle there. There are problems with my iron/ferritin and things that were getting serious and I had to beg my specialist PLEASE can I talk to my PCP AFTER surgery cause I just can not handle having to be referred to a GI for scopes and all kind of things...we compromised and then my next blood tests were better except my ferritin was still super low. My PCP prescribed "hamburgers" - and it is funny, I'd been craving them for a couple weeks and eating them prior to seeing her and - my blood work was so much better! (and I don't eat buns as I'm trying to reduce carbs and sugar as much as possible to eat the most nutritiously dense foods AND lose weight...and I can only lie down in my recliner and bed so zero exercise - cutting carbs is the only way I can lose weight right now and trying to stop gaining weight and lose what I can prior to surgery to be in the best possible shape I can be - and doing my tiny "exercise" - squeezing my shoulder blades in a certain way a few times a day to help my posture and tightening my TVA muscles throughout the day laying down - to help support better posture).
I also have severe asthma and allergies so that gets fun, too.
Even more crazy scary is not knowing and doing some treatment that messes me up further because I didn't know. I can tell you if I went back to Standford to their pain clinic they would not look for CCI Chari or brain stem herniation they would just recommend the "injection mill" that they put people in. lots of money and "low risk" for them. They had rows and rows of people on gurneys waiting the day I got mine, just needed Lucy and Ethel shoving chocolates in our mouths as we down the conveyer belt.
Yes, there truly are only the what - 4 neurosurgeons in the world that can dx CCI/AAI. There are more than that that can diagnose Chiari (I knew someone with Chiari - who had surgery for it, too). We need more literacy about CCI/AAI and Chiari - and CSF leaks (other than just after a spinal or epidural, most doctors poo poo the idea).
Wish there weren't so many other illnesses this "looks" like, guess I am wishing for tests that give us a clear diagnosis.... and let it be tomorrow please
If I understood correctly, yes, there are many overlapping symptoms with CCI and others...but in my mind, it is cleared up quite easily with the supine MRI with the needed views so then there is a clear diagnosis...but maybe my brain fog is preventing me from grasping this properly
