Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

[humanrising]

Will try to have an supine mri nearby but I‘m pretty sure that won’t show anything.

on the other thread about CCI looks like dr Bolognese takes folks who do a supine MRI but it has to be a newer stronger MRI model Tesla 3 MRI, you would also like to have your neck in flexion and extension poses just like the standing MRI. I will have to travel for over an hour to get it done in San Francisco since no one near me has this MRI so you might need to make some calls and travel a little to find it.

 

[humanrising]

I have had great relief with an excellent osteopath but I have also been hurt by a bad one. The only thing I think that's safe is cranial sacral therapy. I trained with Upledger when I was a massage therapist and its extremely gentle no pushing pulling, they use the amount of pressure as a nickel would be if you set it on your skin. but even with that I would only trust someone who has been really trained. I love CS but this would only help the nerves muscles relax and balance the cranial rhythm can't imagine it would replace a surgical treatment for CCI.

I considered doing prolo therapy until my boss had it done for his low back, the first time it helped him the second time the injection hit a nerve and he was really ruined by it. They use pretty big needles and they are creating localized damage so healing will commence, not sure this would be helpful at the base of ones skull seems like it would be dangerous but this is me mostly due to my other injection experiences.

I had steroid injections in my neck very early on after my last car wreck. This caused the worst pain I have ever experienced, I couldn't lay down I couldn't sit I couldn't turn my head. I could only pace or lean or sit on the edge of something. I ended up in the ER after being up for almost 3 days. They gave me a Toradol injection and loads of valium. several years latter, I got lidocaine injections in the facets to see if radio frequency ablation would help and again I ended it in more pain not as bad as the steroids but the doctors said, no one gets worse from lidocaine. well I did and its the last time I let anyone treat my neck.

I hope to be getting this MRI soon and hope for answers, honestly I really don't want to have surgery but I have to know if its something that can end me if I ignore it etc.

I am glad this thread was started because I would love to have options. I am sharing my injection stories just as a caution ….esp since its our cervical spine we are treating.

stem cells are something I will definitely be researching even if nothing else shows up on the MRI since my neck and head pain is life altering on its own.

 

[Wayne]

I am sharing my injection stories just as a caution ….esp since its our cervical spine we are treating.

Wow @humanrising, quite the ordeals you've been through. I really appreciate you sharing your injection stories, just the kind of information I'd hoped would show up on this thread. -- Thanks!

 

[jesse's mom]

I was told last week when my MRI results came in and I went to the Ortho, no chiropractic, no injections. In fact she did not even want me to have a massage at all until I have the surgical consult this month.

I hope to be cleared for pool PT at that point. It helped greatly with my strength and balance a few years ago.

I really do not want surgery!

 

[Wayne]

I really do not want surgery!

Well, just the opening I've been waiting for (thanks @jesse's mom ! ) to tell what I consider a relevant story to this discussion. A man wrote a testimonial about how he'd had a chronic condition in his hand/wrist for many years. As he got older, it continued to worsen to the point where he felt he had to have something done for it.

So he decided to experiment, and make a list of literally all the various kinds of practitioners and healing modalities that he could think of, and also decided to travel the world to explore these various options. As I recall, he considered literally dozens of different suggestions that came to him. Some involved some very expensive and delicate surgeries, all of which had possibilities of not turning out as expected or hoped for.

Again, as I recall, he discovered an Auryvedic health practitioner in India who showed him some unique massaging techniques, that combined with various kinds of essential oils might help him. Lo and behold, he was able to achieve a great amount of relief, and was also able to keep his condition from worsening. But it didn't take care of his problem 100%. What to do?

He realized it gave him so much relief, that it was no longer a major factor in his everyday life. And when he contemplated all the possible drawbacks of having unsuccessful surgery (or even successful I guess), he opted to go with the safe route, and just get on with his life.

I guess his story fits in a bit with my own philosophy. As long as we have a body, we're going to have problems with it. And seldom are we able to fix that problem(s) 100%. However, in many instances, we can figure out ways to at least "manage" those problems. It may not be the desired outcome we would have liked, but it often is the most pragmatic (which often includes lower cost and less risk).

 

[jesse's mom]

I agree @Wayne and I also love that we are all free to make our own choices and to decide what is best and go with it. Many choices like you are discussing above are so invasive that you can always change your mind and go another way.

It is not the most popular option on this site, but I love my autonomy and will say that muscle relaxers and PT have worked for me and I want to get on with my life as easily and quickly as possible.

 

[StarChild56]

I was told last week when my MRI results came in and I went to the Ortho, no chiropractic, no injections.

I was also told by my specialist NOT to get injections - it would be dangerous for me with CCI and also my CSF leak(s) & probably due to EDS. And my prior PCP who wouldn't order an MRI had threatened me that I'd have to have injections or surgery if he ordered the MRI for me. That would have been a disaster! I'm glad you had the ortho consult.

Muscle relaxers, PT and aqua PT are amazing imo. Have all helped me tremendously.

 

[humanrising]

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?

before I read Jeff's posts about CCI I had spoke to my DO and my GP about EDS and they both said no you don't have that...add eye roll. I have had two labral tears in my hips and one in my shoulder and loosly goosey joints, so I wondered. But, I didn't feel pulled enough to try to pursue it since I really need to deal with what's critical for me like sleep. I know its a little off topic but wondering how you had your EDS diagnosed?

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!

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.

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.

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

 

[StarChild56]

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

 

[StarChild56]

@humanrising just want to add that I had an Open MRI and from what reading I did it seems like that might not even be tesla 3. I am going to call the imaging center tomorrow and ask but all that I've found online says that Open MRIs are weaker and images are not as good as tesla 3.

 

[StarChild56]

@humanrising and anyone else who is interested...I called the Imaging center where I had my open MRI (cervical) - and it is only a Tesla .3 ----- not close to a Tesla 3! I was surprised. But again, I did have the required extra views.

 

[pattismith]

I suffer neck problem and spine for decades.

For many years, I was forced to unlocked my thoracic vertebra every days, otherwise I could end with blocked arm.
And these last years, I also needed to stretch my neck spine and to strengthen my neck muscle everydays to manage my neck pain/weakness.

Then I started to supplement myself with testosterone some weeks ago and I stopped every self physiotherapy. It seems I just don't need it anymore… no more pain nor discomfort...just a coincidence?

 

[humanrising]

@humanrising and anyone else who is interested...I called the Imaging center where I had my open MRI (cervical) - and it is only a Tesla .3 ----- not close to a Tesla 3! I was surprised. But again, I did have the required extra views.

starchild ohhh my gosh I can't believe all you have been dealing with!!!!! my heart really goes out to you.

I also appreciate how much time and effort you put into answering my posts. I don't know how you are able to be on a PC with all you neck challenges!

you answered my convoluted questions well ! I was curious how some doc's are catching things that others are missing ( beyond the select few that Jeff mentioned here). I think that not only Chiari CCI are being missed but also brain stem herniations and the like.

I have tried to have the conversation with neurosurgeon's about my neck herniations possibly having an affect on the rest of my problems but I have only got the "quit reading on the internet" look... and no its not related. I really wonder if its more they believe my neck injuries since they are on the scan but they don't buy into my " CFS or Fibromyalgia" diagnosis.

with all of your " flexibility" I can see how it was pretty clear that you have EDS. I only have hypermobility in my joints not anything like what you have.

I wish I could post a great explanation from Dr Jay Goldsein about neck injuries possibly causing some CFS and Fibro symptoms. He opens the piece about a patient who became ill after a car wreck and a whiplash injury. He wrote that book a long while ago and thought that one should have a transcranial doppler done and an cervical MRI with specific measurements taken for brainstem injuries.
I think the difference between what you had done with your imaging study and what others like myself have had ….is having a doctor know how to write up the imaging study as well as read it. I have had "only a cervical MRI" no specifics at all. So while the Telsa 3 might be stronger and better imaging I think you also need someone to write the request right as well as having someone who can look for things a radiologist is not gong to look for and of course in your situation you had a TON going on and would be really unbelievable to ignore.

I think what Dr Goldstein proposes about the cause and affect is very interesting and plausible for a number of us who became ill following neck injuries.( which is what he saying not that its the "cause" for everyone). I would love to share his work but I can't type that much without it causing me much too much neck pain.
thank you for sharing all of your experiences.

 

[StarChild56]

starchild ohhh my gosh I can't believe all you have been dealing with!!!!! my heart really goes out to you.

Thank you so much for showing such kindness, it really is appreciated <3

I also appreciate how much time and effort you put into answering my posts. I don't know how you are able to be on a PC with all you neck challenges!

I can't always but I have a great set up: a very good La Z Boy recliner that is perfect for me...I recline (it is zero gravity & I often am fully reclined)...have my FIR heating pads...and then I have a flat foam pillow, my chromebook sits on it - and I can type laying down with wrists and up my low arm wresting on the laptop. I have to take breaks, because my arms are weak and I get pain in my neck/shoulder arm/wrists/hands/fingers but sometimes I can prop another pillow here or there and be comfortable for short times. Also, I am a very fast typist - I used to type all day long on my computer at work.

you answered my convoluted questions well ! I was curious how some doc's are catching things that others are missing ( beyond the select few that Jeff mentioned here). I think that not only Chiari CCI are being missed but also brain stem herniations and the like.

I'm glad I was able to answer them. I agree that much is being missed!

I have tried to have the conversation with neurosurgeon's about my neck herniations possibly having an affect on the rest of my problems but I have only got the "quit reading on the internet" look... and no its not related. I really wonder if its more they believe my neck injuries since they are on the scan but they don't buy into my " CFS or Fibromyalgia" diagnosis.

I am so so sorry. Sigh. I would have the same problem if I did not have my amazing specialist, who then referred me to Dr. Bolognese. My heart goes out to everyone who does not have a good specialist, who is knowledgeable, caring - interested and respectful. Truly...my specialist saved my life (as non functioning as I am). I hope you get someone who will truly help you, you deserve it.

I wish I could post a great explanation from Dr Jay Goldsein about neck injuries possibly causing some CFS and Fibro symptoms. He opens the piece about a patient who became ill after a car wreck and a whiplash injury. He wrote that book a long while ago and thought that one should have a transcranial doppler done and an cervical MRI with specific measurements taken for brainstem injuries.

It sounds like it is very interesting, and I was diagnosed with Fibro years ago way before ME/CFIDS. I understand not being able to post a good explanation, believe me. And often I can't understand no matter how well it is laid out with the brain cement (that is when it is way beyond fog for me lol).

I think the difference between what you had done with your imaging study and what others like myself have had ….is having a doctor know how to write up the imaging study as well as read it. I have had "only a cervical MRI" no specifics at all. So while the Telsa 3 might be stronger and better imaging I think you also need someone to write the request right as well as having someone who can look for things a radiologist is not gong to look for and of course in your situation you had a TON going on and would be really unbelievable to ignore.

You've hit the nail on the head, I believe. My PCP wrote a normal cervical MRI order and agreed to simply add on whatever my specialist wrote. I emalied the specialist, he wrote a LONG set of instructions (hers was just like Cervical MRI no contrast - his had like 6 lines of info which I do not even understand other than flexion & extension). And then as you said, the person reading it. The radiologist noted all the normal horrors of my neck but nothing about CCI/AAI.

I think what Dr Goldstein proposes about the cause and affect is very interesting and plausible for a number of us who became ill following neck injuries.( which is what he saying not that its the "cause" for everyone). I would love to share his work but I can't type that much without it causing me much too much neck pain.
thank you for sharing all of your experiences.

It does sound fascinating. But - I can totally understand not being able to write it up. Please take care of yourself.

 

[Daffodil]

despite my misgivings, i had 3 sessions of atlas orthogonal instrumentation so far. i am not sure if i notice anything. it feels like the machine barely touches you but apparently it is supposed to help. the changes are apparently visible on x-ray.

this chiropractor just seems so amazing, its hard not to trust him. he has some publications, including one in which the improved blood flow to the brain resulted in MS lesions greatly vanishing and the patient recovering. he also has helped CFS patients.

@StarChild56 you mentioned that there are 4 neurosurgeons who can diagnose cci.....bolognese, henderson, gilete...who is the 4th?

thanks!

 

[frozenborderline]

@StarChild56 you mentioned that there are 4 neurosurgeons who can diagnose cci.....bolognese, henderson, gilete...who is the 4th

Sandhu, he is also mentioned on Jeff’s site

 

[frozenborderline]

I think what Dr Goldstein proposes about the cause and affect is very interesting and plausible for a number of us who became ill following neck injuries.( which is what he saying not that its the "cause" for everyone).

I was reading “tuning the brain” a little and he seems to be aware of the connection between stenosis and fibro at least

 

[anne_likes_red]

I've been wondering about autophagy's possible role in the maintenance/restoration of connective tissues.
We're supposed to burn adipose tissue on a regular basis not just for energy but for repair also. Many of us don't due to eating 'too often' or at least not fasting long enough to have autophagy kick in.
Just thinking.

 

[Daffodil]

Sandhu, he is also mentioned on Jeff’s site

ohh yes i have heard of him too but forgot...thanks! he is in the USA too so out of reach for me

 

[sunshine44]

lets re-look at this thread

There are people healing from ME with this whom are not having surgery too....how is that happening exactly?

I do think this is a key part of my puzzle and am very intrigued.