Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[StarChild56]

Thank you for suggesting this, it makes me feel better about waiting.

 

[Gingergrrl]

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.

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).

I did have the extra views that Dr. K wanted done with that MRI.

Do you know what the extra views are? Mine order says "3T MRI Cervical Spine, without contrast".

I've had the left side of neck down arm pain much longer, though, than the skull meets neck area. Since 2013.

Mine is on the right side and it started in 2010. My car accident and whiplash was 2006 but my right arm was injured by Levaquin in 2010 so my shoulder/neck had to start compensating for my arm. It never went away but from Oct 2014 to approx April 2018 when I used the wheelchair (b/c of overall muscle and breathing weakness), the pain was less b/c I was not doing much (unless I typed too much on my phone). 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.

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.

That is interesting and your question makes perfect sense. Our doc asked me questions in great detail about the pain, time of day, positional changes, headaches, etc, and from my replies, he did not think it was CCI (and I don't either). In addition, it seems that the people who had POTS (that was due to CCI) did not find relief from their POTS until after the surgery.

Vs. I had horrific POTS since Jan 2013 and it has (finally!) completely gone into remission from autoimmune treatments (IVIG & Rituximab) which would not be logical if the cause was CCI vs. autoimmunity. A few nights ago, I had to bend up and down about 10x in a row (one of my worst POTS triggers) b/c it was pouring rain and I had to try to cover the huge patch of grass on my patio for my dog with plastic trash bags. I was doing it quickly b/c it was pouring and when I was done, I had zero reaction or symptoms of POTS (no tachy, no chest pain, no shortness of breath, no dizziness... nothing)! All of my worst POTS triggers (climbing stairs, raising arms above head, bending up and down, etc) are gone. And I think this is also why he doesn't think I have CCI, vs. bulging discs/cervical stenosis, that is probably being exacerbated by the pilates (but the pilates is making my overall muscles stronger so it is a trade-off).

I still take Atenolol & Midodrine so I don't know what would happen re: POTS if I were to stop. BUT I've taken those meds since 2013 & 2014 with only minimal improvement. They were like a band-aid but they did not get to the root cause like the autoimmune treatments (or like CCI surgery is doing for others). 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 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.

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.

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!

(Sedona, AZ is great for living in natural beauty and fresh air but not so great for healthcare options).

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 realize that the osteopath is different, but it is still moving your neck.

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.

Not to derail this thread, but is anyone in this thread familiar with lumbar outpouching?

Now I am curious, what is lumbar outpouching!?

 

[StarChild56]

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).

Ask however many times you need to, I completely understand and ask the same things over and over.

Do you know what the extra views are? Mine order says "3T MRI Cervical Spine, without contrast".

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...

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.

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)...

All of my worst POTS triggers (climbing stairs, raising arms above head, bending up and down, etc) are gone.

That is so so awesome!!!!

(but it is making my overall muscles stronger so it is a trade-off).

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.

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 would not either and do not blame you one bit.

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.

I hope and believe you will get to that point. Also, tangents are lovely.

Also, glad you could understand what I was trying to say.

 

[StarChild56]

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.

Oh my gosh, that is scary and I am so sorry. Wow.

 

[toyfoof]

Do you know what the extra views are? Mine order says "3T MRI Cervical Spine, without contrast".

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.

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'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!).

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.

That is really scary! I do think my neck has been made worse by chiropractors over the years. I started going for migraines, and kept going because the adjustments only lasted so long and then I'd need another one. Eventually I gave up on the whole process, because it obviously was not doing me any permanent good, and possibly making it worse. Now I am very careful about my neck. I had a good massage therapist in Michigan (where I lived previously) and haven't found that yet in Sedona (despite massage therapists being very easy to find here! I just don't have the money). 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?!

 

[Gingergrrl]

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...

I think it was the full order although I did not actually see it.

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)...

My 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.

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.

That is very reassuring to hear and I assumed if my MRI showed something really weird or unexpected that they would order additional scans.

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!).

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!

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?!

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.

 

[toyfoof]

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!

Thanks for the warm welcome! My intro thread was a few weeks ago, and I can see how it is difficult to keep up with them all. My doggie's name is Clara and she is a pro napper, just like me! We got her from a shelter in June and we feel so lucky that she picked us.

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.

Yes, one thing I've learned with this disease is patience. Each new supplement or med needs time to evaluate, we have setback days, we just have to wait it out and hope we are on a positive track. I'm so happy that your autoimmune treatments have worked so well for you; I've seen your story in other threads and it's wonderful to hear about fellow patients who were so sick and now are out and about living life.

 

[StarChild56]

Do you know what the extra views are? Mine order says "3T MRI Cervical Spine, without contrast".

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:

MRI Cervical Spine with flexion and extension views
R/O Cranial Cervical Instability

Contrast: NO

If possible please give particular attention to:
1 Cleido-clivus angle
2 Grupps Oak distance
3 Distance between clivus and dens
4 Cranial settling/ Chiari malformation
5 Subluxation of vertebrae

However, if I just look in my electronic health record, the order was "MRI - C spine" - from my patient view.

 

[StarChild56]

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?!

That would so amazing and keeping my fingers crossed for you!

 

[StarChild56]

My 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.

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

 

[Gingergrrl]

However, if I just look in my electronic health record, the order was "MRI - C spine" - from my patient view.

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.

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

and

 

[StarChild56]

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.

That makes sense.

 

[frozenborderline]

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.

another question, @jeff_w @JenB do you know if the autonomic issues caused by this kind of brainstem compression could involve blood pressure issues? my blood pressure has been fairly normal , usually around 120/80, over most of the time i've been ill. at hospital today getting saline infusion and feeling extra super bad discomfort/pressure , crashed p bad, it was 155/87! pretty high. i feel bad about the idea of even taking beta blockers to manage it as they usually make air hunger worse. I have home bp monitor so i guess the idea is just keep an eye on it and go to ER if i need to??

 

[frozenborderline]

really out of breath and not able to think normally with this crash and I'm sorry, I know this info is addressed elsewhere, but are there others with this issue who have benefited, even slightly, from collars, such as philadelphia, etc. or do you really need to do traction? If the latter, how to best do the traction? if i can't get manual traction from a PT, how about over-the-door traction things that u can buy on amazon?

 

[frozenborderline]

@Hip @JenB @jeff_w Any advice on how to do traction if collar doesnt work, good devices for traction , etc

 

[Hip]

Any advice on how to do traction if collar doesnt work, good devices for traction , etc

I talk about the traction device I bough on Amazon in this post.

 

[jeff_w]

Hi @debored13,

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?

The Philadelphia is firmer and more effective against cranial settling.

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.

The over-the-door home traction device didn't help me, but it does help some people with this condition. Probably worth trying. I needed professionally-administered upright traction to see a benefit. You could also try to get manual traction, while lying down, from someone trained in it. That can be extremely helpful. The manual traction that I received while lying down kept me breathing more easily. After each manual traction session, I'd breathe better for hours.

another question, @jeff_w @JenB do you know if the autonomic issues caused by this kind of brainstem compression could involve blood pressure issues?

Yes, it can involve blood pressure as well as heart rate. It can also impact additional autonomic functions (like temperature regulation).

 

[frozenborderline]

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.

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?

On a more theoretical level, before this latest crash, I had been able to treat a lot of my symptoms and keep myself plateaued at a certain level... I assume a lot of the treatments I used, both the ones that affected metabolism and immune system, and the saline, for autonomic stuff, were essentially treating secondary aspects of the illness if your theory was correct. But they were somewhat effective. Now it seems like whatever the ultimate cause is is getting worse. If you're right and brainstem compression explains all of the downstream secondary aspects such as immune and metabolic, is there any point to trying to treat those things regardless, in the meantime, while one goes through the process of diagnosing or ruling out structural issues?

On another note, your story is pretty amazing, and I would even venture to say heroic. The descent into hell, and then figuring this out, like threading a needle, made me really tense reading it, because it is such an intense experience and not many people would've managed to have the knowledge to thread that needle. Thanks for sharing it and being an advocate for both the community and the advancement of science and medicine in this area.

 

[frozenborderline]

I am pretty familiar with the diagnosis process for CCI/AAI I think at this point, thru reading Jeff's blog esp. But since this is a long thread to comb through, I'm curious about the diagnostic process for the related cluster of things that could cause similar symptoms. I have read about spinal stenosis causing CFS, chiari was mentioned. Are there any others? And with chiari and spinal stenosis, would the imagining be the same or would other imaging be needed

 

[Cally]

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.

That just happened to me. Dr. Kaufman said he showed my supine 3T MRI to Dr. Bolognese, and he didn't see anything out of the ordinary.

I don't have typical CCI symptoms and moving my neck in different ways doesn't change how I feel. But I thought testing for CCI made sense because I'm very double jointed (9/9 on Beighton scale).

Maybe my problems (fatigue, POTS, brain fog, vision issues etc.) are just autoimmune instead. I did have very high results for most of the CellTrend auto-antibodies.