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

[Wayne]

I appreciate skepticism toward rushing into dangerous surgeries. If we apply too much knee jerk skepticism toward promising theories backed up by mountains of anecdotal evidence, before they even get tested , we are just hampering the process of possibly giving people safer, non-surgical solutions to ME/CFS.

@debored13 -- Great overall post. Thanks...

 

[StarChild56]

It should be noted that radiologists miss an astounding amount of stuff, and many neurologists rely mostly on the radiology report. There’s a huge problem in medicine of it becoming fast, overly “efficient” , etc , at the cost of patient care. It’s no longer artisanal, your physician on average is just running your lab work through a program that tells him if something is out of the normal range, not poring over your tests like a detective trying to figure out a puzzle. When people actually do the latter, they are often accused of seeing stuff that isn’t there.

This can not be overstated.

 

[StarChild56]

@debored13 -- Great overall post. Thanks...

I wholeheartedly agree.

 

[StarChild56]

I am speaking for myself, and only myself.

I am not so gullible as to think that my surgery for CCI/AAI & CSF leaks will "cure" my ME/CFS, POTS, MCAS, adrenal insufficiency, EDS, my asthma, my severe allergies, my EBV, or any of the other millions of serious medical conditions I have. I am intelligent, even though I have severe brain fog. I am not a child. I am living in absolute misery. MY ONLY hope for my severe neck (and into shoulder, arm, radiculopathy) & severe migraines which do not respond well enough to meds; which had me taking a dangerous amount of meds trying to control them - is this surgery.

I am well aware I could die. I am well aware I could have serious complications (I am prone to having rare complications). I am aware I might need multiple surgeries. BUT IT IS MY ONLY HOPE. I am not so naive that I expect to breeze into surgery and come out running laps and cured of all that ails me. If I can have less neck pain/migraines/ back of skull where meets top neck pain - I will still be woefully ill. I will still be in my recliner laying down or bed laying down most days. But having some huge pain relief is huge.

If I am super lucky - my POTS and MCAS will improve. If that were to happen - I would be so much healthier.

And if I am like @jeff_w and recover fully, well it would be my miracle.

But just because I am so very desperate to get better does not mean I am being taken advantage of or am not going into it with realistic expectations.

Lastly, my specialist has literally saved my life. I trust him with my life. The little life I have is due to him. So I reject wholly that he in any way is funneling me to Dr. Bolognese like they are partners in a puppy mill. My specialist dedicates so many hours a day to helping people who no one else will or can...he answers emails at 10 pm on Sunday nights...he goes to all the conferences to try to keep up on all the research. He clearly explains things to me and my husband, he explains what is gold standard; what is considered "experimental" - and why he would or would not try that approach...explaining the rationale and it is always my choice. He takes his time to get all the information.

I'm rambling at this point but I needed to put this out there.

 

[frozenborderline]

The main specialist who is “funneling” patients to Bolognese is David Kaufman. He is the most respected CFS specialist out there. He also doesn’t promise miracle cures nor does he have any signs of being a quack. I trust his judgment

 

[StarChild56]

The main specialist who is “funneling” patients to Bolognese is David Kaufman. He is the most respected CFS specialist out there. He also doesn’t promise miracle cures nor does he have any signs of being a quack. I trust his judgment

I agree wholeheartedly, again.

 

[StarChild56]

Even my very conservative previous PCP was impressed and had no complaints after researching him - and he is one who will fight tooth and nail if he does not consider something "gold standard". If he had any qualms about Dr. Kaufman being a quack, he would have let me know in no uncertain terms that he disagreed with him and would try to steer me to specialists within the health system I am part of/PCP is part of.

 

[Wayne]

I am not so gullible as to think that my surgery for CCI/AAI & CSF leaks will "cure" my ME/CFS

I may not have kept up scrupulously (that word is kind of out of my vocabulary these days ) with all the posts in this thread, but does this mean you're definitely going through with the surgery? And if so, when would that take place? Your chronic pain sounds like such a burden, and I can surely understand your decision to do this if you and your doctors felt it would be helpful.

Have you by any chance ever used or considered DMSO, MSM or Sodium Thiosulfate (STS) to help with some of your pain issues? I haven't gotten around to posting some of my experiences on the "Alterternative..." thread I started. DMSO has been especially helpful, and am just now starting on STS.

 

[StarChild56]

I may not have kept up scrupulously (that word is kind of out of my vocabulary these days ) with all the posts in this thread, but does this mean you're definitely going through with the surgery? And if so, when would that take place? Your chronic pain sounds like such a burden, and I can surely understand your decision to do this if your and your doctors felt it would be helpful.

Have you by any chance ever considered DMSO, MSM or Sodium Thiosulfate (STS) to help with some of your pain issues? I haven't gotten around to posting some of my experiences on the "Alterternative..." thread I started. DMSO has been especially helpful, and am just now starting on STS.

I will definitely go through with surgery if Dr. Bolognese confirms I am a good candidate- but no, it has not been scheduled. I have my video conference with Dr. Bolognese in a couple weeks. I assume that we will schedule surgery after that. I was lucky that the day after I brought my cervical MRI CD to my specialist, he was already scheduled to meet with Dr. Bolognese. After Dr. Bolognese reviewed it and I have my diagnosis, "Spinal instabilities of occipito-atlanto-axial region" - I went on line and filled out all the forms. Shortly thereafter, the intake coordinator contacted me to schedule the video conference when I think I'd only had 1 PT session. Also from a conversation I had with my specialist, I gathered that me getting the surgery was pretty much a sure thing, just based on my ability to travel (not easy).

Even now, I sometimes have to sleep on my back with no pillow. My symptoms are best when laying completely flat. The more upright I am, the more pain and pressure.

To answer your question about the different items you listed to help with pain, no I have not tried them. I have never heard of them. I definitely appreciate the information and will try to read (as much as brain fog allows) over time to try to understand. However, I am hesitant for a number of reasons:
I have become suddenly allergic to so many things it scares me to try anything
I literally have a one page document, 8 font - with all my prescription meds that I HAVE to take, plus prescribed supplements - and take so many pills, vials of liquid, thick gross suspension, glass of liquid medication at night - that I am completely overwhelmed. I can't fill my own med box - literally even with a list of meds and dosages I mess it up EVERY time. My adult son or husband have to do it and they even make an error every now again as I am taking over 30 something pills a day! Not including liquids, suspensions, nasal spray, inhaler (maintenance and rescue) - and not including PRN meds. Another hesitation is any possible reactions between meds, supplements. And my severe allergies that sprout up.

I hope that made sense and I hope I do not sound ungrateful as I truly appreciate it and I will read up on it - it just may take me a while

P.S. - I do not blame you if you do not read all this - it is a book and sometimes, many times I can't read posts like this. My apologies if so.

ETA: too many details, removed them

 

[StarChild56]

@Wayne - brain cement. I should add, that my severe migraines started with a horrific car crash - I was at and had been at a complete stop at a red light for a couple minutes (car totaled, pushed out into the intersection by a big crossover SUV type vehicle, going over 45 miles an hour didn't even press on brakes till near impact - I know I watched frozen in horror in my rear view). Never had them prior. That was over years ago. They progressed with time, and then in the last 2 years - and last year especially had a sudden increase in severity, stopped responding as well to meds - and key is also (for CSF leaks but interestingly, also makes sense for CCI/AAI) that as the day wore on, I'd have "headaches" not necessarily my migraines. Felt better first thing in the morning after - drum roll - laying flat all night. So that and other things had my specialist concerned about CSF leaks for a long time. At first - I didn't even answer his question correctly if he asked if my migraines worsened when I stood up because they were already so bad I didn't register it BUT- when it was just the "headache" - Definitely noticed that and as time wore on my tinnitus (pulsatile) WENT HAYWIRE booming in my head when I'd get up sometimes w/o a migraine or headache. So these were big red flags.

The good thing about Dr. Bolognese - even though he is not the foremost CSF surgeon - He is good at finding and fixing them and does this routinely with the CCI/AAI surgeries. The website boasts of some stat - forget if it is the lowest number of CSF leaks with their surgeries maybe - so that is also a good sign. Since I have EDS this leaves me at greater risk for CSF leaks.

 

[Desertstorm]

Interesting. I have a MRI on my neck coming up. The neurosurgeon is a bit of an ass but will instruct him to check for that.

Edit:
Looking it up it seems to be a childhood affliction. He is looking for a narrowing or injury of the neck. Possibly due to RPG hits near to me. Well shall see.

 

[Hip]

Interesting. I have a MRI on my neck coming up. The neurosurgeon is a bit of an ass but will instruct him to check for that.

My understanding (see Jeff's comment here) is that CCI/AAI will not show up on a standard brain MRI. You need an upright type of MRI, and also need to perform flexion and extension movements of the head during the MRI. In addition, you need to send the MRI results to a neurosurgeon who knows about CCI/AAI, because regular neurosurgeons are not trained to spot it.

The neurosurgeons who are able to diagnose CCI/AAI are listed on Jeff's website www.mechanicalbasis.org.

It is quite extraordinary that 90% of the 20 or so ME/CFS patients on this forum who so far have been properly tested for CCI/AAI turned out to be positive. The significance of this finding is not clear yet (as it is not known whether the CCI/AAI is a cause or consequence of ME/CFS), but this finding may constitute a new discovery about ME/CFS.

 

[StarChild56]

My supine MRI (though I did have the required extension / flexion and whatever else the special views are called, as noted by my specialist who then showed my MRI to Dr. Bolognese) showed CCI/AAI. It was an open MRI which is only a Tesla .3 (so far lower than a Tesla 3). Just my experience.

 

[Hip]

My supine MRI ... showed CCI/AAI.

That's interesting, so it may show up on regular MRIs if the flexion and extension movements are made.

 

[StarChild56]

That's interesting, so it may show up on regular MRIs if the flexion and extension movements are made.

Yes, perhaps so. And I won't lie - it was very painful/uncomfortable and I had to hold the positions (one was sort of pushing my neck down, the other was sort of like putting my chin up...if that makes sense? I was laying flat on my back) and for a little while I thought - uh oh, I'm not going to be able to keep this up and or be still but I managed it.

From my memory of the LONG orders that my specialist listed, it had the flexion and extension but then a lot of measurement type stuff so maybe that is what is important? Idk, reaching here. But for the actual MRI I only had to do 3 positions - the normal lying down one which took the longest, then the chin down, chin up.

 

[Hip]

@StarChild56. I've just noticed that on Jeff's website regarding CCI/AAI diagnosis it says:

Get a doctor's order for very specific imaging. You can do this imaging locally, and your primary care doctor can order it for you. The imaging needs to be of your skull and cervical spine. Most neurosurgeons who understand CCI/AAI want dynamic imaging, such as:

• Upright MRIs with flexion, extension, and rotational views; or,
• Supine CT scans with flexion, extension, and rotational views

So he says you need either upright MRI scan or a supine CT scan.

 

[StarChild56]

@Hip - I believe in this thread somewhere @jeff_w talked about supine MRIs being preferred by some specialists. My specialist, who uses Dr. Bolognese to review MRIs, did not ask me what Tesla the MRI was - knew it was supine and just had the specific orders for the views. And that was enough for my diagnosis with Dr. Bolognese so I know for a fact that Dr. Bolognese accepts supine views. I can't speak to the other specialists, of course.

I think things have evolved quickly over the last year, perhaps that explains it...otherwise I do not really know how to explain it. I know my specialist speaks with Dr. Bolognese personally, and consults with him and meets with him (like he did with my MRI) so I am certain that if an upright MRI or a supine CT were required, he would have ensured that is what I received.

Perhaps at the time @jeff_w noted that in his blog, that was the requirement. Since then, at least Dr. B has changed some and accept something different than the initial requirements.

 

[Hip]

I believe in this thread somewhere @jeff_w talked about supine MRIs being preferred by some specialists.

Ah yes, he seems to say that further down in on the same diagnosis page of his website:

One of the expert neurosurgeons now prefers 3T supine MRIs. These are much easier to access and more likely to be covered by insurance.

 

[Murph]

I was reading about Post-polio syndrome recently. One theory is that it is to do with problems with the nervous system. https://en.wikipedia.org/wiki/Post-polio_syndrome

Thinking about nerves got me onto the ME/CFS researcher Michael van Elzakker who believes the issues in our disease could be traced to the vagus nerve. He thinks ongoing infection or inflammation in the vagus nerve then disrupts all autonomic systems - including the gut, circulation and the immune response.

I wondered: could a virus enter the vagus nerve more easily if the brain stem were compressed? This could be an explanation for a link between CCI and the viral onset of ME/CFS. *If* - and note I consider this highly unlikely given the limited data we have so far - but if in fact a large share of people with me/cfs have cci, it could be because the cci made them susceptible to long-lasting sequelae from their initial infection.

i.e. If you have CCI your mononucleosis virus easily gets into your vagus nerve and ruins it forever, giving you me/cfs symptoms. If not you recover normally. This is the idea.

The problem with this theory seems to be that the vagus nerve is not entirely within the brainstem. They both emerge from the brain in roughly the same place but then they branch off. The vagus heads down the jugular vein and by the time you're in the neck proper the vagus nerve is some way forward of the spine.

I would put a very low probability on the theory I've just described being true. Maybe 0.1%. Just thought I'd throw this out there as a bit of rough thinking that someone might be able to glean a much better idea from!

 

[Desertstorm]

Sadly we all seem to be grasping at any possible cause or cure. I really try to refrain from that but get sucked in. Oh well.