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

[StarChild56]

I am currently trying an Aspen Vista collar.

I wear that one, too. But only when I am upright (which is not very often). I was told not to wear mine more than 4 hours a day (I am in no danger of that happening). It is very helpful when in the car, and when I stand up for a short time do get food in the kitchen. When I have to go to get lab work done, etc. Helps me a LOT. Doesn't fix anything but I notice I do not get nearly as dizzy and weak.

 

[Murph]

Hi Again! I'd like to pop up in here as a doom-monger, cold water-pourer and miserable skeptic.

1. I 100% believe Jeff's CCI diagnosis and that it caused his ME/CFS to go away. I thank him for sharing his story. If it helps even one person that will be a great benefit. Jeff you are a good person and a capable leader and I salute you. It is not doubt of any single patient that makes me skeptical

2. The meta context is what creates my skepticism.

Often, what appear to be great cures for substantial numbers of us don't hold up when assessed more broadly. Rituximab is a great example. It had vivid anecdotal evdience and then failure in clinical trials. It's super disappointing. But this is context we should hold in mind when thinking about CCI as a cure for some cases of ME/CFS. The community (including doctors and researchers!) is more prone to false positives than false negatives. This means we should remember to be skeptical even when everything seems to be going perfectly and finally it all makes sense. Perhaps especially then.

Good analysis requires combining an inside view - ('hey, this is working for lots of people') - with an outside view ('often seemingly great solutions turn out badly'.)

3. The fact the community relies on a small number of doctors to get these diagnoses puts an itch in my brain. Why are other neurologists so unwilling to diagnose CCI/AAI? This doesn't prove *anything*. But the itch remains.

4. Lots of threads exists on this website full of ideas that I am pretty doubftul about. I don't always post skeptically in those threads. But few of those threads seem to entice people to want spinal surgery! So I just want people to be aware of all the different ways that selection bias might have crept into this genuinely astonishing set of stories before they proceed.

Don't let me stop you pursuing this if you want to! But if you're unsure, maybe get an opinion from a neurologist that isn't one of the recommended few, spend some good time in one of these collars (I love this idea as a way to filter out who it might work for), read up on the risks of surgery to people with me/cfs, wait to see how Jennifer Brea is feeling after her surgery, etc.

 

[frozenborderline]

Hi Again! I'd like to pop up in here as a doom-monger, cold water-pourer and miserable skeptic.

1. I 100% believe Jeff's CCI diagnosis and that it caused his ME/CFS to go away. I thank him for sharing his story. If it helps even one person that will be a great benefit. Jeff you are a good person and a capable leader and I salute you. It is not doubt of any single patient that makes me skeptical

2. The meta context is what creates my skepticism.

Often, what appear to be great cures for substantial numbers of us don't hold up when assessed more broadly. Rituximab is a great example. It had vivid anecdotal evdience and then failure in clinical trials. It's super disappointing. But this is context we should hold in mind when thinking about CCI as a cure for some cases of ME/CFS. The community (including doctors and researchers!) is more prone to false positives than false negatives. This means we should remember to be skeptical even when everything seems to be going perfectly and finally it all makes sense. Perhaps especially then.

Good analysis requires combining an inside view - ('hey, this is working for lots of people') - with an outside view ('often seemingly great solutions turn out badly'.)

3. The fact the community relies on a small number of doctors to get these diagnoses puts an itch in my brain. Why are other neurologists so unwilling to diagnose CCI/AAI? This doesn't prove *anything*. But the itch remains.

4. Lots of threads exists on this website full of ideas that I am pretty doubftul about. I don't always post skeptically in those threads. But few of those threads seem to entice people to want spinal surgery! So I just want people to be aware of all the different ways that selection bias might have crept into this genuinely astonishing set of stories before they proceed.

Don't let me stop you pursuing this if you want to! But if you're unsure, maybe get an opinion from a neurologist that isn't one of the recommended few, spend some good time in one of these collars (I love this idea as a way to filter out who it might work for), read up on the risks of surgery to people with me/cfs, wait to see how Jennifer Brea is feeling after her surgery, etc.

I think that the problem is twofold. Nobody is saying fusion surgery for cci is a miracle cure. But diagnosis of an issue this serious is important. As far as most neurologists being not good at diagnosing this id say that most neurologists rely on radiology reports, radiologists miss a lot ESPECIALLY if they don’t know what they’re looking for, and that most neurosurgeons probably aren’t familiar with the possibility of CCI in people who don’t have hEDS or a car accident. The measurements that make the diagnosis here are objective but small and it would be unlikely that the difference between brainstem compression and none is not something you can just eyeball, even as a good neurosurgeon. So I don’t find it particularly suspicious that there’s a small group of neurosurgeons making these diagnoses. And Jeff was diagnosed first by one that was not one of these, in hospital. Also how many patients ever have an upright mri with extension and flexion and have that checked for clivo axial angle etc. chiari is more obvious and well known than cci but both are important differential diagnoses for all these symptoms.

Having skepticism about surgery as a miracle cure and doubting the diagnosis is two very different things. What you are saying is you have some skepticism about the neurosurgeons in question and their diagnoses. That’s fine and healthy. All of them have reviews available online. Bolognese seems to be the most controversial but also a lot of people consider him a life saver who works with very complex cases. In many presentations, Fraser Henderson, one of the other expert neurosurgeons involved, talks of surgery being a total last resort and discussed more conservative management and medication for Eds and related disorders.

 

[Gingergrrl]

@Murph I wanted to add my two cents (maybe three cents LOL) and hope that it makes sense .

1) My first thought is that the patients who are gravitating toward pursuing the MRI's and testing for CCI are those who resonate with the list of symptoms and experiences described by Jeff and JenB (two very reliable sources). In my own case, I started to become curious b/c I have chronic, severe neck pain which originated from a car accident when my car flipped upside down in 2006 but has worsened with each passing year.

I have the same doctor as Jeff and he asked me a list of very specific questions and from my replies he felt strongly that I did NOT have CCI (which I agree with). He did, however, feel that it was worth getting a regular supine MRI of my neck to see what was going on and if it could be helpful in my PT. If I did not have the severe neck pain radiating down my right arm (cervical radiculopathy), I would never have just randomly gotten an MRI.

I think people gravitate toward what resonates for their personal cases and symptoms. As an example, when I first joined PR, there were literally endless threads re: Lyme, LLMD's, and Lyme protocols. I rarely (if ever) read those threads b/c I knew that they did not pertain to me (after having two completely negative Lyme tests in 2010 and 2014). But many pursued the testing and protocols b/c they'd had known tick bites, or positive Lyme tests, and it resonated for them. (I am just using that as an example).

2) My second thought is that I do not believe that ME/CFS is just one disease with one trigger or one treatment that works for everyone (although I know this is a controversial statement). That is why there are sub-groups who can get dramatic improvement from a treatment that can cause near fatal side effects in other sub-groups.

3) I also believe the rate of mis-diagnosis is very high. I was diagnosed with ME/CFS in 2013 and 2014 by my former PCP, an Endocrinologist, a Naturopath, and even a Psychiatrist who said, "You are not depressed, you have something purely medical going on" and then said it was CFS like the three doctors before him. I spent three years believing that it was my diagnosis, and in the beginning I had post viral fatigue syndrome from severe Mono/EBV and it all fit -- the high EBV IgM+ titers, the POTS and autonomic problems, etc. But ultimately, it all shifted into autoimmunity that was weakening my muscles and breathing. It was Rituximab that gave me my life back and I believe that there are others out there with autoimmunity who can be helped by it like me (but I would NEVER say that it is for everyone b/c it is not).

4) Lastly, just b/c there are very few neurosurgeons who can properly diagnose CCI does not mean much of anything IMO. There are very few ME/CFS specialists, few POTS specialists, and probably even fewer MCAS specialists, in the United States but that does not make those few doctors any less real or legitimate. These are orphan diseases (all of them) that are just not well-known or funded.

5) I lied, I have one more point... After I was diagnosed with an autoantibody (Calcium Channel/LEMS) that is much more recognized and well-known, I STILL was not able to find a neuromuscular specialist who was familiar with it enough to provide treatment. The #1 logical next step was IVIG but none of the three that I saw were willing to let me try it. And none of them ordered a lung cat scan, which is critical with this autoantibody b/c it can often correlate with small cell lung cancer.

Ironically it was my ME/CFS specialist (Jeff's doctor) who said that IVIG was my best hope, and fought for me to get IVIG, and ordered the lung cat scan and other appropriate testing. He is not a neuromuscular specialist but he understood all of the nuances of my case better than any Neuro. So it does not surprise me at all that he is learning about CCI and working with Jeff, and similar cases, to get the appropriate testing (nor does it surprise me that the average doctor is not willing to put in the time or effort to do this, especially with the insurance battle).

I hope this all made sense and just wanted to provide an alternate perspective.

 

[roller]

have read a number of times everywhere, but i still cant find what month/year jeff_w had his surgery.

what exactly is the advice after treatment?
(as given by surgeon)
- take x weeks that meds, then this, something rubbing in...?
- special exercises? which ones?
- the healing process/steps
- anything to avoid, not to do? (foods, long walks, heat)
- special shoes to wear? (inlays or similar things)

what normal and what exceptional side effects can show?
(according to the surgeon)
- short term
- longer term

 

[frozenborderline]

Tagging new member @ashleyO in Bc she has mentioned having. Some of the symptoms of cci and has a pots/me/cfs diagnosis and wants help getting imaging etc

 

[frozenborderline]

Also Ashley is in LA and needs help figuring out treatments and testing without waiting until her Mountain View appointment ... if anyone else here is in la and has suggestions for neuros or pots docs , or better pcp ...

 

[Murph]

The measurements that make the diagnosis here are objective but small.

The claim the measurement is objective combined with the idea only a few doctors can diagnose it is one of the things that makes me a trifle uneasy. Now perhaps I'm uneasy in error and I've missed the point. Let me know. I'll lay out my concern:

I 100% understand that CCI might not be spotted in passing. But once you've had your suitable T3 scan done surely you would be able to ask any neurologist to assess for CCI?

Perhaps the reason for choosing these two doctors is that they are the only ones who do assessments remotely or for free. If that is the case then I understand why patients use them. 99 per cent chance they are excellent doctors and they provide a free assessment because they know how valuable it is to patients. However one unlikely but possible explanation for a doctor who does the first assessment free is a highly cynical one: they provide a diagnosis that leads to treatment they can charge for. I'm not saying j'accuse or anything on any of these doctors. It's just one reason to proceed slowly and with eyes wide open.

 

[frozenborderline]

The claim the measurement is objective combined with the idea only a few doctors can diagnose it is one of the things that makes me a trifle uneasy. Now perhaps I'm uneasy in error and I've missed the point. Let me know. I'll lay out my concern:

I 100% understand that CCI might not be spotted in passing. But once you've had your suitable T3 scan done surely you would be able to ask any neurologist to assess for CCI?

Perhaps the reason for choosing these two doctors is that they are the only ones who do assessments remotely or for free. If that is the case then I understand why patients use them. 99 per cent chance they are excellent doctors and they provide a free assessment because they know how valuable it is to patients. However one unlikely but possible explanation for a doctor who does the first assessment free is a highly cynical one: they provide a diagnosis that leads to treatment they can charge for. I'm not saying j'accuse or anything on any of these doctors. It's just one reason to proceed slowly and with eyes wide open.

Have you ever seen the studies that poll neurologists on whether they understand the terms in radiologists report? I don’t have any at hand but they’re shocking. Neurologists mainly rely on radiology reports , and they often don’t even understand them! Plus, radiologists miss a ton of stuff especially if not looking for it. I have never heard o a neurologist having a cfs patient and going “let’s get you an upright mri with flex ex and check your clivo axial angle”. I posted my scans here and am happy for others to look at the measurements, and for there to be transparency in general.

Skepticism is always good , but I’m surprised that as an ME patient you don’t see how obstacles to proper diagnosis can make these conditions seem “rare” and slip through all but a handful of specialists eyes. There are more than these four neurosurgeons that do cci diagnosis, sometimes neurologists or other practitioners make the diagnosis. I think these are just the most highly regarded. They have also published lots.

 

[frozenborderline]

I have in fact heard of some neurologists lookin for this but it’s very rare that anyone a) looks for it and b) uses these measurements to assess rather than just eyeballing it I think. Chiari is easier to see on scan and neuros more familiar with it

 

[Murph]

I’m surprised that as an ME patient you don’t see how obstacles to proper diagnosis can make these conditions seem “rare” and slip through all but a handful of specialists eyes.

Don't put words in my mouth. I can see that side *and* the other side.

 

[frozenborderline]

@Murph if you read Jeff’s story maybe you would understand the pitfalls of just going to a neuro and asking them to do work up for this.

 

[frozenborderline]

Don't put words in my mouth. I can see that side *and* the other side.

I can see both and I have concerns about surgery being pushed but I just suggest you look into the diagnostic process more Bc when u do , it’s not that unbelievable to think that a handful of neurosurgeons are the best at dx

Sorry for coming across as aggressive. You are free to look at my scans and apply the same measurements posted elsewhere in the thread if you are truly curious/skeptical. I plan on posting mine in the btm fb group for same purpose

 

[frozenborderline]

Again, I think the difference btwn being skeptical about surgery and being skeptical about the diagnosis period is huge. People are suffering severely and often getting some relief with traction etc. most neuros are doing nothing to help them... it’s important that the anecdotal evidence here is investigated more broadly and more formally so we can know what’s actually going on. But in meantime I see no reason for reflexive skepticism of all of the diagnoses.

 

[frozenborderline]

The claim the measurement is objective combined with the idea only a few doctors can diagnose it is one of the things that makes me a trifle uneasy. Now perhaps I'm uneasy in error and I've missed the point. Let me know. I'll lay out my concern:

I 100% understand that CCI might not be spotted in passing. But once you've had your suitable T3 scan done surely you would be able to ask any neurologist to assess for CCI?

Perhaps the reason for choosing these two doctors is that they are the only ones who do assessments remotely or for free. If that is the case then I understand why patients use them. 99 per cent chance they are excellent doctors and they provide a free assessment because they know how valuable it is to patients. However one unlikely but possible explanation for a doctor who does the first assessment free is a highly cynical one: they provide a diagnosis that leads to treatment they can charge for. I'm not saying j'accuse or anything on any of these doctors. It's just one reason to proceed slowly and with eyes wide open.

Oh and it’s not two doctors, it’s more like four. But yes two do remote consults. In my case I plan to somehow try and recover enough to travel for an appointment in dc for a second opinion with one of the other ones. Bc you’re right, it’s a serious thing. But I have some signs of breathing issues and hypoxia at night which might make it important to seek treatment soon unfortunately

 

[frozenborderline]

https://www.ncbi.nlm.nih.gov/pubmed/22538829/
Possible connection btwn mold and cci

 

[Mary]

Also Ashley is in LA and needs help figuring out treatments and testing without waiting until her Mountain View appointment ... if anyone else here is in la and has suggestions for neuros or pots docs , or better pcp ...

I'm going to tag @Gingergrrl here - she may have some suggestions. (Hi @Gingergrrl - I haven't been around on the board much for awhile but just read your very informative post above - it was very good)

 

[fredam7]

https://www.ncbi.nlm.nih.gov/pubmed/22538829/
Possible connection btwn mold and cci

Hi

Where can a person be tested for mycotoxins ? I'm on Medicare and destitute . Is it expensive ? Regular dr's won't do this . I was swimming in black mold for years . I'm very interested in this article but it doesnt display the full text.

 

[Gingergrrl]

(Hi @Gingergrrl - I haven't been around on the board much for awhile but just read your very informative post above - it was very good)

Hi @Mary! I noticed that you had not been around lately and was hoping that you were okay. At first when you said that my post was very good and informative, I got confused which thread I am in and had to scroll up to see what I'd written earlier

I'm going to tag @Gingergrrl here - she may have some suggestions

I wish I had good suggestions for LA and my main doctor is also up in Mountain View. I have been up there 5-6 times and now we do phone consults (and e-mails). I have an excellent Endo in LA who treats my Hashimotos/Thyroid and I have an amazing MCAS specialist (he is an allergist/ immunologist) but sadly he is retiring in the next year and not taking new patients.

I still do not have a local PCP (not for lack of trying!) and I saw three Neuros back in 2016 (two in LA and one up at Stanford) and all were horrific. I inquired everywhere I could think of back in 2016 (even in several FB groups) trying to find a good neuro in LA but never found one and I finally gave up.

As far as POTS doctors, my former Cardio (here in LA) was decent and is a very nice man. I would recommend him although ultimately he did not help me (but he tried). I also did a one-off consult with a POTS Cardio at Scripps in San Diego, and he was a nice man and I probably would have gone back to him, if he was not 3.5 hrs south of me. If you want the name of my former POTS Cardio, I can send it via PM. But the two docs who literally gave me my life back are my main doc up in Mountain View and my MCAS doctor.

I wish I could be more helpful!

 

[frozenborderline]

Hi @Mary! I noticed that you had not been around lately and was hoping that you were okay. At first when you said that my post was very good and informative, I got confused which thread I am in and had to scroll up to see what I'd written earlier



I wish I had good suggestions for LA and my main doctor is also up in Mountain View. I have been up there 5-6 times and now we do phone consults (and e-mails). I have an excellent Endo in LA who treats my Hashimotos/Thyroid and I have an amazing MCAS specialist (he is an allergist/ immunologist) but sadly he is retiring in the next year and not taking new patients.

I still do not have a local PCP (not for lack of trying!) and I saw three Neuros back in 2016 (two in LA and one up at Stanford) and all were horrific. I inquired everywhere I could think of back in 2016 (even in several FB groups) trying to find a good neuro in LA but never found one and I finally gave up.

As far as POTS doctors, my former Cardio (here in LA) was decent and is a very nice man. I would recommend him although ultimately he did not help me (but he tried). I also did a one-off consult with a POTS Cardio at Scripps in San Diego, and he was a nice man and I probably would have gone back to him, if he was not 3.5 hrs south of me. If you want the name of my former POTS Cardio, I can send it via PM. But the two docs who literally gave me my life back are my main doc up in Mountain View and my MCAS doctor.

I wish I could be more helpful!

P sure Ashley would love all these suggestions, in fact think has some comorbidities ? Maybe dm? Thx so much