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

[lenora]

Most PT's will tell you that the cracking sound you hear is air in the joints. However, I have no idea how bad yours is.

Yes, upright MRI's are best for detecting certain things....but I couldn't tell you what all of them are. I only know that in my earliest days they didn't even exist but came along shortly after. I look at them as something to be thankful for....not afraid of. Sorry, can't answer your question about Spain, but surely someone on here can. Specialists come and go rather frequently at times....there workload is very heavy and it doesn't just stop with seeing the patient. A lot of work and effort goes into making a diagnosis.

There are many possible illness, and having an auto accident is certainly one that could leave you with something obvious. Wishing you luck. Yours Lenora.

 

[kewia]

Did you guys have also a problem to join FB groups CFS/ME Brain and Spine as well as Craniocervical Instability?

I made requests to join. For some days the "Your membership is pending" request was shown with the option to cancel, but after that, it simply disappears, so I assume it was canceled but without any reason mentioned.

So I decided to contact the admins directly, even @JenB, but with no success except one admin simply saying I should make a request in order to join, which already happened.

Your experience?

 

[lenora]

Hi @kewia.......Yes, I tried to join Jen's group many months ago. I've since removed myself from FB but never did hear anything else from them. I do know that she has been very ill, so perhaps you should try one of the other administrators. She has worked so hard and sooner or later the body just gives out.

You, however, need and want help,so I really would try another someone else in the same organization.

I'm going on 75, have had this for probably all my life, have a number of conditions, some I've had surgery for....and that was all followed with ME and FM. I'm sick all of the time, but that's not terribly unusual for us. Wish I could say otherwise, but it just doesn't seem to work that way.

Old age matters are now bothering me and some are quite serious. I try not to make it a big part of my life but strongly feel that younger people should try as hard as possible to find some answers. Research is better now than it has ever been, there are experts and just take things as far as possible. Personally, I've found that I've been in and out of the worst of this illness....as so many have.

Since I'm a lot older, I also have a different outlook on matters....that's to be expected. I've learned as much as possible over the years, found my home in volunteer work for many, many years (there are other illnesses besides CCI that can cause the same symptoms as those found in ME, helped others gain disability (never received a dime myself), but that's OK....sometimes we simply do for others b/c it's the right thing.

I've seen treatment methods change over the years....and change again. And amazingly enough, time passes faster than we ever think. We're grateful for those who try to help us and there is one certain young man who figured out that he had CCI himself....and I'll check on his name, he has his own consulting business now and I believe his name is Jeff White. See how far you get on the internet...and I'll do the same. He does advise people, has lists of current doctors and knows Jen Brea well. Good luck. Yours, Lenora.

 

[kewia]

I'm going on 75, have had this for probably all my life, have a number of conditions, some I've had surgery for....and that was all followed with ME and FM.

That's so said to hear. I wish you the best for your -and also the other's journey. It should never have been too late to change things, no one knows.

....and I'll check on his name, he has his own consulting business now and I believe his name is Jeff White

Yes, but afaict, it is quite expensive to get private consultation. I would be more interested on several personal stories. One of them is Janelle Lynn's story. But I want to hear others, it sucks that I need Facebook for it, the admins I see so far managing these private groups seem to be very pessimistic and non-transparent to include new people.

 

[lenora]

Hello @kewia.......I'm sorry to hear that Jeff's consulting is as expensive as it is. I wonder if he has funds available for those who can't afford all of his services. It's possible, and I would definitely check it out.

I don't know what happened to Jen Brea. She had recovered from her CCI surgery and then she (& her husband) both had bad cases of COVID. I haven't heard anything since then.

I do know that there are doctors who aren't in favor of surgery for CCI and prefer to have it managed via exercise. Have you heard anything about that. Nancy Klima in Florida also did some CCI work....have you contacted her? If you don't have insurance, it's probably also expensive....the equipment alone and research $ take up a lot of money. However, I wouldn't quit trying.....what's to be gained if you do? Keep on applying or phoning. There are number of clinics in FL, so ask for other names. Count on at least one wk. for each name.

My second surgery ACM (Arnold-Chiari Malformation) looked almost exactly like the photo shown of the young woman....perhaps hers was a bit more swollen, but that could have merely been the day it was taken.

I found it a fairly easy surgery, at least compared to my SM (Syringomyelia) surgery, which was extraordinarily painful and left me without a functioning shunt. The ACM Surgery (new at the time) took care of both the ACM and SM problems. I have no doubt but that they have changed somewhat today.

If you're having surgery in the near future, or are trying it with exercise, then make certain that your body is in fine condition. Good nutrition (no junk, although I'm tempted myself), vitamins, herbs, etc. If something doesn't agree with you....fine, drop it. Drink healthy drinks, no sodas....prepare your body for what it's undertaking. You'll be glad you did. Sure, the first 2 nights aren't great, but at least they only last for a short time. I was a true mess at the time of the ACM surgery....pain and it went for such a long time. Good luck. Yours, Lenora.

 

[happymachines]

Jen is active on Twitter. Or at least she is usually. She got into a.... stressful conversation, for lack of a better term, with a big name in the disability rights community a few weeks back and has been silent since then. But that might be a more effective place to reach out to her in general.

 

[minimus]

Jeff Wood is now working as a new patient coordinator/analyst for Dr. Bolognese. I think he also still does some consulting on the side. If you contact Jeff through the email address shown on Dr. Bolognese’s website, he will coordinate the process of getting evaluated by Bolognese by sending you all the paperwork and questionnaires that Bolognese wants. Jeff will also create a shared folder in the cloud into which you upload all your questionnaires, relevant records and MRI images.

After all the records and paperwork are submitted, Dr. Bolognese looks at it all and writes a short report with his impressions. The cost is $300. You don’t talk to Bolognese at all - his front office just emails you his written report when it’s done. So really, it’s less a new patient registration process than a screening process to see who should be seen as a new patient.

Jeff is helpful and tries to be accommodating. And he was a needed addition because previously that practice seemed understaffed and non-communicative.

Dr. Bolognese’s report, at least in my case, was pretty short and not entirely clear. My impression from it is that my imaging and provocative self-tests don’t point to CCI, AAI or OTC, but that I should keep doing the provocative tests and get in touch if I start to feel a lot better or worse while doing them. Maybe Dr. Bolognese’s reports are more in-depth if he sees glaring signs of a spinal pathology, but in my case the report was pretty short and seemed inconclusive.

 

[valentinelynx]

Did you guys have also a problem to join FB groups CFS/ME Brain and Spine as well as Craniocervical Instability?

I know that the waiting list for CFS/ME Brain & Spine is quite long: several months at times. The admins have developed an extensive "Pre-group" set of resources so that pending members can review the material and be up on the topics under discussion when they are admitted. I'm not sure what the issue is with the Cranciocervical Instability group, but they probably have some lag time as well—information on these medical issues is spreading fast, and there are zillions of folks seeking more info. I'd suggest reaching out again to the admins; be a little noisy, but polite. I do see new folks being admitted.

 

[lenora]

Thanks everyone for the info on Jen Brea and Jeff White. I don't know why Jen's given such a hard time, she certainly did more for us than most people have and tried very, very hard. I'm sorry. Jeff's a good name to keep on hand. Dr. Bolognese had just started his residency when I was involved with a group that knew about what later became known as The Chiari Institute.

One thing I would like to mention about surgery is this: Bear in mind that it's my case and those of others I have known. Anxiety is not unknown to us and an understanding doctor is always good to have. Sorry, but for some of us it's real and we need help. Heaven knows I tried to help myself after my first surgery....went to meetings, read a book they had available and was able to get out of it myself. Bear in mind that I was very young.

Years later I had to go on something mild like buspar (taken only as necessary); but then shingles entered my life and I truly thought I'd lose my mind. Well, it was lost....and my neurologist, as always, stepped in and helped. So today I'm on the big guns....small doses of Xanax twice/day for approximately 10 years or so. No bad side effects or if there were I stayed on it....I don't remember. 3 rounds of shingles one right after the other were hell. The antivirals came along afterwards. A 4th one was much earlier & was much easier.

There is new vaccine that is given two times over a few weeks. It's 95% effective and yes, I understand that it's expensive $350 if you aren't the right age. I must have been the first person in line for it....I couldn't go through that one again. Bedridden for over a year.....just awful. Yours, Lenora.

 

[kewia]

I'd suggest reaching out again to the admins; be a little noisy, but polite. I do see new folks being admitted.

Yes, that was the strategy preferred by me, but some admins simply don't respond excluding @JenB of course which has other obligations for now.

The main problem is, that after some time the following message on FB:

Your membership is pending
You'll be notified if your request to join is approved.

disappears, so there must be one admin declining me, but I don't get any reason telling me why I'm not a candidate.

I've sent polite messages to the CCI group, they simply don't respond to me, and the activity of their admins is high on FB, afaics.
I've read on some FB Groups, that you can't have any chance to join if your account is very new which is my (created december 2021), maybe this is the reason.

Jen is active on Twitter. Or at least she is usually.

I already checked, but since January, silence.

@minimus, @lenora,
Thank you very much for that info.

 

[valentinelynx]

The main problem is, that after some time the following message on FB:

disappears, so there must be one admin declining me, but I don't get any reason telling me why I'm not a candidate.

Sorry, that's frustrating! I don't know the admins personally so I don't think I could effectively vouch for you. And I don't know why they would reject you, if you answered the screening questions appropriately. In the "About" section, this is what they say about group admission:

"Note: we admit a cohort of 50-100 new members each week. After you put your name in the queue, the current wait time to join is 2-15 weeks. You must fill out all membership questions."​

​

I'd hope that if someone is declined, they'd at least tell you why. Maybe that's being unrealistic, given the number of applicants to the group. You may be right about the problem being the recency of your FB account—makes it hard to vet people if there's nothing on their timelines. Unfortunately, there's good reason for them to be paranoid. It's unbelievably sad, but there are people that act badly in groups: taking screenshots from private groups and posting them on Twitter, for example, with nasty comments.

Sorry, I know even less about the "Craniocervical Instability" group. I will say that I think the quality of discourse is better on ME/CFS Brain & Spine, so I'd focus on joining that group, if possible.

Good luck with everything!

 

[lenora]

Yes, I have had ACM (Chiari) surgery, Syringomyelia stent surgery (miserable) and live with ME and FM....both cause me a lot of pain. To date, we haven't found the "perfect" pain reliever.....things like fentanyl don't remove it 100%, gabapentin probably helps as much as the fentanyl, spinal implants....but they only last for approx. 1 yr. and aren't yet foolproof. Soon, we hope.

I have found that ice packs give me more relief than most of the meds recommended for pain, especially the Ace fabric covered packs that don't freeze as solid as a brick. Over the years, I've found these packs to be the best....15 min. on and 15 min. off. I also use it on the cord itself and it will help numb the pain in a way that nothing else does. Heating pads don't have the same results...but hey, if that will work for you, go right ahead.

Acupunture hasn't worked for me, acupressure does and I use it as as needed. Don't get too aggressive with it, you don't want even more pains.

My myofascial therapist taught my husband techniques many years ago, new ones have come along and if something helps, then use it.

I've reached declining years now, have many serious problems and no, i can't blame them all on ME, FM & Co. Age related, falls but the pain is increasing once again. That burning neurological pain.....it's often very difficult to sort out one type of pain over another b/c many of them are so similar.

You do want a few specialists to read your MRI's. I was very fortunate in that way....and found some excellent doctors and other caretakers.

Eat nutritious foods, vitamins and herbs....and meds, you have to decide and it depends upon how serious the problem is. We also have a lot of intestinal problems, so you may want to read up on that. It's rather complicated....for us and our doctors. Wishing you well. Yours, Lenora.

 

[kewia]

spinal implants....but they only last for approx. 1 yr. and aren't yet foolproof

Wow, I wasn't aware of this. I thought silicon ligaments hold forever.

 

[lenora]

Hi @kewia.....I should have been clearer. i was talking about implanted, battery operated implants. Sorry. I'm a bit leery of having anything done to my spine (with me it's always the cord), so check things out very, very carefully.

Researchers are getting closer, but we're still not there yet. Soon, so there is hope for some conditions.

Sorry about that misunderstanding. Smart person to check the information. Yours, Lenora.

 

[Husband of]

@jeff_w not sure if you are still around, but just wondering whether through your consultancy you have found anyone else with cci that has been diagnosed as me/cfs?

 

[lenora]

Hello @Husband of......Jeff White is still around and I understand is presently setting up his business at The Chiari Institute in NYC (Dr. Bolognese). I have no idea when this occurred, but I believe he's still pulling it all together.

You may want to try him at the Institute itself.....apparently it's very busy up there and people are not getting responses for a very long time.

I have no doubt that others have been found to have CCI as well as other neurological problems. I do believe that treatment of it is now being questioned (exercise vs surgery, etc.). In other words, the same old drill.....what is best for the patient?
'
If I hear of more info concerning Jeff's status, I'll let you know. Perhaps @Pyrrhus knows something...in which case we'd both love to hear the new information. Better health for your wife. Yours, Lenora.

 

[valentinelynx]

Hello @Husband of......Jeff White is still around and I understand is presently setting up his business at The Chiari Institute in NYC (Dr. Bolognese)

Quick correction... it's Jeff Wood (not White), @jeff_w .

He is working at the ChiariEDS center (Dr. Bolognese's practice), screening new patients. A link to the page with his contact info: Chiari EDS Center/New Patients.

Jeff's webpage MEchanicalbasis is highly informative, as well.

Sorry if this info is redundant. I can't keep up with all the posts!

 

[SWAlexander]

I had my Chiari Malformation decompression surgery at UNMH (NM), age 60. Later I heard there was a specialty clinic in Colorado. Quite honestly it was not worth the trouble, pain and long healing time. Nothing really has changed. The cerebellum still pushing downward and forward because the skull is just not big enough for the brain.
pict. 4 days after surgery. Could wash my hair for 5 days.

 

[Violeta]

This thread is 113 pages long, I don't have the ability to read all that, so forgive me if this has already been addressed. Does swelling of the brain cause this?

 

[minimalist]

Hello everyone!
A few months ago I was diagnosed with ME. After finding various articles about CCI and AAI, I decided to go to Barcelona to do the investigations there and to do the consultation with Dr.Gilete.

I did the following investigations:
- uCBCT, rotational CBCT, brain & cervical MRI, MRV, lumbar supine & prone MRI

Craniocervical Junction measurements:
BAI
Neutral: 6 mm
Flexion: 6,9 mm
Extension: 2,4 mm

BDI
Neutral: 3,1 mm
Flexion: 4,5 mm
Extension: 6,4 mm

Translational BAI: 4,5 mm
Neutral supine: BAI: 7m1 nn; BDI: 4,6 mm
C1-C2 neutral misalignment
Signs of AAI looking left and right

This is the conclusion from the report:
1-Craniocervical Instability (CCI)
2-Atlantoaxial Instability (AAI)
3-Bilateral internal jugular vein compression

So he said I'm not a candidate for surgery.
I'm a little confused, because all he suggested to wear collar and the Muldowney protocol. And i'm not sure if
"Bilateral internal jugular vein compression" is because of CCI, and what I can do now.

P.S. Maybe someone has a similar situation, I would be happy to receive an answer.
Thank you.