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

lenora

Senior Member
Messages
4,913
It's hard to get the correct MRI, but worth it. Will Dr. Bolognese read them if sent to him by mail? That would help immensely.

Also, when the SM and Chiaris clinics were first formed (& Dr. Bolognese was just being trained), special accommodations were provided for out of town people. I don't know if this is still the case or not, but it would be worth checking into. If you want warm weather, FLA is a good place to go. A lot of research, good doctors and universities in many parts of the state. May give you a breather from the Maine winter....I'm not to up on current doctors, although I know the University of Miami is devoting considerable resources and has good doctors on staff. A call to them may be worthwhile. Again, the doctors I knew have since retired, etc., and new names and faces have replaced them.

I understand that it's not easy to go anywhere. Sadly, that's what we often have to do. A good recommendation would be helpful and many doctors will recommend others....it's worth asking. Yours, Lenora
 

Nord Wolf

The Northman
Messages
564
Location
New England
If you want warm weather, FLA is a good place to go. A lot of research, good doctors and universities in many parts of the state. May give you a breather from the Maine winter....I'm not to up on current doctors, although I know the University of Miami is devoting considerable resources and has good doctors on staff. A call to them may be worthwhile. Again, the doctors I knew have since retired, etc., and new names and faces have replaced them.

I understand that it's not easy to go anywhere. Sadly, that's what we often have to do. A good recommendation would be helpful and many doctors will recommend others....it's worth asking.
Thanks Lenora. Florida, I will never move to that state. I’ve been there many times and it is far too crowded and polluted for my taste. Florida has more polluted unsafe freshwater than any other state in the country.
However, yes they do seem to have a lot of high quality research going on down there. I would love to get in with Nancy Klimas, MD. However, as you said, travel logistics and energy as well as her incredible wait list is a bit daunting.

I never considered CCI or other structural issues in the neck and base of skull before. Nevertheless, with increasing symptoms, more and more diagnosed conditions, severe increase in neck and upper spine pain, dizziness, vision issues, brain pressure, headaches, etc… I’d be foolish not to get it checked out. So, right now, as usual, I’m in the waiting game for local appointments. From there we shall see what pathways open up. If a supine MRI is ordered, we have good facilities nearby. If an upright is ordered, I have people who would willingly drive me to Albany to that facility.

Today I’m starting LDN, we have ordered a specialized blood test panel, and we are finally again looking more deeply into SGB, which someone will need to drive me to eventually. Who knows, perhaps these avenues will lead to something that erases the neck/spine issues and symptoms and looking into CCI won’t be necessary.

As always, nothing with any of this is simple, cut and dry.
 

lenora

Senior Member
Messages
4,913
Hello @Nord Wolf.....have you tried a cervical collar yet? As usual, I forget the name but I did post it on here just a short time ago. Anyone have it??? It may give you an idea of whether CCI is your problem. Everything is, I know....but if we could just narrow some of it down, it would help. Nancy Klimas's clinic probably has the name of the collar and I would expect the nurse would know. In the meantime, put your name on the list....it's a start.

I'll check more and see if I can find the name for you. Yours, Lenora
 

Nord Wolf

The Northman
Messages
564
Location
New England
have you tried a cervical collar yet?
Nope.
Nancy Klimas's clinic-put your name on the list
Not sure of the point anymore. It isn't like she has cured anyone from this crap.

Don't mind me. Not doing so well mood-wise. Same bed, same couch, same walls, same ceiling day after day, week after week, month after month... and its only January. Just really worn down from it all today. I feel like a saturated bag of mud filled with raw nerves at the bottom of a cold dark ocean trench being pummeled by constant falling boulders. Only so much distraction to use and the misery always seeps through.
Never mind, like I said, don't mind me. I shouldn't even be on here this evening.
 

lenora

Senior Member
Messages
4,913
HI Nord Wolf.....Please don't worry about upsetting me. I've been there myself and while it isn't the perfect time, often it's the time we need to let our feelings out the most. Find something to kick (note I said something, not someone). :)

I get it. You're an outdoorsman and you can't do anything this season demands. No trapping, hunting, checking out nature.....just the sameness of it all. No sunshine either, for that matter.

Well, it's OK. Crawl into your corner and talk to the walls. It happens to everyone and hopefully you'll feel better about things next week. There isn't even anything good on Netflix, etc., is there?

Write to us about nature. You've written some interesting pieces on survival, so you can do it and chances are you already have. Tell us what your mentor taught you about nature and what it means to us. I'd like to know and I'm sure that others are the same. Feel happier soon. Yours, Lenora P.S. If someone can find out the name of that collar, I'll put it in my notes for another use. Apparently most people find relief immediately after using it. CCI is indicated, but I don't know what the surgical stats are. Anyone??
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Same bed, same couch, same walls, same ceiling day after day, week after week, month after month... and its only January. Just really worn down from it all today. I feel like a saturated bag of mud filled with raw nerves at the bottom of a cold dark ocean trench being pummeled by constant falling boulders. Only so much distraction to use and the misery always seeps through.

Hey @Nord Wolf -- I actually appreciated your honest comments. Almost sounds sort of poetic. -- Take care! :hug:
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
@valentinelynx - Excellent advice, thank you for taking the time and energy to respond in depth. I will look into this more thoroughly and see what I can come up with. This is just the initial stage of research. I'm on wait lists with various doctors for first consultations concerning this avenue. I also have a dear friend nearby who was recently diagnosed with mild stenosis in parts of the brain and a Chiari 1 malformation. I'm waiting to hear back on who she saw, what tests she had done, and where she got them done.

And I'm in the far north of Vermont, so anywhere in NY is a pretty huge trip for me in my condition.
I'm happy if I was helpful. I do understand about travel. Most CCI patients end up traveling considerable distance to see doctors who have the knowledge to help them, despite the great difficulty involved. Some require medical transport (and a huge insurance battle to qualify for insurance to pay for it). Some travel from (or to) Europe or farther.

I also feel I should comment that there are far more neurosurgeons with experience treating Chiari than CCI. This can sometimes lead to unfortunate outcomes if the patient has both Chiari and CCI (what Dr. Bolognese calls "complex Chiari" because treating Chiari (with posterior decompression) can be futile without also doing a craniocervical fusion in these cases. But also, more simply, your friend may find someone to treat her Chiari who won't have any useful knowledge about CCI. (Sorry, I'm not sure what "mild stenosis in parts of the brain refers to).

I wish you luck in finding the treatments you need!
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
I have just remembered something wierd that could be related to connective tissue disorders. When doctors ask if I'm double jointed I say no but my brother and mother are. However now that I think about it I should have mentioned my skin/bleeding issues.

When I was healthy and doing kickboxing I would very often find my feet bleeding and I would be leaving blood stains on the wooden floor we trained on. Not only that but my tailbone would bleed whenever I did situps leaving a blood stain on my shorts. People used to tell me all the time I was bleeding from my ass (lol).

This happened to no one else. People would say I needed to toughen my feet up but I was there for over a year and it still happened. Not only that girls would train there too and they never had this issue despite having softer skin.

Perhaps I have genetically not great connective tissue that wouldn't be an issue until I caught an illness that also effected connective tissue (via MMP?)?

My neck also seems to be able to bend far over the limit when I had my upright MRI done. Could I do this before getting ill? I don't know.

Anyone else have issues with skin and friction / bleeding?
 

Nord Wolf

The Northman
Messages
564
Location
New England
Anyone else have issues with skin and friction / bleeding?
That would be a NO. I've never been much of a bleeder. I've known people who were, and I know there are numerous conditions where easy bleeding is an issue/symptom. Are you just now starting to research this for yourself?
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
That would be a NO. I've never been much of a bleeder. I've known people who were, and I know there are numerous conditions where easy bleeding is an issue/symptom. Are you just now starting to research this for yourself?
I have dabbled in the CCI connective tissue stuff over the last couple of years. I only just remembered that fact today. It feels more like slightly easy than normal skin breaking. The bleeding wasn't excessive or anything but I think it's significant that I saw no one else with that issue.

I am currently experimenting with a MMP inhibitor stack that hip posted about somewhere on here. So I'll see how that goes.
 

lenora

Senior Member
Messages
4,913
Hi @sb4.....there used to be groups on Facebook that handled Ehler-Danlos (for example). You may get some insight from some of their experiences. I don't believe anything can be done about it....but new things do come along. Good luck. Yours, Lenora