Does anyone get any pain in the neck?

[Jyoti]

I tried a traction device and it gave me relief from everything for a few minutes. Then another type of pain appeared. So I took the device off and the old symptoms came back. Does anyone know what it may mean? Does it point to cci? But why didn’t the relief last for longer than a few mins?

Obviously there is no way for any of us to know what is happening in your neck/craniocervical junction/brainstem without imaging and skilled interpretation. But... we can surmise a little. What kind of traction device did you use and how long did you use it for? That might offer some clue. In addition, there are variations on the instability. It can be vertical, horizontal, rotational or some combination thereof. So tractioning might relieve one but exacerbate another--that is my understanding. In my case, as I think I mentioned, a hard collar did stabilize and traction to some extent my CCJ. Which felt really good and reduced my POTS symptoms somewhat for a short period of time. But apparently, the pressure of the collar on my thoracic spine caused another set of problems within about 15 minutes. Sounds sort of similar to your experience, actually.

Some relief for you in using a traction device would seem to point to a situation where there is compression that is causing part of your difficulty. But I am increasingly aware of both how complex the various elements are in that region as well as their interplay. As you relieve one mechanical problem, you may be activating another. Hard to know without the imaging, though your felt experience is central. Young is good--at least if you ever want to consider surgery. You will heal faster in all likelihood and possibly have a simpler situation (like no arthritis in the facets perhaps) to work with, to 'fix.'

I am so sorry that you are so severely limited at this point. Being flat all the time is a real drag. Even if it is preferable to being up and dizzy and in pain. I hope you can find some way forward; I'd be cautious, though, until you do get an MRI because it sounds like you may have a complex situation.

 

[Tella]

Obviously there is no way for any of us to know what is happening in your neck/craniocervical junction/brainstem without imaging and skilled interpretation. But... we can surmise a little. What kind of traction device did you use and how long did you use it for? That might offer some clue. In addition, there are variations on the instability. It can be vertical, horizontal, rotational or some combination thereof. So tractioning might relieve one but exacerbate another--that is my understanding. In my case, as I think I mentioned, a hard collar did stabilize and traction to some extent my CCJ. Which felt really good and reduced my POTS symptoms somewhat for a short period of time. But apparently, the pressure of the collar on my thoracic spine caused another set of problems within about 15 minutes. Sounds sort of similar to your experience, actually.

Some relief for you in using a traction device would seem to point to a situation where there is compression that is causing part of your difficulty. But I am increasingly aware of both how complex the various elements are in that region as well as their interplay. As you relieve one mechanical problem, you may be activating another. Hard to know without the imaging, though your felt experience is central. Young is good--at least if you ever want to consider surgery. You will heal faster in all likelihood and possibly have a simpler situation (like no arthritis in the facets perhaps) to work with, to 'fix.'

I am so sorry that you are so severely limited at this point. Being flat all the time is a real drag. Even if it is preferable to being up and dizzy and in pain. I hope you can find some way forward; I'd be cautious, though, until you do get an MRI because it sounds like you may have a complex situation.

Wow, sounds really complex indeed. Thanks for all your help! I wore a simple inflatable soft traction/collar for about 7mins. The first 4mins were good, I could even stand without pain and dizziness! Then another type of pain kicked in, sort of along the whole neck, horizontally. Whereas my normal pain is at the base of the skull.

I would have done a scan if it was easier, but the one Dr Gilete requires will take me about 3h of travelling, each way, in cars and train or just car but none of the options seem good as I was left not being able to move after 20min in a car the other day. So don’t wanna deteriorate plus I don’t know how I’ll handle the pain etc being upright or almost upright. I was feeling like I was gonna faint when I went in the car for 20mins...and because the surgery has so many risks and isn’t a sure treatment even if I have cci etc (which I’m sure I have), I think u can see why I’m hesitant of going all the way to do the scan? As most things it can pick up either can’t be treated or can be treated but make things worse potentially!

Also it’s weird but when I lie flat my head has to be turned to either side (right is more comfortable, less dizzy), as if I’m looking straight I just feel pressure from my brain on my skull at the back. Not sure if anyone can relate?

 

[Rufous McKinney]

Not sure if anyone can relate?

yes: something very off when I attempt to lift my head from a full resting position, at the base of the skull.

Lifting from the side feels less weird.

 

[Jyoti]

@Tella
I have the same thing when I am lying flat. I can actually feel things relaxing when I turn my head to the right lying down. If I lie flat it feels like there is something amiss, some pressure at the occiput that continues. So....I assume that has to with ligament strength and position, but I don't know. Anyway--it doesn't sound weird at all to me. Sounds like life!

Dr. B does not want upright MRIs. He wants, last I heard, supine 3 Tesla. This would be easier for you if you could get to a facility that does 3T imaging. And possibly there is one closer to you. But I see how you would be totally overwhelmed at the effort and risk involved in just going to get the MRIs. I think you are in the UK? You are not in the US, is what I surmise. So Gilete would be the obvious one to go to. But ... perhaps not. If you are that severe, though, I would be surprised if surgery weren't recommended. It sounds like you have so little quality of life that it might make sense to consider the surgery. I am not as severe as you are, so the equation is a bit different; if I had as much pain and loss of function as you do I would be thinking about it.

Also--I know that @mattie had some help with car travel using a hard collar. I believe others have as well. It might not be perfect, but it could be a small piece of helping you get the imaging done if you decide to do it. You have so much to contend with; I am sending all good wishes.

 

[Tella]

@Tella
I have the same thing when I am lying flat. I can actually feel things relaxing when I turn my head to the right lying down. If I lie flat it feels like there is something amiss, some pressure at the occiput that continues. So....I assume that has to with ligament strength and position, but I don't know. Anyway--it doesn't sound weird at all to me. Sounds like life!

Dr. B does not want upright MRIs. He wants, last I heard, supine 3 Tesla. This would be easier for you if you could get to a facility that does 3T imaging. And possibly there is one closer to you. But I see how you would be totally overwhelmed at the effort and risk involved in just going to get the MRIs. I think you are in the UK? You are not in the US, is what I surmise. So Gilete would be the obvious one to go to. But ... perhaps not. If you are that severe, though, I would be surprised if surgery weren't recommended. It sounds like you have so little quality of life that it might make sense to consider the surgery. I am not as severe as you are, so the equation is a bit different; if I had as much pain and loss of function as you do I would be thinking about it.

Also--I know that @mattie had some help with car travel using a hard collar. I believe others have as well. It might not be perfect, but it could be a small piece of helping you get the imaging done if you decide to do it. You have so much to contend with; I am sending all good wishes.

Thanks so much for your kindness!
Yes I’m in the UK and not sure if I’ve found enough data to support that a supine MRI would suffice hence I wanna send the scans to Spain rather than Dr B. How can one tell who’s a better surgeon? But I do feel apprehensive that Dr G is ready to operate on most patients who send him the scan.

Ah when u put it like this it does sound quite sad. However I’m hopeful and have a great loving family and kids who need me too, so every day I get to spend with them all, I consider myself blessed. main thing I can think, talk and do basic stuff for myself.
What if my illness is so severe because of the viral load most of all? That’s why I want to explore this option first... as I can live like this without surgery but I may have complications if I do go for surgery and may not be able to live even as fully as I do now. Hope I’m making sense. Is Dr G the only one who’s good at it that we know of in Europe?

 

[Daffodil]

Thanks so much for your kindness!
Yes I’m in the UK and not sure if I’ve found enough data to support that a supine MRI would suffice hence I wanna send the scans to Spain rather than Dr B. How can one tell who’s a better surgeon? But I do feel apprehensive that Dr G is ready to operate on most patients who send him the scan.

Ah when u put it like this it does sound quite sad. However I’m hopeful and have a great loving family and kids who need me too, so every day I get to spend with them all, I consider myself blessed. main thing I can think, talk and do basic stuff for myself.
What if my illness is so severe because of the viral load most of all? That’s why I want to explore this option first... as I can live like this without surgery but I may have complications if I do go for surgery and may not be able to live even as fully as I do now. Hope I’m making sense. Is Dr G the only one who’s good at it that we know of in Europe?

there are a few doctors who are well versed in surgery at the craniocervical junction in asia. so far, i found out that one of them might not be open minded enough to help ME/CFS patients. there is an expert in beijing who actually taught bolognese a technique. there may be one more connection ..i am waiting for some info. no one else in europe that i am aware of. i am more interested in asia cuz i am poor

 

[Daffodil]

@Tella the procedure where stem cells are injected into the alar and transverse ligaments (called the PICL at regenexx) is done ONLY in the colorado clinic. For a while, they were doing it in the Brussels clinic I think but now, only the colorado one.

 

[Tella]

there are a few doctors who are well versed in surgery at the craniocervical junction in asia. so far, i found out that one of them might not be open minded enough to help ME/CFS patients. there is an expert in beijing who actually taught bolognese a technique. there may be one more connection ..i am waiting for some info. no one else in europe that i am aware of. i am more interested in asia cuz i am poor

Would the guy in Beijing charge less even tho he trained Dr B? Do u know of many success stories re stem cells or have any links? Thanks a lot

 

[Daffodil]

[

Would the guy in Beijing charge less even tho he trained Dr B? Do u know of many success stories re stem cells or have any links? Thanks a lot

i am not sure if i would say he trained dr b but i there is a particular screw technique i think he learned from him.

i cant say for sure but china is probably like 1/4 the price of the west in terms of healthcare...so i am sure the prices would be in keeping with that. but there are a lot of unknowns here. also, there would be a language barrier; when the doctor appears at seminars, he uses a translator

and if you have surgery in china, and you end up with tethered cord or need some kind of revision, screws tightened or something, you might have to go back there for more surgery. this is not an easy situation.

no one i know with a cfs/me diagnosis has had success yet with stem cells in the neck but this is all pretty new. there are a few people who have gotten better with them for other cervical issues but you need multiple, expensive treatments. there are some facebook groups that may be of interest.

https://www.facebook.com/groups/2235327493461719/
https://www.facebook.com/groups/ccjpicl/
https://www.facebook.com/groups/278290869037238/

 

[Tella]

Does anyone get pain in the neck ONLY when upright, sitting up or standing? It happens to me when I’m upright for a few mins not sure if it’s pots, cci, cfs??

 

[Daffodil]

Does anyone get pain in the neck ONLY when upright, sitting up or standing? It happens to me when I’m upright for a few mins not sure if it’s pots, cci, cfs??

POTS is something else. CFS is a cluster of symptoms, not just neck pain. Could be CCI but you would have to be tested to know for sure!