Does anyone get any pain in the neck?

[Tella]

It bad when I’m upright but I still get it when lying down, just not extreme! It seems to have started after I did some gentle stretching of the neck (literally just looking sideways, up n down)...it’s not going away now.
I know I most likely have cci or smth similar but I won’t go for surgery...looking at csf leaks is next but those patients get headaches generally, not neck pain...
Confused!

 

[Rufous McKinney]

Oh Darn Necks.

There are just so many vertebrae, muscles, ligaments, lymph, blood vessels, the jaw stuff, is just so CROWDED in neck land.

I'm hoping to get more info on neck after my PT appointment but I'm not holding my breath.

 

[Tella]

Oh Darn Necks.

There are just so many vertebrae, muscles, ligaments, lymph, blood vessels, the jaw stuff, is just so CROWDED in neck land.

I'm hoping to get more info on neck after my PT appointment but I'm not holding my breath.

Thanks. Have u looked into leaks?

 

[YippeeKi YOW !!]

@Tella
I'm pretty sure you've already covered this base, but thought I'd mention it just in case.

That kind of pain can be cause by vertebrae compressing a nerve bundle, or at least it did for me. NOt much better than a CSF leak, but another way to do.

Good luck, Tella, I know that kind of pain is particularly draining and miserable, it has a resonance and reverberation that's unlike anything else, and my heart goes out to you !!! I wish I had something more to offer than useless commiseration, but it's there, nonetheless.

 

[pattismith]

Neck pain can also be the result of neck muscles contraction. A gentle professional massage can help a lot in that case, with no risk.

take care

 

[Jyoti]

@Tella--I have had terrible neck pain as well, along with dizziness and the sense that I just can't be upright for another minute. Turns out the two latter were POTS in action. Have you checked that out? There is a pretty easy way to get a sense of whether that is an issue for you at home.

For me, there is so much going on in that relatively small space--an MRI helped to identify some of the hidden causes, like disc problems, arthritis (which creates bone spurs that can then jut into the spinal canal), stenosis of the spinal canal and of the foramen (holes through which nerves thread). And then not surprisingly, there is muscle involvement as well. Finally, of course--CCI and AAI. So it is a big mess and sorting it out seems to have to happen one piece at a time.

Traction by a PT has been heaven, literally. I feel so good in so many ways after some of the relentless pressure on all the structures in my neck has been relieved. Getting traction from a PT who is knowledgeable about necks will also tell you more about CCI. If it helps, then it is more likely that is an issue for you.

Dr. B recommends over the door traction devices. https://www.amazon.com/Duro-Med-Cer...eway&sprefix=cervical+traction,aps,141&sr=8-5 If you go that route, @valentinelynx and others suggest you replace the head cradle with this one: https://www.amazon.com/gp/product/B00QKNSQNO/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

My PT was horrified at the use of these devices--she said: It is not the 70s anymore. Come on! But some people here love them. My PT recommends a supine device, which is far more expensive, unfortunately. I worry a bit about traction if you don't have a pretty complete understanding of what is happening in your neck. Pulling, even gently, on part of it can translate down your spine and do things totally unintended to it if there are problems that have not been identified.

In terms of collars--I have tried a number and none have helped me. That is my particular pathology though (I have disc problems in the thoracic spine; cervical collars brace to some extent on the thoracic, so while I appreciated the lift for my cervical spine, the pressure on the thoracic created other issues). I believe Jeff and Jen and others here at PR have had some relief wearing a collar. This is the one I was told by my doctor (at Center for Complex Diseases) to get: https://www.dme-direct.com/aspen-vista-collar-cervical

If you want it, PM me. I have a collection of these things that are of no use to me. What I have been told is that four hours a day is the maximum one should wear a cervical collar to avoid losing muscle tone in the neck and putting yourself in a position where you have less to work with in terms of holding up an already heavy head.

Good luck--it is a complicated area and problem, but I think understanding that there is a 'mechanical basis' for a lot of one's issues is hopeful. I do hope you can figure out some ways to get relief as well as to understand what is going on so that you can make strides toward permanent improvements.

 

[Tella]

@Tella--I have had terrible neck pain as well, along with dizziness and the sense that I just can't be upright for another minute. Turns out the two latter were POTS in action. Have you checked that out? There is a pretty easy way to get a sense of whether that is an issue for you at home.

For me, there is so much going on in that relatively small space--an MRI helped to identify some of the hidden causes, like disc problems, arthritis (which creates bone spurs that can then jut into the spinal canal), stenosis of the spinal canal and of the foramen (holes through which nerves thread). And then not surprisingly, there is muscle involvement as well. Finally, of course--CCI and AAI. So it is a big mess and sorting it out seems to have to happen one piece at a time.

Traction by a PT has been heaven, literally. I feel so good in so many ways after some of the relentless pressure on all the structures in my neck has been relieved. Getting traction from a PT who is knowledgeable about necks will also tell you more about CCI. If it helps, then it is more likely that is an issue for you.

Dr. B recommends over the door traction devices. https://www.amazon.com/Duro-Med-Cervical-Traction-Physical-Therapy/dp/B000FH19QW/ref=sr_1_5?crid=20LYXEWTFMCSC&keywords=cervical+traction+device&qid=1561167759&s=gateway&sprefix=cervical+traction,aps,141&sr=8-5 If you go that route, @valentinelynx and others suggest you replace the head cradle with this one: https://www.amazon.com/gp/product/B00QKNSQNO/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

My PT was horrified at the use of these devices--she said: It is not the 70s anymore. Come on! But some people here love them. My PT recommends a supine device, which is far more expensive, unfortunately. I worry a bit about traction if you don't have a pretty complete understanding of what is happening in your neck. Pulling, even gently, on part of it can translate down your spine and do things totally unintended to it if there are problems that have not been identified.

In terms of collars--I have tried a number and none have helped me. That is my particular pathology though (I have disc problems in the thoracic spine; cervical collars brace to some extent on the thoracic, so while I appreciated the lift for my cervical spine, the pressure on the thoracic created other issues). I believe Jeff and Jen and others here at PR have had some relief wearing a collar. This is the one I was told by my doctor (at Center for Complex Diseases) to get: https://www.dme-direct.com/aspen-vista-collar-cervical

If you want it, PM me. I have a collection of these things that are of no use to me. What I have been told is that four hours a day is the maximum one should wear a cervical collar to avoid losing muscle tone in the neck and putting yourself in a position where you have less to work with in terms of holding up an already heavy head.

Good luck--it is a complicated area and problem, but I think understanding that there is a 'mechanical basis' for a lot of one's issues is hopeful. I do hope you can figure out some ways to get relief as well as to understand what is going on so that you can make strides toward permanent improvements.

Thanks a lot. You’re very kind to offer that to me! I do have pots but also all kinds of problems with my spine etc.
So would u suggest not wearing any collar at all before speaking to a doc? Can a soft inflatable one do me any damage? I thought it may just bring some relief so it’s worth trying it...

Are u hoping to get surgery? I really want to avoid it but there isn’t any other way it seems one can get cured of these things. And even then it’s not 100% sure...

 

[Tella]

Neck pain can also be the result of neck muscles contraction. A gentle professional massage can help a lot in that case, with no risk.

take care

Thank u! In my case it really seems to be the bones as I get some relief when pulling my head up and have all the classic cci signs which appeared even more after I gently stretched my neck

 

[Tella]

@Tella
I'm pretty sure you've already covered this base, but thought I'd mention it just in case.

That kind of pain can be cause by vertebrae compressing a nerve bundle, or at least it did for me. NOt much better than a CSF leak, but another way to do.

Good luck, Tella, I know that kind of pain is particularly draining and miserable, it has a resonance and reverberation that's unlike anything else, and my heart goes out to you !!! I wish I had something more to offer than useless commiseration, but it's there, nonetheless.

Thanks so much! My kind thoughts go your way! I’m sorry u have to suffer this too

 

[Jyoti]

I'm hoping to get more info on neck after my PT appointment but I'm not holding my breath.

How soon do you get to see the PT?

 

[Jyoti]

Thanks a lot. You’re very kind to offer that to me! I do have pots but also all kinds of problems with my spine etc.
So would u suggest not wearing any collar at all before speaking to a doc? Can a soft inflatable one do me any damage? I thought it may just bring some relief so it’s worth trying it...

Are u hoping to get surgery? I really want to avoid it but there isn’t any other way it seems one can get cured of these things. And even then it’s not 100% sure...

My POTS (like others') arises -- at least in part from the mess in my neck. That is why I asked. It certainly sounds like yours might as well.

I think a lot of people have tried the hard collars as steps toward diagnosis. I got a Philadelphia collar first myself and tried that. I found that it helped a lot when I got it on right, but getting it on right was hard to do and very hit or miss. But it helped me take my case more confidently to my GP. (Not that he listened...) I believe that often a hard collar will help some so I can't think of any reason not to try one. If it feels better then...it feels better AND it is more information. Though it seems like you are pretty clear about what is going on. But why not get some relief, even transient?

I doubt that I will get surgery. I am waiting for Dr. B's ultimate diagnosis, but regardless of what it is, I don't think I will go down that road. It sounds like your situation is pretty severe. You can't sit or stand up, is that right? I would think there are so many considerations involved in making the decision: how seriously CCI impacts your function, your particular pathology and what surgery can do for it, the cost, how old you are and what you might expect in terms of support during recovery.... My ME doctor has expressed concerns about the long-term impact of fusion surgery--what happens as you age--will the burden of the ligament laxity get transferred downward and affect other parts of the spine negatively? It is a tough call, but surely worth considering since a few people have had such stellar results. @Daffodil has done some stem cell therapy but I don't think it was the panacea we all hoped it would be. She might update us?

 

[pattismith]

Thank u! In my case it really seems to be the bones as I get some relief when pulling my head up and have all the classic cci signs which appeared even more after I gently stretched my neck

well, even people with cci have neck muscle problem. Wherever you get a joint instability, muscle tend to compensate the issue and get contracted and painful.

 

[Daffodil]

@Jyoti i had a procedure where they inject from the back of the neck, into some ligaments. the procedure with the most success is the one where they inject through the mouth and reach the important alar and transverse ligaments. but they make you do the first one first because apparently some are satisfied with just that and do not need the riskier one. so i will scrounge up the money for the other one. the whole trip +fees costs like $14K canadian for me so if this doesnt help, i likely wont have the money to explore surgery in the 3rd world. but i dont know what to do.

there are a few stories here and there about people with CCJ improving significantly with stem cell treatments but you have to do several of them. these are not people with a CFS dx but people who had accidents and whatnot.

 

[Jyoti]

Yikes, @Daffodil. That is an expensive prerequisite in more ways than one. It sounds so attractive compared to anything else we know of now. Appreciate your pioneering and sharing. I really really really hope that the next go 'round makes a big difference. The first procedure didn't really change anything, did it?

 

[Daffodil]

Yikes, @Daffodil. That is an expensive prerequisite in more ways than one. It sounds so attractive compared to anything else we know of now. Appreciate your pioneering and sharing. I really really really hope that the next go 'round makes a big difference. The first procedure didn't really change anything, did it?

no but since it is mainly ligaments that keep things in place at the craniocervical junction (i think), and i did show issues with the ligaments on the DMX, i would like to give the PICL procedure a shot. if i feel anything different with that one, i might stick to stem cells...if not, I am not sure what will happen. surgery is very problematic because it will require follow-up and perhaps revisions which i could never afford.

regenexx is to open a clinic just for CCJ issues so there must be some promise with stem cells. there is a trial going on ..they must be having some success. i just wish i could find people with more of a CFS-like illness who had this done instead of accidents etc but i guess we are the first wave of them

 

[Jyoti]

regenexx is to open a clinic just for CCJ issues so there must be some promise with stem cells.

Thanks, @Daffodil. I just read a piece by Centano from Regenexx about PICL and the new center for CCJ. It is very intriguing and it is exciting to consider a non-surgical way to stabilize this area of the body. I did note, though, that he discusses a patient with significant improvement on his fourth PICL procedure. That is a lot of trips to CO and a lot of $$$. I think at this point, with clear evidence of CCI one has to choose which direction to take, as you have noted. Again--thanks for pioneering!

 

[Daffodil]

Thanks, @Daffodil. I just read a piece by Centano from Regenexx about PICL and the new center for CCJ. It is very intriguing and it is exciting to consider a non-surgical way to stabilize this area of the body. I did note, though, that he discusses a patient with significant improvement on his fourth PICL procedure. That is a lot of trips to CO and a lot of $$$. I think at this point, with clear evidence of CCI one has to choose which direction to take, as you have noted. Again--thanks for pioneering!

yes...the person with has improved a lot did have 4 PICL's and is going for his 5th one. He has also gone to Regenexx Cayman for other issues. At Cayman, they can expand the stem cells 100 - 1000 times more than they are allowed to do in the USA. However, they do not do the PICL there. So the procedures there, if they involved the cervical joints and what not, probably also played a part in his improvement. And the Cayman procedures are much more expensive than the ones in the USA.

So yea, more questions than answers, which is par for the course with this disease

xo

 

[Jyoti]

So yea, more questions than answers, which is par for the course with this disease

Never truer words.... Thanks for the additional info.

 

[Tella]

My POTS (like others') arises -- at least in part from the mess in my neck. That is why I asked. It certainly sounds like yours might as well.

I think a lot of people have tried the hard collars as steps toward diagnosis. I got a Philadelphia collar first myself and tried that. I found that it helped a lot when I got it on right, but getting it on right was hard to do and very hit or miss. But it helped me take my case more confidently to my GP. (Not that he listened...) I believe that often a hard collar will help some so I can't think of any reason not to try one. If it feels better then...it feels better AND it is more information. Though it seems like you are pretty clear about what is going on. But why not get some relief, even transient?

I doubt that I will get surgery. I am waiting for Dr. B's ultimate diagnosis, but regardless of what it is, I don't think I will go down that road. It sounds like your situation is pretty severe. You can't sit or stand up, is that right? I would think there are so many considerations involved in making the decision: how seriously CCI impacts your function, your particular pathology and what surgery can do for it, the cost, how old you are and what you might expect in terms of support during recovery.... My ME doctor has expressed concerns about the long-term impact of fusion surgery--what happens as you age--will the burden of the ligament laxity get transferred downward and affect other parts of the spine negatively? It is a tough call, but surely worth considering since a few people have had such stellar results. @Daffodil has done some stem cell therapy but I don't think it was the panacea we all hoped it would be. She might update us?

Hi, yes, so many things to consider...surgery is a risk in itself and is successful (some improvement) in 50% of cases, not a lot...and now u scared me as to what may happen as years go by too. Yes, I’m unable to sit or stand without feeling dizziness and pain so I’m always reclined. Flat is best. I’m quite young but don’t wanna leave treatments till late as bones can cause further damage...I guess I’ll stick to my plan to try antivirals first. Does anyone know of anyone who improved a lot on antivirals who had neck pain and dizziness and couldn’t stand and sit because of it? As antivirals seem to work only if u have the classic flu symptoms but not really the spine issues/pains...

That’s why I don’t wanna have a scan now either as I won’t go for surgery straightaway. 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?

 

[Tella]

yes...the person with has improved a lot did have 4 PICL's and is going for his 5th one. He has also gone to Regenexx Cayman for other issues. At Cayman, they can expand the stem cells 100 - 1000 times more than they are allowed to do in the USA. However, they do not do the PICL there. So the procedures there, if they involved the cervical joints and what not, probably also played a part in his improvement. And the Cayman procedures are much more expensive than the ones in the USA.

So yea, more questions than answers, which is par for the course with this disease

xo

Do u know of any Europe, ideally UK based clinocs who do that? Thanks