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

[Daffodil]

Yes, that is the type that is recommended by Dr. B. I am using it but I replaced the head harness with this one. It is better made by far, and doesn't hurt my chin like the cheap one that came with the traction device. Plus, a lot of Amazon customers complain that the head harness they receive with the traction device is badly made, sometimes to the point of being unusable. Mine was made wrong in that the velcro straps that come under your jaw were attached on the wrong side of the harness. I could still use it by folding the harness so that straps came out on the right side, but still... I recommend the Bird & Cronin one.

thanks i ordered the traction device but then got worried and returned it

i am worried about making things worse because i do not have the option of having surgery. also, a couple of people said it could be contraindicated after the stem cell treatment i had....

i am going to ask dr B if i could get a consult without doing this first but he is swamped now so i doubt it will work

xo

 

[Jyoti]

A couple months ago, I was sent for PT evaluation of CCI (positive) which included the traction-as-diagnosis component ordered by Dr. B. My PT was horrified by the suggestion that I use the traction device recommended by him (over the door type) for all sorts of reasons, including the fact that it can have a deleterious effect on the jaw which can then impact the cranio-cervical junction. She let me borrow a supine device from her for a month and after that time, I found it helpful enough to buy my own. It has graduated settings so you can arrange it to traction at the C0-C2 level, at the C-4-5 level and finally C-6-7. I was concerned at first that the angle would be dangerous, but set at the lowest level it does not feel --to me--like it is anything but helpful. In fact, it mimics the traction done by my PT. It is expensive, so I was grateful to have the loaner, just to get a sense of how it would affect me. Since I am fairly mild in my symptoms, I am hoping this thing--used 5 minutes at a time 2-3 times a day---will be a useful tool over time. I don't think I am a candidate for surgery, but I do have a lot of neck pathology that clearly impacts my function, causes dysautonomia, etc. I don't know about the stem cell part, @Daffodil, but I thought it might be of interest to someone here.

https://www.amazon.com/ComfortTrac-...upine+cervical+traction&qid=1571622336&sr=8-4

 

[Daffodil]

A couple months ago, I was sent for PT evaluation of CCI (positive) which included the traction-as-diagnosis component ordered by Dr. B. My PT was horrified by the suggestion that I use the traction device recommended by him (over the door type) for all sorts of reasons, including the fact that it can have a deleterious effect on the jaw which can then impact the cranio-cervical junction. She let me borrow a supine device from her for a month and after that time, I found it helpful enough to buy my own. It has graduated settings so you can arrange it to traction at the C0-C2 level, at the C-4-5 level and finally C-6-7. I was concerned at first that the angle would be dangerous, but set at the lowest level it does not feel --to me--like it is anything but helpful. In fact, it mimics the traction done by my PT. It is expensive, so I was grateful to have the loaner, just to get a sense of how it would affect me. Since I am fairly mild in my symptoms, I am hoping this thing--used 5 minutes at a time 2-3 times a day---will be a useful tool over time. I don't think I am a candidate for surgery, but I do have a lot of neck pathology that clearly impacts my function, causes dysautonomia, etc. I don't know about the stem cell part, @Daffodil, but I thought it might be of interest to someone here.

https://www.amazon.com/ComfortTrac-...upine+cervical+traction&qid=1571622336&sr=8-4

thanks jyoti. that looks like a great device. i was looking at something called Posture Pump but in the end, decided on a $7 neck rest thing lol

if your case is mild, i think what you are doing could be a good idea. i looks like you have a great PT.

when you stop using the device, do you have any rebound worsening effects?

 

[Jyoti]

when you stop using the device, do you have any rebound worsening effects?

Directly after I use this device, I feel much better. I have actually had 'normal' POTS stand tests, which NEVER happened in the past. (Something objective in addition to the subjective.) I see better, breathe better, think better, have more energy. It can be dramatic or subtle, but there is always a sense of more flow afterwards. And then it begins to diminish. After a few hours, I find myself back at baseline. So it is not a 'cure' for me in any way, but it certainly helps with symptoms. And only once, in an overabundance of enthusiasm, when I used it for about 15 minutes (you know--more is always better, right???) I felt like I had gone too far and that was followed by a brief crash. So I approach it cautiously, but used in small bits, it really is one of the more helpful investments I have made.

There are so many choices in terms of devices. I looked at them all and couldn't pick one, but the cheap neck rest thing looked good to me too! In the end, I was fortunate to have the chance to try this out--I never would have sprung for it without the direct experience of its usefulness or a host of recommendations.

 

[Daffodil]

Directly after I use this device, I feel much better. I have actually had 'normal' POTS stand tests, which NEVER happened in the past. (Something objective in addition to the subjective.) I see better, breathe better, think better, have more energy. It can be dramatic or subtle, but there is always a sense of more flow afterwards. And then it begins to diminish. After a few hours, I find myself back at baseline. So it is not a 'cure' for me in any way, but it certainly helps with symptoms. And only once, in an overabundance of enthusiasm, when I used it for about 15 minutes (you know--more is always better, right???) I felt like I had gone too far and that was followed by a brief crash. So I approach it cautiously, but used in small bits, it really is one of the more helpful investments I have made.

There are so many choices in terms of devices. I looked at them all and couldn't pick one, but the cheap neck rest thing looked good to me too! In the end, I was fortunate to have the chance to try this out--I never would have sprung for it without the direct experience of its usefulness or a host of recommendations.

that is pretty incredible that you have real improvement with it. so I guess that means CCI could really be a huge factor or even the cause of this whole thing for you.

you might wanna look into stem cells if you don't want surgery...
xo

 

[Jessrose21]

I'm getting a CT scan next week and am wondering exactly what kind of blank CDs I need to bring with me to copy my results? The kind for burning photos? CD-R? Thanks!

 

[rel8ted]

I'm getting a CT scan next week and am wondering exactly what kind of blank CDs I need to bring with me to copy my results? The kind for burning photos? CD-R? Thanks!

Ask the facility if they will burn you a copy. I was given one before I left.

 

[JenB]

My observations from about a week of over-the-door traction with ~14 lbs of weight:

- No issues with the procedure itself.
- There is no "response" in terms of reduced BPM as noted by Jeff or a sudden feeling clarity as Jen describes. Could be that the weight isn't enough, but I feel a bit uncomfortable going much higher than this.
- Pulse stays about same (with POTS) during traction, maybe slightly increased if I pull my head down to simulate more weight temporarily.
- After I remove the device, I feel a slight rush of blood to the head, a nice feeling for a change with the normal feeling of oxygen starved & low blood flow brain.
- Few minutes later I start to feel a bit dizzy and I notice my pulse is a bit lower than normal, so I prefer to lay down for the next 30 minutes.

The long term effects were perhaps more interesting, or concerning. I had a slight but notable increase in my typical brain symptoms, which can best be described as neuroinflammation. So something in this procedure makes my "brain fire" worse and the effect becomes more notable after a couple of days. This also leads to slight worsening in OI/POTS. I wonder if this type of delayed negative response has any diagnostic significance in the eyes of these neurosurgeons.

You shouldn’t go higher than that at home. I didn’t experience dramatic improvement until 30 pounds. DO NOT DO THAT AT HOME.

 

[Bowser]

thanks i ordered the traction device but then got worried and returned it

i am worried about making things worse because i do not have the option of having surgery. also, a couple of people said it could be contraindicated after the stem cell treatment i had....

i am going to ask dr B if i could get a consult without doing this first but he is swamped now so i doubt it will work

xo

This worry plagues me as well. I am wondering if wearing a cervical collar for say, 6 hours each day, would be a better initial solution than going directly to traction. If there is symptom relief through a collar that would be very informative. I believe they are easily available through Amazon.

 

[Bowser]

thanks i ordered the traction device but then got worried and returned it

i am worried about making things worse because i do not have the option of having surgery. also, a couple of people said it could be contraindicated after the stem cell treatment i had....

i am going to ask dr B if i could get a consult without doing this first but he is swamped now so i doubt it will work

xo

Try sending Dr. B your scans. If they show significant pathology it is possible he may allow a consult on that alone.

I sent him my scans and he replied within one hour. He said my scans aren't impressive enough on their own and I'd need to report positive result through traction to get in.

 

[Daffodil]

Try sending Dr. B your scans. If they show significant pathology it is possible he may allow a consult on that alone.

I sent him my scans and he replied within one hour. He said my scans aren't impressive enough on their own and I'd need to report positive result through traction to get in.

within an hour?? i thought people were waiting like 2 months these days! that's very lucky

i sent him my scans long ago and he wants traction...that is why i have been making these posts lol

anyway, i decided to put the idea of traction out of my head because i am pursuing stem cells (even though i have little hope in them)

 

[Bowser]

within an hour?? i thought people were waiting like 2 months these days! that's very lucky

i sent him my scans long ago and he wants traction...that is why i have been making these posts lol

anyway, i decided to put the idea of traction out of my head because i am pursuing stem cells (even though i have little hope in them)

Yeah I was surprised too. However, it wasn't a complete evaluation. It was a short email telling me whether the scan fell into his practice's parameters or not.

 

[DrDiana]

Concerns about craniocervical instability surgery in ME/CFS

CCI/AAI has little in common with ME/CFS

I have similar concerns about the possibility of unnecessary (and potentially dangerous and potentially life-limiting) surgeries in many patients. I am an EDS patient who developed CFS/ME/POTS over 12 years ago and I was told to have CCI surgery. I walked away from it when they also recommended it to our 9 year old son.

My son and I got sick after viruses, so I didn't think the problem was strictly anatomical -- I wanted to dig deeper. Our issues stemmed from high intracranial pressure that was easily controlled with Diamox (and we didn't end up needing it long-term). Mind you, my MRI looked horrible -- my neck and spine looked like it had gotten run over by a truck! In fact, it still looks that way, but I have no pain or symptoms (sometimes looking at MRI's can be misleading).

This was over 12 years ago and I've been able to keep in touch with many patients who chose to have CCI surgery. Many of those need ongoing fusions down their spines because the discs below the fusions take on more pressure. The fusions themselves can be disabling -- and most of them still feel sick.

I have no doubt that Jen is doing much better (we all celebrate that!), but I have a strong suspicion CCI wasn't the cause of CFS/ME, but a later consequence (one of the proverbial dominoes, if you will). More work is needed in her case (in most of us, actually) to determine the underlying cause of that domino cascade.

Ultimately, I walked away from many suggested surgeries: CCI, Chiari surgery, a brain shunt, and gallbladder surgery to name a few. I have been a fully recovered patient for years now and I strongly believe that avoiding these procedures worked strongly in my favor.

I know how tempting it to want an immediate fix! But because these surgeries are not reversible and are not low-risk, I think we can all benefit by taking the proverbial deep breath and staying strongly in the science.

Dr. D

 

[Daffodil]

Yeah I was surprised too. However, it wasn't a complete evaluation. It was a short email telling me whether the scan fell into his practice's parameters or not.

yea that doesnt usually happen so quickly. i think i waited 2 weeks or so and this was before the big news went public.

at least he didnt reject you outright which might mean he sees something....

 

[Bowser]

yea that doesnt usually happen so quickly. i think i waited 2 weeks or so and this was before the big news went public.

at least he didnt reject you outright which might mean he sees something....

What was this big news? Jen's remission?

 

[Daffodil]

What was this big news? Jen's remission?

ya

 

[Daffodil]

A very kind surgeon agreed to look at my images and called me today. He feels that I may not have AAI but do have mid-cervical instability. Because my symptoms do not include pain but mostly fatigue and brain fog, he did say it is possible that the frontal lobe is being affected. He says my discs are degenerated (he used the word "soft") and said that the facet joint stem cells injections I had would not help. I asked if the ligament injections might help. He said that the ligaments and muscles are involved in stability of the area so they might but he did not seem too optimistic about stem cells right now, saying that they do not know yet because large scale studies have not been done. I asked about disc replacement and he said with multiple levels, he would recommend fusion. He did seem to think I had hypermobility. When I asked what he would do if he could not afford it and he were in my position, he said, "I wish you had not asked me that.". He said there aren't many options. He was shocked that I had not done any PT and talked about a very good PT he knows who has EDS herself. I will contact her. I asked about any doctors in Asia. He said he will try to see about that and would be willing to write a letter for me if I saw him and was properly examined and diagnosed. I very much regret getting my upright MRI in Maryland because he also had problems with the images. I may have to get another one. He agrees with me about my worry that having surgery in Asia could be problemlatic in the event of revisions, etc etc. He said there are some patients who, with proper care and PT, are able to avoid adjacent joint problems after fusion. For now, I will get the PICL procedure at Regenexx which is scheduled for mid-December and I will try hard to do PT. I am not sure how to afford everything I need to do going forward (especially surgery who knows where) but I will have to just hope something changes. Thanks for reading

 

[rel8ted]

I am not sure how to afford everything I need to do going forward (especially surgery who knows where) but I will have to just hope something changes. Thanks for reading

Since you have never done PT and the surgeon seemed doubtful that stem cells will work, why not save your money from that procedure & pursue PT for the time being? It's going to take a while to see results and you are going to need PT to build stability in your neck anyway, it's not like it really is an option. Then you can take some time and decide what your full plan of action will be. Many, many people, including the surgeon you trusted enough to read your scans have told you surgery in the third world & Asia is a bad idea for all of the same reasons. Jen mentioned a Canadian neurosurgeon in one of the other groups. You might consider looking closer to home where you could be helped if something goes wrong.

 

[Daffodil]

Since you have never done PT and the surgeon seemed doubtful that stem cells will work, why not save your money from that procedure & pursue PT for the time being? It's going to take a while to see results and you are going to need PT to build stability in your neck anyway, it's not like it really is an option. Then you can take some time and decide what your full plan of action will be. Many, many people, including the surgeon you trusted enough to read your scans have told you surgery in the third world & Asia is a bad idea for all of the same reasons. Jen mentioned a Canadian neurosurgeon in one of the other groups. You might consider looking closer to home where you could be helped if something goes wrong.

that wasnt a neurosurgeon, it was a chiropractor/podiatrist.

i want to do the stem cell treatment that injects the important alar ligament. then I guess i will stop unless i feel some improvement. the neurosurgeon did say the ligaments and muscles are important for stability too. at the craniocervical junction, the ligaments are most important. even though this doctor did not think i have AAI, Gilete did think so.

i do intend on starting PT. I just need a little more energy. I might pay for a few sessions and just ask them to show me some exercises I can do myself.

I cannot totally give up on the idea of surgery in Asia at some point, even if it is a long time from now. I need to have that option in the back of my mind in order to cope with everything

 

[Sushi]

i do intend on starting PT. I just need a little more energy. I might pay for a few sessions and just ask them to show me some exercises I can do myself

Doesn’t your health insurance pay for PT?