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

[Daffodil]

@valentinelynx @sb4 yes...like a bunch of stuff going on in there when i move head. i just thought i was hearing it because those joints are closer to my ear and maybe those sounds are normal throughout the body....but i am not sure if thats the case or not

 

[Jyoti]

Same here.

 

[Strawberry]

@valentinelynx @sb4 yes...like a bunch of stuff going on in there when i move head. i just thought i was hearing it because those joints are closer to my ear and maybe those sounds are normal throughout the body....but i am not sure if thats the case or not

I was told by a chiropractor years ago that it is NOT normal for a neck to make noises like mine did.

Maybe we could convince doctors world wide that stethoscopes should NOT be worn as decoration only.

(ps I'm sticking my tongue out at lazy doctors...)

 

[Daffodil]

I all. I wanted to appeal to any patient of Dr. B who sees him regularly. I wanted to know if anyone out there can ask him if he still recommends the Asian docs Dr. Yong Liu or Dr. Atul Goel for people like us, who may have other complex illnesses aside from CCJ. I also wanted to know if Dr. B would be willing, once he sees the patient, to confer with the Asian docs about the patient.

I know there are many out there who want to explore the option of surgery but cannot afford the prices in the USA or Spain. I hope someone can help to perhaps give us more information about the possibility of Asia

I have emailed a few surgeons about this but I am not sure if I will get a response.

I would make an appt with Dr. B myself but I am not permitted to do that unless I try traction first as per his advice before, and I worry about doing that due to recent stem cell procedure.

@jeff_w @JenB

Thanks a lot guys

 

[Daffodil]

I know this question has been asked before, probably many times, but Dr. B recommended a traction test for me. The admin person at his office sent me a link to a device. Has anyone tried this one?

https://www.amazon.com/Duro-Med-Cer...eway&sprefix=cervical+traction,aps,141&sr=8-5

Thanks a lot

 

[JES]

I know this question has been asked before, probably many times, but Dr. B recommended a traction test for me. The admin person at his office sent me a link to a device. Has anyone tried this one?

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

Thanks a lot

This is very similar to the one I bought. It's about as good as the other ones available I reckon. Adding and removing weight is easy with the water bag and it should fit over most doors. The only thing I found a bit fiddly was the head piece, but once I worked out a good positioning with it so that it was leaning on my jaw instead of strangling my neck, I had no problems keeping it on for 15-30 minutes.

 

[Daffodil]

thanks @JES so I have been reading a bit and traction is contraindicated in AAI, ligament instability, and some other things. so I guess its only people who are definitely planning on having surgery who should do it.

I really wanted to speak to Dr. B but the office told me I have to submit a traction journal before they will give me an appointment (he has already seem my imaging).

For those of you who know him, do you think it is worthwhile to write a letter to him explaining my situation, and asking for a Skype consult anyway? Does he ever deviate from the rules?

Thank you

 

[hezza]

so I guess its only people who are definitely planning on having surgery who should do it.

I just had my videoconference w/Dr B & although he strongly suspects vertical instability he told me to do 6 mos of traction along w/core strengthening & daily use of a collar (no more than 4 hrs) to see if the neck will learn a new stable & thus avoid surgery. So I don’t think he would entirely agree w/that.

If I get worse or don’t improve then after a positive invasive traction test he would recommend surgery.

 

[Daffodil]

I just had my videoconference w/Dr B & although he strongly suspects vertical instability he told me to do 6 mos of traction along w/core strengthening & daily use of a collar (no more than 4 hrs) to see if the neck will learn a new stable & thus avoid surgery. So I don’t think he would entirely agree w/that.

If I get worse or don’t improve then after a positive invasive traction test he would recommend surgery.

woooooah no way! thanks for telling me this

the thing is though...if i do it and worsen, i cant have surgery.....so its risky for me

 

[hezza]

woooooah no way! thanks for telling me this

the thing is though...if i do it and worsen, i cant have surgery.....so its risky for me

That is tricky

 

[Daffodil]

Hi All. I emailed a few EDS - literate neurosurgeons re: asian docs. One said this:

I know Dr Atul Goel is expert in India

Don’t know the Chinese doctor

 

[HansG]

thanks @JES so I have been reading a bit and traction is contraindicated in AAI, ligament instability, and some other things.[...]

I just had my videoconference w/Dr B & although he strongly suspects vertical instability he told me to do 6 mos of traction along w/core strengthening & daily use of a collar (no more than 4 hrs) to see if the neck will learn a new stable & thus avoid surgery. So I don’t think he would entirely agree w/that.

[...]

I‘m really confused about this, as well.

I got diagnosed by Dr. G., but I dont feel severe enough to consider surgery. Thats why I have been working on core strengthening for about 6 weeks now. (1 -2 hours daily) Planning to do this for at least 6 month.

I received gently traction one time and felt better during and for the first 1 or 2 hours after. But later on I felt worse.

@hezza Maybe you could describe your traction experience? Did Dr. B. mentioned whether traction is part of the therapy or just for diagnosing?

 

[Daffodil]

I‘m really confused about this, as well.

I got diagnosed by Dr. G., but I dont feel severe enough to consider surgery. Thats why I have been working on core strengthening for about 6 weeks now. (1 -2 hours daily) Planning to do this for at least 6 month.

I received gently traction one time and felt better during and for the first 1 or 2 hours after. But later on I felt worse.

@hezza Maybe you could describe your traction experience? Did Dr. B. mentioned whether traction is part of the therapy or just for diagnosing?

have you considered stem cells?

 

[Marelica]

Hello to all,
today the report from doctor Gilete arrived.

I am diagnosticated with :
Craniocervical Instability (CCI) - Superior Odontoid Migration (SOM)
Atlantoaxial Instability (AAI)
C5-C6 & C6-C7 : cervical disc bulging

In my home country (Croatia) I have several official diagnoses:
- chronic fatigue syndrome
- impaired autonomic nervous system
- gynaecological exam: OK
- cardiological exam: OK
- immunological exam: OK
- psychological test in hospital: OK
By my neurologist, I show sign of hypermobile joints.

I am on sick leave from 03.12.2018.
MRI images were taken in Munich, I paid them 2500 EUR and in Barcelona, they had no complaints about their quality.

 

[Daffodil]

what do you guys think about starting a group for non americans who cannot pay for surgery in the west? a group to explore other options together...maybe even plan to travel together in the future for treatment? or should I do this on FB i am not sure

 

[Viktor11]

I was going to get a (supine) cervical MRI from my PCP due to worsening neck pain + migraines. I had neck issues and migraines for over 5 years at that point which started with a very bad car crash (I was rear ended when at full stop by a large vehicle going very fast). I'd had a cervical MRI a year after the crash which revealed various neck problems.

When discussing this (worsening symptoms, going to see PCP about a cervical MRI) my specialist told me to ask for the additional views - flexion and extension. He emailed me exactly what my PCP should add on to her order for a cervical MRI.

My PCP was happy to add on the views to her order. Insurance had no problem paying for it. I had no problem with the imaging center I went to understanding what was requested. So from my perspective and my PCP's - and the imagine center's reaction - it did not seem like it was anything out of the ordinary.

My specialist was the one who referred me to Dr. Bolognese and assume he asked me to get done what he understood at that time was what Dr. Bolognese would want - as he fully intended to share my MRI imaging with Dr. Bolognese for him to rule out/in CCI/AAI.

This was well over 6 months ago so things may have changed.

Hello @StarChild56 ,
When you write "insurance had no problem paying for it", was that for an upright MRI with flexion/extension? My PCP is very interested in me doing it because of my symptoms but I'm worried my insurance won't cover it.
//Anna

 

[HansG]

have you considered stem cells?

Hi @Daffodil, not really. I decided to try physiotherapy at very first. Are there any promissing experiences with stem cells?

 

[Daffodil]

Hi @Daffodil, not really. I decided to try physiotherapy at very first. Are there any promissing experiences with stem cells?

there are some but those patients did not have a me/cfs diagnosis. they had other neurological problems due to their cervical instability. there have been only a few me/cfs patients who have done the treatment on their neck but it is too early to tell if it will help. there may be many more but no one i can find online.

i am not sure why some develop cfs and some do not. perhaps their brain stem is compressed in such a way so as not to affect their digestive processes? this is of course assuming that CCI / AAI is the cause of CFS which is a huge assumption

 

[hezza]

I‘m really confused about this, as well.

I got diagnosed by Dr. G., but I dont feel severe enough to consider surgery. Thats why I have been working on core strengthening for about 6 weeks now. (1 -2 hours daily) Planning to do this for at least 6 month.

I received gently traction one time and felt better during and for the first 1 or 2 hours after. But later on I felt worse.

@hezza Maybe you could describe your traction experience? Did Dr. B. mentioned whether traction is part of the therapy or just for diagnosing?

Hi, that’s awesome you can core strengthen 1-2 hrs a day!! Initially it def seemed Dr B was using traction as a diagnostic screening for patients: positive reaction=a consult w him. But this time for me, it is part of my prescribed 6 month conservative treatment plan. Don’t know if he prescribes this for everyone.

My traction experience was this: performed manually by a PT, while having traction the first day if felt really nice during but my muscles were contracting badly & would not relax, no noticeable difference in the hours following. day 2 we had a better session, more relaxed. Keep in mind I came into this appt crashed bc of having 2 pt appts back to back days.

During traction: headache improved, burning spinal pain improved, the sensation that my head was squishing my spine all the way down felt improved. In the hours following traction: the earlier improvements sustained plus POTS improved, activity ticked up without payback, brain fog lifted (I was paying bills online while my husband had the tv on- I can never do that!!) slept better & pooped better. The pt showed my husband how to do the traction so we have really put it to the test & we keep getting results, not always that dramatic, but always results.

Dr B at some point found out that we were tractioning like every other day continuously & phoned to say stop. We stopped, I declined. But then after our videoconsult he reintroduced it as part of the 6 month treatment plan, so we have just been back at it for a few sessions, but they have been so nice

 

[Daffodil]

Hi, that’s awesome you can core strengthen 1-2 hrs a day!! Initially it def seemed Dr B was using traction as a diagnostic screening for patients: positive reaction=a consult w him. But this time for me, it is part of my prescribed 6 month conservative treatment plan. Don’t know if he prescribes this for everyone.

My traction experience was this: performed manually by a PT, while having traction the first day if felt really nice during but my muscles were contracting badly & would not relax, no noticeable difference in the hours following. day 2 we had a better session, more relaxed. Keep in mind I came into this appt crashed bc of having 2 pt appts back to back days.

During traction: headache improved, burning spinal pain improved, the sensation that my head was squishing my spine all the way down felt improved. In the hours following traction: the earlier improvements sustained plus POTS improved, activity ticked up without payback, brain fog lifted (I was paying bills online while my husband had the tv on- I can never do that!!) slept better & pooped better. The pt showed my husband how to do the traction so we have really put it to the test & we keep getting results, not always that dramatic, but always results.

Dr B at some point found out that we were tractioning like every other day continuously & phoned to say stop. We stopped, I declined. But then after our videoconsult he reintroduced it as part of the 6 month treatment plan, so we have just been back at it for a few sessions, but they have been so nice

wait so is this a treatment he wants you to do instead of surgery or before surgery?