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

[Daffodil]

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

just wanted to add that people generally require multiple treatments to see results.

 

[HansG]

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

Thank you, @hezza !

I‘m not able to do so every day, but most. I just have to make sure that my heart rates stay below 120. Due to all the exercises are in a laying or sitting position it is managable.

Did you get a exercise plan from Dr. B? Would you mind to share it with us? I would be interested in wich exercises he recommends as well as frequency and duration.

 

[Daffodil]

so it looks like more people are getting better with c0-c2 fusion

 

[hezza]

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

This is part of the conservative measures, he hopes will help & avoid surgery. I do not have hopes that core strengthening & neck traction is going to reverse severe ME but I’m happy to oblige...

 

[hezza]

Thank you, @hezza !

I‘m not able to do so every day, but most. I just have to make sure that my heart rates stay below 120. Due to all the exercises are in a laying or sitting position it is managable.

Did you get a exercise plan from Dr. B? Would you mind to share it with us? I would be interested in wich exercises he recommends as well as frequency and duration.

I have not received it yet, he is sending script for urodynamic testing & PT core exercises. But I’ll be happy to share. @StarChild56 has shared hers, I’m just not sure where they are at the moment.

 

[hezza]

so it looks like more people are getting better with c0-c2 fusion

Where are you hearing about them?

 

[Daffodil]

i will pm you

 

[Daffodil]

I read this in a textbook online and thought it might be helpful to those thinking about stem cells:

"The stability of the bony articulations of the CVJ is determined by ligaments that constrain the movements of the CVJ articulations. The attachments of the ligaments at the CVJ are complex, but they can be simplified into four broad categories: the odontoid-specific ligaments, the articular ligaments, and the ligaments of the anterior and posterior columns (3). The odontoid-specific ligaments, especially the alar ligaments and transverse-atlantal ligament, are the most important for CVJ stability. Other odontoid-specific ligaments, such as the apical ligament, atlantodental ligament, and atlantoalar ligaments, perform accessory roles. The alar ligaments run laterally from the odontoid to the occipital condyle. Their function is to limit axial rotation between C2 and C0. The transverse-atlantal ligament is the horizontal portion of the cruciate ligament, which is the strongest and thickest ligament in the spine. Its biomechanical role is to limit the anterior movement of C1 on C2, preventing anterior translation and flexion. Disruption of these ligamentous structures destabilizes the CVJ."

 

[Sushi]

I have not received it yet, he is sending script for urodynamic testing & PT core exercises. But I’ll be happy to share. @StarChild56 has shared hers, I’m just not sure where they are at the moment.

I do a Pilates class once a week for core strengthening of the neck and central body. It is done with machines where the resistance level can be set and it is done lying down. The class I take is not demanding at all for a healthy person but just about right for me. I think is does help to strengthen core muscles. I am hoping to raise my PEM onset level—stronger muscles require less exertion to do the same tasks. Here’s hoping!

 

[JES]

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.

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.

 

[Daffodil]

I do a Pilates class once a week for core strengthening of the neck and central body. It is done with machines where the resistance level can be set and it is done lying down. The class I take is not demanding at all for a healthy person but just about right for me. I think is does help to strengthen core muscles. I am hoping to raise my PEM onset level—stronger muscles require less exertion to do the same tasks. Here’s hoping!

pilates is awesome. when i felt better i bought one of those machines on the shopping channel. it now serves as a clothing rack.

 

[Revel]

I also have a Pilates reformer at home @Daffodil, and loved it when I was able to use it, but lately it's been gathering dust and occasional laundry.

Just take care if you have been diagnosed with a connective tissue disorder:

https://www.livescience.com/49783-pilates-caused-brain-fluid-leak.html

 

[HansG]

@Daffodil @Revel Was that before your onset or after? Do you think pilates has worsened you?

 

[Revel]

@HansG, I had ME/CFS for over 30 years (since childhood) prior to starting Pilates. I actually purchased my reformer to help with my posture as I have quite severe scoliosis. I have found Pilates to be nothing but beneficial to my overall health.

In recent years my ME/CFS has become progressive with no remissions, and I am currently unable to exercise at all. I believe this to be quite a normal course of events for those of us who have had this illness for decades.

I don't consider my use of Pilates to have contributed to my decline at all. If anything, it kept me mobile and eased my joint pain for longer than if I hadn't participated at all. I really miss not being able to do it!

 

[Daffodil]

@Daffodil @Revel Was that before your onset or after? Do you think pilates has worsened you?

oh gosh i dare not even look at the pilates machine nowadays. in fact, i never even used it at all. i used to do pilates just before i got mono/CFS. In the years I felt better, I did it 2 or 3 times a week with a DVD at home. Then, I declined a lot and didnt do it for many years. When I started to feel better after years of antibiotics, I was so happy to be able to do a little exercise again. So I went swimming for the first time in 10 yrs. Loved it but ended up with UTI. Started pilates again, ended up with ruptured disc. And now I am pretty sick again

back in the day pilates was my fav thing...didnt feel too much like exercise, made my tummy flat....oh to have those days again lol

I dont feel like pilates ever made me worse but then i never did it until i felt i had the extra energy. it may have contributed to my lower back disc rupture but that was my own fault for jumping in quickly after years of almost no muscle movement.

 

[HansG]

@Daffodil @Revel Thank you both! I'm so sorry, that you're to severe to exercise and hope you will be able to do some pilates again, as it gave you so much pleasure.

 

[StarChild56]

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

Hello

Nope not upright. Supine with flexion/extension.

 

[ebethc]

For anyone who's had the surgery: How long do you have to wear the halo?

 

[Bowser]

Hello

Nope not upright. Supine with flexion/extension.

What exactly did you use to acheive flexion and extension positions while supine? Dr Gilete's office sent me some pictures. It seems like they use some cloth and what looked like a bundle of paper, but I'm not completely sure what it was from the picture.

 

[valentinelynx]

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

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.