Jeff anyone who have consulted with Dr Bolonesse ... help confused!

[hezza]

Hi @humanrising, Ms Irene had mentioned that Bolognese will send a written report following the videoconferences, just wondering did you receive one and if so, did it give you any more insight?

 

[Tella]

Any updates anyone?

 

[Anncomingtogrips]

I just had the cervical traction test with Dr. B. and am a candidate for surgery- Fusion. I'm happy to share that experience with anyone. I'll respond to the thread or to a private message.
I'm also interested in the experience anyone has had with this surgery - anything they did to prepare (PT, etc.) and what the post-surgery recovery was like. There is a long list of potential complications. I'm trying to better understand that list - along with the post-recovery process - in weighing the risks and benefits of the surgery. Feel free to share here or in a private message.
My very brief description of traction results - at 35 pounds, I had substantial relief of my major symptoms (say 85%)) and my BDI and BAI measurements changed significantly as well.

 

[Tella]

I just had the cervical traction test with Dr. B. and am a candidate for surgery- Fusion. I'm happy to share that experience with anyone. I'll respond to the thread or to a private message.
I'm also interested in the experience anyone has had with this surgery - anything they did to prepare (PT, etc.) and what the post-surgery recovery was like. There is a long list of potential complications. I'm trying to better understand that list - along with the post-recovery process - in weighing the risks and benefits of the surgery. Feel free to share here or in a private message.
My very brief description of traction results - at 35 pounds, I had substantial relief of my major symptoms (say 85%)) and my BDI and BAI measurements changed significantly as well.

Can I ask how severe are u and are the big risks worth it? I don’t think it’s the answer for most people as we can see with even those who had it. Cfs is really a nervous system dysregulation...

 

[Anncomingtogrips]

I am moderate/moderately severe. I'm on long-term disability but right now I am not bedridden. (I was several months ago.). I do experience my symptoms as a dysregulation so understand the connection to CCI. And yes, weighing the risks and benefits is exactly where I am. Right now, I think I will take six months or so with PT to further evaluate and try alternative means. I'd really like to better understand real-life experiences with the surgery - rather than just the laundry list of potential complications that I got from Dr. B. The invasive cervical traction test was surreal - having the symptoms "disappear" at a particular weight almost felt magical.

 

[Tella]

I am moderate/moderately severe. I'm on long-term disability but right now I am not bedridden. (I was several months ago.). I do experience my symptoms as a dysregulation so understand the connection to CCI. And yes, weighing the risks and benefits is exactly where I am. Right now, I think I will take six months or so with PT to further evaluate and try alternative means. I'd really like to better understand real-life experiences with the surgery - rather than just the laundry list of potential complications that I got from Dr. B. The invasive cervical traction test was surreal - having the symptoms "disappear" at a particular weight almost felt magical.

Personally I wouldn’t think going near such invasive stuff with such bad track record if u are not very very severe and even then only if this is definitely the answer (for most it’s not).
nervous system disregularion presents as cfs systems and can be healed by regulating it. U can look up dr sarno’s books. Seriously, ‘syndrome’ isn’t anything specific and isn’t a terminal illness. I’m glad u are now better. Keep it up, u can heal.

 

[kewia]

Hi @Anncomingtogrips,
any news to report?
Did you want to go for surgery?

 

[Anncomingtogrips]

I am scheduled for surgery in March. I'm continuing with PT and have added an oxaloacetate supplement (see health rising article) and an additional antiviral for EBV. The physical therapy has been very interesting as she is trained in postural restoration and scoliosis. The compression I feel in my neck is improved slightly by working on these things but I don't think it will take away the compression I feel from the CCI. I notice that my last posting was in late August. I have had a few crashes since then and can't seem to come back to the baseline I had reached in August. At this point, I expect I'll be having the surgery. Thanks for asking.

 

[kewia]

@Anncomingtogrips,
thanks for replying.

Just for personal interest, did you have symptoms of CCI like numbness, dizziness and also POTS?

 

[lenora]

Hello @Anncomingtogrips,

This wasn't directed to me but since you posted on the Forum, I thought you should know that I have done some reading where surgery is not being the only option for CCI....that wearing a collar and doing certain exercises have been used.

If you contact me privately, I can be more open. Sadly, I don't have the research articles I read just about a month ago. Yours, Lenora.

 

[kewia]

Just another question, sorry for that, what does your PT do exactly, is she/he stretching your nape, massaging your nape or some kind of gymnastics?
I'm also on PT now, and I'm interested investigating which exercises might help.