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

[frozenborderline]

@rel8ted but jeff had cervical fusion. there are a million doctors who do cervical fusion. I am asking why we need doctors who specialize in chiari malformation? that's the part I don't understand. I mean....I thought all spine surgeons would be able to handle things in the brain stem area...that's what they do...? what I mean is..why not a very good surgeon who does a lot of cervical procedures as opposed to the 3 chiari docs....

keep in mind this is not something I have spent any time researching...I have spent the last 26 yrs thinking it was a virus and then lyme

@debored13 I am wondering why I got the MRI because there is zero chance I can pay for this and from what I hear, no one ever gets it covered in Canada

If you have the money to pay full price for one of these cheaper surgeons you may have the money to pay for insurance that would cover the surgery.

I’m not saying you do have this money. But most people aren’t paying full for This surgery.

I’m sorry to keep answering the same thing but I don’t think anyone will have a different answer. You don’t want discount neurosurgery. Nobody is going to tell you it’s safe and good to choose a surgeon for this based on low price. You know how people say “oh it isn’t brain surgery” about something that’s pretty simple and anyone can do? Well this kinda IS brain surgery so ...

 

[frozenborderline]

You don’t want Dr Nick Riviera from the Simpsons doing your neurosurgery! That’s what discount surgery is like.

 

[jeff_w]

Hi @Daffodil

there are a million doctors who do cervical fusion.

No. Not craniocervical.

There are many neurosurgeons who will treat lower cervical instability, further from the brainstem, with a fusion. Lower cervical fusions are standard practice for them. But they do not evaluate for or treat instability of the skull to C2 area, which is the most complex part of the entire spine. And that is the crux of the entire problem.

I am asking why we need doctors who specialize in chiari malformation?

We don't.

The neurosurgeons need to specialize in craniocervical instability (CCI). It just so happens that all of the neurosurgeons who do specialize in CCI are also Chiari-literate.

(Interestingly, the reverse is not the case. Not all Chiari neurosurgeons are CCI-literate at this point in medical history.)

that's the part I don't understand. I mean....I thought all spine surgeons would be able to handle things in the brain stem area...that's what they do...?

Well, no. That's not the case.

Spine surgeons come in two forms: Orthopedic surgeons and neurosurgeons. For this particular problem, you would need a specialist neurosurgeon.

keep in mind this is not something I have spent any time researching...

Right, and that is an issue.

I would encourage you to start researching. You clearly have a lot of curiosity! I'm the same way, as are so many of us on here. The more time we spend researching, the more knowledge we will have to work with as we form our own conclusions.

I am wondering why you had fusion and not disc replacement...

I had a skull to C2 fusion. There are no discs in those areas. Why would a disc replacement be considered?

1. Skull to C1 has no disc.
2. C1 to C2 has no disc.

I have spent the last 26 yrs thinking it was a virus and then lyme

I know. The infectious paradigm has existed for decades. It has not resulted in widespread significant solutions.

It can take time, courage, and research to break away from old paradigms. Good luck with this!

 

[Daffodil]

Hi @Daffodil



No. Not craniocervical.

There are many neurosurgeons who will treat lower cervical instability, further from the brainstem, with a fusion. Lower cervical fusions are standard practice for them. But they do not evaluate for or treat instability of the skull to C2 area, which is the most complex part of the entire spine. And that is the crux of the entire problem.



We don't.

The neurosurgeons need to specialize in craniocervical instability (CCI). It just so happens that all of the neurosurgeons who do specialize in CCI are also Chiari-literate.

(Interestingly, the reverse is not the case. Not all Chiari neurosurgeons are CCI-literate at this point in medical history.)



Well, no. That's not the case.

Spine surgeons come in two forms: Orthopedic surgeons and neurosurgeons. For this particular problem, you would need a specialist neurosurgeon.



Right, and that is an issue.

I would encourage you to start researching. You clearly have a lot of curiosity! I'm the same way, as are so many of us on here. The more time we spend researching, the more knowledge we will have to work with as we form our own conclusions.



I had a skull to C2 fusion. There are no discs in those areas. Why would a disc replacement be considered?

1. Skull to C1 has no disc.
2. C1 to C2 has no disc.



I know. The infectious paradigm has existed for decades. It has not resulted in widespread significant solutions.

It can take time, courage, and research to break away from old paradigms. Good luck with this!

thank you SO much for this info. as always, you are a wealth of new info for me.

 

[Daffodil]

You don’t want Dr Nick Riviera from the Simpsons doing your neurosurgery! That’s what discount surgery is like.

unfortunately, i cannot pay for insurance to cover the surgery because i am in canada and we have socialized medicine. i am in ontario and the province would NEVER pay for it. basically the only time anyone has gotten ontario to pay for anything is through massive litigation.

i would need to marry someone american. i do have an ex in fla...but he is in prison so i am not sure that would work

 

[Daffodil]

check out indian docs doing surgery in this region:

http://zeenews.india.com/health/chi...unction-cured-through-complex-surgery-2000733

this doc looks good. very businesslike lol

https://www.primomedico.com/en/doctor/prof-bertalanffy-neurosurgery-germany-hanover/

eh perhaps i should wait until i get a Dx and then worry about this

 

[StarChild56]

@debored13 - in regards to manual cervical traction, I just wanted to share my experience.
1) My specialist is the doctor that showed Dr. Bolognese my MRI and then I was dxd with CCI/AAI (and probable CSF leaks which were highly indicated prior to even going down the whole CCI route)
2) My specialist ordered my PT, and he would not let me see any PT until he personally spoke with the PT at length to let her know exactly what she should do - and nothing else.
3) I could not imagine going to PT 2x a week - even though someone else would drive me and at first, pushed my wheelchair (but I spend most of my time reclining fully in a recliner or laying in bed).
4) However, the PT has helped me enough that I actually can make the PT appointments 2x a week (it is hard on me, and I have some PEM but the benefits far outweigh that).

I realize that may not be your experience, and that you may not have someone that can drive you, push your wheelchair, etc. I have however, improved enough that I now use my walker (which is hard on me, it is not easy but it was impossible before) - it is a short distance from the handicapped parking right in front of the PT clinic and into the clinic, down to the treatment room. But that is a HUGE deal for me. I've been in a wheelchair any time I leave the house for 2 years now.

My PT was on vacation during the holidays and I didn't see her for 3 weeks and I definitely noticed the worsening of some symptoms.

Overall, the PT has made a huge difference for me (but not enough to not want surgery). My PT said that according to her conversation with my specialist, and I think I got the same message from him, my positive response to the PT indicates a positive response to the surgery.

 

[frozenborderline]

Hi @Daffodil




I know. The infectious paradigm has existed for decades. It has not resulted in widespread significant solutions.

It can take time, courage, and research to break away from old paradigms. Good luck with this!

I almost agree with this but I’d add the caveat that the infectious paradigm alone doesn’t explain ME or yield results. But infections probably have a role in a mechanical paradigm. Also I think it’s interesting to , in the future , connect the mechanical to the molecular—they are different scales and zooming in on molecular may have made people myopic and overlook cervical issues, but then zooming back in on the molecular level once we know this may yield non-surgical therapies.

 

[Daffodil]

@debored13 - in regards to manual cervical traction, I just wanted to share my experience.
1) My specialist is the doctor that showed Dr. Bolognese my MRI and then I was dxd with CCI/AAI (and probable CSF leaks which were highly indicated prior to even going down the whole CCI route)
2) My specialist ordered my PT, and he would not let me see any PT until he personally spoke with the PT at length to let her know exactly what she should do - and nothing else.
3) I could not imagine going to PT 2x a week - even though someone else would drive me and at first, pushed my wheelchair (but I spend most of my time reclining fully in a recliner or laying in bed).
4) However, the PT has helped me enough that I actually can make the PT appointments 2x a week (it is hard on me, and I have some PEM but the benefits far outweigh that).

I realize that may not be your experience, and that you may not have someone that can drive you, push your wheelchair, etc. I have however, improved enough that I now use my walker (which is hard on me, it is not easy but it was impossible before) - it is a short distance from the handicapped parking right in front of the PT clinic and into the clinic, down to the treatment room. But that is a HUGE deal for me. I've been in a wheelchair any time I leave the house for 2 years now.

My PT was on vacation during the holidays and I didn't see her for 3 weeks and I definitely noticed the worsening of some symptoms.

Overall, the PT has made a huge difference for me (but not enough to not want surgery). My PT said that according to her conversation with my specialist, and I think I got the same message from him, my positive response to the PT indicates a positive response to the surgery.

wow. may i ask what your CFS symptoms are? the most troubling ones too?

sorry my AT key is not working so i keep replying to people with their entire posts

 

[Daffodil]

do you guys know if one can ask a neuro to let you use a halo for a day or 2 to see if you feel better with it? i imagine it has to be assembled by a qualified professional

 

[frozenborderline]

unfortunately, i cannot pay for insurance to cover the surgery because i am in canada and we have socialized medicine. i am in ontario and the province would NEVER pay for it. basically the only time anyone has gotten ontario to pay for anything is through massive litigation.

i would need to marry someone american. i do have an ex in fla...but he is in prison so i am not sure that would work

I’m sorry that I don’t understand how to help you with this problem ( the legality and technicality of getting private insurance for an intntl surgery). But I can guarantee that your time and money is better spent either looking up non surgical therapies or getting tested for this first than it is spent trying to find discount neurosurgeons that may maul you. Surgery is already something to not rush into with this, doubly so surgery by a non expert

Watch some of the Simpsons episodes with dr nick riviera

 

[frozenborderline]

do you guys know if one can ask a neuro to let you use a halo for a day or 2 to see if you feel better with it? i imagine it has to be assembled by a qualified professional

There are probably some quack doctors that would put a halo on you for cash. It’s probably not common request though lol.

 

[frozenborderline]

@debored13 - in regards to manual cervical traction, I just wanted to share my experience.
1) My specialist is the doctor that showed Dr. Bolognese my MRI and then I was dxd with CCI/AAI (and probable CSF leaks which were highly indicated prior to even going down the whole CCI route)
2) My specialist ordered my PT, and he would not let me see any PT until he personally spoke with the PT at length to let her know exactly what she should do - and nothing else.
3) I could not imagine going to PT 2x a week - even though someone else would drive me and at first, pushed my wheelchair (but I spend most of my time reclining fully in a recliner or laying in bed).
4) However, the PT has helped me enough that I actually can make the PT appointments 2x a week (it is hard on me, and I have some PEM but the benefits far outweigh that).

I realize that may not be your experience, and that you may not have someone that can drive you, push your wheelchair, etc. I have however, improved enough that I now use my walker (which is hard on me, it is not easy but it was impossible before) - it is a short distance from the handicapped parking right in front of the PT clinic and into the clinic, down to the treatment room. But that is a HUGE deal for me. I've been in a wheelchair any time I leave the house for 2 years now.

My PT was on vacation during the holidays and I didn't see her for 3 weeks and I definitely noticed the worsening of some symptoms.

Overall, the PT has made a huge difference for me (but not enough to not want surgery). My PT said that according to her conversation with my specialist, and I think I got the same message from him, my positive response to the PT indicates a positive response to the surgery.

May I ask who your specialist is ? And whether you did just cervical traction or exercise besides that

 

[Daffodil]

isnt this interesting? the same infections that people talk about in CFS (HSV, CMV, EBV, Parvo) are listed here as having a connection to degeneration of intervertebral discs...

https://online.boneandjoint.org.uk/doi/full/10.1302/0301-620x.93b9.27002

 

[frozenborderline]

isnt this interesting? the same infections that people talk about in CFS (HSV, CMV, EBV, Parvo) are listed here as having a connection to degeneration of intervertebral discs...

https://online.boneandjoint.org.uk/doi/full/10.1302/0301-620x.93b9.27002

it is interesting , but the more important relationship is those infections and degeneration of collagen/ligaments. As Jeff said there’s no discs btwn the first two vertebrae , it’s a ligament problem. This connection has been discussed

 

[Daffodil]

May I ask who your specialist is ? And whether you did just cervical traction or exercise besides that

i think it was kaufman

 

[StarChild56]

I am very exhausted and brain foggy but will try to give you a good list - but also, I have many issues besides CFS so that plays a part in this too -

Extreme, unrelenting fatigue but also malaise with the fatigue
I mostly have to lay in bed or in my recliner - like most of every single day
Horrific leg aches
Mild sore throat every day
Joint pain/muscle pain (but can also be due to SS and severe arthritis in neck and low back)

Additionally I have severe POTS and MCAS which have a whole host of sx, POTS affecting me by my heart rate going so high when not laying down I am instantly out of breath when I stand (though it can also be MCAS, or babesia and I have asthma) - and get very faint, dizzy, feet feel as though they are made of lead, and also my lower arms/hands
(my POTS has improved just enough with using the neck collar when upright and I believe the PT that I don't feel like I am about to pass out whenever upright, small but HUGE in a way)

I have babesia which also fatigues you, and can cause my air hunger (which is unrelenting)

I have SS, so that also causes fatigue - and joint pain

I have adrenal insufficiency, which I take Cortef for 3x a day (which can cause fatigue and other issues)

I have moderately severe asthma and severe environmental allergies and MCAS which has made them all go wild although lately my asthma is not super bad other than air hunger

My neck is severely damaged. My PCP said she'd never seen anyone with cervical MRI as bad as mine (in her decades of experience with lots of patients with neck problems) - I have severe herniations at several levels that are actually indenting into the thecal sac (the dura - it is pushing way into it) - and some stenosis (foaminal) - and congential narrowing - a lot of bone spurs, severe arthritis, several other discs are herniated in what is called broad and central (I forget why this makes them especially bad, but partly how large and how much they push into the dura). And many other things I can't remember.

I was having severe migraines averaging close to 30 days of the month, which meant me taking dangerous amounts of medication and still barely getting relief. I've had migraines for about 6 years but they've worsened a lot and especially this last 18 months. I also have severe neck pain along with the migraine as well as tinnitus (pulsatile). Since having PT it has cut it down more than half that...I have to count but I am thinking I am down to like 10 a month. And they are less severe; they don't go on for 8 days straight (which used to happen) and I get better pain relief - much better - than before PT.

My neck pain is much better (it was severe, and constant) - still bad, but noticeable difference - and my shoulder and arm pain is also much better.

The constant, heavy, grinding, pushing feeling like the base of my skull where it meets the top of my neck is lessened as is that headache I'd get back there basically all the time, sometimes severe other times mild - moderate but always there.

I have other symptoms and medical problems but I think I've highlighted what is relevant here.

ETA - fixed word that made no sense

ETA - Oh, I have EDS so that is pertinent here.

ETA: BRAIN FOG - BRAIN CEMENT - important sx

ETA: Arm weakness, lactic acid burning feeling like I've lifted too many weights - can't hold my arms up to put hair in bun or ponytail lots of times, or brushing my hair a few times have to stop

 

[jeff_w]

I almost agree with this but I’d add the caveat that the infectious paradigm alone doesn’t explain ME or yield results. But infections probably have a role in a mechanical paradigm. Also I think it’s interesting to , in the future , connect the mechanical to the molecular—they are different scales and zooming in on molecular may have made people myopic and overlook cervical issues, but then zooming back in on the molecular level once we know this may yield non-surgical therapies.

Agreed.

 

[StarChild56]

May I ask who your specialist is ? And whether you did just cervical traction or exercise besides that

Yes, no problem.
Dr. Kaufman

NO exercises, no massage - no heat, no nothing nothing nothing except her doing the manual traction and a very basic small "exercise" - gently pulling my scapula down and toward my spine, while sitting up and arms parallel to the floor. Just hold 5 seconds. This is to help correct my posture and give me the structural strength/posture so my surgery can have a better chance of being successful. Oh, I also do something called "braces" which is just tightening my TVA muscles - lying, sitting, at different times of the day. But they are not really "exercises". If that makes sense.

I do however live on my FIR heating pads on my neck, back of head, shoulders - low back, mid back.

I was prescribed home cervical traction, and given 2 choices for the units - I loved it at first but I had a bad reaction a while back and have not done it since. I need to talk to my doctor about it.

ETA: to clarify - I do the scapula squeezes myself, not the PT in case it was confusing.

 

[frozenborderline]

One possible supplement that might help strengthen the ligaments in cases of CCI/AAI is BPC 157, which is a injectable peptide sold on body-building websites. I've tried it briefly.

Some info:


Other supplements that promote or are needed to build tendons and ligaments include: L-proline, xylitol, vitamin C, copper, silica, Q10, gotu kola (though ME/CFS patients often have issues with this herb).

https://www.reddit.com/r/ehlersdanlos/comments/6gd75f/bpc_157/?st=JR5UWRK7&sh=ea9862a7

https://www.reddit.com/r/ehlersdanlos/comments/6v5vp6/bpc_157_update/?st=JR5V3L5P&sh=0c2e010e

https://www.reddit.com/r/ehlersdanl...regimen_for_progress/?st=JR5V4S90&sh=fb0db097