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

SWAlexander

Senior Member
Messages
1,898
Hello lenora
For right now I have only one more appointment with a dermatologist and this is enough fighting for now. I try to keep the brain inflammation down as much as I can, so no fluid will come out of my ear. Later, when the daily Heparin shots work for the thrombosis (Antiphospholipid-Syndrom), I will continue but not without extensive research finding the right doctor for the CSF leak first.
Because of Covid, patients cannot bring another person. So much for having a witness.
Thanks for your comments.
 
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Messages
24
So I’m curious how many people diagnosed with cci have gone through to the surgery and seen it help (or not help) their mcas. I think Jeff and maybe Jen indicated it helped their mcas. I’m working with Dr B’s office and am trying to figure out if it’s a good idea for me to get invasive traction snd then maybe surgery. I have a lots of worries about my Lyme since I relapse super fast (48 hours).
 

SWAlexander

Senior Member
Messages
1,898

SWAlexander

Senior Member
Messages
1,898
At the dermatologist:
I was treated with much respect, and my medical history was reviewed and discussed in detail. After he asks me to show my legs. Oh he said, that is really bad. https://forums.phoenixrising.me/threads/question-about-petechien.86983/
He looked at also the inside of my ears and asked if clear fluid is draining. I answered, yes sometimes.
Your body is full of inflammation and he continued by asking, would you trust me? Yes, I answered. He prescribed "metex PEN 17.5" once a week and 24 hours later 1 Folate AbZ 5 mg.
He explained why. He was involved in inflammation research for 3 years San Diego CA and at the end, the only way to eliminate such massive inflammation is with metex PEN 17.5. This procedure will take 6 months and I have to see him every month. He suspects brain inflammation but now (COVID) is not a good time to have a spinal tap.
In addition, he confirmed that the crystals I mentioned (https://forums.phoenixrising.me/threads/question-about-petechien.86983/) are micro-clots pushed out through the skin.
 
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I wanted to share the latest chapter in my health journey in case it is helpful to others. I had a craniocervical fusion with Dr. B. in March to address cranial settling – a form of CCI. It has alleviated my symptoms of fatigue, brainfog, dizziness, unrefreshing sleep, PEM and others. I believe Jeff Wood provides the best explanation for how relieving brainstem compression affects symptoms related to CFS/ME (https://www.mechanicalbasis.org/theory) . In my situation, I have a very curvy spine for which my body has tried to compensate and I expect that the relationship of my neck to my head is just one of the manifestations.
I will be waiting a few months before having bloodwork done to see what has happened with viral loads, etc. And the recovery journey is a bit complicated with dealing with healing from the major surgery, the many months of sedentary life, and the underlying and continuing spinal issues.
I am happy to share more about the surgery experience with anyone who is considering it. I realize it isn’t an option for some/many: I also want to do my part in raising awareness of it as a possibility. I first learned of this option through Phoenix Rising. I am very grateful for that.
 

kelly8

Senior Member
Messages
191
@Anncomingtogrips : I'm so glad to hear you are better. I had this surgery last September and have improved greatly. I'm waiting to really talk about it until after its been a year because the recovery is so challenging and I'm still trying to figure out my new baseline. The fatigue is gone though and knock on wood it stays that way. Some things have come back but right now not that one. I'm having issues swallowing and looking forward to Dr. B's thoughts on this. I'm also having neuropathy issues with my feet as I've been trying to get more active again. But I'm so grateful for the improvements I've had. I'm glad you've seen the same!
 

lenora

Senior Member
Messages
4,913
Many years ago it was found that I had congenital birth defects (wore casts and braces for most of my childhood). I'm now 75 yrs. old, so you can imagine that weren't the lightweight models of today.

I had surgery for another illness, Syringomyelia (cysts form inside the spinal cord) and contracted two separate viruses during my healing time. Miserable, extremely painful years....but I was young, in good shape and had a wonderful husband and two teenage daughters. So, in spite of my frozen body, I had to return.

This was prior to or just at the beginning of the Lake Tahoe outbreak. Later a new neurosurgeon discovered that I had ACM (Arnold Chiari Malformation)....well, my neurologist had known about it, had actually diagnosed it, but at that time nothing could be done. Besides, who knew that it caused trouble in this way? MRI's were an invaluable contribution to the diagnosis of our illnesses, but I strongly feel that each Dr. we encounter should do his/her own reading....it's often missed by radiologists, although things are better known about today.

I had ACM Repair surgery (which controlled the SM) probably 30 or more years ago. It was an easy surgery compared to the first....uncomfortable and painful in the beginning, but healed quickly and I did improve significantly. Never perfect, but I was able to travel and we lead ordinary lives.

Doctors who have worked in Third World Country (often volunteered) are a great source of this knowledge...the conditions are more prevalent in these places and many are caused by a shortage of folic acid while the embryo/fetus is developing. Birth difficulties could also add another reason for such an injury.

I had seen my symptoms improve, get worse and always, always I have pain. I cannot use the items (although lyrica helps immensely) presently available for control....but most of you will benefit from implants alone (right now they only last a year or less, my cord forms a lot of scar tissue, so it's out until a longer time date has been found....and it will).

You'll do well. I've fought many battles during my recovery, some genetic and others simply old-age related. Osteoporosis has been the worst, so please watch out for that carefully. I had full blown osteoporosis from the time it was found in my early 40's. Diet alone didn't help, nor have the many vitamins and minerals....I'm not saying they didn't provide some protection, but they certainly didn't prevent it.

@SWAlexander.....I'm glad that you've found a helpful dermatologist. Sometimes we just have to keep looking, but a helpful doctor (even if they can't cure us) is worth his/her weight in gold. Good luck.

People seriously underestimate the dangers of things like out of the ordinary roller coaster rides, too much weight lifting, hormone problems, accidents (even if long ago) and yes, in many cases, viruses. I feel we'll never have just one answer, but many which may not cure the illness(es) but will aid in the control of symptoms. These are closer than ever. I believe that with all of my heart. Good luck with your recovery. Yours, Lenora.
 

Bowser

Senior Member
Messages
141
I wanted to share the latest chapter in my health journey in case it is helpful to others. I had a craniocervical fusion with Dr. B. in March to address cranial settling – a form of CCI. It has alleviated my symptoms of fatigue, brainfog, dizziness, unrefreshing sleep, PEM and others. I believe Jeff Wood provides the best explanation for how relieving brainstem compression affects symptoms related to CFS/ME (https://www.mechanicalbasis.org/theory) . In my situation, I have a very curvy spine for which my body has tried to compensate and I expect that the relationship of my neck to my head is just one of the manifestations.
I will be waiting a few months before having bloodwork done to see what has happened with viral loads, etc. And the recovery journey is a bit complicated with dealing with healing from the major surgery, the many months of sedentary life, and the underlying and continuing spinal issues.
I am happy to share more about the surgery experience with anyone who is considering it. I realize it isn’t an option for some/many: I also want to do my part in raising awareness of it as a possibility. I first learned of this option through Phoenix Rising. I am very grateful for that.
Congrats on getting better! I have a couple of questions:

1) How severe was your fatigue before surgery?

2) Before surgery, did you have any positional changes in symptoms, i.e. did you get worse when flexing, extending or rotating your head?

3) Did you experience temporary improvement with traction? Or a cervical collar?

4) Did you have tethered cord?
 

Bowser

Senior Member
Messages
141
It is encouraging to read these success stories from @Anncomingtogrips and @kelly8 where dramatic improvement (especially in the main symptoms of chronic fatigue and brain fog) are reported.

Unfortunately it is my subjective feeling that the majority of post-fusion stories (on the FB group) are much more lukewarm. These post-fusion patients on the FB group seem to report overall improvement, especially in ancillary symptoms, but rarely do I see optimistic and dramatic improvement stories in the core symptoms of fatigue and brain fog, such as one might expect from major surgery.

So it is my subjective feeling that CCI in general had been overdiagnosed in the ME/CFS population but I would love to be proven wrong.

One thing I read was that patients *must* report symptoms changes on head movement, i.e. flexion, extension or rotation. If no major symptoms changes are reported on head movement, then it is unlikely they have CCI.
 

lenora

Senior Member
Messages
4,913
Many diagnoses have come in and gone out of vogue since I started this journey. It's possible that CCI may be another one....I understand that some doctors are recommending exercises for the symptoms. MRI's have resulted in a diagnosis to be made in the first instance.

As I keep saying, we're all guinea pigs, both doctors and their patients. We can only expect change as the future years come. This is good....and is how medicine advances. Yours, Lenora.
 
Messages
8
Location
Australia
has anyone ever been diagnosed by doing a supine MRI with flexion/extension? I've had to settle for that because the closest upright MRI is two hours away and I can't travel more than 30 minutes. I'm doing lumbar, thoracic and cervical on the weekend (not just for this but to rule out some other things as well). It's tough because this is something that I really want to investigate but I can't travel that far without risking making myself worse for months, or even permanently.
 
Messages
53
Congrats on getting better! I have a couple of questions:

1) How severe was your fatigue before surgery?

2) Before surgery, did you have any positional changes in symptoms, i.e. did you get worse when flexing, extending or rotating your head?

3) Did you experience temporary improvement with traction? Or a cervical collar?

4) Did you have tethered cord?
Hey - Sorry for the delayed response. I
1. Fatigue - was moderate to severe - I was on long-term disability and had significantly limited my interactions with people. Due also to orthostatic intolerance, I spent a lot of time in my daybed.
2. Yes - I had cranial settling and had rotational instability as well .
3. yes - I did the cervical traction test as required by Dr. B. and I felt much better whenever my head was extended.
4. I don't think I have tethered cord. I haven't had the genetics test but I don't have the hypermobility or some of the other key traits.
Hope that helps.
A.
 
Messages
53
@Anncomingtogrips : I'm so glad to hear you are better. I had this surgery last September and have improved greatly. I'm waiting to really talk about it until after its been a year because the recovery is so challenging and I'm still trying to figure out my new baseline. The fatigue is gone though and knock on wood it stays that way. Some things have come back but right now not that one. I'm having issues swallowing and looking forward to Dr. B's thoughts on this. I'm also having neuropathy issues with my feet as I've been trying to get more active again. But I'm so grateful for the improvements I've had. I'm glad you've seen the same!
I've also had problems with swallowing. I think I still have swelling in my throat and jaw tightness that might be contributing - I don't know if the position of my neck has made it more difficult.
Glad you have gotten relief from symptoms as well!
 

kewia

Senior Member
Messages
233
Yes - I was seeing an infectious disease specialist and we were trying different antivirals (Epstein Barr and Herpes VI) and dosage amounts. It did not seem to make a difference for me.

Many thanks for your replies.
1.) Did you also get tested for viral titers?
1.a.) If yes, did they decrease during antiviral therapy or didn't they change at all?
2.) How long did you do anti-viral therapy?

Keep on improving.
Best wishes,

Kewia.
 

lenora

Senior Member
Messages
4,913
I've also had problems with swallowing. I think I still have swelling in my throat and jaw tightness that might be contributing - I don't know if the position of my neck has made it more difficult.
Glad you have gotten relief from symptoms as well!

Hello Everyone....I'm an older sufferer and had surgery for other neurologist illnesses Syringomyelia and Arnold-Chiari Syndrome....perhaps today it would be CCI, I don't know.

I will tell you that I had severe problems after surgery and I think muscle tightening was the main reason. I did have specialized myofascial therapy and it helped things return to normal....thankfully. It can be a frightening feeling for sure.

I see an Osteopath every so often now....she does acupressure and it keeps me very gently "tuned up." This is many years after those surgeries though.

I have many genetic problems, I won't go into them, but I do want to warn you about osteoporosis. I was on Fosamax since it came out....probably 25-30 yrs. ago b/c I already had severe bone loss at that time....and I was young.

I've had many smaller fractures over the years, but in Jan. I fractured my pelvis in 5 different places, and re-fractured a vertebra. This has been a long, for the most part bedridden recovery, and my big worry is that my hip will go. I was just fortunate that there were fractures all around it.

So read what you can about osteoporosis, ideas are all over the place. My diet is good, I've always been aware and take vitamins and supplements and still this happened. Neuropathy doesn't help, so please be careful. Bones are rather precious parts and we often take them for granted until we're old and little can be done. I wish both of you well as you recover from surgery. Be patient. Yours, Lenora.
 

Replenished

Senior Member
Messages
247
Rather than starting a new thread, I thought I'd ask here. Are there any doctors in the UK worth contacting about possible craniocervical instability or similar conditions? It's yet another thing I consider as possibly causing my symptoms, since my symptoms developed soon after developing throat/neck swallowing issues some years ago.