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

[rel8ted]

Apparently, even just mid-cervical instability can cause these symptoms.

Yes!
I had spinal cord compression in my C-spine due to instability at these levels. It was very, very obviously in the flexion and extension views. I am a few weeks out from ACDF. Realistically, I felt like we needed to stop the damage bc my symptoms were progressing by the month & I was deteriorating. It is too soon for me to comment much on recovery, but I do feel like my sleep has improved a bit.

My surgeon was not surprised by the many dxs I have been given nor the amount of specialists that failed to see this as a possibility. I left his office with the feeling that there may be more in this group that have Cervial Myelopathy. I do have hEDS.

 

[Daffodil]

Yes!
I had spinal cord compression in my C-spine due to instability at these levels. It was very, very obviously in the flexion and extension views. I am a few weeks out from ACDF. Realistically, I felt like we needed to stop the damage bc my symptoms were progressing by the month & I was deteriorating. It is too soon for me to comment much on recovery, but I do feel like my sleep has improved a bit.

My surgeon was not surprised by the many dxs I have been given nor the amount of specialists that failed to see this as a possibility. I left his office with the feeling that there may be more in this group that have Cervial Myelopathy. I do have hEDS.

WOW. may i ask if you used one of the specialists that are commonly recommended on these boards?

 

[rel8ted]

WOW. may i ask if you used one of the specialists that are commonly recommended on these boards?

I did but could have done it locally if I did not have hEDS & was suspecting CCI.

 

[Daffodil]

I did but could have done it locally if I did not have hEDS & was suspecting CCI.

I did but could have done it locally if I did not have hEDS & was suspecting CCI.

may i ask if you got multiple opinions regarding CCI?

did you ever get a DMX?

this is very exciting indeed. cant wait to see what the next few months brings!

 

[Bowser]

@Daffodil I have got an MRV today and plan to get DMX next week.

Do you think DMX is only for assessing subaxial instability or can it help confirm CCI?

Dr. Gilete diagnosed me as having "possible" CCI, and that there were no clear signs of subaxial instability. I am hoping the DMX can help confirm the diagnosis. However, the email mentions that DMX is mainly for assessing subaxial instability.

 

[Daffodil]

@Bowser wow what were the results of the MRV? i cant find a place to do an MRV in ontario canada at all, which is strange. i must be doing something wrong

re: the DMX, i am sure it sheds light on everything going on in the area even though it might be mainly to confirm AAI.

I cannot remember..did you have an upright MRI?

 

[Bowser]

@Bowser wow what were the results of the MRV? i cant find a place to do an MRV in ontario canada at all, which is strange. i must be doing something wrong

re: the DMX, i am sure it sheds light on everything going on in the area even though it might be mainly to confirm AAI.

I cannot remember..did you have an upright MRI?

I haven't got the results yet. In fact the radiologist called me back to the center today to redo some parts of the scan at no additional cost because he wasn't satisfied with the results. He has been really helpful. I'll get the results by tomorrow.

The MRV was/will be done in the same MRI machine that my supine MRI was done. I had a supine MRI.

 

[MS49]

Hi guys,

This is my first post and id like to thank everybody here for sharing they're experiences and understandings. Its been so helpful for me as I plan my next steps..

I have been reading this forum for the last few days. My foggy and pressured head make it hard to assimilate and follow.

I have been diagnosed with CFS/Lyme disease, viruses, retroviruses and heavy metals. I have come a long way the last 8 years but still suffer from severe head/ANS type symptoms.

I recently had a brain MRI and my brainstem, thalamus and cerebellum are severely swollen. In the 99th percentile. I also just had another ultrasound on my neck and still have an obstruction of brain flow.

My doctor suspects Chiari and potentially some of the other conditions associated.

I am in Australia and there isn't a lot happening down here in regards to all of this and I am wondering if I could get some help..

I have been trying but i am struggling to put together the list of Scans and tests I should be doing. I am booked in for a standing MRI in a few weeks hopefully with flexion and extension. I don't want to miss anything as can't really afford to go back for seconds

Any help with the appropriate tests for these conditions would be so appreciated:
- Syringomyelia
- Tethered cord
- CCI
- AAI
- Basilar Invagination
- Ventral Brainstem compression
- Myelopathy
- retrol=flexed adenoid
- Cervical Spinal Stenosis
- CSF leak
- IIH

Thanks in advance!

 

[Eliza]

Hi guys,

This is my first post and id like to thank everybody here for sharing they're experiences and understandings. Its been so helpful for me as I plan my next steps..

I have been reading this forum for the last few days. My foggy and pressured head make it hard to assimilate and follow.

I have been diagnosed with CFS/Lyme disease, viruses, retroviruses and heavy metals. I have come a long way the last 8 years but still suffer from severe head/ANS type symptoms.

I recently had a brain MRI and my brainstem, thalamus and cerebellum are severely swollen. In the 99th percentile. I also just had another ultrasound on my neck and still have an obstruction of brain flow.

My doctor suspects Chiari and potentially some of the other conditions associated.

I am in Australia and there isn't a lot happening down here in regards to all of this and I am wondering if I could get some help..

I have been trying but i am struggling to put together the list of Scans and tests I should be doing. I am booked in for a standing MRI in a few weeks hopefully with flexion and extension. I don't want to miss anything as can't really afford to go back for seconds

Any help with the appropriate tests for these conditions would be so appreciated:
- Syringomyelia
- Tethered cord
- CCI
- AAI
- Basilar Invagination
- Ventral Brainstem compression
- Myelopathy
- retrol=flexed adenoid
- Cervical Spinal Stenosis
- CSF leak
- IIH

Thanks in advance!

MRV (mri veins brain & neck)?
Upright MRI extension-flexion (Cci/aai, retroflexed odontoid, brainstem & ligaments, BI, ... can be seen)
MRI rest of your spine (stenosis, tethered cord etc)

Would be a start?

Hypertension intracranial often tested through csf puncture (not without risks)
Ophthalmology exam could possibly give an indication as well.

Perhaps join the FB group
https://www.facebook.com/groups/713133622423156/?ref=share
“Cranial cervical radiology ...” where some people are very knowledgeable abt tests/scans/...

Good luck!

 

[MS49]

MRV (mri veins brain & neck)?
Upright MRI extension-flexion (Cci/aai, retroflexed odontoid, brainstem & ligaments, BI, ... can be seen)
MRI rest of your spine (stenosis, tethered cord etc)

Would be a start?

Hypertension intracranial often tested through csf puncture (not without risks)
Ophthalmology exam could possibly give an indication as well.

Perhaps join the FB group
https://www.facebook.com/groups/713133622423156/?ref=share
“Cranial cervical radiology ...” where some people are very knowledgeable abt tests/scans/...

Good luck!

Thank you so much!!

 

[ruben]

Hi there. I'm in Suffolk, UK so not far from London and my intention is to investigate this issue this year. Could some please tell me a clinic I should go to in London for the MRI scan. Also am I right in thinking cost is around £1400. Thanks in advance.

 

[MS49]

Sorry mate Im in Australia..

 

[Daffodil]

Hi there. I'm in Suffolk, UK so not far from London and my intention is to investigate this issue this year. Could some please tell me a clinic I should go to in London for the MRI scan. Also am I right in thinking cost is around £1400. Thanks in advance.

there is a doctor in the UK who performs surgery

 

[Bowser]

Hi @Daffodil. Have you had any improvements from your stem cell therapy?

 

[Daffodil]

Hi @Daffodil. Have you had any improvements from your stem cell therapy?

no. now i am going to start NUCCA chiropractic. I have spent so much on stem cells I am even further from being able to ever afford to get surgery now. I have heard that people who get stem cells hold their chiropractic adjustments longer. I have been looking around the internet and came upon some old testimonials from people who's brain fog.pressure improved a lot through atlas adjustments, One woman says her fibro pain reduced by 80% from NUCCA...some improve but then relapse too. It also takes a very long time. My chiropractor is 2 hrs away by public transit, which is hell for me. So I am not in a great place psychologically at present.

I never get sick cuz of the cfs but for some reason, I have the flu too. ughh. I hope its not that deadly coronavirus going around from china. i am in chinatown.

guess i told you more than you wanted to know lol

How are you holding up?

 

[Daffodil]

not sure i mentioned this before but i found several papers claiming that chiro adjustments improve immune system function. there is even one paper in a chiropractic journal that says they found a 48% increase in CD4 count in HIV patients, after spinal adjustment!

 

[valentinelynx]

not sure i mentioned this before but i found several papers claiming that chiro adjustments improve immune system function. there is even one paper in a chiropractic journal that says they found a 48% increase in CD4 count in HIV patients, after spinal adjustment!

I looked at the paper you mention (I don't think it was published in a peer reviewed journal), and I see the total # of patients in the study was 10! Only five each in the control and the treatment group. Results were not significant, which isn't surprising, given the very low numbers of subjects. The authors state they were "currently working on a larger study to include approximately 200 individuals with HIV". Since the pilot study discussed was performed in the early 1990's (when patients routinely died of HIV/AIDs), if there larger study had showed significant results, it should be findable in the literature. Instead, you see this "result" mentioned over and over again as if it were of value.

 

[Daffodil]

I looked at the paper you mention (I don't think it was published in a peer reviewed journal), and I see the total # of patients in the study was 10! Only five each in the control and the treatment group. Results were not significant, which isn't surprising, given the very low numbers of subjects. The authors state they were "currently working on a larger study to include approximately 200 individuals with HIV". Since the pilot study discussed was performed in the early 1990's (when patients routinely died of HIV/AIDs), if there larger study had showed significant results, it should be findable in the literature. Instead, you see this "result" mentioned over and over again as if it were of value.

oh great lol i never look into things, just believe it. cuz of my fog

i just looked on pubmed. the only thing i could find is
Remission of myasthenia gravis following cervical adjustment.

 

[Bowser]

no. now i am going to start NUCCA chiropractic. I have spent so much on stem cells I am even further from being able to ever afford to get surgery now. I have heard that people who get stem cells hold their chiropractic adjustments longer. I have been looking around the internet and came upon some old testimonials from people who's brain fog.pressure improved a lot through atlas adjustments, One woman says her fibro pain reduced by 80% from NUCCA...some improve but then relapse too. It also takes a very long time. My chiropractor is 2 hrs away by public transit, which is hell for me. So I am not in a great place psychologically at present.

I never get sick cuz of the cfs but for some reason, I have the flu too. ughh. I hope its not that deadly coronavirus going around from china. i am in chinatown.

guess i told you more than you wanted to know lol

How are you holding up?

Feel free to vent lol. Sharing info and venting is what this forum is for.

I haven't heard of NUCCA chiropractic. It sounds interesting. But I was under the impression that chiro as a field was not science based, but perhaps this is different. Do you have plans of trying traction at some point? Maybe before the chiropractic?

As for me, I was diagnosed with possible CCI by Dr. Gilete. I have got an MRV and cineradiology, and I am trying to schedule a Skype consultation, but Dr. G's office is really hard to reach via email. Seems they are really busy. I hope they reply soon.

The MRV report indicated left jugular vein and left transverse sinus vein hypoplasia, so maybe that's something. Maybe it's IIH, and my whole issue can be solved with a stent, which would be a much simpler procedure I think.

I am going to try traction with a local physical therapist this week. Really hope I see improvement on this. Even a single day's relief from constant brain fog would really be something.

 

[Daffodil]

Feel free to vent lol. Sharing info and venting is what this forum is for.

I haven't heard of NUCCA chiropractic. It sounds interesting. But I was under the impression that chiro as a field was not science based, but perhaps this is different. Do you have plans of trying traction at some point? Maybe before the chiropractic?

As for me, I was diagnosed with possible CCI by Dr. Gilete. I have got an MRV and cineradiology, and I am trying to schedule a Skype consultation, but Dr. G's office is really hard to reach via email. Seems they are really busy. I hope they reply soon.

The MRV report indicated left jugular vein and left transverse sinus vein hypoplasia, so maybe that's something. Maybe it's IIH, and my whole issue can be solved with a stent, which would be a much simpler procedure I think.

I am going to try traction with a local physical therapist this week. Really hope I see improvement on this. Even a single day's relief from constant brain fog would really be something.

Hi Bowser. But if you do have a venous flow problem, wouldnt it be because of CCI? what causes hyperplasia? is it congenital?

Yes, Dr. Gilete's office is a problem to get in touch with by email but not by phone. If you call 2 or 3 times, Amy will answer. I would not wait for email.

lol yea i used to laugh at chiropractic too but not anymore. I did atlas orthogonal for 5 weeks 6 months ago and after the 4th adjustment, I felt my sinuses open. This means something because I read that after fusion for CCI/AAI, that is often the first thing patients notice.

Of course this will not be a substitute for surgery...might give me partial improvements....hope it doesnt make me worse. They very gently move your skull so that you do not feel it and they try to align it. They take X-rays and measurements and whatnot. It takes a long time. A board member named Wayne improved significantly with chiropractic but he did Atlas Profilax which I find scary.

Traction with a physio sounds like a good idea as long as they are gentle. I am too scared to try it because of the stem cells.

Let me know how it goes....