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

[Wayne]

Somewhat strangely after the scans got done I've gotten a bad ear infection, wondering if the head movement has messed something up, I've had hearing loss/tinnitus in that ear for 2 weeks now..

Hi @brando, Good to hear how things are progressing for you. -- Re: your tinnitus: I had a major tinnitus onset this past February, and have been frequenting a tinnitus forum since then. From what I can gather, one of the best things you can do for yourself at this stage of your tinnitus is to seek out a health care practitioner who does LLLT (Low Laser Light Therapy), also known as photomodulation.

I recently read a fairly long thread on it, particularly posts by one individual who decided to purchase a home LLLT device for about $3,000. A professional, clinical grade one would have cost about $9,000. So he had a chance to have experience with both. He said to not bother with the home devices. Go straight to a professional, as the beneficial effects are multiples greater. He believed that if he would have gone straight for that after his acoustic trauma, he would be 100% over his tinnitus today.

Of course, your tinnitus may clear up as soon as your infection clears up as well. Drops of diluted apple cider vinegar in the ears has been reported to be very helpful by some on the tinnitus forum. -- Best!

 

[ruben]

Hi there. Obviously a lot to read on this thread. I was just wondering, having had this Cfs for decades now I do have some kind of neck problem. When I turn my head there is a distinct crunching kind of noise. Wouldn't say any pain though. Is it worth getting all this checked out as a cause of my poor health. Thanks in advance.

 

[Wayne]

Is it worth getting all this checked out as a cause of my poor health

I'd say yes. Not only could it be contributing to your health issues, but if left untreated, "could" eventually cause further stress, which might start affecting other parts of your face, like the ears, eyes, throat, etc. Many people's tinnitus actually originate from their neck. -- Best!

 

[Daffodil]

A wee update for you, I got the evaluation from Dr Gilete today confirming the AAI and Chiari and adding CCI, suggesting a few more scans including angiogram to get more detail. I'm in the UK and am going to take the evaluation (as well as the report from the clinic professor neurologist) to an NHS neurologist and/or neurosurgeon and see how far I get. Going to update my (mercifully helpful) GP tomorrow hopefully. Not to get ahead of myself but after 12 years of searching and this is the first thing that fit's the bill, I'm feeling a huge release (not relief), cried for ages - really scared!
Would *really* love to get accepted to the Beyond The Measurement group right about now!

ps: Somewhat strangely after the scans got done I've gotten a bad ear infection, wondering if the head movement has messed something up, I've had hearing loss/tinnitus in that ear for 2 weeks now.. or maybe I was run down with all the action. My allergies seem to have went into overdrive too.

@jeff_w if you are still keeping a tally, you can officially add another to the list of people diagnoses with CCI/AAI and Chiari because of you!

brando i am curious....if you have this, will the govt pay for the surgery?
thanks

 

[Daffodil]

Hi there. Obviously a lot to read on this thread. I was just wondering, having had this Cfs for decades now I do have some kind of neck problem. When I turn my head there is a distinct crunching kind of noise. Wouldn't say any pain though. Is it worth getting all this checked out as a cause of my poor health. Thanks in advance.

we have so much inflammation that it breaks down cartilage...we have all kinds of osteoarthritis problems years earlier than we would have had them, i think. it is happening to me as well.

 

[Daffodil]

i also have noticed over the years that when i am laying down with a pillow scrunched up under my neck while on my laptop, my brain fog will gradually get worse....like..if i bend my neck all the way forward...it will get worse.

i just always assumed i had inflammation in there and bending gave less room.......i dont know what to think

 

[brando]

brando i am curious....if you have this, will the govt pay for the surgery?
thanks

I have no idea.. I think you can apply to the NHS for funding after the fact if you can prove that you needed the surgery and they weren't able to provide what was necessary. I may yet have to find out!

 

[bjl218]

These prices seem pretty good. Just curious, did these prices include putting the head in multiple positions?

i am thinking of traveling to Latham NY for an upright MRI. I just called them and without contrast, it is $600USD. With contrast, it is $800.

 

[Daffodil]

These prices seem pretty good. Just curious, did these prices include putting the head in multiple positions?

I agree. I was wondering why it is less than most places but I have noticed many medical things are less in upstate NY...perhaps the average household income is quite low here?

Yes, the price includes the different positions, according to the woman who answered the phone. it is considered part of the one MRI

Since you don't need contrast, it would be $600 which seems doable.

 

[Daffodil]

another question for those who know: would it be possible to see if I have this problem by using a neck traction device before going to all the trouble of getting an MRI and trying for surgery?

can I rent a halo and use it on myself? or some other contraption? I saw one that hangs from a doorknob.

i wonder if this might be another piece of the puzzle for me. i have to admit it seems like a longshot but even my doctor is stumped regarding my severe brain fog.

thanks a lot for any suggestions

 

[bjl218]

From what I've gathered, the best course of action seems to be to get the MRI and have it reviewed by one of the expert neurosurgeons who might recommend surgery or physical therapy. If you're interested in trying out a traction device, see my post here .

 

[Daffodil]

From what I've gathered, the best course of action seems to be to get the MRI and have it reviewed by one of the expert neurosurgeons who might recommend surgery or physical therapy. If you're interested in trying out a traction device, see my post here .

thanks. i looked up that device. jeff says it did not work for him, yet the surgery did.... have you tried it out yet? if so. how was it?

so...i was thinking....now lets say we have inflammation from an unknown source (According to KDM's team, it seems to be eminating from the plasmacytoid dendritic cells in the gut) and this inflammation is causing the swelling in the brain stem, which, in turn, is causing at least some of our symptoms. now, if we have surgery to create more space for the brain stem, it will decrease intercranial pressure, pressure on the spinal cord/brain stem, etc....and eliminate some of the CFS symptoms. ...but the inflammation will still be there....so we havent taken care of the original problem, right?

this is all so confusing. the tissue study clearly showed the inflammation coming from the gut....how can cci surgery fix this??

 

[Daffodil]

To be more clear: I was asserting that a cervical MRI is indicated with on going neck problems in many cases, even if there are absolutely no reasons to suspect CCI/AAI or Chiari. I can a very important diagnostic tool.

hi starchild. could you please tell me what further disabling symptoms jess and jen had? sorry my fog is too bad to go through the thread. thanks

 

[Wayne]

hi wayne. that is a good hypothesis but both jeff and jen got sick after a severe flu-like illness. why would the brain stem compression from CCI occur at that time?

Hi @Daffodil -- I'm not positive on this, but seem to recall @jeff_w saying he thought his ligaments became weakend after his illness. If that's the case (or even a reasonable hypothesis), then I can see how that would have similar effects as experiencing some kind of exterior physical trauma to the neck area.

what if the surgery makes more room so the pressure is less but the inflammation is still unresolved from the offending source?

This is the primary reason I regularly apply a DMSO mixture to my neck area. All indications are that it reduces inflammation in that area, and surrounding areas as well. This mixture keeps my neck pain and stiffness at bay, and has almost completely eliminated my many years' experience with feeling an uncomfortable pressure in my brain/head.

 

[Daffodil]

Hi @Daffodil -- I'm not positive on this, but seem to recall @jeff_w saying he thought his ligaments became weakend after his illness. If that's the case (or even a reasonable hypothesis), then I can see how that would have similar effects as experiencing some kind of exterior physical trauma to the neck area.

This is the primary reason I regularly apply a DMSO mixture to my neck area. All indications are that it reduces inflammation in that area, and surrounding areas as well. This mixture keeps my neck pain and stiffness at bay, and has almost completely eliminated my many years' experience with feeling an uncomfortable pressure in my brain/head.

wow is dmso like tiger balm? the kind of thing that clears the sinuses when you smell it?

do you have brain fog and if so, does this help that?

i wish i could connect with jennifer brea and see how she is doing. i think she last said her brain is clearer than its been in ages .... does anyone know if she posts on this board?

thank you

 

[StarChild56]

hi starchild. could you please tell me what further disabling symptoms jess and jen had? sorry my fog is too bad to go through the thread. thanks

They had a lot - but the ones that I also have that Jeff now has resolved are his POTS/MCAS (it appears Jen did have her POTS resolve for 10 days post op, but it returned).
However, they both had extreme difficulty breathing when turning their heads I believe and I don't have that problem.

I am sorry I don't remember all of their symptoms. They had many more listed on their posts/his blog.

But for me, I have excruciating pain and pressure - my skull pushing into the top of my neck; horrific migraines and neck pain. So even if I can't get my POTS/MCAS to go away (my cause may be autoimmune in POTS vs neuro) - to relieve the pain and pressure and reduce migraines and neck pain would be tremendous and worth it to me. I have no quality of life due to those issues.

 

[Daffodil]

They had a lot - but the ones that I also have that Jeff now has resolved are his POTS/MCAS (it appears Jen did have her POTS resolve for 10 days post op, but it returned).
However, they both had extreme difficulty breathing when turning their heads I believe and I don't have that problem.

I am sorry I don't remember all of their symptoms. They had many more listed on their posts/his blog.

But for me, I have excruciating pain and pressure - my skull pushing into the top of my neck; horrific migraines and neck pain. So even if I can't get my POTS/MCAS to go away (my cause may be autoimmune in POTS vs neuro) - to relieve the pain and pressure and reduce migraines and neck pain would be tremendous and worth it to me. I have no quality of life due to those issues.

damn that sounds awful. I don't have any of those things except the pressure....but I had SEVERE cramping and stiffness after the mono and on and off for years. it seemed to get better as time went on but I still sometimes cannot stand it when hair is wet (I have long hair) and when I keep a ponytail on for too long...too heavy. when I was really sick, I used to cry and beg my mom to message a certain small area of my brain stem....exactly where the neck joins the head...that junction area....it was like ants were crawling in there. this went on for years and I almost took my life many times.

I always thought I must have infection in my brain stem....but now I have done years of antibiotics and antivirals and the brain fog is still pretty bad.

geez I wonder how many of us have this

 

[Daffodil]

Hi @Daffodil -- I'm not positive on this, but seem to recall @jeff_w saying he thought his ligaments became weakend after his illness. If that's the case (or even a reasonable hypothesis), then I can see how that would have similar effects as experiencing some kind of exterior physical trauma to the neck area.

This is the primary reason I regularly apply a DMSO mixture to my neck area. All indications are that it reduces inflammation in that area, and surrounding areas as well. This mixture keeps my neck pain and stiffness at bay, and has almost completely eliminated my many years' experience with feeling an uncomfortable pressure in my brain/head.

so I was looking up infections of the spine or spinal canal or something.....and they said something about instability that can result after....so maybe infection can do something to the ligaments....

 

[Mary]

Do you remember what the Atlas adjustment specifically involved? I don't think it pertains to my neck and arm pain but I am still very curious!

Hi, finally getting back to this The Atlas vertebra is the first vertebra in the neck and the chiropractor adjusted it like he would any other vertebra. It involved some manipulation but it wasn't painful or rough. It only took a second and I said, is that it? And he said yup. And immediately my leg measurements improved and weight distribution but he said it would take time for my body to adjust to the adjustment and so I did several follow-up visits, and everything held. But I did do this some 8 years ago, and it did get out of adjustment during those 8 years - I don't know when - but again it did not make any difference in how I feel except for there was less tightness in my neck

Your problems sound way different. Did you ever get your MRI results?

 

[StarChild56]

damn that sounds awful. I don't have any of those things except the pressure....but I had SEVERE cramping and stiffness after the mono and on and off for years. it seemed to get better as time went on but I still sometimes cannot stand it when hair is wet (I have long hair) and when I keep a ponytail on for too long...too heavy. when I was really sick, I used to cry and beg my mom to message a certain small area of my brain stem....exactly where the neck joins the head...that junction area....it was like ants were crawling in there. this went on for years and I almost took my life many times.

It is awful I can not wait to get the surgery.

The pressure is no fun, I am sorry you have that. And that ramping and stiffness after mono sounds awful! I also have bad muscle spasms so I know that is no fun.

How funny about the ponytail...I've always had problems like you describe, especially when my hair is long.

Yes my worst spots are on each side of the neck where they meet the bottom of my skull (though my left side is the worst).

The ants crawling sensation - that sounds horrific. I am so sorry.

geez I wonder how many of us have this

That is a very good question!