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

Strawberry

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@jeff_w Do you know of anyone that had the same issues that did stem cell therapy instead? Even though I am/was hypermobile, I'm not certain this is chiari. But very definitely I have a neck injury that no chiropractor has helped. There is a local radio station that has ads for stem cell therapy instead of knee surgery (or other joints) and I can't help wonder if it would help?

So glad to hear how much this has helped you!
 

jeff_w

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@PNWMom @perrier @Mary @Strawberry -

I will answer everything from all of you — either tonight or tomorrow.

I was up all night caring for my cat. He had a lot of tooth extractions and needed my help and attention.

So, yesterday I had a dentist appointment, a doctor appointment, and got up early and took my cat to the vet. I went to the pharmacy and made phone calls, too.

I wouldn’t have been able to do any of this prior to my surgery and halo! I had to pace myself with one phone call per day, and one doctor appointment spaced out by weeks. Otherwise, I’d crash and become severely bedridden, unable to shower or feed myself due to PEM. I also used a wheelchair outside the house due to POTS and PEM, since 2014.

I no longer have any POTS or any PEM. I walk everywhere now. I’m only using a cane due to muscle weakness from years of deconditioning. Eventually, I won’t even need the cane.

I still have to pace myself, and rest, because my atrophied muscles will hurt if I push them beyond their capacity. But the flavor of this is no longer “illness.” My energy levels are normal. It’s just physical weakness now that limits me, and this has already gotten better than it was a month ago. It will continue to improve with time and physical therapy.
 
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@PNWMom @perrier @Mary @Strawberry -

I will answer everything from all of you — either tonight or tomorrow.

.
THANK YOU!! Any input or ideas you have would be appreciated. As I’m sure you know from your experience we’re desperate.

FWIW, my daughter did great with immunosuppressive therapy but IV Ig was a disaster.

Good luck with your cat. We have two dogs and whenever there is a medical issue, it is a lot of time and worry.
 

Mary

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@jeff_w - I hope your cat is okay! I have a cat too, we've been through a lot the last 6 or 7 months, she's doing a lot better, but it can get harrowing -

I read yesterday where Cheesus posted about the Perrin Technique possibly helping him, he's not sure yet if any benefit will last, it's too soon to tell. Anyways, the PT involves the spine and the brain and lymphatic drainage. I watched several short videos by Dr. Perrin and it's fascinating. So there may be something to that as well, and he even mentioned at one point chiari malformation. It makes me wonder more and more. He showed a healthy spine with normal curvature, and said that all ME patients he had treated had a flat upper thoracic spine - he showed pictures and that's what my spine looks like. Which may have something to do with the constant tightness in my neck.

I never thought structural issues could have anything to do with ME/CFS but it's making more and more sense to me.

Whenever you have the energy and time to respond here would be great - I appreciate your update, and again, good luck with your cat! :):cat:
 

Gingergrrl

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I was up all night caring for my cat. He had a lot of tooth extractions and needed my help and attention.
I so relate to this sentence (except with my dog and her back surgery vs. a cat) and it is unbelievable how much time, physical strength, etc, this all takes out of you! I hope your cat is doing okay.

So, yesterday I had a dentist appointment, a doctor appointment, and got up early and took my cat to the vet. I went to the pharmacy and made phone calls, too. I wouldn’t have been able to do any of this prior to my surgery and halo!
I really relate to this as well (with my own treatments and I did not have surgery or halo!) and today I spent 5-6 hours driving myself to a doctors appt, to CVS, etc, and was out in the world like a normal person. I am so glad you are sharing about your treatments (as I am with mine) and even if it only helps one other person of the thousands who will read this down the line, it makes it all worth it.

FWIW, my daughter did great with immunosuppressive therapy but IV Ig was a disaster.
@PNWMom I remember chatting with you about two years ago (not sure if you remember me!) and I would love to hear more about how your daughter did with her treatments in the future.
 

jeff_w

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@jeff_w - when you say hit-or-miss, do you mean in diagnosing CCI, or in doing the surgery, or both? He's the one doctor on your list who it would be feasible for me to see because of his location.
If you have the ability to see Dr. Johnson, then I'd absolutely do it. Even if the odds of him finding it are 50/50, it's worth doing.

I don't know if I fit any critieria for Chiari or CCI.
The flexion-extension MRI results will tell you this.

I have moderate ME/CFS - PEM hits like clockwork the next day if I exceed my activity limit (3-1/2 to 4 hours of light activity with rest breaks); also, intense mental activity can cause PEM.
I had that dependable PEM response, though I was more severely ill than you're describing. Mental activity also caused PEM for me, like it's doing with you.

The only thing is I have a constant tightness in the back of my neck, like you would get from stress, but it's always there, no matter how relaxed I am. There's no pain.
There's not always pain. Tightness is typical with CCI and sometimes Chiari.

Does this sound like it could be anything to you, or perhaps at least worth checking out?
Absolutely X 100.

Thank you for your apparently endless patience in answering all of our questions! :)
You're welcome. I'm glad to share.
 

jeff_w

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@jeff_w - when you say hit-or-miss, do you mean in diagnosing CCI, or in doing the surgery, or both? He's the one doctor on your list who it would be feasible for me to see because of his location.
@Mary - I just had a thought about a tactical strategy for dealing with Dr. Johnson.

If you can get your flexion-extension MRI ahead of time, you should first send those images to Dr. Gilete, in Spain. Do this prior to approaching Johnson. Dr. Gilete is a true expert in Chiari/CCI, and he'll review your images remotely either for free or a small fee.

Once you have Dr. Gilete's opinion, then you can approach Dr. Johnson. If Dr. Gilete saw Chiari or CCI in your imaging, Dr. Johnson will probably be more inclined to see it, when he otherwise might have missed it.
 

Mary

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@jeff_w - thank you so much for this suggestion! It's a great idea. :thumbsup: Now I have to find someone to order an MRI. I don't have a good doctor right now, but I will work on it. I did see Dr. Kaufman almost 3 years ago, one visit in person and one over the phone, and he basically just told me to take more CoQ10 and ALA. But I'll contact him and see if he'd be willing to order the MRI without paying for a full visit which would be hard for me to do.

And if he can't or won't, I'll find someone. I've been putting off finding a decent doctor because it's difficult and will mean some travel to L.A. - oh well! Whoever said life was going to be easy?!? :sluggish:
 

jeff_w

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@jeff_w Do you know of anyone that had the same issues that did stem cell therapy instead? Even though I am/was hypermobile, I'm not certain this is chiari. But very definitely I have a neck injury that no chiropractor has helped. There is a local radio station that has ads for stem cell therapy instead of knee surgery (or other joints) and I can't help wonder if it would help?
I think it would be a good idea to first know what you're dealing with: Is it Chiari, CCI, etc.? If you're hypermobile, then the odds are even higher that you have Chiari/CCI/etc. Chiari and CCI are two different issues, but they often go together.

I don't see how stem cells would help with Chiari. The only way I could see them helping with CCI is if the stem cells would regenerate and tighten the failing neck ligaments. But that seems like a long shot. I don't think it would happen. I definitely wouldn't do a stem cell treatment for these issues unless you find research to support it.

I also don't think you'll be able to find large groups of people who have tried stem cell treatments for Chiari/CCI. So you wouldn't be able to read thousands of people's experiences, because they don't exist.

So overall, I think trying a stem cell treatment for these issues would be very risky, both physically and financially.
 
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jeff_w

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I’ve read this thread with incredible interest. My twentysomething daughter was diagnosed with EDS hypermobility type using the newest established criteria after being diagnosed with POTS (Mayo) and ME/CFS (Bateman).
That's great news that she got an EDS diagnosis.

Her EDS specialist PT has been adamant that my daughter get a upright flexion/tension MRI. Interestingly enough, her GI-immunologist and neuro-GI have both been driving for this upright MRI as well (the neuro GI specializes in connective tissue disorders and the GI tract).
They are knowledgeable and correct!

My question is what information/research is out there that I should bring to her appointment? If I do have to make a case, data and research helps.
Peer-reviewed academic research from 2017: Here

Peer-reviewed academic research from 2018: Here

The University of Utah does have a dedicated neuroradiology department and one of the scientific board members of the CS Foundation, Douglas Brockmeyer (pediatric neuro), is at the U of U children’ s hospital. I am hopeful we could get her scans at least *read* at Urah. (Bolognese and Henderson are also on the CS Foundation board)
I wouldn't count on getting scans properly read by any other neurosurgeons at this time, not even at a major metropolitan university center. I'd send them directly to Henderson or Bolognese, or possibly Sandhu.

Also—I did some preliminary research and according to his website, Henderson does not accept any PPO or HMO commercial insurance and is out of network for billing purposes. For neurosurgery, this can be major $$. Sandhu at Georgetown is in-network for us (BC/BS). I didn’t check Bolognese yet.
Henderson's hospital is in network, even if he isn't. Some people are able to get their entire surgeries with him covered at the in-network rate (gap exception, etc.). My surgery with Bolognese was covered at the in-network rate. Sandhu would also be worth pursuing.

What does recovery look like for this procedure?
A lot of it depends on the pre-surgical condition. But generally, she'd be in a cervical collar for 6-12 weeks while the fusion heals.

We live in the western US so any east coast surgery would require a place to stay. How long would it be before my daughter would be safe to fly?
She'd be inpatient at the hospital for 5 days on average, followed by 5 days at a hotel near the hospital. Ten days is the average time for patients being able to fly home.
 

jeff_w

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THIS AND SEVENTEEN OTHER POSTS FROM THIS POINT ON HAVE BEEN MOVED FROM THE THREAD RECOVERY TO THIS THREAD

Just curious, do you ever wonder then if you were misdiagnosed with CFS/ME?
That’s the million dollar question. ;)

I had the most classic textbook ME/CFS presentation.
  • Post-exertional malaise (this was the worst symptom and completely disabling)
  • Profound exhaustion
  • Unrefreshing sleep
  • Postural orthostatic tachycardia syndrome (POTS)
  • Chronically positive EBV IgM tigers
  • Chronically low natural killer cell function
  • Sensitivity to light
  • Brain fog
  • Recurring SIBO
So, the diagnosis of ME/CFS fit my symptoms. It really makes me wonder how many others on here are like me, with undiagnosed brain stem compression.

But anyway. I had no idea, for all the years that I was ill, that the issue was my skull and spine. What finally clued me in was when I started getting headaches at the base of my skull. And then, I started having a “bobble head” sensation.

I’m so thankful for that strange sensation, because it guided my research. After a lot of research, and some luck, I realized my “bobble head” sensation was a symptom of craniocervical instability.

And then, once the craniocervical instability was confirmed by an MRI, I was put in a halo brace.

The purpose of the halo brace was to stabilize my skull and neck until fusion surgery. But then, to my huge shock and relief, the halo brace took away my entire illness. All my exhaustion, post-exertional malaise, light sensitivity, and POTS were gone. I had been completely disabled, fluctuating between bedridden and housebound, for 4 years.

So, I had my craniocervical fusion surgery on January 31st, 2018. And I’m still doing very well. So all along, I had brain stem compression.

Did I have ME/CFS? Well, I definitely had the classic symptom presentation.
 
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jeff_w

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Here’s a photo of me in the halo. It was screwed into my skull with four titanium pins.

The halo took away my POTS, exhaustion, post exertional malaise— everything. All of my ME/CFS symptoms were caused by brain stem compression. The halo kept my skull positioned correctly, relieving the brain stem compression.

I was in the halo for four months prior to my fusion surgery.

1F74B862-1B5F-4579-BEB7-EFAA1CAD547A.jpeg
 
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Starsister

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@jeff_w I'm curious who you went to to get the approval for the MRI of your cervical...and then who interpreted the results to identify the problem? I suspect a lot of my symptoms are spine related but am not getting any creative solutions from drs I've seen. Maybe my ME ( or whatever we are calling MEat present) has contubuted to hypermobility and spinal problems over the last 35 years. I had a 4 X-ray of my complete spine done last year that showed severe scoliosis. A certain treatment table helped my pinched nerve symptoms from my waist down but I'm struggling with worsening of my cervical area. I still can't stand to make it quickly through a grocery store. I have other symptoms that obviously are viral and autoimmune related but my spine has been the most debilitating in last few years. I'm really happy for you that you found a source of your issues and are recovering!
 

Hip

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In my own specific case, I had severe brain stem compression. This structural problem was causing my POTS, PEM, and classic CFS/ME presentation. No amount of mindfulness ever fixed me. But surgery did. And my surgery was informed by peer-reviewed medical research. I’m not going to assume that everyone on this board has brain stem compression, though I suspect there are others.
That's fascinating, jeff_w, that brainstem compression could cause all the symptoms of ME/CFS, including PEM and severe POTS.

Are you now free of all ME/CFS symptoms after surgically addressing the craniocervical instability that caused your brain stem compression?

I wonder if your experience throws any light on the nature of regular ME/CFS? Could some sort of brainstem compression, or perhaps brainstem swelling due to inflammation, be found in regular ME/CFS, causing or contributing to the symptoms?

If you look at the ME/CFS brain autopsies, they found enterovirus infection in the brain stem. Dr John Chia says enterovirus likely enters the brain by traveling along the vagus nerve, which runs from gut to the brain; and this nerve happens to enter the brain at the brain stem (the vagus connects to the medulla oblongata of the brain stem). Thus you might guess that the brain stem would be one of the brain areas infected.

If you have an ongoing non-cytolytic enterovirus infection of the brain stem, you might expect some inflammation and perhaps swelling there.



After I developed ME/CFS from what appeared to be coxsackievirus B4 meningitis/encephalitis, I always had this inflammatory feeling in my head at the position of the nape of my neck (which would correspond to the location of the cerebellum and brainstem), and so I wondered if stretching and elongating the neck might allow for better blood flow to the region, which might then relieve the inflammation and in turn perhaps improve ME/CFS symptoms.

So a while ago I did some experiments where I applied a substantial force to pull my whole skull upwards from my spine for around 5 or 10 minutes, in order to stretch and elongate my neck (basically I used some household furniture to wedge my head in place, and then used some of my bodyweight as a downward force, sort of hanging my body under my skull).

After this neck stretching exercise, I noticed some mild improvements to my ME/CFS symptoms, improvements which would last a day or two. But because my stretching setup using furniture was awkward to use, I never really pursued it for longer than a few days of daily application. But I had plans to build an easier to use neck stretcher, so that I could apply it daily for many weeks, to see if further improvements might accrue.
 

ljimbo423

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All of my ME/CFS symptoms were caused by brain stem compression. The halo kept my skull positioned correctly, relieving the brain stem compression.
Hi Jeff- Congrats on a successful surgery and feeling better!!

Do you have any idea what part of the brain, the brain stem compression was affecting? If we new that, it might give some insights into what causes symptoms in those of us without brain stem compression.

Jim
 

Mary

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and @Hip - I have a constant tightness at the top of the back of my neck. I just found a chiropractic report from 2006 (8 years after I started crashing) which stated I have reverse lordotic curve - my neck curves the opposite of how it should - plus some problems with cervical vertebrae 4, 5 and 6. It was never treated, that time is a blur for me and I never looked into this, but I am now. I'm going to get new x-rays done next week and will be looking into getting the MRI that @jeff_w recommends in this thread: http://forums.phoenixrising.me/inde...uled-out-chiari-as-a-cause-of-your-cfs.56908/

Also Jeff told me he had the same problem, a reversed lordotic curve. I'm not nearly as severe as Jeff, I'm not bedridden and don't have severe POTS but I crash regularly, immune system impaired, sleep bad etc.

I'll post when I get more info (which will take awhile) --
 

Hip

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@ScottTriGuy had this inflammatory feeling in the back of his head also, and said that applying near infrared laser therapy (using the BioFlex Home Unit II) at the base of his skull led to major and permanent improvements in his ME/CFS within 3 days.

I tried the same thing, using a cheap $10 infrared LED spotlight illuminator (830 nm wavelength) like the one pictured here, but in my case it did not help.

The difference though is that the BioFlex I believe employs two wavelengths, 660 nm (red light) and 840 nm (infrared light), whereas I only used one wavelength of 830 nm.
 
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Starsister

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Thanks for the discussions on brain stem compression. My neck has always tilted forward, inspite if chirooractic care for forty years..although one dr got mine to curve right for awhile, but didn't last. Thinking about it, my worse CFS symptoms started about the time I began having major spine pain around age 30. And I do get the burning swelling or lumps pain at the base of the skull. Now it has progressed to causing me a headache that doesn't go away with meds or sleep. So weird to wake up the next day with the same headache I went to bed with. This is when I know to go to the particular chiropractor who can adjust my neck correctly, and for a few days or week I feel like fluids are flowing in my body again. Like I can feel life energy again, and I can think more clearly. Just wish the results would last.

@Hip I'm glad to hear someone else has experimented with home techniques to stretch out the vertebrae. I have a plastic triangle shaped thing one chiro sold me that is supposed to stretch the cervical by laying on it..I try a towel or foam tubing to make it softer. I get impairment just laying flat so haven't stayed in it as long as I should. For the rest of my spine, I have a massage table with adjustable legs that I keep thinking if I lowered one end and found a way to keep from sliding off..I could stretch myself out that way. Those benches, I guess for doing sit ups, that slope in the gym were perfect for this, felt so good, when I belonged to a gym.