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

[jeff_w]

I had been meaning to ask you. you say "once my cranial settling was resolved", was this an instantaneous thing, like you applied the right amount of traction and *poof* your symptoms are gone, or was it a case of a few days of the right amount resolved your symptoms?

Hard to say, because I was a bedbound hospital inpatient when my halo was placed. I had been bedbound for 5 months leading up to the halo placement. My sense is that the improvements were immediate, but in my case, the halo traction was increased in stages.

The neurosurgeon increased the traction on my halo in stages, with roughly one week between each stage:

Stage 1: He applied the halo while I was bedbound.
Stage 2: After a week of lying down and controlling pain, I was ready to sit up for the first time in 5 months. When I sat up, I still had POTS and also had slight vertigo, so he provided more traction with the halo.
Stage 3: The added traction eliminated the vertigo, but I still had POTS.
Stage 4: We added more traction to the halo, and POTS was gone.

With each increase in halo height/traction, the symptoms seemed to immediately resolve. But it could have been that the step-be-step, incremental increases were central to the improvement.

When I end the session my neck feels very warm for like a minute, possibly from blood rushing to area but could also be an inflammatory response triggered in order to repair disks. My neck feels very stiff(???) and I need to crack it. Not really noticed anything else as of yet.

Since you're not under the care of a neurosurgeon, I'd go slow with this.

 

[jeff_w]

@jeff_w

Are you a patient of Dr. Kaufman's??

Yep.

I just finished a phone meeting with him, and obviously he couldn't give me your name, but he told me to look for your story on PR.

I'm the one.

He is exploring this as a possibility for me, and I must admit, just seeing the pics above, I am scared s***less!!

LOL. Most people won't need a halo. If you address all of this before becoming bedbound, then you won't need a halo.

I only needed a halo because without one, I was 100% bedbound. I couldn't even sit up to eat, couldn't roll over, couldn't stand at all, etc.

I hope everyone on here understands this. I'm curious now if everyone else is freaking out, thinking that a halo is a normal part of this.

First step for me is locating a standing MRI in San Diego - so far no luck...

Los Angeles and Beverly Hills have them, but I'm not sure about San Diego. By the way, did Dr. Kaufman write the upright MRI order with flexion and extension? If not, it needs to say that. Without flexion and extension, the upright MRI will be pretty useless. He wrote my order for flexion and extension.

Good luck!

 

[Rachel Riggs]

@jeff_w

I just found a place that has locations all over California including San Diego: http://expertmri.com/stand-up-mri/

Are you able to turn your neck or is it now stationary?

He hasn't written the order yet but I assume so - he said there were very specific instructions involved!

 

[Rachel Riggs]

BTW, @jeff_w Kaufman is a total rock star. I have been to numerous neurosurgeons about this, they all shrug their shoulders - this includes the chief neuro of both Scripps and Stanford. Kaufman refuses to let it go until we figure it out!

 

[Mary]

I just found a place that has locations all over California including San Diego: http://expertmri.com/stand-up-mri/

Thank you for this info! I may be needing it myself in the not too distant future --

 

[jeff_w]

BTW, @jeff_w Kaufman is a total rock star. I have been to numerous neurosurgeons about this, they all shrug their shoulders - this includes the chief neuro of both Scripps and Stanford. Kaufman refuses to let it go until we figure it out!

Dr. Kaufman is great.

Yeah, most neurosurgeons aren't trained to recognize craniocervical instability. So patients get dismissed, they don't get better, or they even become more disabled as the years go by. And we're often told that it's "psychosomatic," to seek psychological therapy, etc.

So at this point in time, there are only three neurosurgeons who specialize in craniocervical instability. Whereas most neurosurgeons have a passing familiarity with it but don’t know how to recognize it unless it’s a result of severe trauma. But really, if the rest of the neurosurgeons would just update their knowledge base and skillset, that would meet a huge unmet need and help thousands of people.

 

[jeff_w]

Are you able to turn your neck or is it now stationary?

I'm gaining back range of motion slowly over time. Most people going into this surgery weren't in a halo for months prior to surgery like I was, so they gain it back pretty fast. But most people will lose about 15% of it, due to the fusion.

He hasn't written the order yet but I assume so - he said there were very specific instructions involved!

I'm glad that he's started looking into this on a regular basis! I was his "Patient Zero," and I brought the research about craniocervical instability (CCI) to him.

Dr. Kaufman is very intellectually curious, so he read the CCI research I brought him, and he considered everything. That's rare in a doctor. Most of them would have such bruised egos if a patient brought them peer-reviewed academic research, and they'd be dismissive immediately.

 

[Rachel Riggs]

I'm gaining back range of motion slowly over time. Most people going into this surgery weren't in a halo for months prior to surgery like I was, so they gain it back pretty fast. But you will lost about 15% of it, due to the fusion.


I'm glad that he's started looking into this on a regular basis! I was his "Patient Zero," and I brought the research about craniocervical instability (CCI) to him.

Dr. Kaufman is very intellectually curious, so he read the CCI research I brought him, and he considered everything. That's rare in a doctor. Most of them would have such bruised egos if a patient brought them peer-reviewed academic research, and they'd be dismissive immediately.

I have been having very severe symptoms when my neck is in a certain position - I become disoriented and my vision feels almost crossed eyed, or that sort of sensation, anyway. I have been waiting for something bad to happen because this just isn't normal...

 

[Gingergrrl]

BTW, @jeff_w Kaufman is a total rock star.

I agree re: Dr. K and he has given me my life back (re: my own course of treatment, nothing to do with CCI). I wish you the best @Rachel Riggs and will be following your journey.

 

[jeff_w]

I have been having very severe symptoms when my neck is in a certain position - I become disoriented and my vision feels almost crossed eyed, or that sort of sensation, anyway. I have been waiting for something bad to happen because this just isn't normal...

That’s why the flexion extension MRIs are so important. They capture what happens during motion, which gives a much richer and more complete picture of any abnormalities.

 

[Rachel Riggs]

I agree re: Dr. K and he has given me my life back (re: my own course of treatment, nothing to do with CCI). I wish you the best @Rachel Riggs and will be following your journey.

Thank you!!!!

 

[dreampop]

My fatigue is gone.

Wow man, I'm so happy for you. I don't know you haha but I'm happy for you. Are you expecting an 100% recovery when all is said and done?

One last question - do you think one of the 2 U.S. doctors would see me without first sending in the flexion MRIs. I ask because my CFS has always had a unusual spinal component in my symptoms. My concern is that I might have CCI or something else, that really describing my symptoms to an expert like them might flush it out if it's not CCI. If I don't have CCI they won't see me and I won't get to use their expertise.

Thanks for all this btw.

 

[jeff_w]

Wow man, I'm so happy for you. I don't know you haha but I'm happy for you. Are you expecting an 100% recovery when all is said and done?

Yes!

One last question - do you think one of the 2 U.S. doctors would see me without first sending in the flexion MRIs. I ask because my CFS has always had a unusual spinal component in my symptoms. My concern is that I might have CCI or something else, that really describing my symptoms to an expert like them might flush it out if it's not CCI. If I don't have CCI they won't see me and I won't get to use their expertise.

They won’t necessarily turn you away, if your images are negative for CCI. Sometimes they’ll review your images and want more info, so they’ll order additional imaging.

You could have other issues besides CCI that are neurosurgical/spinal, like Chiari or a Syrinx or Tethered Cord. Those three tend to cluster together, and any one of them can cause symptoms.

 

[KathMorcos]

I was diagnosed mid 2010 with a chiari Malformation at age 15. It was detected on a normal MRI that the dr requested. The earlier CT scan did not show it. I was then referred to a neurologist and neurosurgen who worked as a team. They both didn't think my symptoms were coming from the Chiari but I did not respond to any treatment I was given.

In December 2010 I had decompression surgery. It is not a minor procedure and the recovery is hard. I made a full recovery from surgery and basically all my symptoms disappeared.

January 2013 I had a sudden onset of the same symptoms. I was in my final year of high school and had the HSC coming up so the timing couldn't be worse. I was under the care of the same neurologist who hospitalised me a number of times for about a week every time. He tried several treatments with little success but did diagnose me with chronic fatigue and fibromyalgia.

I basically went to school 3 half days a week but really pushed myself to keep up my studies from home and the school was very supportive. I couldn't walk some days as I had a lot of muscle weakness. I had extremely severe headaches. I was photophobic, shook for about 30sec after I had slept for a while, my joints were very painful.

I continued to be that way for about 3 years. Then for a period where I deferred studies for a while, I started to get a bit better, my symptoms subsided. I was able to go to uni and go to the gym a few times a week. But that only lasted for about 6-12months, then my symptoms slowly came back but I didn't realise at the time as the onset wasn't as sudden. Only this year I started receiving treatment from CFS and fibromyalgia from someone who specialises in it.

CFS and Chiari share a lot of symptoms. A chiari surgery will provide some relief but if you have an underlying condition of CFS and fibromyalgia, this surgery won't make everything go away forever. It is also a serious decision to have surgery as depending on the descend of the bottom of the brain, they may have to take out a vertebra/s as well as a piece of skull at the bottom.

If anyone suspects a chiari they should get an MRI and find an incredible team of Drs.

 

[jeff_w]

In December 2010 I had decompression surgery. It is not a minor procedure and the recovery is hard. I made a full recovery from surgery and basically all my symptoms disappeared.

January 2013 I had a sudden onset of the same symptoms. I was in my final year of high school and had the HSC coming up so the timing couldn't be worse. I was under the care of the same neurologist who hospitalised me a number of times for about a week every time. He tried several treatments with little success but did diagnose me with chronic fatigue and fibromyalgia.

Thanks for sharing your experience. Did your neurosurgeon ever evaluate you for craniocervical instability or a tethered cord? Oftentimes, neurosurgeons will operate on the Chiari without properly evaluating for craniocervical instability and tethered cord. Chiari rarely exists all by itself. It almost always occurs in along with CCI, Tethered Cord, or both.

The problem has been that most neurosurgeons aren’t specialists. So they’ll treat the Chiari as a stand-alone issue instead of also evaluating and addressing CCI, etc.

So if they only treat the Chiari, the crowding issue is resolved, but the underlying instability won’t be resolved. So over time, symptoms remerge, as the original problem was only partially solved.

CFS and Chiari share a lot of symptoms. A chiari surgery will provide some relief but if you have an underlying condition of CFS and fibromyalgia, this surgery won't make everything go away forever.

I respectfully disagree. If neurosurgery makes your CFS/ME symptoms go away, then you don’t have underlying CFS/ME. The problem was structural and neurosurgical all along. The key is to see an expert who won’t see Chiari as an isolated problem.

It’s typical to be only partially treated, just as you were. The people who get full complete evaluation and treatment almost always go to Dr. Bolognese, Dr. Henderson, or Dr. Gilete. That’s why it’s so important to see one of those specialists. Chiari rarely occurs without also having craniocervical instability. The term for when both occur together is “Complex Chiari.” There’s a lot of peer research on this, which I’ll link later, as I’m busy and mobile right now.

 

[KathMorcos]

I respectfully disagree. If neurosurgery makes your CFS/ME symptoms go away, then you don’t have underlying CFS/ME. The problem was structural and neurosurgical all along. The key is to see an expert who won’t see Chiari as an isolated problem.

For me I did have underlying CFS/ME. I was checked for tethered cord both pre-op and post-op when my symptoms re-emerged. I also didn't have craniocervical instability I was thoroughly checked pre-op. My surgeon and neurologist checked for all those things.

When I had a sudden onset of symptoms scans showed that the lining of my brain was inflamed and probably still is a little. My headaches are due to inflammation, if i take the anti-inflammatory I am prescribed as I should, my headache subsides. However, if I miss a day, I am bed bound with headaches. I did not have classical chiari.

This year I started seeing a complex disorder specialist. He himself worked with one of the best neurosurgeons here in Australia and they found that what you are saying above isn't always the case. Basically for me my brain was inflamed and responding to something when the chiari was found. When my initially onset of headaches came on in 2010, we had just come back from europe and whilst we were on the tail end of our trip I became ill but my headaches didn't appear for a few weeks after we had come back. I almost never vomit, yet when we were on one of our last flights, I vomited quite aggressively and had flu like symptoms.

For me and I know my case is atypical, I caught something whilst I was overseas and when I had surgery this relieved some of the inflammation. Then for some reason in 2013 it was triggered. It could be that I took a pretty bad tumble in the beach the day before, or something about the beach location in the Central Coast.

All I know is that pre-op I became severely neutropenic to the point that my haematologist suspected leukaemia and did a bone marrow test. Thank God I didn't have leukaemia. The testing showed that my body produces enough white cells but they die off as soon as they hit the bloodstream. Why - no one knows. My white cells were not like this previously as I had surgery when I was 5 for an ENT related problem. However, ever since I came back from Europe they have been like this. Every time I have had surgery or a bad infection I have had to have injections to increase my white cell count.

Also, this year my symptoms have evolved and my blood work has change dramatically. I have low red cells and low haemoglobin now too. Which I have never had before. My iron is always in range even though I don't eat any.. My ESR is basically always high. There have also been a lot of other changes. Yet, the one thing that my complex diseases Dr realised is that I have very severe stretch marks on my body that mimic the bartonella rash and I have had that ever since the onset in 2010, coincidence or is there something more to it?

So whilst my case isn't the typical case and is rare, it does happen. I have had every type of MRI and nuclear medicine scan and for me it isn't completely neurological.

 

[KathMorcos]

The people who get full complete evaluation and treatment almost always go to Dr. Bolognese, Dr. Henderson, or Dr. Gilete.

However, I am open to suggestions and drs can be wrong. Maybe I have been mistreated and maybe I haven't. I will take your suggestion and look into it further.

 

[JES]

I bought the over door cervical traction device and used it for three days last weekend. At around the half hour point I consistently got a funny feeling as if blood flow to my brain was improved, but meanwhile I also started to feel slightly more dizzy, so I kept my sessions at around 30-40 minutes.

During the first couple of days I thought I felt a slight improvement in POTS symptoms and brain fog. However, after the third day I started getting a consistent worsening of some old ME/CFS symptoms, such as increased sickness feeling, poor sleep, brain fog, etc. This is a typical response I get to many of the "treatments" I have tried, i.e. they seem to first produce transient improvement, but then it's almost as if my body fights back and gets back to sickness state, which can temporarily cause very bad symptoms. Luckily I seem to be back to baseline now after around three days of no neck traction.

Anyway, it was worth trialing and it was a cheap way of testing this hypothesis, but in my case I think it would have produced some more obvious effects if there really was an underlying structural abnormality. I would warn others that perform this test to start slowly, as even my 30 min twice per day sessions had this kind of effect.

 

[jeff_w]

Anyway, it was worth trialing and it was a cheap way of testing this hypothesis, but in my case I think it would have produced some more obvious effects if there really was an underlying structural abnormality.

Thanks for sharing your trial with traction.

The traction is used for craniocervical instability, but not for Chiari. If you have Chiari without instability, then there’d be no benefit, or if you have both, then you might get some sort of mixed response.

Some neurosurgeons will advise a trial of home traction, based on your imaging, and that’s if your imaging shows instability only.

I would warn others that perform this test to start slowly, as even my 30 min twice per day sessions had this kind of effect.

I agree with this, and I’m somewhat concerned about people doing traction without first knowing their anatomy. It’s safer to consult a specialist neurosurgeon and get a baseline MRI before doing this. But I know that’s not always possible.

You just really don’t want to be stretching out those sensitive neural structures incorrectly. There’s a neurosurgical issue called “Tethered Cord,” and traction could worsen that, if you have it. That’s why I think it’s best to see a neurosurgeon, as the traction only picks up on limited issues, when you could potentially have more complexities. I’d just hate for you guys to get worse from experimenting with this.

 

[tornerose]

Hi! An update from me - would appreciate your input

I went to London and got the upright dynamic MRI scans. (Traveling to London with ME is the craziest thing I have ever done. But I somehow survived) My upright scans have been reviewed by a radiologist in London (Francis Smith) and by the neurosurgeon in Barcelona (Gilete).

Both the radiologist and neurosurgeon concluded that I have CCI, AAI and possibly instability down to C5, in addition to tonsillar herniation.

((However, they got different measurements, which I find a bit strange. For those interested, the neurosurgeon reported a CXA of 126 degrees and a Grabb-Oakes of 9 mm in upright neutral (there was no difference compared to the supine mri scans), BAI translation of 4 mm, 7 mm herniation of tonsils below foramen magnum and not much hypermobility. The radiologist reported a CXA of 134 degrees, Grabb-Oakes of 10 mm, 10 mm herniation, damaged ligaments and hypermobility. BDI wasn’t mentioned by either one, so I guess it was normal.))

In the neurosurgen’s opinion I need fusion, probably c0-c5, asap. Based on the objective findings and my symptoms, he thinks I will only get worse and that there is no other option than surgery. He wants me to come to Barcelona for a clinical examination (and surgery).

I find all this a bit scary and overwhelming. I was not prepared to hear that I may need a fusion that extensive (all the way to c5). Also, I’m not yet convinced that my symptoms are caused by the instability. On the one hand, I know tilting my head back and forth triggers a POTS flare, stabbing neck pain and flu/hung-over-like symptoms that can last for many days. On the other hand, I don’t feel like I in general get better with a neck brace when upright, which one would expect. (I realize that it could be because it’s not a good fit. I tried two different types which I purchased online. The first made me nauseous and sick after 10 minutes wearing it. The other one doesn’t make me worse, but I don’t think it makes me better either. I should probably see a doctor to make sure I wear it correctly before I conclude...) Perhaps I need to have a traction test as well...

Another factor that makes me uncertain is that I got sick with ME after a viral infection. I’ve read that infections can cause CCI and AAI, but that it is rare. I guess it could also be that the infection has triggered an underlying (autoimmune) disease affecting connective tissue, or that there’s an underlying genetic connective tissue disorder that made me prone both to infections and to developing instability, but I don’t have any of the signs of hEDS and I’m thoroughly examined for autoimmune diseases...

I would love to get any input and thoughts you (@jeff_w and others) may have on this. I’m thinking about getting an online consultation with Dr. Bolognese to have a second opinion. I’m also waiting to see a neurosurgeon and a neuroradiologist at a public hospital where I live (although they are not experts).