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

[rel8ted]

Obviously I will never ever recommend this surgery to anyone. Even if I would recover to 100%.
If you decide to have this surgery in the hope of improving your ME or dysautonomia symptoms you must understand and accept there are 0 guarantees, there will be risks and side effects and you will be a guinea pig. The relationship between CCI and ME remains unclear; we only have a few anecdotal success stories. More research is desperately needed.

YES, exactly. There is no way to know the outcome and it is very complicated. Patiently waiting to see what the outcome of this is.

 

[Daffodil]

That's a shame, I thought I read somewhere that he had done that for someone.

Still, I wouldn't be going there for the surgery, I'd still be going to Barcelona. I'll see if Dr Gilete has anything to add re my rotational MRI and supine brain/spine.

No, please don't have anyone not medically qualified push and shove on your skull/upper neck like I did. I was foolish & really think it could have made me worse. It has caused strokes in some people. I was just desperate.

B xxx

i know desperation. i am the one who took AZT and now i think my hearts messed up!

 

[Hip]

In this thread, @jeff_w says that only the invasive halo traction relieved POTS.

I believe that's right, as Jeff was a severe case. But Jeff also says that:

Neurosurgeons who specialize in craniocervical instability, which was the cause of my ME/CFS, do exactly what you did: A Traction Test.

They grip the skull and apply traction to see if this eliminates symptoms of brain stem compression. They measure how many pounds of traction are needed to eliminate your symptoms.

During this traction test, the neurosurgeon will ask if your symptoms are being relieved (subjectively), and they also look at objective measures - specifically: Heart rate/POTS & cervical angles.

So my understanding is that these neurosurgeons will use a traction device of some sort while they are examining and testing the patient, and will look for a reduction in symptoms when traction is applied.

I haven't read that @JenB 's POTS disappeared before fusion.

Jeff mentioned it here:

Prior to her surgery (and her subsequent hospital stay), the neurosurgeon performed a traction test on her that would perfectly mimic a fusion. The purpose of this traction test was to make sure Jen would be a good surgical candidate.

During this pre-surgical traction test, Jen felt healthy for the first time in years. With this traction test, the neurosurgeon temporarily lifts the skull off of the brainstem in a precise, x-ray-guided manner -- completely freeing the brainstem from mechanical compression. When the neurosurgeon let go, Jen felt sick with ME once again. This is a clear indication that Jen's problem was brainstem compression, as was mine.

 

[Remi]

Hello, I am new here and am reading, reading, reading and reading. I just introduced myself on ´the introduction´ page an hour ago, but my name is Martine, I am 46 years old, I am Dutch and live in Berlin, Germany.

I read that Mattie (also from the Netherlands) had his upright MRT in Hannover, Germany. Hannover is only about a three hour drive from Berlin. I´d like to know if there are others here who have experience with CCI-Upright MRT in Hannover? Are the docs acquainted with CCI and do they know how to take the pictures (from the right angles etc. so that Dr. G in Barcelona can judge them)? I would be very grateful for your answers.

Hartelijke groet,

Martine

ps: I forgot a diagnose in my ´Introduction page´ and I've no idea where this forum found this picture of me . Where can I change those little things in my profile?

Hi!

The picture might come from the account you sign up with. You can change it by clicking on your username, then click on the picture.

I will take a look at my own intro page to see where to edit. And read yours.

Hannover only 3 hours away as opposed to London, would be great if you could go there. I read Frankfurt was €1400 for someone who had good scans there (Amy de W. did not).

 

[Remi]

I believe that's right, as Jeff was a severe case. But Jeff also says that:

So my understanding is that these neurosurgeons will use a traction device of some sort while they are examining and testing the patient, and will look for a reduction in symptoms when traction is applied.

Jeff mentioned it here:

Thank you!

 

[bombsh3ll]

What bothers me about the traction is perhaps it is ok if you then end up doing surgery, but supposing you were only border line in terms of instability or not even that, & 20-30lbs of upwards traction is applied to your head. Maybe you wouldn't feel better during it, but then when that head sinks down again, you might be worse off than before.

Now I don 't know whether to try that damn halo. Amy said i could have it for 3-5 days maybe. If I was in the hospital, it could be adjusted as needed until any benefit was evident or not, & at least if I couldn't breathe or move once it came off, I'd be in the right place.

B xcc

 

[Rufous McKinney]

They are absolutely swamped at the moment due to all the online publicity this has been getting.

This: swamped now Alert- needs to get widely distributed over in Medical School Land.

 

[Sushi]

Also, I am thinking about Jen's issues worsening after anaesthetic when the neck is forcibly extended to intubate, and Jeff's screws coming out when the physio pulled on his neck - what if you get fused then at some point need another general anaesthetic? How could you be safely intubated without neck extension?

B xxx

Any one have more information on this? I will be intubated soon and have hEDS. @jeff_w

 

[GlassHouse]

@jeff_w Thank you so much for sharing your story! I have been to your website and read your journey. Really incredible!

I've had hEDS and a very poor immune system since childhood and POTS since I was 12. But became severely ill after a high fever of 103-104F for 6 days when I was 21. Then I developed an altered state of consciousness and cannot stay awake (I sleep 12-21 hrs/day and never feel rested) and had multiple organ failures and and bouts of C diff that lead to septic shock and hospitalization.

Dr Peterson and Kaufman have found that I test positive for HHV-7 DNA in my spinal fluid and in the tissue from my stomach, small intestine, and colon. Sadly, I haven't improved on Valcyte, and the other antivirals would be through an IV, which carries risk of infection. I'm trying to get IVIG (or rather subcutaneous IgG) and that might help my immune system fight the virus (and also make it safer to get IV antivirals).

I've been to physical therapy for spasmed muscles at the base of my skull since 2011. It happened right after the initial encephalitis (I still have viral encephalitis) that kicked off my decline. But I'd never heard of CCI/ AAI so I didn't push for answers about the head pain. I just assumed it's an EDS thing.

I just thought that excruciating joint pain and thousands of muscle knots all over my body was just part of hEDS that no one can do anything about. My shoulders, wrists, elbows, hips, knees and ankles pop in and out of place all day and I'm incapacitated with pain by the end of the day. I've always been told that that's just how life with EDS is.

Once a physical therapist put all my ribs back into place and it felt amazing! But they slid back out of place within a few hours of me standing and walking around.

I cannot be a passenger in a car without developing a debilitating headache from the base of my skull. I've had a constant headache there since 2011, but it gets so bad that I cannot speak and cannot take any light, sound, or smells, and my skin on my face feels like it is burning but the rest of me is very cold and I start shivering. I also have to pee constantly, despite taking desmopressin. These weird episodes last for several hours and the only thing that helps is pressure against the back of my head while I'm laying down and also icing the back of my head/ neck.

My husband has learned to drive at a very constant speed because it's the acceleration-deceleration (the jerky stop-go motion) that causes the pain for me.

I've recently had supine MRIs taken on a Tesla 3 MRI sent to Dr. Bolognese and am awaiting his response.

I don't want to get my hopes up too much though. Some people with no other hEDS symptoms have really bad CCI/AAI, and some people with lots of hEDS symptoms may not have instability there. So there's no guarantee that I'd be a candidate for surgery.

But without your and Jen's stories I wouldn't have known to investigate this.

Thank you!

 

[Gingergrrl]

Any one have more information on this? I will be incubated soon and have hEDS. @jeff_w

I think you mean intubated (not incubated)?! And wishing you the best for your surgery @Sushi

 

[Gingergrrl]

My husband has learned to drive at a very constant speed because it's the acceleration-deceleration (the jerky stop-go motion) that causes the pain for me.

Great to see you @GlassHouse and to read your update and I didn’t know that you and your bf got married (but you said “husband” so I wanted to say congrats)!!! I’m glad you are getting checked out for CCI/AAI and hope you will keep us updated.

 

[Sushi]

I think you mean intubated (not incubated)?! And wishing you the best for your surgery @Sushi

That was spell correct striking again. Sometimes you have to fight with it! I’ll correct it—thanks!

 

[Daffodil]

it is becoming obvious many more people here will end up being diagnosed with CCI. if not most. they are going to have to come up with something to help us aside from surgery because most of us will not get access to it. EDS people outside the USA have been trying to get govt's to approve their surgeries for years but i have not heard of anyone getting that done. this is why i didnt look into petitioning the govt here.

 

[Pondering]

it is becoming obvious many more people here will end up being diagnosed with CCI. if not most. they are going to have to come up with something to help us aside from surgery because most of us will not get access to it. EDS people outside the USA have been trying to get govt's to approve their surgeries for years but i have not heard of anyone getting that done. this is why i didnt look into petitioning the govt here.

I am from Canada as well so I am happy to assist. I actually did my MBA dissertation on building business cases for testing of rare medical conditions so I have a bit of a background. At the end of the day Canada is at a bit of a disadvantage when compared to many countries (based on my analysis from a number of years ago) due to the fact that we have a province based medical system which leads to a patchwork approach. Diseases that would be best served by some sort of coordinated effort seem to have historically not been addressed due to provincial squabbling over who gets the "centre of excellence".

First thing I suspect we will need is going to be a solid diagnosis before we will be able to get anyone to invest health care dollars and time. I see that EDS syndrome has got a clinical group and some money in Ontario and BC recently got a new head of its "Complex Chronic Disease Program" who came from the UK ME/CFS Biobank. Those might be targets.

My amateur googling/binging skills have failed to find any doctors that seem to treat or even diagnose CCI in Canada.

As I said elsewhere, I think this is going to require a researcher with funding to figure out. I think the best way to achieve that is to have some sort of formal/informal database of people, their validated diagnosis, their validated MRI's and their results. I think this approach might also protect patients. I really hope someone with some credibility can step in and host the data.

 

[valentinelynx]

I am not going to waste 8k on a halo for 48 hours

As I understand it, improvement with a halo is a requirement for Dr. Bolognese to perform surgery. I would be more concerned that I was wasting my money and subjecting myself to unneeded risk if I did not improve with a diagnostic procedure that produces relief of the cranial settling believed to be causing my symptoms. Perhaps not all symptoms would resolve with this, but if you have persistent pressure on your brainstem, relief of that pressure should produce some benefit.

 

[valentinelynx]

Also, I am thinking about Jen's issues worsening after anaesthetic when the neck is forcibly extended to intubate, and Jeff's screws coming out when the physio pulled on his neck - what if you get fused then at some point need another general anaesthetic? How could you be safely intubated without neck extension?

B xxx

I'm an anesthesiologist, so allow me to answer that... First of all, yes it is possible to intubate someone who has a fixed neck. These days many intubations are done with video laryngoscopy anyway, which does not require extension of the neck like direct laryngoscopy with a traditional laryngoscope. For people with severely distorted necks, sometimes fiberoptic intubation is needed. Furthermore, a lot of general anesthetics nowadays are done with a laryngeal mask airway (LMA) which does not require visualization of the laryngeal opening or extension of the neck.

In addition, depending on the surgeon and the procedure used for craniocervical fusion, some degree of neck motion is likely to be preserved. And even those who get the much more common procedure of cervical fusion (ACDF: anterior cervical diskectomy and fusion) afterwards usually have reduced neck mobility. For subsequent anesthetics, video laryngoscopy makes this typically not a problem.

The neck extension we anesthesiologists do is gentle and would not loosen screws like Jeff's overly aggressive PT's "adjustment". I've had that sort of thing done by a chiropractor—once—after that one time, no one was ever going to do that to me again!

If you have CCI/AAI, it's more of a concern if you are going to have an operation with intubation (or intubation for any reason) before you are fused, as neck extension can cause problems. It's very important that your anesthesiologist know about the issue ahead of time, to avoid neck extension.

 

[Daffodil]

@Pondering the problem is, the requirements are almost impossible to meet in ontario. they want a successful trial and publications. and if there is a trial that contradicts the successful one, the govt will refuse. lyme disease patients have had this problem for years while trying to access IV antibiotics here. EDS patients too.

there are doctors who have lost their license for attempting to treat Lyme patients with IV antibiotics

there is a well known attorney who spent 20 yrs working for OHIP. he left because he could no longer deal with the fact that almost everyone with a seemingly legitimate request for out of country care was denied. i have spoken with him about these issues

there is an EDS clinic at mt sinai in toronto...they do not do surgery. i am not sure what they do.....maybe counseling haha

british colombia is a little better than ontario but not sure how much better. i am not sure about the other provinces but i assume they are much like ontario - or worse. some have actually become paralyzed in canada, waiting for spine surgery.

our situation is reminiscent of the controverial MS surgery that was in the news several years ago.

of course it is beneficial to collect data, but we are up against a brick wall in canada. at least for the foreseeable future.

 

[valentinelynx]

i was considering trying atlas profilax but just didnt have the guts. i am glad there was no damage.

One more time I will try to bring this up. The last time I did, it was in the context of the "alternative medicine" sub-forum and I was shot down by a moderator for not respecting someone's beliefs. The thing is that the history of the so-called "AtlasPROfilax" adjustment is truly bizarre. It was apparently devised by someone who tells a story of alien enslavement of the human race by tweaking out atlas vertebra just-so, so that 99.9% of us have a "misaligned" atlas that limits our natural human strengths. Getting this magical one-time adjustment will bring back your true power, for life. Here's a link to this story. References to this origin story have become hard to find. Most of the links are now broken, so all I was able to find was references to it in postings in weird forums.

I looked at a page purporting to show a handful of studies supporting the use of AtlasPROfilax for various disorders (TMJ, fibromyalgia and cervicobrachialgia—neck and arm pain). Most of the publications were not in English (Spanish mostly). It appeared to me that none of them were controlled studies and all were "open label", meaning that all patients patients received the treatment under study. Some of the "publications" were things like a PowerPoint presentation or an unpublished monograph. None appeared to be in reputable journals.

My point being, I wouldn't recommend this fringe treatment.

 

[Daffodil]

@valentinelynx i agree....but things start to look different when you read that this person or that person got better with the treatment....and you are desperate enough lol. but i am glad i did not try it

i did try atlas orthogonal a few times and am glad i didnt continue to spend money on that

i didnt know the back story of atlas profilax! haha that is crazy

 

[valentinelynx]

@valentinelynx i agree....but things start to look different when you read that this person or that person got better with the treatment....and you are desperate enough lol. but i am glad i did not try it

i did try atlas orthogonal a few times and am glad i didnt continue to spend money on that

i didnt know the back story of atlas profilax! haha that is crazy

Oh I know. I've been willing to try all sorts of things because they helped someone, whether or not there was a scientific basis for it. If there's a low enough risk, I might try something based on a single anecdote. The higher the risk, the more evidence I want. In theory, anyway...