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

jeff_w

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Hi, @fredam7

I have not seen anything regarding how these fusiins are being done specifically.
There’s a lot information about this online. Here are some links.

CSF Colloquium: Various Forms of Craniocervical Stabilization

Chiari I Malformation, EDS, and Craniocervical Instability

Why are there this many repeats or re-dos? Is anyone tracking this ?
Fortunately, there are not many re-dos. If re-dos were common, I would honestly and bluntly warn you about this.

I noticed a number of people having multiple surgeries . One said the PT made a false move and he had to get another surgery in the same area.
That guy was me. I was injured by a completely inappropriate PT maneuver. If people stay away from incompetent PTs, then they won’t have to worry about this problem. She literally, without warning, gripped and twisted my fused skull! Ridiculous.

As for your concern about multiple surgeries, people who need CCI surgery often have hypermobility in many segments of their spines, due to EDS. For people with EDS, generalized spinal hypermobility is very common, especially in the cervical and lumbar areas. The best neurosurgeons are surgically-conservative and will not offer fusions for areas of mild hypermobility that aren’t symptomatic.

Sometimes, people’s spines continue to become progressively more hypermobile as they go through life, due to EDS and general aging. So, you might see people need multiple fusions in different areas, due to their genetic generalized spinal hypermobility.

Another factor is that a fusion can cause more stress on adjacent levels of the spine. My neurosurgeon says that when a person is fused skull to C2 (as I am, for CCI/AAI), there’s not much risk of lower levels failing, aka the “domino effect.” However, he said that once you’re fused below C2, you can become more vulnerable to the domino effect.

To help guard against developing further instability, a competent physical therapist is invaluable.

another I think had a tethered cord and I'm wondering why that wasn't seen earlier or was it a consequence of the surgery and another spine surgery.
As for your concern about a tethered cord, a tethered cord is actually a comorbidity of CCI. It's something you're born with. In other words, the people with a tethered cord are the same people who get CCI. A tethered cord is usually not identified prior to CCI surgery, because when someone has CCI, their cord has more slack. Once the CCI is corrected, the congenitally-tethered cord becomes more apparent. This is why most people undergoing CCI surgery will also have tethered cord surgery, as both Jen and I did.

My concerns are many but I want to put out this message about the biologic and I have very good reason and I want people to be aware . Maybe they're not using it or maybe no one is asking . It is important .
Ah, yes, it is important to ask questions, to be aware of potential pitfalls, and to cultivate a healthy skepticism.

Sometimes they insert a cage as it was easier to push the device through than a biologic but the biologic is in the cage on a sponge .
There are no cages used in CCI fusion surgery. No sponges, either.

The biologic damages almost everyone . Causes intractable pain and many disorders so i just want to put that out there
I see you’re referring to bone morphogenetic protein (BMP), and I haven't evidence that it "damages almost everyone." There is ongoing medical debate about BMP, and it's important to research any potential treatment, as best as we can. There are many scholarly articles freely available to anyone who wants to research this issue, in depth. Here's one article, specifically discussing issues related to BMP dosing:

Exploratory meta-analysis on dose-related efficacy and morbidity of bone morphogenetic protein in spinal arthrodesis surgery.

I don't want to get into bmp because ill
Have ptsd meltdown .
Sorry to hear it. I think many of us can relate to medical trauma.

It's very common to be used in fusions but should never be used in a posterior surgery and not in the neck at all .
My understanding, from researching this, is that BMP is officially contraindicated only for anterior cervical procedures. A fusion for CCI is done posteriorly. So, BMP isn’t contraindicated for CCI surgery. See this article, which addresses the use of BMP in the type of fusion that I had:

Use of Recombinant Human Bone Morphogenetic Protein-2 at the C1-C2 Lateral Articulation without Posterior Structural Bone Graft in Posterior Atlantoaxial Fusion in Adult Patients

There was an entire issue of spine medicine dedicated to the dangers of this biologic that dr's were shoving into people's spines , often without the patients knowledge.
If someone is uncomfortable with having BMP in their spine, then they should just tell their neurosurgeon to not use it. My neurosurgeon believes BMP gives patients a better fusion. But, he will not use it if a patient doesn't want it. Some patients have declined to use BMP. He respects that choice and will instead use regular bone graft.

Prior to surgery, I had full knowledge that BMP would be used. My insurance company approved it, so it was listed in plain text on my insurance authorization approval. I chose to consent to having BMP, because, in my opinion, the risk-benefit ratio favored using it.

I get the agony of the neck . I'm losing my hearing , my neck is torturing me , my head is heavy , my eyes hurt , when I turn my head I want to throw up, I get it , I can't breathe well either , my arms go numb and wake me up 100 times . On and on. I get the desperation . And maybe I'll die in my sleep from not being able to breathe. I don't know
I was once where you are right now, including the desperation and stopping breathing in my sleep. What kept me safe during that time was a medical-grade pulse ox, with an alarm set to wake me up when my vitals would plummet. I highly recommend getting one, if you can. It could save your life. Medical supply stores carry them. Mine cost about $250.

Since I no longer need that pulse-ox, I lent it to a fellow person with ME who has been struggling. I can check and see if she still needs it. If she doesn’t, I can ask her to mail it to you, if you’d like.

You could also try wearing a cervical collar while sleeping, if you’re comfortable trying that. It’s very low risk. I have spoken to quite a few others who were helped by doing that.

Personally, I wouldn't trade anything in the world for a fusion and restored health. Sometimes, I feel like the luckiest guy alive -- to have lived through hell and come out of it restored to health.

Once I realized I had brainstem compression, that it was ruining my life, and that it would never self-correct, I couldn’t get surgery fast enough. To me, not relieving the brainstem compression was much scarier than having a fusion. By far. Why, when given a choice, would I choose to waste away in bed with a crushed brainstem? I wasn’t going to keep my brainstem in that state. This was especially true after I researched skull to C2 fusion complication rates, which are low, and later spoke with so many people who had good outcomes from their fusions. They could once again drive, work, play, and live.

But we all have to do what we feel is best for ourselves. People have very different ideas about which risks are worth taking. If the thought of a fusion scares someone, then by all means don’t have one. If it’s specifically the bone morphogenetic protein (BMP) that scares someone, then just tell the neurosurgeon to not use it.

If you are terrified of a fusion, then the good news is that nobody will ever force one on you. You need to do what you feel is best. You are in complete control over your own choice here. And so is everyone else who is reading this thread.
 

Sparrowhawk

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But we all have to do what we feel is best for ourselves.
That's the core truth right there. I've been on this board for going on seven years, and some folks have found their way to health, as far as I can tell from an incredibly wide variety of pathways into and out of illness.

Thank you @jeff_w for sharing your journey so eloquently and compassionately, and for staying engaged the way you have after making it to where you have. You are an inspiration.
 

fredam7

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@jeff_w

I wanted to put out just the word on bone morphogenetic protein because people in pain, may say ok when a surgeon suggests bmp helps fusions. It might even sound good to some . Sometimes, surgeons conceal the use of it entirely.

I didn't find bmp mentioned once on this board. I didn't see where anyone wrote by the way, bmp is involved , make sure you're informed on the risks. Shouldn't people who have had the surgery , who have done so much research on bmp, mentioned it's use and serious potential damage as part of presenting these surgeries as life savers?

I am not terrified of a fusion I have no plans on having. But it is not so simple as saying people make their own decisions, let me just worry aboyt myself. People have been strapped to a bed for years, desperate, makes people vulnerable, angry and many have entertained all kinds of remedies and risks or worse.

Some people see they have no quality of life, doing something very high risk might seem like the last resort , as in why not, I can't exist like this anyway? Well, because that little insurance policy if it doesn't pan out I can just do X, might not be so easily done , especially incapacitated and then one has to face a horrid existence, much worse than the one they knew. That is a possibility.

It is every human's responsibility to ensure the well being of their fellow human beings, how much misery can be averted if people did the most basic things? Yes, the final decision is with the individual but we are all here to share information in the hopes to help one another.

I'm aware some people have serious damage in their spines of all sorts . It's horrible and painful and can be totally incapacitating.

To each her or his own is not my take or I wouldn't post about bmp to my own detriment because as I asked , I didn't want to discuss bmp. But the information is inaccurate so I will say a few things.

Bmp is only approved to be used for single level fusion in the lumbar spine with an anterior approach . Any other use is off label so it's incorrect to say it's ok for posterior use in cci surgery.

And let me stress that the approval bmp
does have, was based on fabricated data and it was submitted as a device and not a biologic because biologics require testing and data that the anti-human dr's who fabricated the data, couldn't manage as the results were so terrible. So even the anterior lumbar fusion approval, is based on grossly false data.

There is not controversy , there is a mountain of hard evidence of how dangerous bmp is. Stanford did an in depth review of the bmp trials . It was proven that dr's fabricated data, reported no adverse events, tossed out case after unfavorable case. In fact, the studies went so poorly , they had to stop and re-start the studies multiple times.

in the end , the dr's saw fit to just fabricate the data as they couldn't obtain positive results . They were paid millions. These are facts.

Here is a start if anyone is interested . My effort is to warn people and I hope they do intense research on this.

https://med.stanford.edu/news/all-n...medical-journal-and-its-stanford-editors.html

Good links and important article
https://www.medpagetoday.com/orthopedics/orthopedics/45827

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3717531/#!po=37.1212

https://www.ncbi.nlm.nih.gov/m/pubmed/21729796/

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On the issue of repeat or additional surgeries after cci , I think you can appreciate that there is a great difference between the fact that once a person gets spine surgery , they are set up for another one in the next decade and that it puts stress on the adjacent vertebrae etc vs people getting cci surgery then needing another one within the first year! Within the first 3 months .
Yes, having eds, adds a number of additional risks.
----
I'm sure it must be very scary to have had this fusion and probably terrifying at times . Everyone wishes you nothing but the best. Sorry the PT did that to your neck. I would add to not let anyone touch your head or neck, it takes very little to cause problems post fusion.
 

fredam7

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@jeff_w i missed parts of your post . I read it yesterday after eating and well, I'm very confused after eating . I replied now before any food which I'm slightly better in this state. But I saw there was more and just read it.

I will try the collar suggestion . I won't have surgery for complicated reasons . I appreciate the pulse monitor offer, very generous of you . I worry too much time in a collar might worsen me .
But I have been considering a collar to have a few better days, possibly . Not sure which collar is appropriate.
 

jeff_w

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Hi @fredam7
I will try the collar suggestion . I won't have surgery for complicated reasons . I appreciate the pulse monitor offer, very generous of you . I worry too much time in a collar might worsen me .
But I have been considering a collar to have a few better days, possibly . Not sure which collar is appropriate.
There are various choices. I'd recommend the Aspen Vista collar. It's padded, adjustable, and can be bought online. The Miami J has a padded version as well, which some people prefer. Good luck with this!
 
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I will try to describe it accurately :)
¨Braces¨
Laying on back (on bed or floor)
Knees up, feet on bed
If you imagine trying to suck in the LOWEST part of your pelvis area where the zipper of the jeans are, that is the area you want to pull in
At the same time, sort of push the small of your back into the bed and slightly tuck your pelvis up - you do not want a large curve in your back, you do not want space between your low back and your bed
So tighten that super low core, slightly tuck your pelvis in/up and push the small of your back into the bed so there is no space between your back and the bed/floor
Hold for 5 seconds (if you can, at first I could not)
Now, I did these for years off and on and had not done them for a while

I also do these ¨braces" throughout the day while I am reclining in bed or recliner and actually started this way a couple months ago before moving to the more formal lay on your back, knees up. I would not have been able to do those kinds if I had not already been bracing throughout the day for a while (built up a little strength).

So after I began with the braces on the floor/bed with knees up again - and after doing them for a couple of weeks I added in something I would never have thought I could do:
Marches

So as you hold your ¨brace¨ you slightly lift one foot up off the bed/floor - at first only a few CMs but now I can do an inch. Hold for 5 seconds. Then I rest a few seconds and do the other leg.

I hope this makes sense. I will see if I can find pics on line and will add a link if I do. I do have a handout but I would have to find it (which I can at some point), make sure that I hide my identifying info and then scan so that might take me some time.

These have really helped me along with my other ¨exercises¨. If I were just starting out, I would not start with the laying on the floor with knees up - I would start just holding that ¨brace¨, the contraction of the correct TVA muscles, for up to 5 seconds throughout the day while reclining. But I am only able to recline most of every day - your fitness level may be better than that.



That would probably be good to have a higher Tesla as I said Dr. Bolognese said .3 is very poor quality!
Yes, I am in the US.
Oh, I am so sorry and I hope you can find someone to work with a US doc! Best best best wishes :)
thank you so much this is very helpful (as well as the details in your latest post). I’m doing these exercises now :)
 
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On a separate note, I was wondering if CCI can actually cause severe neck stiffness? I ended up in an NHS hospital at the weekend (long story) was treated atrociously and told to do “distraction techniques”. It was St George’s btw, would urge all U.K. residents to never go there and never see a neurologist there. They’re obsessed with “neuro psychology “.
Anyway the one “finding” they had is that my neck is very, unusually stiff. Isn’t that the opposite of CCI?! Any thoughts?
In any case im having my MRI today so will let you all know what happens!!
 

JenB

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On a separate note, I was wondering if CCI can actually cause severe neck stiffness?
Yes, I think it can. A few times a year, I used to end up in the ER with terrible pressure behind my eyes and severe neck stiffness. I now recognize this as symptoms associated with my CCI. In particular, the neck stiffness was probably my muscles trying to stabilize the craniocervical junction for dear life. People with EDS can get (muscle) stiffness around certain joints in an attempt to compensate for laxity/weakness of the connective tissue (ligaments/tendons).
 

StarChild56

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thank you so much this is very helpful (as well as the details in your latest post). I’m doing these exercises now :)
Oh wow, I am very glad that they are helpful! :hug:
As ill and weak as I am, I can tell how much stronger my inner core and my traps are - I can now do a second variation of the scap squeeze that was impossible weeks ago. It certainly helps that most are done laying down and I can break up the ones I have to sit upright into small amounts throughout the day.
 
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Hi, so I got results of my MRI back. I did my brain and whole spine 3T. It came back as minor spondylosis in my lower spine but everything else normal in my spine, and in my brain some immune issue causing changes that could be Graves’ disease.
But.. nothing about chiari or CCI. My question is this. I had separate scans of my brain and spinal cord (all in one sitting). Is that sufficient to measure the Craniocervical junction which is what is needed for CCI/Chiari. I’m guessing so? I don’t need more scans do i?! I’m going to send to Dr B and G but first I suddenly had this doubt! I couldn’t do the upright craniocervical junction scan as I cant sit up. That’s why it’s supine.
 

debored13

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I am really praying that the upright mri w dlexion ans extension (we forgot to get rotation!!, something I really regret) will be enough for gilete for diagnosis. I do not want to get an additional rotational ct ans woukd peobnaly just ask if I could return to the same mri place and do rotational imaging only. I am hoping we can get a report from him in a week or two. I know he normally requires rotational views but it seems bolognese sees enough on my imaging, so maybe gilete will see enough. I’m on bologneses waitlist for an appointment but I’m getting so sick that it’s hard to wait very long. I have to travel for mcas-related reasons and really wanted to have an official diagnosis in hand before traveling , in case I have to go to the ER. I’m also thinking it will really help my ssi case, which is sorely needed. ANs of course I’m considering surgery but also looking at stem cell treatment.

I’m wondering if there’s any luck of a spot opening up on bologoneses waitlist. Anyway , I don’t know. Cci worsening, ton of pain.
 

Remi

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Anyone try the neck saviour?
I tried it today. It gives great relaxation, my neck has much more movement now. I should stress that I haven't been tested for neck issues yet. I recognise some of the symptoms of CCI, but not all. I don't have POTS, but do have self-diagnosed dysautonomia.

The maximum traction it gives is 11 kg, so lowest "medical" traction as per leaflet. I will continue to use it and report back if there is any improvement in symptoms.

collage2.jpg
 

GypsyGirl

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I am really praying that the upright mri w dlexion ans extension (we forgot to get rotation!!, something I really regret) will be enough for gilete for diagnosis. I do not want to get an additional rotational ct ans woukd peobnaly just ask if I could return to the same mri place and do rotational imaging only. I am hoping we can get a report from him in a week or two. I know he normally requires rotational views but it seems bolognese sees enough on my imaging, so maybe gilete will see enough. I’m on bologneses waitlist for an appointment but I’m getting so sick that it’s hard to wait very long. I have to travel for mcas-related reasons and really wanted to have an official diagnosis in hand before traveling , in case I have to go to the ER. I’m also thinking it will really help my ssi case, which is sorely needed. ANs of course I’m considering surgery but also looking at stem cell treatment.

I’m wondering if there’s any luck of a spot opening up on bologoneses waitlist. Anyway , I don’t know. Cci worsening, ton of pain.
I'm sorry to hear you're doing poorly :( Does Dr. Gilete require upright rotational imaging, or would a rotational CT do? Maybe you wouldn't have to schlep to the upright MRI location again.

If I may ask, do you know if Dr. Gilete reviews imaging (like Bolognese, before setting appointments), and if/what the fee is for reviewing imaging is?
 

debored13

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I'm sorry to hear you're doing poorly :( Does Dr. Gilete require upright rotational imaging, or would a rotational CT do? Maybe you wouldn't have to schlep to the upright MRI location again.
I wish I could do a rotational ct but I’m not sure I have a doctor willing to order it except the (our of network ) family friend who can’t do insurance preauth s. So the upright mri (600$) might Ben cheaper out of pocket than a ct scan out of pocket. I’m kind of worried about holding the rotation for as long as I will have to though. That’s why a rotational ct would be nice. Anyone know if a rotational ct would be likely to be approved by insurance without an initial denial /hassle, and if out of pocket places ever have thhen for less than 1000$?
If I may ask, do you know if Dr. Gilete reviews imaging (like Bolognese, before setting appointments), and if/what the fee is for reviewing imaging is?
gilete review imaging before setting appointments. Fee for basic report 250 euros, fee for official medical report 600 euros.
 

GypsyGirl

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I wish I could do a rotational ct but I’m not sure I have a doctor willing to order it except the (our of network ) family friend who can’t do insurance preauth s. So the upright mri (600$) might Ben cheaper out of pocket than a ct scan out of pocket. I’m kind of worried about holding the rotation for as long as I will have to though. That’s why a rotational ct would be nice. Anyone know if a rotational ct would be likely to be approved by insurance without an initial denial /hassle, and if out of pocket places ever have thhen for less than 1000$?
gilete review imaging before setting appointments. Fee for basic report 250 euros, fee for official medical report 600 euros.
Ah, I see the challenge now. A rotational CT would be much easier on your body, for sure.

To get a doctor to order it for me, I gathered all the info I could about how to actually do it, including one of the EDS neurosurgeons' rotational CT form letter so my doc would know exactly what to ask the radiologists. Then I gave her the medical papers and a short summary explaining why it's a medical necessity. And some examples of what it looked like in axial and 3d views for the radiologist to reference. Would you like me to send that to you?

I'm going thru billing/medical coding classes and could probably find the codes needed to order it too, since you're already dx-ed with CCI. The only thing your doc would have to do is check my notes and order it. The info might be enough to prove medical necessity to your insurance too.
 

debored13

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To get a doctor to order it for me, I gathered all the info I could about how to actually do it, including one of the EDS neurosurgeons' rotational CT form letter so my doc would know exactly what to ask the radiologists. Then I gave her the medical papers and a short summary explaining why it's a medical necessity. And some examples of what it looked like in axial and 3d views for the radiologist to reference. Would you like me to send that to you
sure that would be helpful. One of my specialist cfs docs may be willing to order it but I’m hoping there’s no rigamarole w pre-authorization as I have somewhat limited time.
I'm going thru billing/medical coding classes and could probably find the codes needed to order it too, since you're already dx-ed with CCI. The only thing your doc would have to do is check my notes and order it. The info might be enough to prove medical necessity to your insurance too.
ah, I haven’t been officially diagnosed w/ cci yet. What I noted is that bolognese doesn’t accept patients who have not had cci show up on scans, usually , and i have been accepted by bolognese as a patient. But I don’t have appt w him until June 3rd. Besides wanting a second opinion or2 , part of the point of getting the rotational imaging is so that I can get an official diagnosis sooner, as gilete seems to work fast. Part of the reason this matters is that I need to travel to get away from mold (yes I know I said I’m bedridden but we have van rigged up to be like medical transport vehicle). At this point I think that if I don’t have an official diagnosis of cci and I get suddenly worse and have to go to ER or be hospitalized I’m pretty much screwed. Even though bolognese did send email saying to wear a hard collar, so we could at least show that st ER.

So Id like to get This done fast as it is really imperative to get out of here within the week. The upright mri place books really fast, but I kinda wanna get a ct so as to not worsen too much. I am wondering if there are places Forn 3D cts that are private and not attaches to a hospital, like the mri place I went to. In fact, I could broaden the geographical scope of the place I’m looking to get a ct in. I live in the noretheast US, but we were considering traveling to a location in Virginia, one in south Caroline, or to the west, for a mold sabbatical. If anyone knows of imaging places that match these requirements but in those locations, lmk. And if there are any tips for recovering from the rotation , lmk too. I am pretty desperate Rn
 

GypsyGirl

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sure that would be helpful. One of my specialist cfs docs may be willing to order it but I’m hoping there’s no rigamarole w pre-authorization as I have somewhat limited time.
PM-ing this info.

ah, I haven’t been officially diagnosed w/ cci yet. What I noted is that bolognese doesn’t accept patients who have not had cci show up on scans, usually , and i have been accepted by bolognese as a patient. But I don’t have appt w him until June 3rd. Besides wanting a second opinion or2 , part of the point of getting the rotational imaging is so that I can get an official diagnosis sooner, as gilete seems to work fast. Part of the reason this matters is that I need to travel to get away from mold (yes I know I said I’m bedridden but we have van rigged up to be like medical transport vehicle). At this point I think that if I don’t have an official diagnosis of cci and I get suddenly worse and have to go to ER or be hospitalized I’m pretty much screwed. Even though bolognese did send email saying to wear a hard collar, so we could at least show that st ER.

So Id like to get This done fast as it is really imperative to get out of here within the week. The upright mri place books really fast, but I kinda wanna get a ct so as to not worsen too much. I am wondering if there are places Forn 3D cts that are private and not attaches to a hospital, like the mri place I went to. In fact, I could broaden the geographical scope of the place I’m looking to get a ct in. I live in the noretheast US, but we were considering traveling to a location in Virginia, one in south Caroline, or to the west, for a mold sabbatical. If anyone knows of imaging places that match these requirements but in those locations, lmk. And if there are any tips for recovering from the rotation , lmk too. I am pretty desperate Rn
It makes sense to gather all the possible diagnostic pieces asap and get the diagnosis as a safety measure for emergencies, and I totally get your reasoning.

Been there with the mold. :/ Again - totally get it.

I checked for "radiology, CT machine, Vermont" and got no hits that weren't in a hospital. Found a few in Massachusetts. I'm in North Carolina (Raleigh/Durham area), and I know of two locations (not hospitals) where people have reported having a rotational CT done. If you end up going to South Carolina, maybe you can hit NC for a CT scan on your way down. Named the locations in my PM for you.
 
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Yes I do - well I am officially diagnosed with it (hypermobile type) by a genetecist, and some features about me & my past medical history and family members do seem to fit - however I have never been particularly hypermobile, and only became ill very suddenly after a forceful valsalva in 2014. I am not 100% convinced of the diagnosis myself, I pursued it as a possible reason for me having severe POTS. It hasn't led to any treatment but I do believe it has been helpful as an officially recognized label in terms of disability benefits and interaction with healthcare services.

How about you, do you have it or think you might?

B x
Hi @bombh3ll sorry I forgot to reply to this! I have never been diagnosed and don’t think I have it either. Although I have many of the incidental symptoms such as issues with hormone medications, bladder/stomach issues and autonomic issues, I have no hypermobility anywhere except except very slightly on my elbows. The EDS criteria were changed in 2017 and I had a look at it, I don’t fit that criteria, although I’ve been too unwell to actually travel to be seen by anyone. My mums been seen by a specialist up in London who confirmed she does not have hypermobility or EDS. As far as I know neither does anyone on my dads side. I was just curious as it seems it’s mostly people with Eds who seem to have CCI. Also, it looks like UK doctors won’t perform surgery purely because patients have Eds, which is horrendous!