Jennifer Brea: I have craniocervical and atlantoaxial instability

[frozenborderline]

Ok, time for me to add another to the mix, I guess... The doctor @Gingergrrl and both see for ME/CFS treatment sent my (supine) cervical MRI (done for C6 radiculopathy a couple of years ago) to Dr. Bolognese, and he read it as possible CCI. I've been wondering whether it could be true because: a. I rarely have headaches anymore, and, b. I rarely have neck pain any more.

I did have a pretty dramatic trauma to the neck many years ago (a few years before the sudden onset of my ME/CFS symptoms), in which I fell on my neck during an Aikido fall (instead of landing on the shoulder and rolling out of it, I landed on my neck, with sudden severe pain and a stunned feeling). For many years after that I had problems with neck pain and spasms. This gradually improved and now only occurs if I spend too much time sitting with a laptop.

So, I'm wondering how essential constant neck pain is to a CCI diagnosis. I have EDS and plenty of other symptoms. Haven't really noticed any breathing issues, or changes in symptoms with neck position. I've had one session of PT with cervical manual traction, and I felt amazing after that, for several hours: like I was high on something good. We'll see if this occurs with repeated exposure, or with home traction & cervical collar use.

On the one hand, it would be great to know there's a reversible cause of my symptoms of the past 25 years... but the prospect of spinal fusion surgery, especially in the high cervical region, is rather terrifying!

Neck pain isn’t necessary for a cci diagnosis

 

[valentinelynx]

Be careful with doxycycline if it has passed its expiry date. While most drugs are perfectly fine even years after their expiry (according to a study I read about), doxycycline slowly degrades into a toxic breakdown product, so is the one drug that should be discarded at expiry.

I think this only applied to tetracycline, and it may no longer apply, since the manufacturing process was changed in the 1960's, as mentioned in this quote from this paper: "The renal toxicity of degradation products of the tetracyclines which are formed under the influence of heat, moisture, and a low pH has been investigated by Benitz and Diermeier 26 in rats and dogs. The only one of the three prod¬ ucts studied which produced renal tubular damage was anhydro-4-epitetracycline. This substance has been found when analysis has been carried out of the contents of capsules in the possession of patients exhibiting such tox¬ icity. Since all reports involved the ingestion of tetracycline to which citric acid was added and since some laboratory work has suggested that citric acid might also promote such break¬ down, this has been removed from subsequent preparations by the manufacturer.27

 

[Hip]

I think this only applied to tetracycline, and it may no longer apply, since the manufacturing process was changed in the 1960's,

I think that may be right; commenters in this Reddit discussion say that modern tetracycline no longer has a kidney toxicity issue after its expiration date:

Tetracycline can become toxic if it is expired

That's a common misconception. That type of tetracycline is no longer commercially available but in the 60s, expired tetracycline was associated with a specific kind of kidney damage.

Anhydrotetracycline and epianhydrotetracycline are the result of a dehydration process, in which a specific -OH group is cleaved off and leaves behind a double bond.

Modern tetracyclines are designed to not include that -OH group, providing stability and preventing that process from occuring. This results in a product that does not degrade into something nephrotoxic.

I can't find the media article I read many years ago which said that nearly all drugs are fine well past their expiry day except doxycycline. I guess the article author may have got it wrong on doxycycline.


This is the 2006 study that the military asked the FDA to conduct on drug stability: on testing 122 different drugs, they found that on average, drug shelf life could be safely extended for around 5 or 6 years beyond the stated expiration date.

 

[Gingergrrl]

@Murph @Diwi9 @Gingergrrl Do you have ways of balancing your energy flows, or how you approach posture, or any ways to resolve whatever it is that requires the "Indian style" sitting? Thanks.

I actually have never figured out anything that allows me to sit for a prolonged period of time w/my feet dangling (vs. sitting "Indian Style" or cross-legged). Yesterday in the hospital waiting room (during my dad's surgery), I had to sit Indian Style in the chair (and the chair was very small) until I finally found a bigger chair which was easier to sit that way. There was no way that I could have possibly sat w/my feet dangling down yesterday. And even now typing at my computer desk, it would be very hard for me to sit with my feet dangling down and I feel otherwise "normal".

I cannot even come up with an analogy to describe the difference but it would be like if you had to hold your arms straight above your head into the air and you just wanted to put your arms down at your sides where they belong. Holding your arms above your head is a known POTS trigger for many people (and definitely was for me). I think having your feet dangling down while sitting must be the same. Although now that I am better, I can force myself to do it most of the time but if given the choice, I will always sit cross-legged.

Ok, time for me to add another to the mix, I guess... The doctor @Gingergrrl and both see for ME/CFS treatment sent my (supine) cervical MRI (done for C6 radiculopathy a couple of years ago) to Dr. Bolognese, and he read it as possible CCI. I've been wondering whether it could be true because: a. I rarely have headaches anymore, and, b. I rarely have neck pain any more.

That is interesting and I have (almost) near constant neck pain but Dr. B viewed my MRI images and said that I absolutely do not have CCI or anything even remotely like it. I have radiculopathy and my prior cervical MRI (from 2010) said C3 & C4 but my more recent PT thought it was more C5-C6 (and then this recent cervical MRI (in Dec 2018) didn't mention radiculopathy at all which was weird! Actually, my arm pain was far worse in 2010 (from the Levaquin injury to my triceps tendon) but my neck pain is far worse now.

I did have a pretty dramatic trauma to the neck many years ago (a few years before the sudden onset of my ME/CFS symptoms), in which I fell on my neck during an Aikido fall (instead of landing on the shoulder and rolling out of it, I landed on my neck, with sudden severe pain and a stunned feeling).

Holy ... that sounds horrific

So, I'm wondering how essential constant neck pain is to a CCI diagnosis.

I don't think it is essential at all b/c I have (almost) constant neck pain and I do not have CCI (although I guess that is actually the opposite of what you are asking

 

[Hope4]

@Gingergrrl Thank you so much. . Arms straight above my head for more than a passing second does trigger imbalance, feeling uneasy, even woozy. I am going to see what I can do in my exercises/stretches to work on this. I really appreciate your posting.

 

[Gingergrrl]

@Gingergrrl Thank you so much. . Arms straight above my head for more than a passing second does trigger imbalance, feeling uneasy, even woozy. I am going to see what I can do in my exercises/stretches to work on this. I really appreciate your posting.

I'm not really sure if there are any exercises or stretches that would change this if the trigger is POTS/ Dysautonomia? When my overall autoimmunity and POTS drastically improved from treatments, this improved, too, but I don't think any kind of stretches or exercises would have changed it (in my case). But I am curious what you find out b/c it is still challenging for me to sit with my legs dangling down in a chair and I always prefer to get a booth in a restaurant (vs. a table) so I can sit cross-legged and no one sees!

 

[Hope4]

@Gingergrrl Thanks for your post. . If I discover something helpful, I will post about it.

 

[Mel9]

You need to be flexible to sit cross legged

I tend to find a convenient wall and sit on the floor, legs straight.

 

[valentinelynx]

I actually have never figured out anything that allows me to sit for a prolonged period of time w/my feet dangling (vs. sitting "Indian Style" or cross-legged). Yesterday in the hospital waiting room (during my dad's surgery), I had to sit Indian Style in the chair (and the chair was very small) until I finally found a bigger chair which was easier to sit that way. There was no way that I could have possibly sat w/my feet dangling down yesterday. And even now typing at my computer desk, it would be very hard for me to sit with my feet dangling down and I feel otherwise "normal".

I cannot even come up with an analogy to describe the difference but it would be like if you had to hold your arms straight above your head into the air and you just wanted to put your arms down at your sides where they belong. Holding your arms above your head is a known POTS trigger for many people (and definitely was for me). I think having your feet dangling down while sitting must be the same. Although now that I am better, I can force myself to do it most of the time but if given the choice, I will always sit cross-legged.



That is interesting and I have (almost) near constant neck pain but Dr. B viewed my MRI images and said that I absolutely do not have CCI or anything even remotely like it. I have radiculopathy and my prior cervical MRI (from 2010) said C3 & C4 but my more recent PT thought it was more C5-C6 (and then this recent cervical MRI (in Dec 2018) didn't mention radiculopathy at all which was weird! Actually, my arm pain was far worse in 2010 (from the Levaquin injury to my triceps tendon) but my neck pain is far worse now.



Holy ... that sounds horrific



I don't think it is essential at all b/c I have (almost) constant neck pain and I do not have CCI (although I guess that is actually the opposite of what you are asking

LOL! Thanks for the thought!

The reason I had the MRI done in 2016 was because I was having radiculopathy in my right arm (C6). This correlated nicely with the foraminal stenosis at right C6-7 shown on the MRI. The remarkable thing was that the transforaminal epidural steroid injections eradicated the numbness and pain in my right arm and thumb and it never returned! Our doctor was concerned that it might be radiculitis from tick-borne infection, but I thought the positive MRI finding of neuroforaminal stenosis was adequate explanation. Now, I wonder. You see, and you've probably heard this before, but MRI findings frequently do not correlate with patient's symptoms. You can have an awful looking bulging disk and no symptoms, or you can have symptoms of spinal cord or nerve root compression without clear MRI findings. When the two do match up, however, it is helpful for determining the best treatment.

Because of this lack of correlation between MRIs and symptoms, I'm thinking maybe it is possible to have a squished brain stem without much pain. I have to say, however, that now that I'm going through this diagnostic protocol, I'm much more aware of my neck. It does hurt some, especially after sitting with a computer for awhile and it has a lot of muscular tightness. It's just not as bad as it used to be.

Although now that I am better, I can force myself to do it most of the time but if given the choice, I will always sit cross-legged.

Hmm. I hadn't really thought about it before, but I'd rather sit on the floor any day than sit in a chair like a normal person.

 

[JenB]

Just chiming in...NO single symptom is required for a CCI diagnosis. The cluster of symptoms people have differ and likely depend on which ligaments are lax, how the head is unstable, and thus which areas of the brainstem and which peripheral nerves are affected.

After the first 18 months, I rarely had headaches and I never ever had neck pain or any neck symptoms. C1, C2 are best thought of as a liminal, transitional space between the brain and spinal cord. If this area is affected, many of the symptoms will appear to be emanating from the brain.

 

[NinaV]

Could anyone PLEASE help with putting together an information sheet/package about CCI for upcoming doctor's appointment? Have an appointment soon and my brain fog is preventing me from putting together all the relevant scientific studies and arguments to put forward. Given the newness of this connection to CFS, I foresee great reluctance from doctors to order the necessary testing. I'll greatly appreciate any assistance!

 

[EnlightenME]

Could anyone PLEASE help with putting together an information sheet/package about CCI for upcoming doctor's appointment? Have an appointment soon and my brain fog is preventing me from putting together all the relevant scientific studies and arguments to put forward. Given the newness of this connection to CFS, I foresee great reluctance from doctors to order the necessary testing. I'll greatly appreciate any assistance!

Me too please, takes so much time and energy to compile accurate and complete summary for doc unaware of this issue and its intricacies.

 

[rel8ted]

Could anyone PLEASE help with putting together an information sheet/package about CCI for upcoming doctor's appointment? Have an appointment soon and my brain fog is preventing me from putting together all the relevant scientific studies and arguments to put forward. Given the newness of this connection to CFS, I foresee great reluctance from doctors to order the necessary testing. I'll greatly appreciate any assistance!

You have got to find someone who believes you if you have insurance that requires a referral. I had no problem getting an appt with a neurosurgeon or at the imaging center. My issue now is that my primary thinks the insurance will reject the request for "so many images outside the routine" and is refusing to write the order for the images. Most of the neurosurgeons require imaging prior to the first visit and cannot write the order without first seeing you. You need a lot of tenacity and creativity to navigate this road.

In my case, the imaging is not required, but the imaging center my surgeon uses is 3 hours in the wrong direction & I wouldn't be able to get in the same day. It's about 7 hours one way to my surgeon, so going back another day is out of the question.

 

[EnlightenME]

You have got to find someone who believes you if you have insurance that requires a referral. I had no problem getting an appt with a neurosurgeon or at the imaging center. My issue now is that my primary thinks the insurance will reject the request for "so many images outside the routine" and is refusing to write the order for the images. Most of the neurosurgeons require imaging prior to the first visit and cannot write the order without first seeing you. You need a lot of tenacity and creativity to navigate this road.

In my case, the imaging is not required, but the imaging center my surgeon uses is 3 hours in the wrong direction & I wouldn't be able to get in the same day. It's about 7 hours one way to my surgeon, so going back another day is out of the question.

I have a long history with problems with my C1 and base of skull, even confuses my chiropractor,
Ok so let’s say I could find the money to go to the US for appointment and imaging. I heard not just anyone can read it well. Where would I go? Who would I see? I have no insurance so all out of pocket for me.

 

[dreampop]

@JenB

Jennifer, I haven't been able to follow all these threads as I have been quite unwell. Have you continued to remain your remission? What limitations do you face in neck mobility and what activities are you unable to perform? Are there any other patients that have gone through the surgery other than Mattie for me/cfs?

Thanks

 

[humanrising]

It is possible that you were tested and our doctor tested me (separate from me having a one-off consult with Dr. Chia). I went to Lab Corp but he wrote on the order that the tests must be sent to ARUP labs and we had researched to make sure we had the proper codes. So it is possible that you have done the testing which would be for "Coxsackie" and "Echo" viruses.

Edited to add: I was positive both times that I tested for CB4 and Echo virus 11 but at low levels that most likely indicated a past infection (although no way to ever know for certain).

wondering if anyone has had this test with ARUP and got it covered by "medicare". I looked the test up and its 440.00 just can't afford that. thanks so much!

 

[ebethc]

Just chiming in...NO single symptom is required for a CCI diagnosis. The cluster of symptoms people have differ and likely depend on which ligaments are lax, how the head is unstable, and thus which areas of the brainstem and which peripheral nerves are affected.

how do you know if the ligaments are lax? I don't have EDS, and was just dx w foraminal narrowing, disc bulging causing cervical stenosis (in c5-c7)

 

[JenB]

how do you know if the ligaments are lax? I don't have EDS, and was just dx w foraminal narrowing, disc bulging causing cervical stenosis (in c5-c7)

My neurosurgeon explained that that is the only way I could have that much mobility in my craniocervical junction. It’s the ligaments that keep the skull, C1, C2 in normal relationship, assuming you don’t have bone erosion or a congenital issue, which I did not.

 

[ebethc]

My neurosurgeon explained that that is the only way I could have that much mobility in my craniocervical junction. It’s the ligaments that keep the skull, C1, C2 in normal relationship, assuming you don’t have bone erosion or a congenital issue, which I did not.

How do you know if you have too much mobility in the cc junction?
How do you know if the skull, C1, C2 are in normal relationship? I had a cervical MRI, (supine, no contrast) so presumably it would show up in this image??

thx

 

[Malea]

My neurosurgeon explained that that is the only way I could have that much mobility in my craniocervical junction. It’s the ligaments that keep the skull, C1, C2 in normal relationship, assuming you don’t have bone erosion or a congenital issue, which I did not.

@JenB Would that probably mean that even when someone is underweight from malnutrition and has immense muscle loss from being bedridden, there would be no instability just from that? That there *has* to be ligament laxity?