Cervical Instability Questions

[babettess]

I recently posted about how neck pain makes my autonomic symptoms worse. I discussed this with my Physical Therapist and he is concerned that I might have cervical instability. He wants me to see my family doctor and have flexion/extension Xrays and one done through my mouth while it's open.

Background-I have had whiplash injuries from two car wrecks, recently diagnosed with EDS(although the signs/symptoms have been around since I was a child), bone spurs on C-4 and C-5 and also have fibromyalgia. My geneticist has suggested a standing MRI to rule out Chiari Malformation but so far I haven't found a doctor who will order that. Of course I also have hyperadrenagenic POTS.

My symptoms include:

Neck pain in the back, sides and front of my neck

intense pain when C-2 is pressed on

extreme tightness of the muscles in the front/sides of my neck to the point that they are visible

shoulder pain and tightness

pain between the shoulder blades

(Multiple trigger points in all the above areas)

tight feeling in throat that makes me feel like my air is being cut off, but O2 is always normal

one shoulder is obviously held higher than the other

Head sits on neck tilted a little to one side

Some days feel like my head is a cantaloupe and my neck is a toothpick trying to hold it up

can only look up if I support the back of my head or I feel like my head is going to fall off my neck

muscles are too weak sometimes to lift my head off the pillow if I'm lying directly on my back

trouble coordinating a swallow- especially with liquids

spells where I feel like I can't get enough oxygen

floaty feeling

dizziness/wooziness/off balance feeling

some numbness/tingling in hands/fingers if I sleep wrong

floaty feeling/swallowing difficulty/air hunger/palpitations/ feelings intensify if I flex my neck forward either while lying down or sitting up

headaces ususally only during my menstrual cycle

I haven't listed all POTS symptoms as I just listed what I think might be neck related.

So for those of you with knowledge of cervical instability---

Do these symptoms sound like they could be instability?????

What kind of a doctor diagnoses it?

Do most radiologists know how to read the XRays?? (I live in a very rural area. Xrays won't be read by a radiologist who sees "zebras" very often.)

Any ideas as to what I can do to help the instability or things I need to specifically avoid until I can get checked out by my doctor and Xrays?

Thanks so much for reading this. I know most of the people here are more knowledgeable than our doctors so I really value all opinions.

Babette

[mkoven]

I have eds and a variety of neck/spine issues that may be influencing ans stuff-- a small chiari, retroflexed odontoid, tethered cord, stenosis. You need the geneticist (Francomano) to order the mris. Since you are in MD, perhaps you could see Dr. Fraser Henderson in Bethesda. He is a neurosurgeon. I don't want surgery at this point, but he "gets" it, as does Francomano. I currently have an aspen vista collar that helps quite a bit. I've also done a lot of pt to work on correcting my "head forward" posture that makes all the head/neck stuff worse. I sleep in the collar, which as also really helped, as I used to wake up with dreadful symptoms. That almost never happens anymore.

[babettess]

Thanks so much mkoven! I have a few more questions......

How did they diagnose your problems? XRAY?? MRI?? CT Scans??

What kind of exercises do you do in PT to help strengthen your muscles?

Is the Aspen collar a soft or hard collar?

I am trying to get this all figured out as I know more is going on with me than what is currently diagnosed. I am looking up information on the two doctors you mentioned. Thanks so much!

Babette

[mkoven]

How did they diagnose your problems? XRAY?? MRI?? CT Scans??

mri-- but not all radiologists know how to diagnose. get a copy of your films to take to a knowledgeable nsg.

What kind of exercises do you do in PT to help strengthen your muscles?

a lot of strengthening thoracic spine, so that it is not my neck that is doing the work-- my head just floats on top of my neck, which is held up by my mid-back. So a lot of varieties of the "superman" exercise, using lower traps, not upper traps.

Is the Aspen collar a soft or hard collar?

hard, but padded and adjustable

[miranda]

I find this interesting.

I have spinal problems and never considered them maybe being a cause of my OH.

I have 3 discs missing in my spine ( in between my shoulder blades) and scoliosis and fused ribs.

However I have had a mri of my head done, but would they of checked my neck too ?

Babette, I too have all the floaty feelings you describe and dizziness, I was told it was migraine related

because I get menstraul migraines too.

[icesktr189]

i have an open spine on the inside of my back.. i was diagnosed with it when i was a lot younger.. they pretty much told me that because it was on the inside that i need to not worry about it. i wonder if my POTS could be because of this. i am also pretty sure i have a genetic form because my grandma had all the POTS symptoms when she was alive so im not sure if it is or nots

[Maxine]

I'm sorry I'm responding so late Babette---

I read this yesterday, but I was having a bad day, and wanted to think about what to post.

Your symptoms do sound connected to some kind of compression of your upper cervical spine, or brain stem from possible cervical cranial instability (CCI).

I was diagnosed by the chiari institute (TCI) in Manhassat Ny--(Long Island) by Dr. Bolognese) in 2004/2005 after a series of tests. MRI, 3D CT scan, and physical examination. I have not heard great things about TCI lately, so I chose to keep a low profile with them, and move on to a second opinion.

I got a second opinion by another orthopedic surgeon recommended by my EDS geneticist. The EDS doctor thought it needed further investigation, and I had more testing, and the orthopedic surgeon said I had instability, but did not push surgery at that point (over a year ago), but feels I may need it now. The pannus growth on my odontoid bone is indication of instability, but MRIs and CT scan have not picked up enough for the average neurosurgeon of orthopedic surgeon who is not familiar with this type of instability caused by atlantoaxial instability. Surgeons and radiologists do not understand the connection of CCI and EDS.

http://www.ncbi.nlm.nih.gov/pubmed/8596160

I have had abnormalities show up on many MRIs and CT scans, including many herniated discs, congenital cervical spine stenosis, the pannus growth on odontoid bone, and a broad based disk bulge on C1-2-------which is basically the CCI, but the radiologist doesn't know how to read the MRI. It's a daunting task trying to get neurosurgeons to take this seriously. I keep trying because when I went to the NIH EDs study in Baltimore, they also confirmed the CCI.

I have also had fluid showing in the mastoid area on many brain MRIs sine 2005. This has been there almost 5 years, but there's no sign of ear infection, past or present. I just had a full ENT workup, and NOTHING. Why is the fluid there? I also have partially blocked spinal fluid, and this was found at TCI in NY. This was on a CINE MRI report. Blocked CSF fluid can give the appearance of mastoid fluid also.... http://www.asap.org/articles/cine-mri.html

Lesions have also been found on my brain.

Dr. Dan Heffez was actually the first neurosurgeon to find abnormalities on MRIs and CT scan in 2002. He did cervical spine surgery in June 2002 to replace two badly herniated disks in c5, 6, and 7. He also fused and added a titanium in the area. He said I have significant cervical spine stenosis, and a small posterior fossa. He said I could have chiari---maybe a grade -0-, as the brain herniation is only 1mm. I also have a missing vertebral artery on the left, and an enlarged one on the right compensating for the missing one on the left. Now I have and edema type swelling on the right side of my neck near my clavicle which could be vascular congestion. I recently had an ultra sound of my carotid arteries, vertebral arteries, and subclavian arteries. She found there was flow in the left vertebral artery, so it's very strange--------flow shows in my neck part of vertebral artery, by two MRAs show the vertebral artery is missing in the brain-------DEFINATELY NOT THERE, as I even saw the films. You can clearly see the carotid arteries, on one medium sized right vertebral artery, but NOTHING on the left. NIH confirmed this, and Dr. McDonnell reported this in her clinical notes when I was in the study in April 2008. http://www.grc.nia.nih.gov/branches/lci/nmcdonnell.htm

http://www.grc.nia.nih.gov/studies/ctd.htm

A friend of mine from California---(we have never met in person), but we have talked on the phone for over a year. She has almost identical problems to mine, but I think her's is a little more advanced. She has been struggling to get this taken seriously for years. She's had surgery in the area for something else--(I can't remember what type), but she has EDS, and dysautonomia along with many other health problems. MAny problems with the vagus nerves can result from this also. She has been kind enough to send me many articles on this, and other problems related to CCI, and a couple of them related to CCI and EDS. It's stunning the problems that can happen from this. One of them is definately dysautonomia/POTS/ANS dysfunction.

My EDS doc said there's not enough clinical data on the relationship of EDS and CCI. In other words---(PROOF). Docs want to see radiological evidence.

My PCP is working with radiologists here to take the right type of MRIs and CT scans. The orthopedic surgeon recommended by my EDS doc has been doing new types of CT scan with head turned to the left and right verses the flexation/extention MRIs/CTs. It's difficult for flexation/extention testing to pick up CCI related to EDS, as the mechanism behind this type of instability is different. I'm fortunate my PCP is taking this seriously, as he will be talking with a radiologist out of Harvard who is working with a local hospital who is replacing their entire radiology staff. Since my PCP is interim chief of radiology, he should be able to have a discussion with this Doctor from Harvard. We discussed this last week, and hopefully I hear something soon.

I was scheduled to go to Cincinnati to see the orthopedic surgeon, but I was sick, and had unstable POTs symptoms from traveling. There's was also problems with black ice between northern Ohio and southern Ohio. I will reschedule when I have the CT scan taken if they'll do this type of CT here. If not I'll have it done in Cincinnati before my appt. with the orthopedic surgeon as planned previously.

When I have more time I will post some of the information I have on vagus nerve complications from brain stem compression, and subclavian artery issues.

I have other abstracts and journal articles also on Chiari, and CCI.

This is a very misunderstood condition by the medical community. I also have a neurologist from the Cleveland Clinic who is working with me, but is more focused on the brain lesions, although he is trying to understand the EDS/CCI connection. The two surgeons I saw there didn't feel the problem was significant enough----despite the other confirmations, and fluid buildup, and many symptoms that are related. One orthopedic surgeon was so arrogant, and ignorant about the EDS and instability---(I doubt he even read the wealth of information on my history from the clinical notes I organized for the Cleveland Clinc.) I confronted him, and said, "is this the Cleveland Clinic"? He said yes. I said, "are you sure". When he recommended aerobics, I knew he was being a sarcastic jerk. I suppose the first neurosurgeon I saw there wanted to teach me a lesson by sending me to him for a another opinion since he didn't think my CCI existed, and his notes reflect that this is in my imagination, in so many words. The problem is that I taught HIM a lesson, as I reported his rude and obnoxious behaviour. However, when patients relations took my information, I'm sure they were just appeasing me. Docs like that never get disciplined.

MY EDS doctor is hoping for better radiological evidence to present to the CLeveland Clinic.

This is all I can post for now, as I have to go for now. I will post more later.

I will say surgery is a LAST resort, and you definately want several opinions----surgery doesn't always fix the problem entirely, and some people actually get worse.

Take Care, sending you HUGS.

Maxine :0)...............please forgive typo errors, I don't have time to correct now.

[tlserenity]

Hi Babette -

Maxine is a wealth of knowledge! (thank you Maxine!)

I 'happened' on POT's by way of Chiari I Malformation, Retroflexed Odontoid and Kyphosis in my neck. It is suspected that I have EDS - although it has not been confirmed.

In the past 14 months I have had 3 surgeries - the first one was a failure and left me worse off than before the surgery.

The other two stopped the progression of the Chiari symptoms and strengthened my neck - however - as Maxine stated - surgery is not a cure - I live daily with a whole myriad of neurological and physical problems.

I have had to learn to not bend my head back or forward - My Physical Therapist created range of motion exercises around the movements that I cannot make.

I wear a hard collar in the car - and a soft collar at home when I am alone - as I am prone to seizures if i move my head wrong.

You will find that most doctors haven't got a clue about these illnesses - and you will find many who say they do - that really DO NOT.

It is best to stick with the Specialists in this area - ones that have studied it and treated it for years - otherwise you will be running into brick walls and/or be treated as if your body is a cookie cutter image of the last person that they treated when that is rarely the case.

It does sound from your symptoms like you may have Chiari and Instability Issues. (BUT that is only my opinion - based on the symptoms that I have had)

Terry Lynne

[Catelynnw3]

I apologize that right now I am unable to read all the above posts to see what was already said, but want to offer my own experience - hopefully in a nutshell. I've been around the block with doctors and diagnoses for years including POTS. We had a car accident years ago and besides whiplash, no visible injuries at the time. My symptoms gradually appeared and worsened following. At this point they include chronic throbbing headaches, pressure in my head, "head fog", palpitations with shortness of breath, neck and upper back pain, fatigue due to overstimulation of my autonomic nervous system, sometimes tinnitus and/or a rapid-fire sound/feeling in my ears, etc...

I found a book in a doctor's office one time about chronic headaches which discussed a syndrome called Barre-Lieou that can occur after a whiplash injury. The symptoms sounded very familiar. I had an x-ray done at the time and then prolotherapy injections which helped only to a certain extent (this was to strengthen the ligaments which can become overstretched and cause instability). I went to a chiropractor who adjusted me and ordered MRIs of my cervical spine. After the adjustment, I could feel a release of the pressure in my head and then I went through several days of a release and then increase of the pressure in my head with a horrible, what I thought was a migraine, headache. My MRIs showed I had herniations, bone spur complexes, and spinal stenosis.

My doctor referred me to a Neurologist who told me that the spinal fluid around my spinal cord was being blocked and was the cause of many of my symptoms. He referred me to a Neurosurgeon with whom I have discussed Artificial Disc Replacement. At this point, I am considering going to Germany to have it done due to their huge amount of experience with it compared to the U.S.

Anyway, here is a link to check out regarding the relationship between the cervical spine and these symptoms. It particularly discusses the correlation for some people who have been diagnosed with NMH or POTS.

http://www.nfra.net/fibromyalgia_rosner_6.htm

This is directly from that link: "The relationship of the upper spinal cord and brainstem to cardiovascular symptoms is clear cut, and it is no surprise that gastrointestinal symptoms should also improve: More importantly than any given ?symptom? is the concept that the upper cervical spinal cord/medulla is capable of causing dysfunction in multiple vegetative systems which lead to a plethora of somatic complaints. All too often, physicians dismiss these complaints as psychosomatic/non-organic/non-anatomic and refer the patient for psychiatric evaluation?a dead end for most. The brainstem and upper cord are the one area of the nervous system where all of these functions coincide, including pain control." I pray this somehow helps!

Cathy

[Maxine]

Check out my post! It's pretty shameful that doctors can't admit there's obvious instability because they're afraid of opening up a can of worms. Once they admit what they have been missing for years, it could make them look bad. However, I think patients have more respect for doctors who admit they have missed something, rather then continually tell them they're nuts.

I'm sick of it! It's pretty important to be taken seriously about such a SERIOUS PROBLEM!

Get your ACT together medical community! You're in the dark ages......................

Maxine :0)

[Mary P]

I've had neck/spine problems for years ++. I was diagnosed with a type of spina bifida years +++ ago. I saw 3 neurologists who wouldn't even listen to me in this regard. They seem to have some sort of mindset when they hear our symptoms and can't think 'outside the box'.

I saw a 4th N last month and I do believe he listened because he has ordered an MRI of my head and neck. A previous N ordered an MRI of my head only, so Mirry, I don't imagine your neck was included in your MRI. This 4th N diagnosed Autonomc dysfuntion with OH but with a something new added, cerebellar ataxis. Has anyone else been diagnosed with this or has anyone else heard of this? It seems there is always something new to research.

[Noreen]

Babette-

Some of the symptoms you mention sound like mine for cervical dystonia.

"Neck pain in the back, sides and front of my neck;

extreme tightness of the muscles in the front/sides of my neck to the point that they are visible

shoulder pain and tightness;pain between the shoulder blades

one shoulder is obviously held higher than the other

Head sits on neck tilted a little to one side

Some days feel like my head is a cantaloupe and my neck is a toothpick trying to hold it up

can only look up if I support the back of my head or I feel like my head is going to fall off"

I don't know what type of doctor you are seeing but when I changed neurologists, he got the cervical dystonia from my head tilt. I obviously don't know if you have this but if the name comes up you will at least be familiar with it. You don't mention head jerks but mine didn't start that way and it was a long long road to proper dx.

Here's a link with the symptoms: http://www.wemove.org/dys/cdys_sym.html

If they don't sound familiar to you at least you know you are seeing the correct specialists. X-rays and so on did not help me.

I could be off base but please know I post with the intention of helping.

Noreen

[tlserenity]

I have heard of cerebellar ataxis - referred to it being the result of 'long term compression of the cerebellum area or damage done post surgery on the cerebellum'.

(Mary - Do you have major balance issues as i do???)

Terry Lynne

[Mary P]

I have heard of cerebellar ataxis - referred to it being the result of 'long term compression of the cerebellum area or damage done post surgery on the cerebellum'.

(Mary - Do you have major balance issues as i do???)

Terry Lynne

Absolutely, Terry, major lack of balance, +++, and, of course, along with this, nausea. I fell and 'smashed the back of my head on ice in 1982 and have had balance issues since that time. They have steadily become worse and worse over the years. I have to be really careful of every movement I make, even in bed. When I walk I have to look straight ahead and with my eyes down a bit. I don't dare look sideways . I have to turn myself around if I want to look to the left or right. I can't lie on the back of my head because of the pain and loss of balance this will cause. I told this to all the Ns I've seen, and my own MD for years before I ever saw a N but no one paid any attention. I have a walker for outdoors but now need a smaller type for indoors as well. It's my security blanket.

I'm glad you know of cerebellar ataxis and thank you so much for responding. This new N is a specialist in movement disorders. I waited a year to see him but he seems to be on the right track.

Mary P

[babettess]

Hi Everyone,

Thanks so much for all the replies. I have gained some valuable information to share with my doctors.

I had my xrays of my neck. I sat with the radiologist as he examined them. He explained them to me and I got to ask him questions. He didn't see any instability. He did show me where I have moderate spurs which are compressing on the nerves to my hands. He suggested a MRI if the numbness in my hands gets worse. My Physical Therapist who is familiar with CCI also looked at the XRays and didn't think there was any instability either. He was actually the one who first brought up the possibility of instability.

I know instability is such an unknown area. I guess I will wait to see what happens.

Thanks so much!!

Babette

[juliegee]

Babette-

I'm glad you are working on getting answers. Keep with it. Maybe spurs explain your symptoms, but I wonder...

You raise a lot of questions for me re. my son. When Mack was younger (before he got really sick with dysautonomia), we suspect that he subluxed his neck. We were walking/running one night after dinner & he turned his head to look at the moon and fell immediately to the ground screaming that his neck hurt. He couldn't hold his head up. I didn't realize how serious it was. I ran home and got the car & picked him up- put him to bed with a heating pad & advil. In the AM, I insisted he get ready for school. He moaned and groaned and eventually got dressed, but vomited as he walked down the stairs. His neck was at a 45 degree angle. To drive in the car, he had to rig a sling (with a sweatshirt) that he looped over the dry cleaning hook. In retrospect, I should have gone to the ER, but I took him to the ped, where we saw a PA. She said he had toriticullis. He vomited on her too. (He does that when he's in pain.) They prescribed muscle relaxants, codeine, and phenergan suppositories. He was out for a few days and eventually went back to school.

The neck pain persisted for month. We saw a pediatric neurologist who found "incidental" bulging discs on his MRI film. He was 10 y/o. We then saw a pediatric neurosurgeon who was VERY alarmed by the description of the above incident. He was the one who said it sounds like a classic cervical subluxation. He didn't like Mack's X-ray films. His neck was very tilted forward. He wanted Mack to take muscle relaxants every night for a week or so to see if he could loosen up his neck.He did. the next AM, Mack's BP was so low, he kept losing consciousness. The neurosurgeon said "Forget it- no more muscle relaxants." We dropped it and sought no further help.

Fast forward 2 years. Mack was very sick with severe GI and dysautonomia symptoms. He went to a Children's hospital in Atlanta for an endoscopy. When he awoke, he was once again screaming in pain with sky high BP. All he kept saying was "My neck, my neck!" We suspect that they tilted his head backwards over the end of the table for the test & general anesthesia. Not a good idea for a kid prone to cervical instability. They loaded him fuill of IV pain meds and sent him home. We have since learned, like Maxine, to warn EVERYONE who touches this kid about this tendency.

In short, he is definitely prone to cervical instability. he has many of the symptoms you describe. Even when acute, this is hard to DX and poorly understood & definitely correlated with dysautonomia.

Forgive my rambling (again!) Please let us know what (if anything) you find out.

Hugs-

Julie

[Maxine]

Hopefully there will be more information on CCI at the EDNF conference coming in July. I'm glad I'm going.

The orthopedic surgeon I saw on Tuesday said I had 7.9mm of instability on the right, and 7.5 on the left. This is with my head turned on a CT scan. and he saw this on a poorly done 3D CT. Remember when i said my vertebral artery was missing on the left. Well, he said it's likely the blood flow is cut off there in the C1-2 area, and the right vertebral artery is over stressed trying to compensate---not a good situation with the poor vascular tone with EDS. He gave specific instructions to the CT tech----BUt she did it wrong anyway. He wants me to come to Cincinnati to do another 3D CT there. He does them with the head turned to the right and left to catch this type of instability----horizontal instability. The gap with head turned is only supposed to be 1mm. He's wondering what he'll see with the 3D CT scan thats done RIGHT!

I told him to send all documentation to my PCP, and I will forward this to any other doctors I have seen who have dismissed this.

I hope all of you who deal with this can find the help you need. This is a very misunderstood condition, and as Julie said very difficult to detect.

Maxine :0)

[Maxine]

Julie,

I just read your FULL post. I only skimmed it yesterday, and I see your son had a problem during endoscopy. This is very serious, and doctors need to take this much more seriously then they do. My PCP was taking it seriously, but because it's been so difficult to get this documented on radiological reports, I think he's starting to wonder. He does have the clinical notes from the orthopedic surgeon, and NIH saying that I have CCI based on what they saw on my films--MRIs, and CT scans. It's called Axial Rotation Instability-----this is the true defination.

This is one of the reasons why my PCP and GI doc didn't want to do a colonoscopy, the GI doc was afraid of what sedation would do (he was worried about the POTS), and the PCP was worried about the CCI. However, I wonder if my PCP will take the CCI as seriously now. He will be getting a clinical report from my orthopedic surgeon reporting the actual measurements of the instability.

Well in the midst of typing this post the Cleveland Clinic called, and explained my situation to them, and the nurse was very understanding, and said their GI docs have dealt with POTs patients a lot, and she didn't dismiss the EDS issues at all. She said the GI doc is more likely to know more about it then she does, and they would see to it that a colonoscopy would be done the way I NEED it done. She said he's done many, many colonoscopies without sedation, and he does them so well, that many of his patients have little or no discomfort. She said they are familiar with complicated patients.

OK-------hopefully this is all true. You all know how it is when you hear great things about a medical facility or physician, and you end up finding out differently.

Maxine :0)