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Just A Vent Mainly---but A Little Scared About The Cervical/cranial Instability


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This week I had my MRIs done on Monday. I had to do flexation and extension on the cervical spine--(neck) views, and I'm paying the price. Anyone ever hear of DROP ATTACKS---?? I get spells where I get sudden onset of extreme weakness----like there is nothing left in my body to hold it up-----and I'm going to DROP. Sometimes I get a bit of nausea with it also.

I often wonder how I have not dropped yet. I'm told that someone with cervcal/cranial instability who has impingement on the upper cervical spine and brain stem area can have these attacks. Anyway I held my ground and continued to search for that other opinion, as there was only one surgeon who recognized the instability. I went to other surgeons, but all were dismissive, or said the pannus growth formation on my odontoid bone, the bone that sits on top of my cervical spine near the brain stem is not a big deal---"not worrisome". Do I look like some kind of cartoon---bambi, perhaps--------like I don't have a brain capable of thinking?

The surgeon I just saw on June 28th in Cincinnati said the Pannus Growth means "INSTABILITY"! He said it has grown more from the MRI I had in 2004, and the MRI from 2006. He also said I have congenital cervical spine stenosis, and it's also serious, and causing myelopathy. OK, now this is my second opinion. He described to me what my symptoms would be, and I have them-------------I didn't have to tell him. HE KNEW..... This is when he ordered a full spine MRI. He is a an orthopedic surgeon who was recommended to me by my EDS doctor. I talked about this in a previous post. He specializes in spines--

Last night I just read a article on cervical/cranial instability with one of the doctors I saw listed in the references. It specifically states that pannus growth means ADVANCED instabiltiy. HE SAW THE PANNUS GROWTH at my apointment in late 2005. All my symptoms point to instability. I would not have persued this long journey unless I felt it was necessary. I have felt slippage of this area since before I had my cervical spine surgery in June 2002. After 2003 it got worse. Then I developed myelopathy, spastic gate---(my husband likes to call it the cha cha cha), loss of sensation of where my feet are when walking, limited on how fast I can walk ect.

Here's a list of warning signs:

"Warning signs

In addition to painful limitation of neck motion, warning signs of cervical involvement in rheumatoid arthritis can include suboccipital (C2) pain, paresthesias of the hands and feet, clumsiness of the hands, urinary retention or incontinence, and involuntary leg spasms. Multiple neurologic signs may be elicited on physical examination, including diffuse hyperreflexia, lower extremity spasticity, a spastic gait, and Babinski's sign. Two-point discrimination and position sense may be lost, and quadriplegia or respiratory arrest can occur in the most advanced cases." I have most of these symptoms.

I have sleep apnea also-----------(I don't fit the usual profile), and my guess is that it's possibly related to the pressure on the brain stem from the instability. I even stopped breathing on my side during the study. I know when I turn my head in different positions I have breathing issues.

Here's a copy of the article----it references Rheumatoid arthritis, but the bottom line is te same. My EDS can have the same affect.


I'm concerned my local doctors are clueless, and if I have a crisis I'll be sunk.

Dr. Grubb has been great in trying to understand this. However, this is not his specialty, but he has tried to help me find a local neurologist to watch for these symptoms. I do have one neurologist, but she thinks I suffer from migraines-- :rolleyes: At least she isn't rude to me like the others have been. However, I don't believe she takes any of this very seriously. There were a couple of lesions on my brain in the peri-ventricular, and medulla area---and she thought it was migraine related. How about lack of blood flow, or partially blocked cerebral spinal fluid-----???? I do have both of these things, and told her I don't have migraines. My headaches are always at the very bottom of my skull going into my neck-------

Three surgeons-------------all with very good credentials said I have significant problems causing myelopathy, and two of them said I have cervical/cranial instability. One of them asked what the local doctors were looking for to take this seriously------(paralysis?)

I'm sorry to vent like this------------(but I'm finding it more and more difficult to function with this along with my EDS, and POTS)

Most of the time the only comfortable position for me is lying down, and even then it's got to be a certain position.

Typing this is very difficult-----------I can't respond to posts on here like I used to.

No wonder I'm afraid of the tooth extraction----it's right in front of the INSTABILITY, not to mention my problems with lidocaine.

My EDS doctor said he did not know if this could be done safely. I contacted the orthopedic surgeons office, and they are going to send the MRIs via CD so he can view them on the computer because he is out of town.

Can anyone relate to any of this?

Maxine :0)

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I'm in Ohio Pat57---- :blink:

We'll see what the MRI looks like that I had done last week. I know my MRIs from 2004 and forward have showed this pannus growth formation at the top of my cervcal spine. This is from instability, and the congenital cervical spine stenosis is also contributing to my problems. The EDS is causing the instability.

Then I have those lesions----------so which is it? My spine issues, or the lesions casing these drop attacks? I don't think it's the POTS. My symptoms are different from that, like my low BP, tachycardia, near syncope ect. These drop attacks are so sudden, and usually no warning. I'm told this can be brain stem related.

I haven't read that thread yet Pat, but I'll check it out. :rolleyes:

Maxine :0)

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