Thanks for adding me. I so badly want to find out for sure if I have a Chiari. I had an MRI 5 years ago. It showed spinal cord involvement. Not sure at what location. But I have problems in my neck and whole spine. I am 59 and started having problems since I was 30. I had MRI before but they never showed spinal cord involvement until I had the sitting up MRI. I have supposedly vertigo from inner ear disease probably a virus for 30 years. But that is the 5th diagnosis. I have never been able to use a pillow because of neck pain. The odd thing is I did an online gene test and says I have a gene for Chiari. I sometimes have a worse time with vertigo when laying down. But on testing for things like BPPV its normal. I am wondering why if a person has a Chiari why something like an allergy time might make it worse if they are laying down and get vertigo. I hurt my neck years ago when I worked building airplanes. I started seeing a chiropractor and wonder if it made me worse. I also got worse after having 2 children it seems I never was the same. I feel a constant feeling of pressure and tightness in my neck and pressure in my head like a feeling of being stuffed with cotton. I can't exercise or do much arm carrying heavy things because it feels like it pulls on my neck. I can't look up get dizzy and my eyes won't focus. I have thought of trying a chiro again but the doctor told me because of arthritis not to ever go to a chiro. I have bone pieces that show in my Mri from degenerated discs.
I did a 23 and me gene test. It gives a lot of mutations a person has. It doesn't mean you necessarily have the disease. Just have the gene to have it. It gives the main genes and then if you look through it gives less prominent genes. I didn't know there was a gene either. Until I looked farther through the report and saw it. I assume what it means is they checked people who have Chiari and then found they had a common gene. It wasn't a double gene like one from the mother and father but a single gene mutation. And the amount of higher risk was small but I thought it interesting. I had already been considering I have a Chiari anyway and motivated me to look farther into it.
I will read the link at the top. I got the previous mri that showed spinal cord involvement ordered by a nuerologist but after getting the results she didn't think it needed more investigation.
Linma, I’m going to attach a post that I send to people who have been newly diagnosed:
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency (high daily doses of D3 can help with symptoms)
Magnesium deficiency (non-citrate magnesium daily)
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.
Dysautonomia- Dinet.org (this is a big one for anyone with brainstem issues!)
Tethered cord syndrome
Sleep apnea- dangerous, especially if Cranio cervical instability is involved
I am glad you found us,
Jenn
Thank you all for the nice replies and information. Jenn I have already been told i have low vitamin d. I take 3000 mil a day. I don't absorb vitamin d well. . It has gone up since taking supplements but over the past 5 years not a lot. I also have a problem using folate and I have pernicious anemia and low b12. I use to get shots but once the level was normal now use a sublingual. I was checked for dyautonomia about 20 years ago. I had to go to University of Alabama and see a doctor there. He felt I had some problem but not as significant as some people do. I use to have very low blood pressure. And it wouldn't adjust to body position changes. Not as bad now. I was told then to take b vitamins, c and others. This was before I found out about my lack of b12 and vitamin d and been tested. A nuerologist actually was the one who got me tested because of lack of balance. I am in the normal ranges now that I take supplements and make myself eat better. I am also much more overweight now and even though I need to lose weight I think it has help stabilize my blood pressure. I also use to be very anemic but since going through menopause my iron is in the normal range. I am going to look at my report again and see what it says as far as which exactly part of the spine in the neck was touching. I had a more recent Xray and the doctor said i have scoliosis and arthritis through my whole spine. I didn't use to have sleep apnea when I was normal weight but think I do now because I snore. I only sleep 3 to 4 hours at a time and have for at least 30 years. I have to take a nap because I am always tired. I know I seem messed up but I am. thanks all
Linma, people with hypermobility can easily have malabsorption issues hence the deficiencies.
I wish I could get the testing for hypermobility. I am not very flexible now in my older age. But remember one time a doctor telling me I was hyper flexible. I ask him what that meant he said well like a cheer leader. This was many years ago. It was a rheumetologist I saw for myofascial pain syndrome. Which he said I have. Now I am told I have fibro OA and RA. But I am very non flexible. I don't know how you all are able to get doctors to give you testing. I had problems for 30 years and I still with my limits of almost home bound they say they can't justify this test of that test. The only way I can get a test is switching doctors. I will get a new doctor ask for a test and they will give me one. But if I ask for another test then they don't want to do it. I am sure it has to do with being on a medicare plan. I looked at my cervical report and the cord involvement is c4-5 and c5-6. It says I have a severe injury though because of loss of curve not the exact words. I don't remember an injury. I think it just from sleeping propped up trying to keep my neck and upper body more up right. If I lay flat hurts my neck and I am more likely to spin. What is the test for ED. I noticed on my last blood work the doctor did testing for 3 different autoimmune illness which were normal. I didn't know he was checking for. I know I seem like a flake not knowing what is going on. Frankly when I am dizzy which is worse when I go to the doctor. I can't think or concentrate on what is going on. I know the doctors also think I am a flake. They would have to be in my body and feel what I have going on. I am just trying to balance myself and focus on that and all they are telling me goes past me. I get home and then try to go over what they have told me.
I looked up Ehlers Danlos Syndrome. I doubt I have that condition. It seems it is more than just being hyper flexible.I would think as severe as a condition it is I would have had some thing that pointed to that by this age.
I don’t think its uncommon for a hypermobile person to become stiff and loose the flexibility in age. Joints and tissue get damaged over time from the hypermobility and become more rigid. There is a genetic test for hypermobility and EDS that I think equites a tissue sample- there is no blood work for it. Many doctors will use the Brighton a Criteria and Beighton Criteria to diagnose too. My older sister has RA and EDS. You guys have to keep a close eye on cranio cervical instability…either one of those alone can cause CCI. Cranial settling is a big one.
Thank you for that information. I will have to put forth the effort and hopefully find a doctor willing to consider this.