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What an exceptionally brave young lady Nicole is, to keep her sense of humour when faced with all that she has had thrown at her is truly remarkable. Although when you have RA(or a son/daughter/relative with RA) it is sometimes hard to read things like, we should do so, because however difficult it is to read it, it is 100 times more difficult to actually live through it and people like Nicole have an awful lot to teach us. Thank you Nicole for being brave enough to tell us about your RA, you are an inspiration.
thanks for posting this. I have also put this up on my blog (which is pretty new so doesn’t get a lot of traffic, but it is what I can do 🙂 )
This scares me as I have had a problem with my neck for quite a long time now. I have S-shape scoliosis and have had it all my life. I went through several very painful neck adjustments during the 4 years I saw a chiropractor. I finally insisted that they no longer do this to me. It was like I had to fight to make them stop. Ever since then I have had difficulties with my neck. My mom and I were both dx with some kind of weird problem where we do not have “cushioning” between our larger neck bone and spine. It is basically bone-on-bone and we have been told that we are supposed to do these neck “exercises” for the rest of our lives and also when our necks hurt we are supposed to put our chins on our chests for awhile to relieve pressure. Heres the really weird stuff….for the past 2-3 years there are times when my neck makes all these strange little cracking sounds. I can barely move my neck and it will suddenly start up and I have sometimes counted the number of “cracking sounds” and they have gone up to 20 or 30 for the slightest movements. Sometimes when I have bad headaches my neck also does this and my neck will not be moving at all. I have asked nurses about this and if this has ever happened to them or anyone else they know. Their responses? They have looked at me like I am crazy and have said things like, “no, no one I know has things like that in their necks” and also “you must be making it worse than it is because no ones necks crack like that”. When I think of all the things I have learned on this site thanks to Kelly and her brave sharing and research I am so thankful. I can honestly say with all my heart that Kelly has probably given me the chance to see my grandchildren someday. Now, I can arm myself when i see my doctor and MAKE him run tests and actually “TOUCH” me. Yes, so far I have seen him 3 times and he is wonderful because he was the one who did dx me but he won’t touch me. He barely looks at my fingers and touches them He looks at my deformed looking feet and toes and tells me I have “water weight” and need to stay on a salt free diet. He says that he feels “water weight” in my fingers when it is obvious to me that it is synovium fluid. Hopefully my head won’t “fall off” but I think that Nicole is “crazy” as in funny and I plan to read her book! Thanks for being “crazy” as well Kelly, it does help difuse our situations! :cat2:
Irish,
Thanks.
Others have written to me with those same symptoms in the neck (noises, the headache, and pain). I did not think they were crazy because I have the same symptoms. RA in the cervical spine causes those symptoms. However, very few people will become as Nicole did.
Hi Nicole, My name is aL Masters. I too have long-term JRA, and am dealing with Basilar Invagination. I saw my Neurosurgeon yesterday and he does not wan to to do surgery until absolutely necessary. However, I am having lots of problems, so I think I am going to force the issue or get a new Dr.
Can you email me and give me a brief description of your ordeal? I would really appreciate it. I am scared to death of the surgery, but more scared not having it…
aL masters
Plano, TX USA
Hi AL,
Here is the link to Nicole’s website: click here.
There is more information on there about her ordeal & you will be able to email her. Good luck to you. Sorry about your situation. I’ll pray the surgery goes well.
Kelly
I had a very scary experience earlier this year after PT therapy for occipital neuralgia. My Pt did a prolonged session to decompress the area by digging her fingertips into the base of my skull and pulling up. I had a terrible headache upon leaving the office which grew progressively worse on the way home. I had trouble focusing on the road, was dizzy, and had to pull over numerous times. The headache was blinding and would not respond to any medication including migraine meds. I truly feared that I would die and wished at times that I would over the two days that it lasted. So when you hear that manipulation is not recommended, this does not include only chiropractors!
Julia, I’m so glad you were alright! With my own neck affected by RA, I’m so cautious. I can’t imagine anyone doing that to an RA patient. I had a lot of respect for the chiropractor who warned me never to allow that. What do they think was causing the occipital neuralgia?
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My friend just got diagnosed with BI. She is a longstanding RA patient. I’ve read about minimally invasive endoscopic technique at UPMC. Any thoughts?
Thank you,
Cheryl