Aa
Pictures - Please tell me what you think!
I am new to this so I don't know who sees what...I posted some new pictures if people can take a look and let me know what you think. I don't take any of the opinions as a diagnosis...just opinions. I am getting more miserable by the day with the pain. :(
Just a thought...I was told over and over again too that all the tests were coming out normal and I was in the same frustrating place you are. When I did finally get dx'd with Chiari, my NS told me that a lot of the standard tests that NL do, DON'T show anything. After the surgery, I went back and got copies of all my test results and noticed that they actually DID show some variations, apparently just not the ones that my NL found important. Although it is good that the tests are coming out well, it doesn't necessarily mean nothing is wrong!!
Carolyn
Carolyn
I just don't see how any of the tests haven't shown anything....maybe the MRI of my spine will? I really don't think the EEG is going to show anything either...but I've never had this problem before and it just started all of the sudden about a month and a half ago....today I was in horrible pain..and it's getting harder and harder to make it through work.......It seems like my reg doc and the NL are trying everything they can to rule things out which is def making me feel better......
Just a suggestion - but fibromyalgia is often used as a "blanket" diagnosis. This means that when all else has been ruled out this term will fit the symptoms. Fibromyalgia is a very real and horrible disorder but when we are ill, scared, unsure or just desperate to put a label on something so that we can hopefully fix it - we will accept a reasonably intelligent diagnosis. Be cautious. You have definitely been given the medical runaround but try to stay patient. I am a nurse and have seen patients so fed up with horrible doctors and other medical professionals (obviously understandable) that they grasp at the first tangible diagnosis, just to be able to start somewhere. Be careful, as fibromyalgia is a "very hard to treat" diagnosis. I have CRPS (complex regional pain syndrome), which also falls under that previous heading, but I got 3 different opinions before I believed any of them. This is your life and you don't want to waste anymore of your time or health with unreal expectations. Just be careful. :)
I went to my regular doc today because I have so much pain in the neck and stuff....haven't been feeling well the last few days.....My follow up with the Neuro is so far away.....I had my blood drawn there (cus I got the hint it was cheaper if your docs office will do it instead of the hospital) so he actually had the results for me and everything the NL checked was normal. My doc is doing an MRI of my spine (C-spine?) for neck pain...he said he could feel the tenderness in my muscles and tension and stuff.....he is making sure I don't have a herniated disc......My EEG is Monday....if they cannot find anything with the tests I will have a diagnosis of Fibromyalgia...which actually also fits the symptoms I have been having. He is also checking my vitamin D level because a couple of years ago after my gall bladder surgery I did have a deficiency so he wanted to be sure it was doing ok.....so we'll see....
I just took a peek, and to me, it looks like your tonsils are plugging the foreman magnum somewhat. This would cause the symptoms you are having, in my nonprofessional opinion. :)
Blessings,
Rebecc
Blessings,
Rebecc
Yes, I had one early on in my symptoms and it was fine. Just recently, I had an ECHO and that was fine too. All my heart rate/respiration issues I believe is the result of the pressure my brain was putting on my brain stem. You can have your brain not pushing down on your spine, but if it is crowded, it can still be pushing on the brain stem.
Carolyn
Carolyn
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
I took a look at the pics you posted and it definitely does look like in at least one of your pics that the tonsils are not a normal shape. It is really hard to tell though if it looks like there is any blockage. With mine, my NS could clearly show where my cerebellum was pushed up against my skull but that was with a really good, high resolution image.
I am not sure of your story? Have you been dx'd with Chiari or suspect that you have it? Has anyone mentioned tonsillar descent to you? I imagine that you are having quite a few symptoms that has caused you to try and figure out what is going on. Either way, like I said, it does look like there isn't something quite right and so I would start looking for some answers in that directions.
Good luck!
Carolyn