breaking my own rules and putting up my image
It looks hyper extended. Are you diagnosed with EDS? I always thought it was normal to be able to rest my head on my back. I found out its not, go figure! Lol!! 
Lol! I found that I could only load one at a time. On the fur babies discussion I tried loading 3 at once and it only loaded the last picture of my cat and I said something like “this is my service dog and his two pets”! Didn’t quite work!
How do you rate on the Beighton/brighten scale? Do you have a high arched palet and crowded teeth with deep fissures and plaque despite brushing often? How does local anesthesia work for you? Do you have flat feet? Bruise easily? Soft velvety or doughy skin? Hard stick to draw blood or with an IV? Early osteoarthritis? Scoliosis.
These are only some of the signs of it. It really is best to be tested, especially concerning Chiari and cervicocranial instability.
The doctor that did my surgery was a rural neurosurgeon in Montana(not a Chiari specialist). He was the best option I had at the time. Plus he was the only one that went off of symptoms because I’m unable to have an MRI. We didn’t know about the eds at the time so cci was never taken into account. I never was told what the measurement was. He just told my husband that the tonsils of the cerebellum extended well below C2, blocking csf flow and had caused a rather extensive syrinx and hydrocephalus. I was diagnosed at 17 years old but my surgery wasn’t until I was 40.
Ok crazy question but r u guys joking or serious about the tongue and. Nose thing. Lol because gross but true my 8 year of can literally stick his tongue in his nose.
Miss Beeba,
I am not a doctor, but you have more signs of having EDS than not. Your teeth and your mom gave you away. I would keep trying, because you have a lot of symptoms that I do. Any body that can stick their tongue out and touch their nose, is a real give away like your mom does! I could not do that one!!!!
What do u mean by hypermobile?
Wow, the titanium plate in your head looks so much different than mine. I had a CT scan at UW hospital when my surgical site got infected post-surgery. It took them forever to get the results to the E.R. because they had never seen a plate like mine and I think that they were showing the whole radiology staff ... now I know why (I had my surgery in New York not at UW). Thanks for sharing!
As per your actual concern, I do not know if a radiologist would consider hyper-mobility pathology. The radiologist would have probably been looking for fractures, arthritic ridging of the done, structural anomalies, and disk spacing. Why don't you email the picture to your PT folks and see if there is someone there who would be willing to take a look at it ... that is if your doctor just read the radiology report and did not look at the x-ray. Plus, EDS would effect your occipital bone which would be the "normal" cause of the EDS complication because that joint instability would effect the bone structure and the overall structure of the surgery which, in turn, would effect the CSF flow. (which is probably why you got an x-ray rather than an MRI) ... I don't know for sure but neck hyper-mobility would not be a structural issue that I have found studied and causally linked with Chiari.
Another option (better) might be to see a physiatrist ... which is a fancy name for an MD who is a rehabilitation specialist. Also, remember, NSs don't "do complications" unless it is a structural complication with their surgery that requires more surgeries (which by the looks of your x-ray - the structure of the surgery looks fine). Hence, I would take his advice and go see another Dr. ... namely a physiatrist who has a little experience with Chiari if possible (good luck). A physiatrist can give you Lidocaine injections directly into the spasming muscles in your neck and shoulders and possibly abate the headaches ... that will give you some relief in the short run and probably allow your physical therapy to progress faster. When I get those spasms, I lay on ice 20 minutes on and 20 minutes off - even while I am working. Nothing is better for muscle spams than ice. Ice numbs the muscle and stops the pain signal to the brain which may cause the spasms to stop (sometimes). Moist heat feels better but ice is truly much more effective. One more thing, it might be helpful if your PT folks work from your core up - as far as strengthening.
Furthermore, it sounds like your muscle skeleton might be pretty deconditioned from the illness preceding the surgery and the surgery itself. (I know mine was.) In fact, the hyper-mobility in your neck could be due to the deconditioned muscles. Since our muscle skeleton is so interconnected and you cannot hold your shoulder blades down, my guess is that you are compensating with neck / shoulder muscles which causes them to fatigue easily, spasm, and cause muscular/tension-type headaches. If you stabilize your core, it will take some of the pressure off of your neck/shoulder muscles by taking over some of the stabilizing of your head - believe it or not (hope that makes sense). Sorry that you are having these struggles. Good luck.
I hear you ... I am sick of Drs. too. I never thought that anything would take me down like this either. Before I got sick I ran 25-30 miles a week at 41 years old too (Never could do a back flip though) ... then the hammer dropped. Dysautomia is a broad net of symptoms. It will probably be reduced to 3 or 4 different conditions once more research is done. Hang in there ... sounds like your PT folks are your best bet. I get the bobble head thing too. I cannot sit up straight for more than a half hour without spasms where the muscles attach to the skull. If it were not for recliner chairs, I do not know what I would do. I work in them, relax in them ... I wish I could put one in my car! lol
well did the beighton scale and yes 2 of boys got a high score i thought they were double jointed, but i guess that s not a good thing.
Beeba said:
Can he do stuff that others can't? Please look up Beighton scale - I have to run for kids. Or crawl.. C
lesley said:What do u mean by hypermobile?
Beeba, Let's say that it has radically affected my faith but that I never lost it. But yes, it has "shaken" my faith - especially in humanity. God is still God though I have yet to harvest any 'deeper meaning' from this suffering.
You're right, even a bad dx is better than no dx. I'm struggling with getting a dx for CM. I have all the symptoms but no official dx. Glad to hear you have good faith. We serve a great God!!! He allows these issues to go on in our lives to build character. God needs to know we are faithful no matter what we are going through. Keep the faith, sister!!!
God Bless!
Back to the beginning. Yes, you are way hyperextended on your X-rays(but most radiologists would jsut view that as positional). I actually assumed looking at the images that you had flexion/extension films and were just showing us the extension images. Your alignment looks good and there is no obvious pathology, so this looks like positioning.
I would agree with the pathways you are going down. Flexion/extension cervical psine series could confirm stability(always worthwile in someone who ahs been decompressed). the plain films will show the bones better. an MRI would show the soft tissue(brian and spinal cord) better. If possible, getting both could be helpful.
Thanks for the kind words. My practice name is Neurosurgeons for kids but my actual title is Director of Congenital Neurosurgery. As we have had national debates in neurosurgery, it became increasing clear to me that many congenital issues were not being addressed well by many adult neurosurgeons. I have been fortunate in Orlando to have a very good relationship with the adult neurosurgeons in town and practice at Florida Hospital(the largest neurosurgical provider in the nation). Therefore, while I operate at Florida Hospital for Children, the neurosurgical suites are adult and pediatric, allowing me to perform operations on adults but still with my usual OR team. I'm board certified in adult and pediatric neurosurgery.
So, a long answer to say, I see select adults, with select congenital diagnoses. Chiari is the most common adult diagnosis I see, through the Center I founded, www.floridacenterforchiaricare.com I try not to be commercial in my posts here, as I know I am a guest and the primary function of this site is for patients to communcate.
this is so crazy… I always assumed my hypermobility was caused by my XLH, but now I’m not so sure. I can rest my head in my back…I have allot of pain and problems controlling my head… so I’ve learned to keep myself mobilized. I do that with all my joints because if pain… When I’m able to exercise it is better, but if I don’t, the weaker I an the worst the pain and instability. I just never could imagine that I have another diagnosis!!
Hi beeba, the only view I could see is the extension view. The reason for the flexion/extension views are to produce visible instability to show any subluxations (anterolesthesis/retrolesthesis)which cause pressure to spinal canal and other nerves. I’m not a doctor, but I don’t see either of those on your extension view. Do your symptoms get worse with extension or flexion? Also, I don’t think all EDS peeps have velvet-like skin. I don’t have the skin, but my shoulders have both dislocated more times than I can count and I can move many of my joints around like circus gumby.
Wrong... a bad dx is NOT better than no dx.
The initial dx we received was, "probably brain stem glioma... if that's what it is... 3 - 6 months to live"
It turned out to be Chiari... which isn't something to shrug off... but certainly isn't as bad as terminal cancer.
rosebud said:
You're right, even a bad dx is better than no dx. I'm struggling with getting a dx for CM. I have all the symptoms but no official dx. Glad to hear you have good faith. We serve a great God!!! He allows these issues to go on in our lives to build character. God needs to know we are faithful no matter what we are going through. Keep the faith, sister!!!
God Bless!