May 25, 2012 at 3:29 pm #199PrettytiredParticipant
I’ve been reading a lot, in other places, about EDS & how it’s common to have Tethered Cord with it. Anyone find that to be the case? I’m not sure that I have any signs/symptoms (other than a dimple above my behind- which is supposed to be an indicator to an abnormality. Well, I do have an extra lumbar vertebrae… so that could be the explanation for the abnormality).
From what I understand, Tethered Cord also pulls everything down, causing even more CSF blockage.
Thoughts?! Thanks guys :).May 25, 2012 at 11:26 pm #2220
Yup. EDS and TC and chiari are more related than in the general public. Chiari in EDS has a 1 in 15 correlation. MUCH higher than the general population.May 26, 2012 at 9:02 am #2222PrettytiredParticipant
Wow. Thanks! Finally some answers, I can’t wait to get some knowledgable doctors on board with me (probably easier said than done).May 28, 2012 at 2:20 pm #2237
My physical therapist saw my MRI and said “WOW! You sure have a long tail! Does it hurt to sit? It should.”
With no other frame of reference what do you say to that?
Oh, and as for diagnostics ever being “way off”… don’t hold your breath. So much comes back normal (as read by1 person) its not even funny. That’s why so much credence is give to symptoms for us. Imaging and tests are often out of proportion to the trouble being caused.
Do you have a lumbar and sacral image you could share? You have me curious now. If you show me yours I’ll show you mine. 🙂May 28, 2012 at 4:40 pm #2238
Yes, VERY familiar with tethered cord. Dx’d with it. Suppose to be scheduling surgery. No insurance now though.
I find a great way to share pics is by using tinypic.com. They then give you links you can post to the image so that it’s just that Mage on a web page. If the file is small enough you can also attach it to your posts, but you’d probably have to shrink the image too much.
My mom was an X-ray and CT tech. I like to think I got some of her knack for reading images. I am self taught and earning my M.D. Thru the school of hard knocks. So far I have done residencies in neurology, chiari and brain malformations, spinal issues, hip dysplasia, scleroderma and other autoimmune diseases like lupus and Mastocytosis. Also well versed in connective tissue disorders.
I have all “normal” reports from local drs, yet when I went to experts they all agreed with my reads. Not bad for a “patient”.
I will post mine from the computer in a little bit.May 28, 2012 at 9:59 pm #2240
I will do my best to answer, but understand I DO know what it used to be like to be healthy, work 65-80 hours a week, and still have energy for my dog, horses, and outdoor sports or softball/basketball. I used to be “normal”. My version of it anyway.
As for the 10 year old CT machine… that’s not too old of a machine. Many are still used at 20-25 years old. They just get sold to smaller hospitals as the big dogs upgrade. The best image won’t do a thing if the radiologist doesn’t read it properly. Understand the issues we face are very obscure and so they are often missed if they do show up.
In short, skip ahead to the big dogs. You will keep going in circles with local yocals. Once big dogs have weighed in there is credence to your dxs.May 29, 2012 at 10:54 pm #2245
No referral needed for Francomano. Call her office and ask them to mail or email you the questionnaire packet. If there is evidence there to be seen based on symptoms you get to schedule an appt. as for neuro stuff, Henderson. Sleep – Pacinki. Urology – Murdock.May 30, 2012 at 4:23 pm #2252
Here’s my “tail”. Not the best MRI quality, but one of the few that shows my entire lumbar and sacral spine.May 30, 2012 at 5:43 pm #2255
A rotational head and cervical CT are very helpful for that end. As for lumbar X-rays…. Not sure any view would show soft tissue issues, but it could be helpful to eval for spondylethesis, fractures, loss of disc space, hip dysplasia…
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