Forum Replies Created
-
AuthorPosts
-
PalominoMorganParticipant
Let me know how it goes. I can’t hold my arms over my head for 3 minutes. I have bilateral thoracic outlet syndrome. Any potential benefit for me would be offset by the impact on my neck, back, etc. to those more able bodied… have at it. I sues my martial arts training to control pain but that just involves breathing. Also, there is a negative effect if you do too much. The vavulsa like nature of it would set my head on fire though.
PalominoMorganParticipantYour “tail” would be in the sacral area, not the lumbar area.
PalominoMorganParticipantI was gonna say nystagmus too.
As for the snow, I have that too. I chalk mine up to my dysautonomia. When it is worse so is the snow. When I’m about to pass out the snow (black snow) gets bigger. My theory for me is based on my symptoms I experienced in my tilt table test where I passed out for first acknowledged time in my life. I had the same snow effect as I left the conscious world.
PalominoMorganParticipantMast cells are bullies. They exploit any opportunity to pick on the rest of the body. Stress or trauma are big invites for mast cells to throw a party at your body’s expense. My advice is to keep taking the Histamine and proton pump drugs. Before Gastocrom I got increased relief with Nasalcrom, the nose spray. No where near the dosage in Gastocrom but I would do 3-4 doses per nostril a day and noticed it helped.
Also try to take care of yourself with rest and trying to be as stress free as possible. Ha! With all those tentative surgeries I know, but try…
PalominoMorganParticipantIf ou look up “military neck” or spine? there is info on what happens when the natural curve of the neck is lost. I too have lordosis and kyphosis. Basically my back is straight as a board when it should have curves. For bendies it seems to be related to how our muscles must work so hard. At least that’s my theory.
PalominoMorganParticipantThanks for the post. Dr. D is familiar with that theory.
PalominoMorganParticipantResearch Thoracic Outlet Sybdrome. Fatigue when arms are above your head is a classic symptom.
PalominoMorganParticipantSpondylthesis is when one vertabra shifts off the one below. Image a stack of blocks but then one block sticks out further. Makes the whole “stack”, aka spine, more injury prone and affects load bearing. Spondylethesis is graded based on how far the vertabra has moved off the other. I believe it’s 1-4 and it goes by % of vertebra shifted off the one below. Spondylethesis is not good bc it puts pressure where it shouldn’t be and if VERY bad can result in serious injury to the spinal cord.
PalominoMorganParticipantA 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…
PalominoMorganParticipantHave you been to a GOOD geneticist to be evaluated for a connective tissue disorder? I’d start there.
I have EDS and have heard surgeons describe surgery with us as “trying to sew butter together”.
PalominoMorganParticipantHere’s my “tail”. Not the best MRI quality, but one of the few that shows my entire lumbar and sacral spine.
PalominoMorganParticipantThat spreading scar is referred to as a “cigarette paper” scar. The skin continues to stretch and gets thinner and thinner. Common in Classical and often found in Hypermobility type too, especially in areas like the back and torso. I have quite a few of these.
The scars that are whitish (for me anyway) and raised like a bump are called “keloid” scars. I have these on my arms, especially my forearms.
Hope that helps.
PalominoMorganParticipant*raises hand*
We have neck misalignments because our ligaments are too loose. Ligaments are there to hold bones together in a certain way. Doesn’t always work that way with us as the ligaments get more and more lax.
C1/C2 misalignments can have varied effects. C1/C2 is still considered part of the brain stem so you can imagine the implications.
Traditional chiro adjustments are too fast, too much torgue, and will only make our ligaments and tendons more lax. IF you can find a good PT or chiro who TRULY understands connective tissue disorders then they can be very helpful. My PT is a God sent, but while I got temporary relief from the chiro I am pretty sure he made my neck MUCH worse, including craniocervical misalignment and increasing laxity of ligaments.
Zoloft was ok for me. Cymbalta was a nightmare. My PCP and I can’t remember exactly what it was, but I was way “off” when on it and we quickly pulled me off it.
As for unusual reactions…. get used to it. We are wired differently. Very differently. Our bodies metabolize meds differently, deal with pain differently, etc. Even amongst bendies how we react is varied. Collagen is one of the main building blocks of our body so when it goes wrong the potential for bad things to happen is pretty good.
PalominoMorganParticipantNo 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.
PalominoMorganParticipantI 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.
-
AuthorPosts