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samuel94Participant
Lying position:
Upright:
Note: I still had to lean my head against something, it was in sitting position and they didn’t change position.samuel94ParticipantWell, I wish we had docs here in Germany is brilliant as you, Dr. Diana. But a lot of doctors (I have seen) are just like dumb sheep in comparision. No, they didn’t tell me about Diamox and after I asked they just said it won’t help, great.
I’m pretty sure I have a retroflexed odontoid but it changes from time to time like other joints in my body due to EDS. Also I often crack my neck and try to figure out what’s wrong. Once I succeeded to stop the swollen feeling as it started again by cracking my neck a lot. I know it’s NOT good but I’m trying to stop.
But also a lot of osteopaths worked on m cervical spine which helped but wasn’t a long term fix.
And all MRI’s were taken when me symptoms weren’t that bad with double vision, confusion and difficult breathing and so on.
And I can see that the odontoid changes in MRI’s as in one MRI it looks pretty normal.
I’m going to post pictures again so you can see it.Samuel
samuel94ParticipantI like it how you still try to see it optimistically and concentrate on what parts are not affected of your body!
For me it’s my knees which is funny because most of the other EDSers I’ve met or heard about get horrible probs with their knees at first or very early, but not me. ๐
For me besides having congenetical hip dysplasia and bad feet it started with my fingers and still my hands are total crap and over the years my other joints like shoulders and ribs became more and more loose.I also mentioned RO but it didn’t interest anyone and somehow they are not used to look at the most top vertebrae rather than the lower ones.
My Syringomyelia is a long one which starts in my thoracic spine where there are also shadows in my nerve water (artifacts due to blocked CSF). That’s why you can’t see anything on the head MRIs.
And I have a mild scoliosis which can be a result from Syringomyelia but idk.Nope, I didn’t always get the paralises after sleep, sometimes but not always.
The two last ones happened during the day, one started after the swollen throat sensation, the other one with weakness in arms and legs.
My throat had a swollen feeling and my breath soundes weird but they didn’t see it swelling so it must be anything else.Well, for my stomach and gut it is more than just taking Vit C as my connective tissue is just hanging there. Result: delayed/nonfunctional peristalsis, reflux, gastritis and strange digestion, you get the idea.
I took C some time ago for some weeks but didn’t notice any improvement.Thank you so much for your help, I would be really lucky, if you could send me details about this Neurosurgeon in Bad Wildungen via PM.
Thanks!
Samuelsamuel94ParticipantHi Barbara,
Bad Wildungen isn’t as far away as I thought at first. It’s about 160km/99.42 miles away from me according to Google Maps. I live near Cologne. Why do you ask, is there any doctor who knows more about it?I got the diagnosis “Zervikalsyndrom” (“cervical syndrome”) from my orthopedist after I told him how loose it is and I that I often need to get vertebraes relocated by osteopath and it pops a lot and so on. He gave me a foam collar (didn’t help) and told me I should only wear it when driving in a car. A this time I already walked funny but I didn’t have a bad paralysis.
Some weeks later I couldn’t breathe (happened before) again and so my Mum drove me to ER where I wasn’t able to walk anmore and had to drive my in with a wheelchair. I had tachycardia and high blood pressure and fainted again. They gave me prednisone and as it didn’t helpon artificial respiration.
After I woke up again I couldn’t move any part of my body besides my head (I had this multiple times before) and my ability to move my arms came back later. But this time the ability to walk didn’t come back. My legs are shaky, if I try to put weight on them and I fall down.
But they weren’t able to find anything and told me it’s all in my head.But we didn’t agree and showed MRI pics to another radiologist who found Syringomyelia. So we send those pictures to one of the leading Syringomyelie experts in Germany and he diagnosed me with blocked CSF flow and Syringomyelia and that my cervical spine is missing it’s bending and looks like I had a whiplash.
And there’s nothing I can do, I have to accept it.
That’s everything that happened about my cervical spine till now, nobody looked at my odontoid or brainstem.
And I wasn’t able to find a doctor who wants to look any further.
Cool, isn’t it?I bought the Philadelphia collar on my own to see, if it helps me as the foam thing is crap. It’s better but I’m still not able to walk most of the days.
I don’t rememer having an accident to my cervical spine, maye it’s just EDS or the doctors pulling to hard on me in ER?Sorry for this long text. I hope you are able to understand everything as it may be a bit complicated.
And I would be lucky, of it only were my cervical spine. But it’s also my hands, shoulders, feet, jaw, eyes, ears, sinusses, stomach, bowel, lungs, kidneys, allergies and so on. And some of it still isn’t clarified and sometimes everything is just too overwheming for me.
But that’s a normal EDS life I guess. ๐Samuel
EDIT: As treatment for this I have physical therpy where they do isometric muscle training for my legs and arms.
samuel94ParticipantYep, I already found this out some time ago und so I take about 600mg Magnesium daily.
samuel94ParticipantHi Barara,
thanks for your reply!
Somehow it’s nice to hear I’m not alone suffering from this but on the other hand it’s really sad.
Yes, I wear a Philadelphia collar but not all of the time because it will make my muscles weaker.How did they test you for retroflexed odontoid? And isn’t there anything you can do like surgery?
Here in Germany doctors gave up on me or more precisely lack knowledge and aren’t interested in finding a solution for me.
I’ve heard health care is better in UK than Germany and you even have a clinic for hypermobility?For Vitamin D I already planned to get B12 checked and I can also ask my doc to check my D levels.
Samuel
samuel94ParticipantThanks for your reply!
I just downloaded it and filling it out this night as it’s one of those sleepless nights again.
Idk, if it’s good or bad but I can answer almost anything I’ve read till now with yes. ๐
And I’ll definitely need some help from Google translator. ๐samuel94ParticipantThanks for all of your answers!
A late update, if this interests anyone with similar issues:
I definitely have EDS and got diagnosed (but without type due to a lot of overlapping) and they are still trying to figure out my EDS type.I don’t have Chiari but cranio-cervical instability and a cervical-spine that looks like I had a whiplash without having it.
I have blocked CSF flow and a pretty long Syringomyelia in my spinal cord as a result.Some symptoms (only Syringomyelia, not EDS-related):
headaches, chronic pain (in addition to my EDS pain), double vision, pressure sensation, whooshing tinnitus with heartbeat, a lot of passing out,
weakness, fatigue, lameness in my legs most of the time (wheelchair), gag reflex problems, throat swelling sensation, vertigo, brain fog, speech problems, POTS.samuel94ParticipantI hope this view is better. I think the first one was made without contrast and the other ones with.
http://file1.npage.de/000813/48/bilder/sideshot.pngsamuel94ParticipantThank you for the answers!
Yes, at first some of the pictures were taken without contrast and after that some with, I guess that’s the cause for all the white spots. Of course I can do more screenshots showing my profile, I’m gonna post them in a few minutes. I hope I’ll pick the right pictures, it’s difficult to understand for me because of the language difference.^^ I would upload all MRI pictures if I were able to, but this strange viewing software won’t let me and the files on the disc aren’t just pictures. -
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