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seanosParticipant
Hi Dr Diana. Thanks very much for the reply. Sorry I should have said in the last post that the radiologist specifically said that there is no cervical spine instability. Yet each of the things he mentions above point to instability but he says my cranio-cervical junction is hypermobile. I would have thought it was the same. I don’t know…
Thanks very much for the suggestion, I will certainly discuss this with my Dr. At this stage anything is worth a try. I can see it has helped a lot of people. I do feel a lot of pressure in my head/ears/eyes regularly along with the headaches, neck pain, tremors, tinnitus etc. I also have a lot of POTS type symptoms and l’hermittes, shooting pains, pins and needles etc. too and I’ve noticed lately that I have no gag reflex at all. There has to be something more than just “hypermobility” going on.
Thanks again for the suggestion Dr. Diana.
seanosParticipantThank you so much for all your help Barbara. I think I just needed some reassuring. I feel way better prepared now to face the next battle and get.back to some sort of a normal life. Take care and thanks again.
Sean
Whoops, brain fog. Forgot I posted already, sorry 🙂
seanosParticipantThank you so much for all your help Barbara. I think I just needed some reassuring. I feel way better prepared now to face the next battle and get.back to some sort of a normal life. Take care and thanks again.
Sean
seanosParticipantThank you so much Barbara, you have put my mind at ease, I just needed a bit of reassuring. It’s great to be know this ahead of the scan. If I find out what that spot is I’ll let you know. Take care and thanks again.
SeanseanosParticipantGRrrrrr, called the MRI center and they told me to go back to the consultant and ask what the white spot is, and get the consultant to call the mri center to discuss it. I already have a feeling that my consultant is annoyed by me pursuing this further, he already checked it and said it was “normal”, with the inverted commas. I went behind his back to get the upright mri too. You do what you have to though.
I also got a copy of the radiographers report and there is only mention of degen. disc disease especially c4-c5. Every thing else is normal, including alignment, stenosis etc. Last comment is “overall appearances are very stable with no sinister abnormalities”. The retroflexed odontoid is very obvious but no mention, same with scoliosis, that mysterious white dot, obvious lordosis, abnormality with C4. So I just don’t know??? 🙁
It’s so frustrating. I’m at my wits end with all of this. If the upright comes back normal I’ll crack up. Is there definite signs of Chiari??? If there is, would that level of chiari and the retroflexed odontoid etc. cause my symptoms? Sorry to ask again but I am really doubting myself today. I’ve had a horrible few days of pain, dizziness, memory loss, stuttering, loosing words in the middle of conversations on top of all the other problems, then my two legs went numb last night too, took me ages to stand up. Scary!!!
Thanks again Barbara.
SeanseanosParticipantBarbara, thank you so much for this info, its great to be prepared. And thanks for taking the time to look at this again. I feel like things are getting a lot worse now, day by day. I can’t do any sort of physical exertion without being in total agony, as opposed to when I do nothing I’m in bad pain 🙂 The pain and headaches leave me in tears and ready to pull my hair out, whats left of it anyway. I’m spending every day in bed or on the couch. I hate sitting around and not being busy. The start of the gardening season is around the corner too so the quicker this gets moving the better.
I am getting the MRI done in the Medserena Center in London, just waiting for a date. Professor Grahame in London has referred me and explained that they test for instability and Chiari using the same methods as the US. But with this info I’ll make sure its right and know whats going on.
To me it looks like C4 is chipped and I thought that the white dot could be a bone fragment but I would have thought that would have been noticed. But then again I’ve heard most radiographers just look at the center slice (is this true). The dot is very small in the center and bigger in slice 9, so its hardly an imaging problem. Its like its showing a bit of the side of the object in 8 and down the center of it in 9. Could it be a syrinx? I might just call the MRI center in the morning. I have a stingy pain around C4 with stiffness and crunching/cracking, well that’s in most of my neck anyway.
Professor Grahame noted that I had a small degree of scoliosis, but that was 3-4 years ago. I haven’t really thought about it or brought it up with anyone since. I haven’t had any other dr comment on it either. Its very noticeable in the PosDisp??? view and looks bad enough.
No, I’m in Ireland Barbara. Are Cine MRI’s widely used? It’s probably the same as the upright MRI, not available here and I have to pay out of my own pocket to get it done. When getting an upright do they always do the three positions? I was told the scan was £800, but is that per position or full scan. That’s another call I need to make.
Ohhh, I would love a Epsom salts bath now. It would be heaven but… no bath. I got sick when I was renovating our stone cottage and never got to finish it the way I wanted. I will try soaking my feet in the morn. Thanks for the tips. Lately I’ve had a feeling of pressure in my head a lot more and more intense so great if it helps. I’ve actually been craving things with magnesium like seeds and nuts. I’ve been eating handfuls of seeds.
I will definitely discuss all of the items with Neuro, when I see them. Waiting lists are horrendous in Ireland, even for Private patients. I might get a break this time though.
Thanks again for your help Barbara. It has been extremely useful and hopefully gets me on the path to a concrete diagnosis, not that I want it, and to some sort of treatment that works.
Sean
seanosParticipantThanks for your help Echo and Barbara. I’ve started the process of getting the upright Mri in London, been in touch with Prof Grahame. Hopefully I’ll get a date soon and get started. It should be interesting to see the difference in the upright. Every day my symptoms seem to be getting worse so I hope something can be done. Thanks again.
Sean
seanosParticipantSorry to hear you’re going through these symptoms for so long. Its a disgrace that you have had to deal with it for so long. I have had all of these symptoms in the past at different times but in the last month or more its constant and I’m cracking up already 🙂 Everything you do is such a challenge.
I’m the same, lots of meds (seems to be max doses of everything) and still suffering. I would be a lot worse without pregabalin though. Tapentadol seem like smarties, I’m taking instant and prolonged release. I’m sure I’d be worse without them though. My GP thinks I’m crazy and my Physio and Rheumy think that nothing is wrong, just some degenerative disk disease and some arthritis and stiff muscles. Nothing Physio wont fix. Ha, I was in rehabilitation for EDS problems when all of this kicked off. I was testing to see if I could swim in the hydro pool. Ironic or what!!! It’s a battle to try to get anywhere with all of my EDS related problems, I’m going around in circles. I think one of the problems I am facing is my income protection insurance company decided I was fit to go back to work at the same time as this is happening. I’m sure my Dr’s will be suspicious and this will skew their thinking. Maybe I’m paranoid but I think it’s probably natural for them to think that, especially with a “normal” MRI.
Are you new to having EDS or Chiari? I’ve just about gotten used to having EDS and now this!!! Having looked up Chiari 0 it makes complete sense. I was able to compare my MRI to this https://www.youtube.com/watch?v=-e-9rdpTXAo. It is so similar. I always get this feeling of pressure in my head too. When the pain is worse the pressure is worse. Also I’ve fallen a few times, made my already constantly dislocated wrist worse in one fall, bladder issues, temperature problems, the list could go on for a while. But lots of things make sense to me now. Have you found that symptoms have changed over time, since it’s been left untreated? Have you found any way of getting any relief? Do you use a collar.
Thanks for pointing it out and for your Echo, I’ve only had a few hours sleep in the last few days so my brain is not firing. Hope you get some help soon. Are you in the UK?
Sean
seanosParticipantBarabra, thank you so much for replying. Sorry I’m a bit slow, do you think it could possibly be chiari 0 then? I haven’t seen the radiographer’s report myself but my GP and Rheumy said that it was “normal” and did not show the cause of my symptoms and neither of them mentioned the white dot. It’s strange because it shows up in slice 8 and smaller in 9 so I would have thought that it was not a “blip” with the equipment. I also have constant pain around c4 too. I have attached another pic, c4 looks to be abnormal but again no comment on it. I’m off to neurology next but I have a feeling its a waste of time and that I should just go to Professor Grahames’ team direct. It will be interesting to see how things would look in an upright mri. Thank you soooo much for having a look at this Barbara. I hit a brick wall after being told the mri was normal. It’s so frustrating but has become the norm now.
SeanseanosParticipantDo you think its worth my time to get this investigated further, upright mri? Does it look like this could be the cause of my symptoms? Thanks again. Sean
seanosParticipantThanks very much Echo. I’ll have to look into this more, retroflexed odontoid. I appreciate your help.
seanosParticipantHi Echo. I’m not sure what bulge you are looking at. Is it at the base of the skull? Thanks Echo.
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