February 9, 2015 at 9:14 pm #787
Hi everyone. I’m new to the forum and am hoping someone can shed some light on whats going on. I have some neck issues that have been going on for a few years. I have been diagnosed with EDS type 3 along with other related problems and I have suspected for some time that I have either cervical instability or Chiari. I have widespread hypermobility in most joints. I have also had another increase in symptoms in the last 4 weeks after what I suspect was changes to my physio exercise to include stretching. I am undergoing rehabilitation, or was up until this happened. This prompted me to get a normal lying down MRI a week ago which was of course “normal” as read by my rheumatologist. Upright MRI’s are not available here yet. He said there are some problems but nothing that could explain the recent increase and severity of symptoms.
Symptoms are neck pain at the base of my skull and center of neck, headaches/migraines (the worst are from the base of my skull travelling up the back of my head and to the center of my eyes), dizziness that I can only explain as l’hermittes sign on neck movement, very crunchy and clunky neck movements, facial pain and numbness, tremors that are usually in my hands but can be felt everywhere, different levels of tinnitus, some shooting pains and a general increase in pain levels. I have been put on pregabalin at 600mg a day along with my current tapentadol meds. This has helped a bit but I’m still in a lot of pain. Lying down is the best relief I can get.
My next course of action was to try to get an upright MRI but this will involve travelling abroad. So I was hoping someone could look at the attached pictures to help me decide on whether it is worth pushing for the upright MRI as it will be quite expensive. The first picture is the center of T1, pic 2 shows a white dot that can be seen in the following slice??? no explanation as to what this is yet, then in pic 3 I was wondering can chiari only be detected in the center of the spinal cord? Is it pointless trying to work anything out from these MRI’s, should I just go for the upright??? Any help will be very much appreciated as I am really starting to feel hopeless and resigned to having this level of pain forever. Thanks in advance for taking your time to reply.February 10, 2015 at 5:44 am #5284
Look up EDS Mystery Diagnoses… there was a teenager that didn’t have the normal bulge but once they opened it up she had (I don’t want to spell it wrong)… Look up the video. It will show everything.
Good luckFebruary 10, 2015 at 6:07 am #5285
Hi Echo. I’m not sure what bulge you are looking at. Is it at the base of the skull? Thanks Echo.February 10, 2015 at 11:40 am #5286
I meant chiari
Here’s the video and the finding of the chiari takes place after 17 min into the video
https://www.google.com/url?sa=t&source=web&cd=2&ved=0CCMQuAIwAQ&url=http://m.youtube.com/watch?v=qBGjQT9jpc0&ei=TjDaVIKvOpfVoAS44oGIAQ&usg=AFQjCNFFwqJV3pRczZpcmKDb_Br_zmDOPg&sig2=K4b4AFFwLC8XkAA1mv0oKwFebruary 10, 2015 at 5:15 pm #5287
Thanks very much Echo. I’ll have to look into this more, retroflexed odontoid. I appreciate your help.February 11, 2015 at 5:55 pm #5288
Do 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. SeanFebruary 11, 2015 at 9:22 pm #5291
Yes the cerebellar tonsils (lowest part of the hind brain) are usually lower, on subsequent MRI slices to either side of the midsagittal view, as I can see yours are. In fact yours appear to almost abutt the Foramen Magnum (opening at the bottom of the skull) which can cause interruptions to the flow of CSF (Cerebro Spinal Fluid). This interruption to free-flow of CSF can result in raised intracranial pressure, often in these types of cases, which will not be discernible with a lumbar puncture (NOTE: see below, avoid lumbar punctures at all costs!)
What happens is that the low-lying cerebellar tonsils (sometimes referred to as Chiari 0) can act as a ‘bung’, so any raised intracranial pressure above it cannot normalise. Your description of symptoms of pain at the bottom of the skull (this can radiate down the neck and into the shoulder) and pain or pressure behind the eyes are typical of this sort of problem.
Having a lumbar puncture can worsen the affect of the ‘bung’ (and thus worsen symptoms) due to the lumbar puncture reducing the spinal CSF pressure and the raised intracranial pressure forcing brain matter into the hole at the bottom of the skull. Often in this type of case, the lumbar puncture shows a low or normal reading, when intracranially the pressure is raging!
I can also see from your scan that you have a Retroflex Odontoid and also a loss of ‘lordosis’ (the normal C shape of the spine) in your upper cervical region. The gap between the Opisthion (bottom back of the hole at the bottom of your skull) and the top of the back of C1 may be a little wide too, it’s difficult to tell but I notice this on a lot of people on this forum.
As for the bright white dot lower down your spine, I see it but I’m not sure what that is, did the radiologist not say ?
(UK)February 11, 2015 at 9:39 pm #5292
Also, look into Magnesium, there’s loads on here, if you do a search and also Dr Diana has a video on it. It helps reduce migraine headaches, lower intracranial pressure and may help reduce your other pain and possibly some more of your symptoms. Easiest way to absorb it is in an Epsom Salts bath.
BFebruary 11, 2015 at 10:13 pm #5295
Barabra, 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.
SeanFebruary 12, 2015 at 4:06 am #5297
By the way Seanos , the discription of your head pains sounds just like mine. I’ve pretty much given up on doctors or trying to get them to help me. (They all just seem to want to put me on pain pills instead of figuring out what’s going on) I’ve been getting MRI scans for years and besides bulging discs most of my symptoms (bizarre sounding as they are all make sense now that I’ve been diagnosed with EDS. Tremors, headaches in the back of head, eyes etc etc.
Hope you find something that fixes the pain.
This is all quite new to me.
EchoFebruary 12, 2015 at 5:23 am #5298
Sorry 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?
SeanFebruary 12, 2015 at 8:27 pm #5300
Thanks 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.
SeanFebruary 16, 2015 at 6:33 pm #5308
No probs Sean,
I would be asking them outright what the white dot is, I’ve looked at many many MRI’s and not seen anything that looked like that, as an ‘artifact’, before. Looking at your MRI, do you have a degree of Scoliosis ?
When you have the Upright MRI, I would suggest they take:-
one in neutral,
one with the head in in flexion
one with the head in extension
also, before they start, ask them to assess you according to method described in the following paper (it’s the most comprehensive method I’ve come across, to identify EDS type problems):-
If you’re in England:-
See if your GP will refer you to a Neuro-opthalmologist to investigate the eye discomfort, they may see medical signs in the eye, of raised intracranial pressure, which would probably be treatable with Diamox.
Also ask your Neuro if he will refer you on the NHS for a Cine MRI, to check your CSF flow, at the craniocervical junction. This will show if there is any interference or interruption in the CSF flow between your head and neck.
Did you look into the Magnesium deficiency issue because taking certain painkillers repeatedly adds to the deficiency. In the form of Epsom Salt baths, it can ease muscle pain, relieve headaches and aid sleep too. If you haven’t the energy for a bath, try it in a simple foot soak, apparently that works too. Decades ago, when things weren’t complicated by endless pharmacological choices, they used Magnesium to reduce intra-cranial pressure, so it’s well worth looking into.
(UK)February 16, 2015 at 7:34 pm #5310
Barbara, 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.
SeanFebruary 17, 2015 at 5:32 am #5311
GRrrrrr, 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.
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