Cranial Instability?

[notlob]

Hi,

I have EDS Hypermobility type.

Does anyone suffer with Cranio Cervical Instability? How did you get it diagnosed and what symptoms do you have?

I have nearly all the symptoms on the "check list" and getting worse as time goes on. I had an MR! scan a year ago which showed no abnormalities but this was a laying down scan. I suspect an upright scan would show up something more as most of the symptoms I get kick in when I stand or sit up.

I feel like I'm starting another uphill struggle with the medical profession which is so daunting but I need something done as the symptoms are getting intolerable.

Any advice would be welcome.

Many thanks and have a "good-ish" day!

[Tillyray]

Hello notlob. I see that you have not had any reply to your questions. I am afraid I cannot give you any answers but I wanted to to let you know you are not alone. I am not familiar with cranial instability, but I do myself have signs of POTS which affects me particularly when I am standing.Perhaps there may be some help on the POTS website?..

Everyone I hear from with 'unexplained' symptoms or 'complicated' conditions has a difficult time because of a lack of understanding with medical professionals. I can relate to your 'up hill struggle' because I have been suffering for over ten years and sent in all directions. Hopefully now after my own research I'm on the right path.. If I can give any advice, it is to say don't give up on getting your answers and the hope of treatment. You owe it to yourself.

Good luck and best wishes x

[notlob in reply to Tillyray]

Hi Tillyray,

Thank you for your kind words. It's so thoughtful of you to notice there were no replies and send an encouraging message. I went yesterday for an upright mri scan. It was so uncomfortable being vertical without moving for over an hour but if it shows up something that helps it will be worth it. I should get a report within a week, so I'll let you know.....

At least they take you seriously and don't treat you like some kind of neurotic hypochondriac. In fact I was the third EDS sufferer they had seen in a fortnight, so I suppose that tells us something about the problems we all face being upright!

Thanks once again for your best wishes, will speak again soon.

xxx

[Tillyray in reply to notlob]

I'm glad you're getting good care, and I hope all is well from the scan.

Take care,very best wishes x

[ShezG in reply to notlob]

Hi Notlob,

Could you please tell me where you had the upright MRI as I too have symptoms. I am laying in bed right now after being so unwell and having had a migraine for over 2 weeks. I've had problems with pain in the top of my neck/base of my head for quite some time now. I asked my doctor and he said that he knows of nowhere that performs of upright MRI scans. So it would be really helpful to me if I could go back to him with more information. At the moment I have many things going on, but they just wanted to focus on the pain in my head so have put me on diazepam. Not that it is helping with my neck pain but has calmed the headache. I hope you get some answers. I will be interested to know what your results say. Lots of good thoughts and best wishes

Xxx

[notlob in reply to ShezG]

Hi,

So sorry you are having problems. I went to The Upright MRI Centre in Birmingham. They also have centres in London and Leeds. There is also a place in London called Medserena and somewhere in Bournemouth which also does them. I think they all take NHS patients but I wouldn't think it is very easy to get referred as most GP's don't take much notice when you suggest this as an alternative. Their attitude is "if it doesn't show up on a standard scan or x-ray, then you haven't got it"

I did a self referral and it was expensive but like many people on here it ends up being the only realistic option if you want to find out what is going on with your own body. If we accepted what GP's/NHS told us we would all fall into the only 2 categories they offer - nothing wrong, or it's all psychological. Sorry if I sound cynical but after decades of trying to find an answer to my problems I know the only way is to do your own research, spend your own money and never ever give up. It is SO insulting to be told there is nothing wrong when you know there is - you just need to be able to find it and prove it.

I'll let you know what happens when I get the report of the scan.

Best wishes

[BobLhead in reply to notlob]

notlob,

Right there with you!!

I, too, have a cynical attitude towards many in the medical field for their lack of interest and faith in patients. If we happen to ask too many questions, possibly know some of the answers or, God forbid, have any history at all with depression, we are doomed to be labeled stressed, depressed or as a hypochondriac.

Yes, I have been dealing with neurological symptoms and pain for years with very little progress with diagnosing, until recently. I saw my GP until she seemed annoyed or at very least, dismissive. I also saw a number of specialists (Rheumatologist, Endocrinologist and, of course, a Neurologist), basically, to rule out other ailments.

Other than some irregular labs, there was nothing, except a possible Chiari Malformation. Because this is not understood by most in the medical field, I researched Doctors.

I found one in New York and sent everything I had (labs, scans, etc). I received a call about 2 weeks later and had an appointment the following week. He is a Dr with The Chiari Institute.

Well, I am now wearing a cervical collar, as he prescribed, and keeping notes on how I feel with and without it. I will be returning to see him in July. We will then pursue C1 and C2 fusion for Craniovertebral Instability.

Turns out, all symptoms ARE related and I am not crazy!

Oh how good it feels to be taken seriously!!

It's definitely worth finding the right doctor.

Best of luck. I still have fingers crossed that all will continue to progress and I will actually feel better.

[bombsh3ll]

Notlob please can you let us know what the outcome of your scan showed? I have classical EDS POTS and chronic headaches and am saving up for an upright MRI with the same company in Leeds.

Jying flat NHS MRI normal for me too.

was your upright scan helpful and what exactly did you request, head and neck?

thanks

[Hidden in reply to bombsh3ll]

Hi - I am interested in this. I have a lot of the symptoms but am yet to be taken seriously. My physio told me they'd diagnose craniocervical instability by moving my neck around, which seems unlikely to me. He also told me not to get ideas off the internet. So I figure I might need to self-refer. I am close to Leeds, so would be interested how you went about doing this (and how much it costs...). thank you.

[Sheepishlion]

How were you diagnosed with cranial instability ? My mri only showed mild narrowing , bone spurs ,nothing serious but I have symptoms of instability and am in a lot of pain . I feel like I cannot hold my neck up , nausea, horrid headache, eye sensitivity, pain in neck, back of head and throughout shoulders since it has been so long without relief . I have been diagnosed with Eds hyper mobility . Please help me know where to look for some relief . The pain medication is not enough .

[Kittweeny]

You can get NHS funding if your lucky (it might be better for you to word the refreal from the gp as I did that and it worked better as I got funding) and the best place to go to an upright MRI is in the medserena one in london. They gave a report back to me in a day and I got to take the disk with me, they also are specialised in reading for conditions like eds and know what to look in the images and the positions to put your head (not all upright MRIP places know those things). For cranial instability it's important to have an upright MRI as you can see the effects of gravity on the top of the spine/spinal cord and can see if there is any blockage in the flow of spenalty fluid. If you are experiencing numbness then there's a chance the could be not a fluent flow or a blockage (as there is with me) but I would still keep pushing with doctors (I wouldn't recommend great ormand street however as they don't overly recognise this as a condition and completely dismissed me). Also, a word of advice if you didn't know already, always get a second opinion on the scans as things have been missed with me many a time and the second opinions can be really important.

Hope you have better luck and best wishes x

P.s I just réad on later now and saw that you had a possibility of arnold chiari malformation, cranial instability has a lot of similar symptoms as that and at first, I was undergoing investigations for that, but it turned out I had cranial instability and compression on my spinal cord-but this might be an insight to what's coming-right now I'm not sure where to go to next after getting the report back saying about the instability and compression on my spinal cord, but I might end up having a fusion-where are you looking to get yours as I don't really know about where to go next?