I have now had my diagnosis of Arnold Chiari Malformation 1 with Syringomyelia (although not sure on mm decent yet).
I believe I have been symptomatic for many years but as with many people, it has always been put down to other things such as, my job, too much caffiene, 'everybody' has headaches etc.... very frustrating.
I now live in Spain and am seeing a neurosurgeon here. I know there are 2 specialist centres for Chiari, but I am not being seen at either of those (not sure why).
My doctor here is a bit of a strange one, I have had Migraine since I was 11 years old (I'm 37 now), and have had more episodes recently so asked her for some 'Imigran'. Basically, she refused to prescribe them, telling me that the migraine needs to be confirmed by a neurologist first - It was, when I was 11!!!
Anyway, due to the problems with my doctor, I'd like to know what medications I might need in the future, so I can ask the neurosurgeon to make these available when I need them. I have to travel 2 and a half hours each way to see the n/s so dont want to go just to ask for some meds.
I only use co-codamol at the moment, but only take it when I really cant take anymore and my doc is reluctant to prescribe even these!
My symptoms are varied and many. I have several different types of headache (including the real 'bangers' at the base of the head), very stiff from top of neck right down to lumber spine with pain & discomfort most of the day every day, severe pain in my rt shoulder, pain occasionally in lt shoulder, very weak 'clicky' wrists, pain in hips esp the rt one, knees that feel like jelly and sometimes give way, numb areas in different parts of my body (some lasting months at a time), poor temp control (this shows up on my spinal cord), probs with my eyes (floaters, blurry spots, very photosensitive), lots of shooting pains - some from neck all the way down to feet or hands, poor memory, problems with sound at times and at times co-ordination is wobbly, heart palpitations, the shakes, some days I feel so tired and weak. There are many more, but can't remember all of them.
I'm not really sure I'm under the right n/s for my condition, because he specializes in ms, not chiari. I have to go back next week, and would like to know if any other tests will be done too. What tests should I expect following diagnosis - It all seems a bit vague. Also, how often should I be reviewed?
I want to be as knowledgable as possible about my health and this condition. Any help or advise will be greatly received, also, are there any websites you could recommend for researching Chiari & syrinx.
Sorry, I know I've gone on a bit, but this is important to me.
Thanks for reading x
HI...haven't seen u on the forum in a while...sorry u r dealing with drs that don't seem to understand....
I was not able to find a med that helped with my HA's...I am happy to hear u have found something that helps u...can u get ur medical file forwarded to this dr?
U will need a Brain MRI w/wo contrast...MRI's of the cervical , thoracic and lumbar spine....along with a CINE MRI to see CSF flow....the drs will be looking or should be looking for CSF blockage and overcrowding....mm's of herniation r not as important as flow and overcrowding......most times after chiari surgery the syrinx resolves on its own...not always tho...but it is a possibility.
I use co-codamol because I trust it and it still allows the pain / discomfort to be noticed, it just about takes my mind off it really. I usually use it for the really bad headaches when paracetamol has failed, or if my back is worse (usually if I've done too much).
As I mentioned, I believe I have been having symptoms for many years and I think I've got used to most of them. I try to help myself before turning to drugs, and at the moment I am managing that reasonably well. I find that I have good periods and bad ones (probably the same as other people with the same condition). Usually when I have a bad period, things just seem so 'black' and hopeless. This is also when it affects my sleep because of the severe pain. I have to use additional pillows to get comfy in bed, and have a waterbed, which I believe is the best thing for comfort.
I have already had a full spine mri with contrast, which shows the tonsillar decent, but doesn't show past the cerebellum. I have since had a head mri so they can check it properly (or to rule out other causes of the decent). When I went to Barcalona to see the n/s for the first time, the results of the new mri were not on the computer, so it was a wasted trip! Frustrating. I really don't travel well, and to sit on a train for 2 and a half hours each way for nothing was almost too much to bear. I become very uncomfortable, very quickly when sitting for more than about 20 mins. The nerve pains are relentless.
Although I feel I am managing quite well now, I want to prepare for my future, if surgery is not an option. I want to know as much as possible about chiari & syrinx so I can help myself as much as I can, but to know that medication is available when I need it. I have dealt with so called 'nerve' meds which seem relatively 'hit & miss' with regard to controlling nerve pain - they are also well known for their side effects too which makes me reluctant to use them, but it might be someting I am forced to consider if (or when) my symptoms worsen. I know my symptoms are worse now than they were 12 months ago, so how will I be in 12 months time? Fortunately (or unfortunately), I am a nurse, but prior to my mri last year, I knew nothing about this condition as my speciality was with elderly patients and stroke. Since learning about this condition, I have been doing quite a bit of research, but can never find good info about how this is managed if surgery is not carried out. I have looked at info that says surgery is always indicated if a syrinx is present (which I have), and that sometimes this will resolve the syrinx, but if the n/s says no surgery, what next?
The language can also be a problem, my husband & I know enough to get us by, but when you're talking about your health - you need to be sure of what is being said. I could have a translator, but they're very strict about numbers of people in the room, so they say just 1 other person (I really want my husband to know as much as I do and want him there with me, so it's the translator or my husband - he wins every time. He is the one that this will affect (other than myself of course). Sorry about all of this, but I've got to air it somewhere, and you are so very helpful. I have not spent much time on the forum because I've just been so busy and wanted to wait till I knew more about the condition. Time just goes so fast too. I am seeing my doc later today to see if the results are on the computer before I head off to Barcelona next week to see the n/s again. I hope they're there.
For ur next 2 hr train or car ride take a pillow to help cushion ur head...it is all the bobbing around that makes it soooooooo uncomfortable.
I do not know much about the Barcelona Chiari center, but have seen advertisements for them,please keep us posted on the clinic/center as a whole....
Vent as much as u need as this is the place to do it....u know we all understand, and will not get upset ......I encourage u to get it out here so ur family only gets the little doses.....
Most times a PFD will help a syrinx shrink.....not always, but can help lessen the compression on ur cord.
Ask that u r tested for tethered cord, Ehlers-Danlos too......
And lastly, u have a right to have a translator and that person should not "count" for the # in the room.....it will not help if both u and ur DH do not understand what is being said......insist on the translator and ur DH being in there with u!!!
Please keep us posted on ur next dr visit...and pop in netime to vent : )
Just thought I'd update you on my visit to the n/s in Barcelona.
Another complete waste of time and to make matters worse, I don't think he knew much about Chiari either. I asked how many mm's decent I had, and he was showing me on my mri image, but i had to correct him about where the 'line' was!! Then he just said the amount of decent wasn't important. He said I didn't need surgery and that was it really. I asked how often I should be reviewed and how, and his reply to that I should go to my doctor if the symptoms get worse. I also told him that compared to the same time last year, my symptoms are worse, but he just smiled at me. I asked about medications that might ease my symptoms for when I am struggling to manage them and he told me he was a surgeon and didn't know.
I think that I manage my symptoms very well, but there are days where I get a lot of symptoms (usually when I have a very bad headache), and I take paracetamol & codiene (this helps, but doesn't take all of it away). Most of the time I am able to minimise the activities which cause me problems, and when I can't avoid them, I adapt techniques for minimal discomfort. Unfortunately, I feel like I'm on a merry-go-round and cant seem to get off it. I am going to try to talk to my doctor about the whole situation and see if we can work together on this one.
I am not mad anymore - just bemused by it all. I have no idea how to get to see someone from the chiari centre, or even just a n/s that knows more about it. Anyway, that was it. Hope you are well. Thanks for listening. Lisa
Wow Lisa, it goes to show it doesn't matter where u r in the world we all can find drs that just do not know and do not seem interested in educating themselves about chiari.
So, this was just a NS and not one at the Barcelona Chiari center.....they do have a web page...mayb u can contact them directly and see how u go about becoming a patient.
the above link is for the Chiari Center in Barcelona.
Hi Lisa, I am sorry (but unfortunately not surprised) that you are going through this. I was put on Lyrica during the week for nerve pain, it is to soon to say if it is helping as the NS said it will take a few days to kick in.
I think another member here (jacmurphy) did contact one of the Chiari Centers in Spain about her DS who was recently DX't with CM, she may be able to give you info on it.
Hi, I have not spoken to you before, but 'Ray' told me you have recently been in contact with the chiari centre in Barcelona. Is this right?
I have recently been diagnosed with Chiari (type 1) and syrinx, but am getting the runaround. The n/s I have recently seen either has little knowledge about chiari, or just cant be bothered, so I was going to contact the centre myself to see if I could get an appt with someone who knows about this condition.
Any info you could give me would be greatly appreciated.
I really can't tell you anything good or bad about that Barcelona Centre. I would love to find out more myself. But the letter I got back from them raised some red flags for me. They made it sound way to easy. I just think a centre like the Chiari Institude in New York would be carrying out their procedure if it was as good as they say. I'm still trying to find out more though.
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