need advice and support :(

[unclematty]

hi all
I was diagnosed with mild chiari malformation type 1 last year and all I was told to do was take it easy and take amitrypiline for the pain, however the pain killers aren't helping (been taking them for 7-8 months now).

in November 2014 I got concussion due to a 10 ft wooden fence post falling on my head and knocking me out, no xrays were taken etc and I didn't stay in due to personal reasons even though they wanted me to. since the accident my symptoms have gradually gotten worse to the point where ive started passing out again. however new symptoms have arose ... I don't know whether they are linked to chiari or not?
nausea
often find it difficult to swallow or like theres something in my throat
back pain in cervical  and lumbar areas

if anyone can give me some guidance on what to do I would be most greatfull ... I don't want to go back to neurologist unless it is definitely necisary!

thanks
matty

[selmaS]

  If it is one thing I learned form this condition is we always hurry up to wait.....so we learn patience along the way...which is good, since if and when we do have surgery we have to be patient with our recovery....

I know it is not easy....but relax into your wait so it is easier to deal with.

[unclematty]

Saw the doctor today ...my neurology has been rushed through but still means waiting 4-8 weeks to get an appointment... I've also had my amitriptyline  upped and have to start taking anti inflammatory meds daily as she thinks I may have muscle damage in my back from collapsing etc

[selmaS]

  Here is a link to that thread of activities to avoid-

http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

[Elisaandbucky]

Hello matty, It sounds like you are struggling, and I hope the support here can comfort you. The very first thing to consider is to do your research. I never stop reading about the brain - especially about Chiari and the related issues. My first appointment (with a neurologist who did not specialize in Chiari) really discouraged me. Finally, it was my general practitioner who really encouraged me to seek more specialized medical care for my pain. As Selma say above, there is a list of Chiari specialists on this forum. Depending on where you live, you can try to find one; however, you may have to travel a bit to see a true specialist. I travel from the very southern edge of NC to see my doctor in NY.

At the same time that you are researching for specialists, there are two key things to help you when you do finally find a good one. Keep a very specific pain and symptom journal - dates and brief mention of what activities may have contributed to them. With it all in writing, you will not have to remember everything you want to say when you are in an appointment. You don't want to come home and realize that you forgot to tell the doctor something important. For me, it is always amazing how good I (think) I am feeling when I do see the doctor. The other thing that is important is to keep a file of all your test reports from MRIs - even the disks from the studies. Ask for one at the time of the procedure so you do not have to go to get it later. I hope you can get some comfort from visiting this community. I know that I do. There are very caring and knowledgeable people here. Keep current with your status so we can continue to help you.

[selmaS]

  I am not sure how your NHS works but I know several from the UK have used the list from Ann Conroy Trust to help get more info and help....maybe suggest to your Drs to consult with one?...worth a try.

I will look for the link to the list of activities to avoid with Chiari and Syrigomyelia.

[unclematty]

I wasn't told there were activities I should avoid O.o ....not one of the doctors in my area seem to have a clue what chiari is tbh

Being on the NHS though I'm not sure how it will work finding a specialist especially one near enough to me

I am however seeing my GP on friday as my symptoms are becoming unbearable and are beginning to effect my course work etc for college ...she wants to discuss pain medication with me too as I'm in constant agony atm so we shall see how I goes then

[Kvaa]

Hi unclematty.

I have to agree with selma. My symptoms got much worse when I had my concussion a few years ago. Please go get it checked out no matter how much you don't really want to. Everyone gets tired of the whole dr routine but if you don't advocate for yourself and your health, no one else will.

[selmaS]

  Hi and welcome to the Chiari forum,

Yes, an accident of any sort can trigger symptoms to flare up and new ones to surface.

I see you are in the UK and I know it is not as easy to get to a true Chiari specialist but we do have a link to the Ann Conroy Trust that have Drs listed that treat Chiari.....Do see the list and research the Drs as best you can.

A new MRI should be done as well as a CINE MRI to check for a CSF obstruction.....MRI's to rule out Syringomyelia and other spine issues like bulging disks or tethered cord.....

Testing to rule out the other related conditions is also something you will want to have done....


Typically Chiari symptoms cycle...and come and go...each time they flare they can be a whole new set of symptoms.....we also have a list of activities one should avoid as they too can trigger symptoms to flare.....

  Do look into finding a true Chiari specialist to help you and inform them of the accident you have had since your last MRI.