Hi everybody, Firstly thank you to the people who already posted comments to my wall yesterday. It made for a warm welcome.
Ok so where do i start?
Firstly i'll do a little background to my Chiari Malformation 1 which i have been aware now for approximately 16 hours.
I'm 28 years of age and have been serving in the Royal Navy since the spritely age of 16. Ever since i can remember i have suffered bad with headaches... To the point where as a child i would pass out in various locations with intense head pain and extreme fatigue.
I had somewhat of a disruptive childhood with my mother suffering with post natal depression when i was born and it pretty much continuing till i left home at 16. My father passed away when i was 11.. Im not looking for the violin strings or anything like that im just trying to paint a picture as to why as a child i went through this and you will eventually think to yourself why didnt he get any medical help?
When i finally left home the headaches did calm down for a little while until after about a year in the forces. I had had to hide my headaches prior to joining because at the time you couldnt join the armed forces if you suffered with migraines. and weather this had a somewhat placebo affect im not sure but i do remember prob about 12 months of respite.
The headaches started again and this time i started getting what i believed to be correct medical help. They prescribed me migraleve pink and yellow and this did somewhat help the problem. They also tried me on some Triptan based migraine nasal spray to which i suffered a severe allergic reaction. (Now allergic to Triptans) Suffice to say they were getting worse and i knew if i continued seeking medical help from the military i could potentially lose my budding career. So i hid the Migraines/Headaches and self medicated for the next 10 years. When i say i self medicated i mean that i would periodically go through all sorts of over the counter painkillers until they stopped working. Even to the point where my Nan was giving me strong cocodomol that she was prescribed.
About 12 months ago my symptoms changed drastically. I started getting really really intense pains in my head that would cause mt o pretty much collapse. My vision would close in from the sides and i would get deep deep throbbing in my skull building up to a peak and then slowly dying off, as long as i held my head and remained motionless that is..... I had quite a few of these episodes ranging from times when i was coughing/sneezing/sitting up suddenly/getting out of bed too quickly/Laughing too hard... I decided it was time to do something about it when i had just attended a horse riding lesson and on the way home i laughed at a joke my friend made in the car... We almost crashed and i had to stop the car in the middle of a busy road until the episode had passed....
When i told my wife Katie about this and she was insiting i should go back to the doctors... It was only when i got a posting to Afghanistan for six months and realised while making my preps to go that i wouldnt be able to go to the supermarket and buy painkillers that i relented and went to the doctor... After telling them the situation and then explaining why i had been hiding it they started trying to treat me.. Initially for migraines... I started Physiopherapy on my neck and they put me on a heavy dose of Proponolol for the whole duration of the Afghanistan tour.
I got through Afghan with the help of the proponolol which did seem to help but when i returned home i noticed extreme side effects which were very detrimental to my home life (Loss of enthusiasm Mainly and my drive to do things had vanished) I went back to the doctor and she took me off the propponolol and reffered me for an MRI
Yesterday i recieved a phone call to say that my neurologist had sent her a letter saying that i have Chiari Malformation type 1....
Since reading this forum i now attriubute a lot of other symptoms to this also... Ringing in the ears sometimes loosing words though my memory is very good Complete loss of Memory after only consuming a tiny amount of alcohol(Had this since i was 18) The headaches are the main burden with me pretty much taking about 2 doses of 3 anadin extra per day and it always feels so bad when i wake if i have slept for even 30 minutes more than i normally would...
That is as much as i know right now. and if you managed to make it to the end of the wall of text then thank you for taking the time but now i have a few questions....
How did i get this? Could it be from the head impacts as a child?
I have literally just retrained as a military policeman and qualified about 3 weeks ago... Obv job requires a certain amount of physical exertion not just because of being in the military but also the potential nature of the job.
Could i lose my Career?
My father died aged 31 and my grandfather aged 28 :(
Can this thing kill me?
Thanks for taking the time to read this. I have an appointment with the doctor in approximately 2 hours where i will hopefully find out more.....
Ok so I have just got out of seein the doctor and it was about as useful as a kick in the face. Doctor has no idea about it and when I told her the things I had read and how I am seeing similarities in other things I have ie ringing in the ears, twitching eyelids etc she told me to stop over dramatising it an to wait till I can see the neurologist… Not a problem except in Portsmouth the soonest I can get an emergency appointment as they call it is 11 weeks…
So I’m told I have this by a doctor who knows nothing about it and told to just wait and stew it over…
The letter my neurologist sent says "your recent MRI brain scan has been reported as showing a structural abnormality called a Chiari 1 malformation. This can cause the symptoms you descriibed. I think it would be useful to see you again to discuss these results and I will make sure you get a further clinic appointment"
This appointment has been made as a emergency appointment and the soonest they can do it is in 11 weeks…
So as you can see this is all I have to go on. Military GP has told me to continue self
Medicating with painkillers and wait for the appointment…
What the hell!!! I need more info than this? Am I being unreasonable to e upset that this is all the information I have to go on.?
There is a lot of Great Information & Links on our Resource page. You have an appointment set. If you get really bad Head, Neck our Back Ache, or you feel like you are having Stroke like symptoms. Please go to the ER. Unfortunetly with CM everyone has a different symptoms pre & post surgical. Some People are able to go back to work, but many can't. What type of Dr. is your appt. with ? There is a great link on the Resourse Page about getting ready for your appointment. I will answer any questions you have . You are not alone. Everyone Understands Here !!!
Thanks for the Replies guys. Very reassuring and nice to know people are out there to talk to...
TracyZ my military Doctor is just a general practiotioner though the doc i have appt with in June is a Neurologist.
and poptart i hear what you are saying about the other patients a neurologist might be having to deal with. When you put it like that it makes more sense.... Maybe a little more in depth letter would have made me feel a bit more reassured though....
Hey Tommo. I to am in Portsmouth and i was diagnosed in February by my neurologist Dr Halfpenny after having an MRI for something different. I saw My Neurosurgeon, Mr Nadir-Sepahi at Wessex Neuro @ SGH In march and I am now just awaiting surgery. My CM1 is a 20mm herniation with no syrinx but I have pretty much no CSF flow around the Foramen Magnum, cone shaped cerebella tonsils with significant crowding and my symptoms are getting worse. I have a really good GP here in Cosham and he has been really supportive.I have been symptomatic for nearly 15 years but for the longest time I was told it was bad sinusitis and even had surgery to drain my sinuses, but that didn't work and now i know why. I really hope you manage to get a good neurosurgeon, hopefully you will have the same one as me as he specialises in Chiari. If you need to chat or sound off just holla!
Hi Simi, thanks for replying. Things seem to be moving quite fast for you from the time you were diagnosed. Where did you have your initial MRI? I had mine at QA and my neurologist is Angela Burke. I have my follow up appointment on the 28th of this month but when my GP phoned Angela Burke she told her things about Chiari that contradict everything I have read so far. such as: Chiari is a mild condition that doesn't affect your lifestyle too much and very rarely will people have to have the surgery. She also said that it can be controlled with painkillers and that I should be able to carry on in the armed forces and it won't affect me or limit what I can do physically.
As you can probably imagine, I'm very nervous about seeing Angela Burke now as I'm worried she doesn't know what she is talking about. Hopefully I'm wrong.
Did you get referred to a neurosurgeon straight away? Did you have to continue seeing the neurologist? I was thinking of asking to be referred to the Walton centre in Liverpool as they seem to specialise in neuro conditions. Problem is its quite far from Portsmouth lol.
Did you ask to go to Wessex or did your neurologist recommend it? Also, were they reluctant to do the surgery or did they pretty much go down that route right away?
As or myself I suppose I will have to go and see Dr Burke on the 28th and see what she says. My symptoms are getting worse weekly at the moment though and if she tells me all is fine I won't be too impressed.
Sorry for all the questions but having someone so close by who is going down a similar route is comforting. Doctors seem to know so little :(
I read ur post. I have had Chiari diagnoses since 2001, the drs here say that it iscommon for Chiari to become a problem and be diagnosed atound the third decade oflife. I was explained thay chiari is a form of spina bifida, and that thete was a small opening atthe base of the skull where the cerabellum tonsils ate able to slip throughand cause a herniation. I was told I was probably born with this. And that some kind of strain made the symptoms and herniation worse. Ihad suffered with headaches on and off for years. My story is that I developed a basilar artery anurysem from all the pressure in my head and from theremy survival with Chiari began. Sorry to hear you lost both ur parents at a young age. Best wishes! Ur family is on my prayers.e