Laura (penfold).

As far back as I can remember I have always had a cough/sneeze headache but because I have always had it I have considered it 'normal'. What changed was about 6 years ago when I started getting migraines, not many at first but they gradually increased over 6 months to about 2 or 3 every week, which is when my doctor started me on Pizotifen. These actually started to work after he increased my dosage and I stayed on them for about a year until he decided that that was long enough and I slowly came off them.

The cough/sneeze headache stayed but the migraines didn't come back, well at least for about 3 and a half years. When they did come back they came again with a vengeance. I tried Pizotifen once again but these didn’t work this time and I couldn't take beta-blockers, as I am asthmatic so the last thing the GP could try was Amitriptyline... These were awful, not only didn't they work they made me put weight on VERY quickly and considering I am 4ft 11 and normally around 7ish stone I very quickly became overweight. By this point the migraines affected my entire life. I couldn’t do anything when they hit, I had never felt so much pain in my head. Several times I actually ended up in Casualty because of the pain.

The pain in my head when I coughed or sneezed was now happening when I also went to the toilet so I decided to approach my GP.

We normally have a very good relationship so it was all very funny listening to me say how my head hurt when I 'encouraged' a No2 and it IS funny... but only to a point. When it starts affecting your everyday life it very quickly becomes not funny whatsoever. He was perplexed and suggested that it was my sinuses but didn't know what else it could be so prescribed me Antibiotics. I took them but it made no difference and I never brought it up with him again.

I eventually got referred to see a Neurologist who did an exam and listened to me explain how much pain I was in and he quickly concluded that I was suffering from Classic Migraines with Auras and wanted me to start on Topomax, normally an Epilepsy drug. Just as we were getting ready to leave his room my husband said 'Her head hurts when she coughs too, is that normal?' That is when he said I might have something else wrong with me but that he needed me to have an MRI to see.

I only had to wait 4 weeks for the MRI and was told the results would be ready within a week, however they lost my results and it was only because I chased the private firm that took the MRI that I found out where they were and managed to get them the correct information so they could send them on to my neurologist.

Just over 8 weeks after I had the MRI I received a letter in the post saying I had 'Mild Chiari Malformation' and that I would be seen in 6 months... By this point I was having many different symptoms but the main ones other than my head and neck pain seemed to be fainting, pins and needles in my hands, which always went alongside numbness in my hands, and losing colour from them they were so cold, balance problems and blurry vision. I very quickly couldn’t cope with the pain and very strange symptoms so went to see my GP who requested that i be seen again urgently. After a lot of messing about I finally got to see my neurologist again and he seemed to know more about Chiari than I expected. However his attitude towards it was very upsetting. He did the same tests again and listened to me to begin with but after I had mentioned maybe 6 or 7 different symptoms he suggested that they were all down to either the Topomax (which I had now been on for nearly 6 months and the symptoms had only been apparent for about 2 months) or that I was suffering from Anxiety... He also said that this situation was exactly why he sometimes didn’t tell people that they have Chiari! Also that I must understand my Chiari is only mild. (Tell my body that)

He agreed to refer me to a neurosurgeon and after my husband insisted also agreed to send me for a cine MRI and said that he would 'rush' the appointments I felt totally out of my depth when there and normally I am THE most vocal person ever and yet he managed to make me feel like I was a total waste of his time and that most of my symptoms were me just being anxious that I had been told that there was something wrong with my brain... I left there and totally fell apart for quite a few days. I was totally hung up on what he and my GP's opinion of me was... That I was making it up and just scared and so it was coming out as Anxiety. I spent those days either crying or moping around until my fantastic husband told me to buck up (not exactly those words :o)) and this is where I am now...

I have since come off the Topomax completely to prove to him that its not them that’s causing most of my symptoms and lo and behold... the only thing that has got better is my dizziness. Everything else remains the same. I wake most mornings to a headache, get cold hands that then get pins and needles, feeling faint and breathless when I exert myself, Numb sensations in my hands and arms, Blurry vision, general tiredness and I have lost a lot of weight. The newest symptom is the pain in my arms/shoulders/back, which is incredible.

I have since found out that he has NOT rushed anything and that I am waiting for routine appointments so I have taken things into my own hands and been totally unorthodox and sent the neurosurgeon my own letter on the advice of PALS in the hope that he sees that I am desperate need of someone who knows of Chiari to help me with the pain that I am in every single day... We will wait and see if this works at all but at least I tried!

I have also received a letter from the neurologist that also has gone to my GP and it is THE most patronising letter I have ever read and every fact in that letter is wrong which just proves to me that he really didn’t listen to me at all that day BUT I am not going to let it knock me down even if I do feel like it some days. I will keep on as I still don’t know if I have a syrinx or not and regardless of what 2 doctors may or may not think I know what I feel and I know that I need to know for my health and also so if/when the time comes I can make an INFORMED choice of whether I can or even want the surgery.

Laura has been to see her NS recently and sent me through this update - It is very positive news, but news that has left her with a lot to think about!

UPDATE........

Since writing my story I was moved up the list to urgent, whether or not it was because of the letter my husband wrote I dont know? However I went for a CSF flow MRI and while I was there they also took new up to date MRI of my head and neck. Several weeks later I saw the neurosurgeon for the first time and was VERY nervous.
Since my symptoms have gotten worse (About March 09) I have had to 'prove' to every Dr I have seen that I am ill, I feel ill, I cant do certain things, etc. All I ever get is 'Your depressed'...so when I went into this appointment I was expecting the same but I was just hoping to get some pain relief that actually worked.

What I got was a total shock.

The neurosurgeon was in actual fact a very warm and softly spoken man who I immediately liked. He also had a student with him who was also very friendly, I was obviously an interesting case! He went through my symptoms and didnt go into any details straight away but I could see my MRI's on the computer screen and could clearly see the Chiari, although to me it looked small still!
He then did his tests, several of which I failed! Following his finger and touching it and then touching my nose, I missed a few times and then taking dolly steps across the room, I think I managed 3 steps before stumbling! I did ask for another go at it but he said it was fine.. Ok i thought but I did everything else ok.
We sat back down and he showed me the MRI of my head and explained what was what and showed me where my brain should stop and said that my CSF flow was restricted but that i didnt have a syrinx which he was very happy about. Good I thought, what pain relief is he going to give me?

Hmm classic example of not counting your chickens is coming... This is when my husband pipes up 'So her chiari is now 10mm is it?' HUH??? How did he know that?? (He had actually been reading the report on the screen while i was going through the tests!) So to sum it up in 6 months my chiari has doubled in size and was now affecting my CSF flow. This is when the neurosurgeon told me that I was a candidate for foramen magnum decompression. I dont think I said much after that. After crying my heart out in the GP's office and getting nowhere with the neurologist I finally had answers and a potential solution!
He was fantastic though and got a model out and showed me exactly what he wants to do, told me it was my choice but that he strongly recommends that i have the surgery. I said yes of course as if I leave it I will be at risk of developing a syrinx as my flow is so restricted.

Whilst we were filling out forms my neurologist actually came round the corner! He was very good though and knew all about my results and said that he had spoken to the NS and that he too thought that considering its doubled surgery would be the best option. He obviously felt sheepish but kudos to him for coming over! I felt happy though that at least NOW he knew that i was being truthful and that i wasnt 'imagining' my symptoms.

Where I stand now is surgery will be November/December time but I am on the cancellation list so could be called anytime. I am happy because I could be feeling so much better soon but I'd be lying if I said I wasnt nervous. I am...lots! I do though however have the most fantastic husband who I love so very much and I have a bunch of brilliant friends who are keeping me laughing! My family are very supportive so I am very very lucky. My kids know and we have had tears but they know its a good thing I am having the op and they are brilliant kids so with the support of everyone I know i'll be fine. I just have to wait now...

UPDATE........... 26/10/2009

I thought maybe this update would show people that not ALL GP's are ogre's.

I went back to my GP as I made a decision to finally give up smoking. I have rubbish lungs anyway and what with such a big Op I kinda scared myself into giving up so off I went to ask about patches.
This is the same GP that told me it was all on my mind and that I was depressed and 'finding' problems... When he called me in he had his usual 'Oh here we go again' look on his face. I sat down and he very patronisingly asked me what he could do for me. I asked if he had got a letter yet knowing full well he hadnt! After he had said no I then went into the full details of the outcome of my appointment with the Neurosurgeon and slowly watched as his jaw dropped and his colour changed to a murky grey.........!

When I had finished he leant forward and said to me 'I am not too big a man to not apologise so I am sorry'.
HUH????? WOW!!! The smile I had on my face then was brilliant! He then said if I wanted to say I told you so that I could so...... I leant forward and very slowly said 'I TOLD YOU SO!'
He could not believe that he had been so wrong and I explained that there were so many of us that go through this same routine day in and day out and that if someone came through his door again and sounded like i did please dont be as quick to judge. I KNEW I was ill, i KNEW I wasn't right, i KNEW something had changed. He also said that maybe he should have sent me for another MRI sooner..? Maybe he should have but he didn't and I still consider myself one of the lucky ones. From the time my symptoms properly started to now its only been 6 months, There are people that are still fighting after years so yeah I am lucky.

Also if by chance there are GP's reading this then please take note and be the bigger person because that simple sentence meant the world to me.

To be continued....

Laura's next Update!!!! February 2010

It was actually my husband who got the call about my surgery as I was out shopping at the time with my Best Friend. They gave me a weeks notice... That day the panic set in but it actually didn't last very long because I very quickly became...well.... excited actually!! Now that may sound a little strange to some people but I think its the relief. Relief that there 'might' be an end, relief that someone is doing their very best to help you, relief that other people have to realise now that it isn't something you are making up as you go along, it's actually real!!

As a new friend told me I would I became 'practical'. I had a plan and that was that, I knew exactly how things were going to go and how I would cope and deal with things. I 'dealt' with it. Its funny how strong we become when we have to. I have always been a total nightmare with illness and pain and yet here I was probably dealing with one of the scariest things I have EVER had to go through and I honestly was fine!

The day came and off I went but unfortunately my Op had to be cancelled as my NS's theatre staff had been working through the night on an emergency so I had to wait until the next day. My NS came to see me though and asked that seeing as I wasnt 'busy' now (!) could I speak to some students as they didn't often get to speak to Chiarians....!! Of course in the interest of medicine (Not the interest that I just like to talk!) I agreed!! It was really good to talk to them although when the Boss came back and put them on the spot and asked them questions I did feel for them.. (especially the girl who called it keeora....oh dear!!)

The next day I was 2nd to go down and off I went at about midday.... I only got out the first door before they wheeled me back because nobody had drawn an arrow on my neck!!? lol

When I finally got to the anaesthetic room they were brilliant and we had a right giggle!! Mainly because I was moaning about a little injection in my hand but wasn't worried about the Op whatsoever! I can remember him laughing as I was falling asleep....

When I woke up I was in the recovery room and the first thing I thought was 'why am I banging my head?' I actually had a temperature but was shaking so bad that my head was banging and it really hurt but i couldnt stop it. One of the nurses totally stripped me off while the other put an ice pack over my head then they were both giving me medication through arterial lines I had in my feet. Then I was asleep again.. I woke up while they were wheeling me to critical care on the ward and as they took me past my husband and my mum I said 'I don't know what all the fuss is about!'..... I had partial numbness on the left side of my face and my eyesight in the left eye was very blurry, I also was restricted to 20 degrees in bed as I had very bad Low Pressure headaches when I woke up. The reason is that they work very close to the optic nerve so he may have just 'brushed' past mine which had made my eyesight alter. I also had to have a CT scan just to check but that showed that initial signs were that the Operation had been successful...! The only problem is that the CSF flow may be too fast so I am on anti sickness medication at the moment but that 'should' sort itself out. Like the NS said my brain has had over 30 years of being at a high pressure so all of a sudden to have the fluid flowing freely.. It's no wonder I feel sick..!!

I am still on my Topomax but only because I don't feel strong enough to cope with a migraine every day at the moment but I will come off them with time, when I am strong enough.
I struggle day to day. I can't lift a full kettle. I can't walk around Tesco's. I can't walk the Dog. Come 1pm every day I am exhausted. My muscles ache so bad but its because I am either not using them enough or using them too much...! I have to find that happy medium! I am VERY emotional now! EVERYTHING makes me cry! BUT on the flip side..... I AM strong... I accept my Chiari.... I will walk the dog....I will drive in the next month.... I will get back to work...I have some fantastic friends.... and I have THE most brilliant husband EVER.

I never would have thought that going through something so very hard and so very devastating would lead me to meeting such a brilliant bunch of people that I am very proud to call my 'Chiarian Friends'.