According to the internet Syringomeylia affects as little as 8 people in 100,000 in the US. And Chiari about 1 in 1,000. However the Chiari figure at 1 in 1,000 is much more than in previous years suggesting that it's not perhaps as rare as they originally thought but more because of the avaibility of MRI scans. My Chiari was found totally by accident and then the Syringomeylia was found as part of a follow up MRI. I am incredibly grateful that these conditions were found and diagnosed as it seems so many people wait years and go through pain and heartache for an accurate diagnosis.
I started having migraine like pains at the end of the first week of August. I had had one migraine in the April of this year, but before that never. I had put it down to hormones (I suffer with Endometriosis and PCOS as well - more on those another day!) as it seemed to coincide with ovulation. The migraine in April lasted 3 days and was pretty debilitating but it was what I understood to be a pretty standard migraine - pain and nausea. I went to bed in a dark room and waited for it to pass.
This time around the pain didn't start off as badly, as I remember I was able to make it down to the GP. She gave me a prescription and said there was no point taking the medication this time around as it had to be taken within half an hour of the symptoms but it would help for the future. At that point I just felt a bit sick and had the head pain. Later that day I was physically sick and so I went to bed early, in the hope that I might be able to sleep it off.
Then on the Saturday, I was awoken with awful pain on a par with the time before. It got quite rapidly worse. This time I had some numbness down my right hand side and I dropped a bottle of water that I had been holding for no apparent reason. The sickness also got worse until I was unable to keep anything down. So we went to the out of hours GP this time and she gave me an anti-sickness jab and IV painkillers. I went to the surgery with my hood up and sunglasses on - I wonder what they thought! I remember asking whether we should go to A&E and being told that they probably wouldn't admit me with a migraine. As I left the surgery about 2hrs later, I did feel marginally better but I knew that I was nowhere near 100% and that I didn't think we should be going home. We did go home however and I tried to watch a film with my husband but I couldn't focus and the light was too bright. So off I went to bed at 8 or 9pm. Needless to say the usual Ibruprofen and Paracetamol weren't touching the pain and I was throwing everything up anyway, so it was all I could do to try and get some sleep.
Sunday morning we were woken in the early hours with my husband's work. He was being called in and after a lot of persuading I told him I felt much better and he should go in. I went back to sleep, only to be woken a few hours later by agonising head pain, numbness down my right hand side again and pins and needles in my face and tongue! I was worried I was having a stroke as I wasn't able to carry out everyday functions like make a phone call or speak. It was like my brain was telling my body what to do but it wouldn't/couldn't do it. I was terrified.
In the end my in laws and brother came around. This time I was taken to A&E. I was there for about 5 hours in total - I was put on a drip, given more anti-sickness and painkillers and bloods were taken. The drip helped a lot and I did feel much better on leaving the hospital early that evening. I even managed to eat some dinner. Unfortunately I quickly went downhill and was then violently sick and the head pain returned with a vengeance. So back to hospital I went and there I stayed for 4 nights. I was put on Morphine which didn't touch the pain, I was given an anti-migraine injection which was agony and then felt like I was having a heart attack (I am apparently allergic!) and couldn't stop being sick despite the anti sickness. It was awful. And scary.
During my first stay they did the MRI scan. Actually there were concerned about a tumour or blood clot but they had said they were doing it to rule it out as the head pain had been going on so long. They were also not that concerned initially as my Mum, Brother and Gdad all suffer with migraine.
Anyway they found the Chiari and we were shocked. Although I knew from how bad the pain had been that there was no way they wouldn't find anything wrong. The Dr that gave us the diagnosis had never seen a patient with the condition and really didn't know anything about it. At that time we were told that it was an incidental finding and not to be too concerned. They made an appt for me to see the Neurologist in her out patient clinic on her return from holiday.
If only that had have been the end of it!
I was back in hospital a further 4 times, so I was in for the majority of August, the head pain getting worse and worse each time. I had continual pain for 4 weeks in total, with severe spikes where they struggled to get my pain under control - I'd spend 5-6-7 hours in absolute agony. I was taken by ambulance twice - once on gas and air and the other time unable to speak at all. Again it felt like something had shut off in my brain. They kept asking me questions and I was trying everything to answer but I just couldn't get the words out. When I mustered up all my power I came out with absolute nonsense! I was really well looked after in hospital but the team were unable to provide any answers as they were awaiting the Neurologists return as it was out of their remit really.
Once she was back and I filled her in on what had been happening she was able to prescribe a drug to get the head pain under control which it did eventually (until I had to come off of it because they found I had an overactive thyroid!) Before I left hospital they requested that I go back and have another MRI, this time on my spine - we presumed they were checking I didn't have Syringomeylia although that was from our own Googling! And of course they found that I did have it, much to everyone's total shock.
As I say, I am very lucky to have had such excellent care. It was the worst period in my life to date by a mile. I can still remember the agony of the head pain like it was yesterday. I think I always will. It was so bad I wanted to die. That sounds like an exaggeration but I promise you it's not. I also have fantastic friends and family who continue to support me every step of the way.
I think one of the hardest things has been feeling like the only one. And it's hugely frustrating when you call NHS Direct or an unknown GP and you have to start from the beginning. You just don't know where to start. And it really takes it out of you. Today is one of those days where I don't feel like I have the energy for anything other than sitting up straight. But already this blog has started to give me a bit of strength and hope. I hope it will be a support to other sufferers as well.
S x
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