- About the Conditions
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My problems started in October 2005 when I developed shingles. I immediately started a course of strong medication and whilst it helped with the shingles, I developed a constant dull headache. I was told it was a side effect of the medication and that it would go once I had finished the medication. However, time went on and the headaches continued. Day after day I would wake up with a dull headache that radiated up the back of my neck and across the top of my head. It was with me constantly throughout the day. Sometimes it woke me up at night too. (Throughout my life I had always been a "headachy" person, but this pain was much different). My GP tried me on several combinations of painkillers, none of which really helped.
Early in 2006 I was referred to my local neurologist. I do feel he was rather dismissive of my headaches and told me they were tension headaches and that I would need to return to my GP for pain management advice. I was upset at the thought of more medication. Luckily, as I was leaving the consultation, he decided to send me for a CT scan but was "sure it would show nothing". How wrong he was! The radiologist suspected ACM and was duly referred for a MRI scan and ACM with a herniation of 10mm was confirmed. I remember feeling, on the one hand, elated that there was something physically wrong with me, but on the other hand, terrified - I had never heard of the condition, let alone know how to pronounce "Chiari"!!!
(Meanwhile, I found out that the shingles had nothing to do with the ACM - it was a pure co-incidence that the shingles and headaches occurred at the same time. Like most sufferers, I was born with ACM and it typically presented as headaches, as I reached my early 40's)
Once I began investigating the condition, I became even more terrified! Some of the websites (especially the American ones) were very scary. I then found The Ann Conroy Trust website, which was so informative and much less frightening. Via The Ann Conroy Trust, I also contacted Christine, who had been through the op, 3 years before. She was a fantastic help and support to me and we still keep in contact with each other, having become good friends.
In August 2006 the neurologist referred me to a neurosurgeon called Mr Mendoza at Charring Cross Hospital in London. He discussed the operation at length with me and patiently answered my long list of questions! I went away and thought about it and also sought a 2nd opinion, which confirmed what Mr Mendoza had told me. I agreed to surgery and was booked to have the operation on March 22nd 2007. In the meantime the headaches continued. I was also experiencing dizziness and faintness, tingling in my hands and feet and I was beginning to drop things. My GP was fantastic, he treated me with fortnightly acupuncture sessions, which did seem to help, and as well I was taking three different painkillers.
On March 21st 2007, 18 months after my headaches started, I was admitted to CCH. I had an afternoon of tests in preparation for the following day. That night I was very tearful and frightened but knew there was no going back! I went down to theatre at 10.30am and returned to the High Dependency Unit at 4.30 in the afternoon. I remember waking up in the theatre recovery room in excruciating pain and asking the recovery nurse to put me back to sleep again!!!! She upped my morphine instead! I was moved to a 4-bed unit the following morning and stayed in hospital 5 days. The pain in my head from the operation was bad but well controlled by the morphine. I was delighted when Mr Mendosa said I could go home, but also felt very scared and vulnerable.
I was discharged home to my parent's house where I spent the next 3 weeks recuperating. They were wonderful, as were all my friends and family. By the fourth week I was able to manage at home with friends and family popping by to check on me.
By 2 months post op I was able to return to my busy job in a GP surgery and by 3 months I could drive again! My hair is growing back nicely and the scar has faded considerably. I have to say that I feel like a new woman!! Everybody says how well I look and actually I feel really well. The headaches are so much better, I still get an occasional one, but nothing like the pain I would experience in the past. The dizziness and light-headedness has gone, although I still have some tingling in my hands and feet - but it is liveable with!
I am so pleased I made the decision to have the decompression surgery. It was such a terrifying prospect at the time but I can honestly say that it was the best decision I ever made.
Finally a big thank you to all my wonderful friends and family for their kindness, love and support and of course to Mr Mendoza for giving me my "new life".