Aife Joyce

I was diagnosed in May 2008 with Arnold Chiari 1 Malformation with a small syrinx. I was referred to a neurosurgeon in CUH Co. Cork. Ireland, a Mr Michael O'Sullivan. He said that he could do decompression surgery and that it should relieve the pressure in my head, and hopefully stop the headaches. I thought that it was worth the risk and decided to go ahead with the surgery which took place in March 2009.

It was a very long painful recovery and I was sent home after a week in hospital with pain relief, that unfortunately didn't work at all. So with the help of my local GP and husband we managed to get it so that I could at least get to the bathroom without feeling like my head was about to explode.

I spent a further three weeks in bed before I could manage coming down stairs. After the second time of being up I returned to bed that night and ended up waking up with numb neck and throat also pins and needles across my chest. My husband rang the surgery team and they said to bring me back into the hospital. They did a CT scan and everything seemed fine they couldn't explain my symptoms and so I was sent home.

The pressure in my head just suddenly seemed to sort itself out and life was wonderful. I could bend down and pick things up without having any pain it was amazing, when I had an MRI in Aug 2009 everything looked perfect and the syrinx was gone.

In Dec 2009 I started getting really weird symptoms again - lots of numbness in different places especially my throat and tongue, my left arm went completely numb for two weeks and in my mid back I had a stabbing pain like a needle. I had a feeling that was like a nettle sting across my upper back and little numb patches that would appear on my head or nose. I would experience all these in the day and when I went to sleep at night, (after about an hour) I would wake up with pins and needles across my chest and down my left arm sometimes going down to my feet and up the back of my head this was really scary and I didn't have a clue what was going on. The only way I could get through this was to try and sleep sitting upright on the couch.

This happened every night and after a month I was completely exhausted. I was worried I had MS as my mother has it. I tried to see my surgeon but I only managed to see one of his team who said that it could be the Syrinx was coming back, and she sent me away with nerve painkillers. I just wanted an answer so I decided to get an MRI in euro medic and try and get Dr O' Sullivan to look at them. After getting these Mr O'Sullivan looked at them and saw me on the 3rd of March 2010. He said that everything was perfect with the operation and that the syrinx had not reappeared. He said that it was unexplained pins and needles he also told me that it couldn't be MS and showed me where there would be signs of any plaque build up if it was. This was a relief, but it didn't explain the symptoms. Mr O'Sullivan referred me to another Neurologist but there is a waiting list of about three years.

In May 2010 I ended up in hospital again as the symptoms were much worse and my neck had seized I could hardly move (I'm sure that this is the only reason that I was taken seriously). I spent nine days in hospital and had another MRI of my spine which came up with no answers as to what could be causing these symptoms, a feeling of my cells shaking, numb throat and tounge, left arm from shoulder to hand numb with pins and needles, pain in mid back, I was told that it could be anxiety, I wasn't convinced. They put me on a heart monitor for a few nights and said that it was a little fast while I was asleep but that it was nothing to worry about. In the end they sent me home with Tamazapam to help me relax at night, they didn't help much so I didn't take them for long.

Since this I have been to England to see Prof James Van Dellen at the Cromwell Hospital for a second opinion. I found that he was very reassuring and I left feeling much better about everything. It is now July 2011 and I still have all these symptom on and off, they seem to get worse at the end of the day or around my menstrual cycle. I think that I'm getting used to them. I have found that Acupuncture Deep tissue massage and Cranial sacral have helped me enormously. I have ups and downs and at the moment I seem to be having more good days, so life goes on. Best wishes to all the other Chiari patients and their families.