This story is my story and my opinion, buy sumatriptan online uk I accept it may not be the opinion or experience of others.
I also accept it is quite negative but this is not the case for everyone. I have been told I am complicated and complex – some people can have this surgery with no problems and can make a full recovery.
My story really started at the end of 2007, I got sent for an MRI due to headaches and neck pain, all I remember after this was being told I had a kink in my spinal cord and a cyst in my spinal cord. I didn’t think much about this at the time and didn’t think it was anything to worry about. I was referred to a neurosurgeon who sent me for a full MRI (to check for tehtered cord), he confirmed my condition and booked me into surgery within a few weeks. I didn’t have time to think about what the condition was or even look into anything about it, for me it felt like I was diagnosed one day then in surgery within weeks. I just thought the surgery would make my headache go away so I told work I’d be off for six weeks but not to worry! Little did I know what was in store for me in the months after surgery.
My first surgery was cancelled whilst I was actually waiting to go to theatre. I am a single parent with no support so I had to plan my childcare down to the tiniest detail and when my surgery was cancelled it was just horrible for all of us. I went back a few weeks later, everything went fine and I went home a few days after. At this point I was still under the impression the surgery would “fix me” and I wouldn’t have any more problems. The second night I was home I didn’t get any sleep, having really awful headaches – I ended up being sent back to hospital in an ambulance – but felt a lot better after about 48hrs and went home. I had my stitches removed a week after the surgery and stayed at home recovering. Two weeks after my surgery I was back in hospital as my wound started to leak -it was like there was water pouring out of it. I was never told my wound could leak so this didn’t worry me at all, I had terrible headaches and was leaking for over 24hours before I was sent back to hospital. I was given more stitches in the wound to stitch up the holes from where they thought it was leaking……this didn’t work. I was still leaking and still in pain so I ended up back in theatre for more surgery to clean the wound and remove the patch that was put in. I was also treated for an infection so put on IV antibiotics. I stayed in hospital for 2weeks.
After going home I didn’t feel any better, over the next two months I was readmitted to hospital this time with meningitis, raised white cell count and raised intracranial pressure. I was told I was being treated for an infection, then it wasn’t and infection then they didn’t know what was wrong with me. I was not well at all, in terrible pain and being sick all the time. This stay in hospital was one of the worst’s experiences I have had to endure, I felt neglected and in some of the worst pain I’ve ever been in my life. I hardly saw my children during this time, doctors would come and see me and not tell me what was wrong with me, they just did lots of tests (it was at this time I started having lumber punctures, I had about 13 lumber punctures in six months) these lumber punctures showed that my pressure was way too high, as was my white cell count. At this point I just felt so lost and confused about what was happening to me.
When I returned home I still didn’t really feel better, I kept going back to the hospital where they monitored my intracranial pressure, it was at this point I also started having problems with my hearing, as well as being very weak and shaky. I eventually got to the point where it was being discussed that I may need a shunt – at this point I knew the purpose of the shunt but I never thought I had hydrocephalus, I just thought I had raised pressure and this would fix me!! Due to my raised white cell count I couldn’t have a VP shunt (Ventriculoperitoneal shunt) so it was decided I needed a to have a LP (Lumberperitoneal shunt) fitted, this is less commonly used but better for me due to my complication. I knew it might not fix me but I didn’t care – anything was better than the continual pain I was in. I went back to hospital in August to have an LP shunt fitted. I felt abandoned and with little knowledge and information about what had happened to me and what I should expect from the surgery, or even what my real condition was. At this point I contacted ASBAH to ask for some support. I still didn’t think I had hydrocephalus or that I didn’t have “real” hydrocephalus as I had an LP shunt!!
When I retuned home I felt a little bit better but still not quite right. I was tired all the time, miserable, stuck in at home and in pain. It was 5months since I’d been at work and I was missing my job. It was only about 4 weeks after my LP shunt was fitted that I went to my GP and he had had a letter from the hospital, this letter actually said in writing that I did have chiari, hydrocephalus and had had aseptic meningitis in hospital – seeing these words written down helped me to realise that what was wrong with me was real and that maybe it wasn’t a short term thing. Before my surgeries I never realised that chiari is something for life – I thought it would go away after the surgery and I would be better. I remember reading the letter and there was almost a sense of relief seeing it in writing what was wrong with me, this was the first time in all these months I had seen my diagnosis actually written down. As the next few months past by I just plodded along not seeing any light at the end of the tunnel, I was sent for another MRI in December. I returned to hospital in January of this year. Part of me just knew there was going to be bad news, I remember walking up to the hospital just thinking I didn’t want to be there and just wanted to go home. I was right about what I was thinking, I got to my appointment and was told that they wanted to remove my LP shunt, fit a VP shunt (this is having a little machine in my head that drains the fluid directly from my brain down a tubing into my stomach) and an ICP monitor. I never expected to be told this although what they were saying to actually made sense to me about how I was feeling.
As I sit here and write this today I am 4 weeks post-op. I had my VP shunt surgery and am at home recovering, I think things went ok although I understand it was tricky surgery. I have had two very bad weeks and still have headaches and terrible back pains, but the emotional impact of the chiari is having a bigger impact on me than anything else. I don’t want to go out because I think something will go wrong again, that maybe the wound will leak again or ill get another infection and couldn’t face going back to hospital.
It is hard to try and summarise what has happened to me these last 10 months, there too much to summarise! My consultant has referred me to many other doctors to try and work out some of the problems I am having. But the things I’ve lost are far greater than anything I’ve gained. This time last year I was going to work every day in a job I loved, helping young people with behavioural problems, I was also studying for a degree and caring for my family. Now all that has changed and it looks like I will lose my job, my degree is on hold and I still don’t understand what has happened to me and why. If I could turn back time I know I never ever would have had the first surgery, if I hadn’t had that one I know I wouldn’t have needed all the other surgeries.
I understand now what chiari means but I wish I had known this before, the surgery is major brain surgery. I wish someone had told me that it will take a long time to recover and I may not make a full recovery, I was told it can take up to a year to recover from brain surgery – if it all goes well – and as mine didn’t go well I don’t know how long my recovery will be. If I had been told more about this condition then I would have taken more time to make an informed decision. I definitely would not have had the surgery when I did, I know I would have needed it eventually but I would have stayed in work as long as I could, partly because I loved my job and miss it every day but also partly for financially reasons.
My story is not a positive one but it’s an honest one, if I can do anything it would be to inform people what may lie ahead for them from an honest point of view. I would never tell anyone not to have surgery – just to make yourself completely and fully informed before you do. I have spoken to many people who did not have good doctors and have suffered because of this, if you have a doctor but are not happy with them – ask to see someone else – it is your right to be treated by someone you trust!
One other point I have to raise is that even though my story is a very negative one I have to thank my consultant and his team and my GP who have all supported me and been extremely helpful. I am one of the lucky few who has complete faith in my doctors, something I am extremely grateful for, I hope every patient who is going through decisions is able to find a team of doctors as good as the ones I have been lucky to find.
Most of all good luck with your decisions.
One year after surgery.
I have reached my year mark after surgery – it has not been easy for me but as I type this I feel ‘okay’. I have a bad cough today and it still hurts when I cough. I still have a visible scar on the back of my head but this never bothers me because I cannot see it – and if people can see it they are obviously too close!! At present I have four scars on my head but I’m lucky with my hair it grows very quickly! I was told the decompression surgery did what it was meant to – alot of my problems were from other things. I think that due to all my other problems I never really recovered from the decompression surgery – part of me thinks that now I have reached my year mark it may be time to finally recover from the first surgery. It is a long process and a long road to revocery with this condition.
Three years after surgery!
Well here I am coming up to my three years post op! What a three years it has been – things seem to change so much over the years. When i started this journey i had chiari, now i have chiari, a shunt a pressure disorder and now a syrinx that is growing. The reason I am writing this is firstly to let you know I have seem some up todate scans and have been told my decompression was successful and the chiari has not come back, I know some of you will think it can came back – just like i do! But my scans show everything is ok – when i get the scans i will post them,
Other reason is when I was diagnosed I was told I had a syrinx – not much was said about it but i was told it was gone – now I have been told I have one that is growing, so i do not know if it is the old syrinx or one that has grown as a result of surgery. I am going to hopefully get my scans and post them up here to let people know what the brain can look like after surgery.
Apart from that I am currently waiting for another surgery to check my shunt and help my syrinx so things are stressful for me but hopefully I will be back here soon!