NARRATIVES
TALK TO A
ADVICE
7 January 2001
NARRATIVES
TALK TO A
ADVICE
NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
7 January 2001
My name is Lucy. I am 27 years old. I live in England. When I was 15 I had a standard eye test at school. They could tell my left eye was short sighted and therefore sent me to a home optician for a further eye test. When the optician looked into my eye with a torch he could see something strange behind it and therefore sent me to see a doctor. Various tests later they told me I had 4 arteriovenus malformations of the brain. One of these is actually coiled around my optic nerve and has now squeezed the life out of it, making me virtually blind in my left eye. They said there was a change I could suffer from a brain hameorrhage.
In April 1996 I had my first brain haemorrhage. It was very painful but I got through it remarkably well.
All was well for 3 years then, again in April, I had just driven into work when I suddenly felt strange. My boss eventually found me in my car. I was speaking nonsense. This time I had a stroke in hospital. It was hideous but I can't actually remember feeling any pain at this haemorrhage.
I had just gone a year after the stroke and was starting to feel more optimistic. Then, again in April (I hate the month now!) I started to feel strange at home. Another haemorrhage - this time what I felt was a 'slight' one. Back into hospital! Then another slight haemorrhage (number 5!). Eventually I got home - relieved to be alive. I'd been home for approximatey 24 hours when I had a massive haemorrhage. Agony for about 8 days or more. No painkillers seemed to work.
Thankfully I have been left without any great side effects from these haemorrhages. I've had gamma knife on one of these AVM's but apparently the others are of a size and nature that can't be done. (Particularly the one that is actually coiled around my optic nerve). They say if they gamma ray that one it could make me loose all my vision (no thanks!)
Doctors in England reckon my scans have been shown all over the world but I often wonder whether all Neurosurgeons have seen them. Maybe somewhere someone could do something to help me. Embolization also cannot be applied to me.
If you'd like to know any more information please Email me.
Thanks for taking the time to read this.
Update 26 Jan 2001
When I had the haemorrhage/stroke in April 1999 I was given steriods orally (dexamethasone) to reduce swelling in my brain. I've just found out that the steriods have given me avascular necrosis of both hips and right shoulder (this means the blood isn't getting to these points and therefore the bones are dying). I know people are given steriods when they have gamma knife treatment (as I was).
Avascular necrosis is apparently very rare but I had a lot of difficulty in finally getting it diagnosed. I suppose I'm thinking that if anyone else has joint pain and they have also had corticosteriods they ought to tell their doctors and enquire whether or not avascular necrosis could be a possibility. I really hope no one else here has got it but if anyone has it would be good to talk.
Update 9 Oct 2001
On 28th August I had another angiogram to see how my steriotactic radiosurgery had gone, two years previously. Yesterday (talk about making me WAIT) I had an appointment with my neurosurgeon. The AVM they treated has now TOTALLY GONE! I can hardly believe it - especially as they told me they expected to have to treat it twice.
I am still left with 3 inoperable AVMs but I feel so happy to be one down.
Update: 27 Jan 2003
I suffered another, small haemorrhage at the end of November 2002. I assume it was small because, after happening, I didn't suffer the usual amount of pain. Due to the fact that the doctors can't do anything for me, other than to lie me on my back for two weeks, I was able to stay at home this time - thanks to my mum and my husband [yes - I got married in July 2002 - after 13 years of dating Gary :-)]
The internet has been fantastic for me in dealing with all of this. This support site has been tremendous and I am also a member of a site for osteonecrosis. I am told my hips are currently 'collapsing' which is what I have known from day one. The doctors have finally told me 'they are definitely going to collapse'.
I have made some fantastic friends from this site (you know who you are :-)
Keeping my fingers crossed that one day I will be rid of these blessed avms ...
Finally, I am at that stage in my life (probably after a double hip replacement) when I would love to be able to start a family. My doctors are giving me varying opinions about this. My neurologist didn't see any reason why I couldn't have a baby but this differs from what I have learnt myself about AVMs and pregnancy. If anyone has anything interesting to tell me about pregnancy and AVMs I would appreciate hearing others experiences.
My best wishes to you all. xxx
Update: 8 Feb 2003
I had an appointment with the eye clinic today. Last time I went they told me that my sphere of vision was being affected in my right eye due to my avms (the only one I can now see out of!) Apparently this has been so since 2001.
Well - finally some good news from a hospital (for a change!!!!!!!!!!) My vision in my right eye is now 'back to normal'. Amazing isn't it :-) Let's all hope it stays that way! They don't seem to know why this is the case although I have my own suspicions.
Update: 18 Jul 2003
Well - it has been some time since I have written. Nothing have changed haemorrhage wise (which, of course, is great).
My life recently has been taken up with pain all over my body, presumably from this osteonecrosis. My hospital, as I have said before, seem to be just waiting for my hips to collapse. I was not really very satisfied with this prospect, although I understand that most (if not all) hips with steroid induced avascular necrosis do go on to collapse.
I finally 'bit the bullet' and made an appointment to see a surgeon privately about getting my hips 'resurfaced'. This is far better than total hip replacements for young people (I hope I can still say that now I'm 30!!!) You get your total range of movement back and they don't seem to wear/dislocate unlike THRs. The surgeon told me I may have been 'left too long' without anything being done for it to work (that was the hard part for me - I wrote to my surgeon in August 2001 asking if anything else could be applied to me apart from TH Replacements - the only thing he told me was to trust him).
Anyway, on 20th August I will be 'opened up' and I am now praying that when I come round it will be to hear that he has done bilateral hip resurfacings. He may have to put in total hip replacements if my bones are in too bad a shape.
I have been told that the operation will be more risky for me than the next person due to my avms. I do, however, believe that everything happens for a reason. It is very difficult to see this at times in our lives but I wonder whether we are all part of a greater plan.
My next 'problem' is going to be raising the £18,000 the surgery is going to cost. Apparently, this surgery CAN be done on the National Health Service but no one has offered it to me. My private surgeon says by the time the NHS waiting list is out of the way it will definitely be too late for me, leaving me no other option.
Anyway, I'm sure we are all so very grateful for this group and the support we can provide each other with. It has certainly helped me NO END and I have made some irreplaceable friends :-)
Until next time ...
Update: 18 Aug 2003
Today (August 16) I will be leaving to drive to Birmingham for a bilateral operation on my hips (resurfacing).
If this operation works it could give me my mobility back ;-) There is a chance that my hips may have been left too long for this operation to work so say a prayer for me everyone! I don't want to wake up to find I have had to have hip replacements at age 30.
This avascular necrosis was brought about when I was given steriods for four weeks following a brain bleed. What a side effect!!!!!
Lots of love
Update: 08 Sep 2003
Hello everyone. Just thought I would add on how I've got on with my operation (although it was on my hips!)
The operation all went well apart from a few neurological deficits! My left eye started to turn into the corner again and I saw flashing arcs of light for an hour on one day (this happened to me following my last angiogram in 2001). I also had some pretty excruciating headaches.
My surgeon and all his registrars kept saying to me that my hips were in a 'very bad state'. My surgeon said that if I had had one hip done at a time he would have preferred me to be totally non weight bearing. Of course, because I have had two hips done together I have to partially weight bear when I walk with my crutches. I have to walk occasionally to stop thrombosis. They daren't give me any blood thinning drugs.
The surgeon had to take away so much dead bone that he had to use the smallest sized head. He said he had only used this twice before (he has done well over 2300 resurfacings!)
Due to the softness of my bones I will feel more certainty about my future after 3 to 4 months. This is the period in which, if they are going to, they could fracture.
I feel totally optimistic at the present time. I can move in ways I've not been able to for over two years. FANTASTIC! My husband, Gary 'Florence Nightingale' is taking good care of me, along with my mum (what a spoilt 30 year old I am!!)
I have to admit, I still cannot understand why the NHS did not offer me this operation???!
Update: 5 February 2010
Life is getting better and better :-) Added another baby to our family June 2009 - Oscar James - he is adorable and his sister adores him. My hip snapped in pregnancy (due to more osteonecrosis) which wasn't much fun but he was well worth it. Had it replaced when he was three months old.
My brain appears to have been behaving (apart from killer headaches that often last for weeks). I don't even bother telling the doctors now as there is nothing that they can do.
Apart from that life is wonderful. I have my two gorgeous children who make everything worthwhile :-)
© Copyright 2001 Lucy Holland
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