Tuesday 26th February 2008.
The day is finally here and I am surprisingly calm. Arrived at Cheltenham Hospital Eyeford day unit at 7.30 to prepare for the day. Booked in and said my goodbyes to Sandra who I think was more nervous than I. There are 3 others patients also having the same procedure in one way or another. By 8.30 I was with the anaesthetist who asked me loads of questions about my heath in general. By 9am I was in a small room and the anaesthetist said it was time for me to have a large vodka in my arm. He then said to enjoy the affect for a few moments and put a mask over my mouth.
Next thing I was being woken up at about 1.30. I would be lying if I said it did not hurt I was in a lot of pain. And could not really open the good eye without the left one hurting. It feels that I have a large piece of grit under the eyelid it was of course the stitches. The nurse gave me some pain killers and I nodded off. Not long after I nodded off I had to vacate my bed and sit in a chair in the middle of the room. They had an emergency and as I was first in and the most awake I gave up my space and sat in what I called the naughty chair as it was in the middle of the room. I kept nodding off until 4pm when the took off the bandage to clean the eye for inspection by the surgeon I was afraid to look out of the eye in case it had not worked. But I had a peek anyway. Things looked very wobbly but on the whole from what I could tell I had single vision with objects directly in front of me and to the left, on the right double and very painful. So I just sat there blinking looking ahead.
The nurse put local anaesthetic drops in the left eye that was great I could then have a proper look at my new world. I then went in to see Mr Ferris who had a good look and I did the usual eye tests looking at an eye chart in one spot while he checked the angle of my left eye . Perfect he said. He would not have to do any adjustments at all, and he said I could go home.
We got home about 6 and made the usual call & texts to friends and family. Took some more pain killers and went to bed about 9. Managed to sleep quite well until we were rudely woken up by an earth quake of all things at 1am. Managed to doze until 4am and have had some more pain killers.
On the whole I feel fine the vision is good, but the eye is very sore, scratchy and looks like a red football. I might take photoes but I dont think even i can look at that first thing in the morning.
At last I have my appointment for squint surgery on February 26th. Should be a straight forward operation but still getting a tad nervous about the whole ordeal. There is a link here.
Bristol Frenchay. Had an appointment to see Mr Porter. He was busy with a “Private Patient” I was not told that exactly but I recognised the chap who was called into his office the time of my appointment. Anyway I diverse “not that I am bitter”, I was seen by one of his colleagues who told me that the “Angioma was still there “I knew that” No notable change on the MRI. “I was told to expect that when I had the treatment in Sheffield”. She is going to ask Mr Porter if they are going to continue monitoring me. She could not see any reason for me not too have the squint surgery.
Copy of MRI 31/08/07
WooHoo at last I have been accepted to have squint surgery. I still do not have a date yet but it will be in the next 18 weeks from today 7/11/07. I really really can’t wait it seems to have taken ages to get to this stage.
Wow has it been that long since I last updated. To be honest there has not been much to tell. I had been on Fluoxetine since December and they make very lethargic. I have been off them for about a month now and I feel as if I want to get on and do something. But the down side is that I cant sleep again I find this very annoying. There is improvement in the numbness on my right side. I just feel it in my right hand and fingers, sometimes in the right foot.
I did not have the botox injections in the end as I had been coping well with the prism the Dr decided to leave it. However I am now on a waiting list to have corrective eye surgery, I might able to get this done in December or January.
I did play golf just a couple of times but my coordination is still crap just like the weather.
September 13th 2006
I am not one who suffer from depression normally, but the past few weeks I have been on a real downer. The problem only really shows it self to the people closest to me, as the dark side of my personality slowly takes over. Thankfully I managed to hit it over the head with a lump hammer and I am getting back to my old self.
My left eye is still pointing in deferent direction from the right, slowly very slowly it is catching up. I have an appointment at Cheltenham hospital in the first week of October. I am hoping to have Botox injected into a muscle, this procedure will need to be repeated every 4 months. There is a chance I can corrective surgery. But at the moment I would be happy with the Botox.
I still have problems with my right side. Slight numbness in the scalp. The main problem is with my right shoulder, arm and hand. Still very numb and have a small problem with hand to mouth coordination.
On a plus side, since I came back from Sheffield I have been sleeping very well. Its nice to get my head on a pillow and not have thousands of thoughts going through my head at once. This still happens but not as bad as it was. The only trouble is I think I am sleeping too much.
On the whole I feel much brighter. I might even try and get a game of golf before the weather gets shitty.
Back from Sheffield click here for the full story.
Friday 7th July 2006
I had a eye test and all seem ok in that department. Its still on for Sheffield later in the month. I am not really one for getting stressed but I am finding it very hard to sleep at the moment. It could be the weather but it does happen a lot with people with CA’s apparently.
Double Vision: Still going the right way but has slowed up. If I sleep well the vision improves. Same with being dizzy. The tinnitus seems to have passed although there is certain thing I can’t hear “apparently when it suits” Ask Sandra. The numbness is passing but my right side is still very weak still problems with hand to mouth co ordnance.
I have been given a couple of links to websites that have a video about Gamma Knife treatment. Warning these are big files and will take time to load.
The Johns Hopkins University School of Medicine
University of Pittsburgh
Wednesday 14th June 2006
Up early with a headache. All seems Ok but I have started to panic every time I get one. I am probably spending too much time on the computer I will get my eyes checked later this week. On a plus side I have at last got my date for the Gamma Knife at the Sheffield Royal Hallamshire Hospital . I have to be there on Sunday 23rd of July. They said I might get in even earlier if there is a cancellation. From what I understand I am in on the Sunday, they do the business on the Monday and should be able to come home on the Tuesday. Will update when I have more info.
Wednesday 7th June
Vast improvement I have been able to get a prism into my glasses and I can see a lot better now. Still problems looking to the left but this will be on going and I can live with that. The dizziness has also decreased. I play pinball with the walls but its not as bad as it has been. I have down graded the tinnitus from a leaking gas pipe to an accessional moan. I notice that I am still very sensitive to loud noises and if I have been for a walk, sounds can be distorted for up to an hour afterwards. Still numb on my right side but is greatly improving. Hand to mouth coordination is a lot better. Still having problems getting a good nights sleep. Overall things have got a lot better and I feel good as well.
Sunday 21st May
A month on and its getting a bit tedious know. I seem to have good day’s and then bad day’s. Today is a bit in-between. The main symptoms are,
Double vision, this has improved but not enough to be able to put a prism into my glasses yet. The max prism made is a 40 and that is not enough for me yet. I have an appointment at Cheltenham Hospital on the 6th of June but I think it will be another month before I will be ready.
Dizziness, I think this is a knock on from the double vision.
Tinnitus, Not as loud as it has been, left ear is a high pitched whistle, right ear used to sound like very noisy tappets on a V8 has been down graded to a leaking gas pipe.
Numb on the right side of my body from scalp to foot. This is getting easier but depends on how much sleep I get. For the first couple of weeks I did not have very good hand coordination and could not pick up a pen or even type with my right hand. That is improving.
Sleep, I find it very hard to get to sleep at night. No matter how tired I am it is very hard to drop off. I do have sleeping tablets but I do not like to take them as it makes me even more like a zombie the next day. The max sleep I can get is 3 to 4 hours very frustrating.
Monday 24th April. 2006
Not a good day. Last night I noticed that my vision was deteriorating, the double vision is getting worse. This sometimes happens if I am tired or have had a glass of wine too many, but this time it is deferent. I am not tired and I have only had one glass of wine, OK it was a very large glass but still only one. I also notice that my right hand is more numb than normal and I decide to go to bed early.
I wake up and my head is pounding. I lie there in the twilight and I have a loud ringing noise in my ears that is also pounding seems to be pulsating with my heart beat. The numbness by now has spread up my right hand to the whole arm. I ask Sandra if she is awake and tell her I am not good. I am surprised that that when I speak my head really hurts and I now have to speak in a whisper. Sandra goes down to the kitchen to get some coffee and some headache tablets. I have to go to the bathroom and on the way I notice that my right foot is now numb.
It seemed like ages for the clock to get to 8.30 so I could phone my Dr. I must admit I already knew that there was nothing he could do for me but it would have been nice to have a few words of encouragement. Mmm he must have had a bad weekend also he did not seem too interested. To be honest I am overreacting he was as charming as ever but he really is powerless as to what he can do for me. Deep down you would like them to say “Oh my god!!” Rush over to see you, and then rush you into Hospital “single room of course” full of those machines that go ping. In the ideal world I would have been in the operating theatre had the bloody raspberry thing removed from my brainstem and got back home in time for Countdown. But no my Doctor said he would write to the Nero surgeon in Sheffield and would contact me when he has had a reply. I then emailed Sheffield myself telling them of my plight.
Its now 14.45 I feel ok the symptoms don’t seem to have gotten any worse. Although I do feel weak on my right side. I just feel really pissed off. I have been on a health kick the past few weeks eating the right foods not over indulging, even getting some regular exercise. Sandra and I even stopped smoking last Monday. We have had some of that foul tasting Nicorette Gum. But it seems top have done the trick but I have to say I really need a cigarette today but so far have resisted. I played golf on Saturday the first time in ages and I played well things were looking rosy. So why has this happened now.
This is the fourth time that I am aware of that I have had a bleed. Will my body recover from this yet again? I have not fully recovered from the third one. I was due to have a botox injection in my left eye on Wednesday 3rd May I am not too sure if it is the best thing to do now. However, saying that something must be better than nothing.
Note: The Surgeon in Sheffield is Mr Andras Kemeny. He is the Director of the National Centre for Stereotactic Radiosurgery.
It had been decided that I was a candidate for the Gamma Knife as my Angioma was considered to be in an inoperable place
Bleed 1: March 2001. Bleed 2: June 2004, Bleed 3: October 2004
I must add that my left eye has been twitching for the past few days. Thursday, Friday, and Saturday. I can’t remember if it was twitching yesterday.
I went to Sheffield to see Mr Kemeny to find out if he would take me on. He was very charming and explained the procedure. I was relieved when he told me that he thought he can help me. Mr Kemeny said to go and have a thing about it and If I wanted to go ahead he would put me on the waiting list. I Phoned them the following week and I am know on the six month waiting list.
May 4th 2005
I went to see Mr Porter the Neuro Surgeon at Frenchay Bristol in December of last year, to talk through my last scans. He said that he could not tell from the last MRI if the Angioma itself had increased in size because last bleed has yet to be absorbed. He did say however appeared to be more bulky. More interestingly, he wants me to go and see Mr Andras Kemeny from the National Centre of Radiosurgery in Sheffield. Mr Porter explained that Mr Kemeny claims that with “Stereotactic Radiosurgery” he can reduce the risk of haemorrhage by 8 fold. I am not too sure what that expression means, but it sounds very interesting.
I am under the impression that he has discussed this with Dr Spetzler, who has his own opinion on it as it may not be the way to proceed. Mr Porter however seemed quite enthusiastic and more open to new ideas.
March 2006 I went to Sheffield to see Mr Kemeny to find out if he would take me on. He was very charming and explained the procedure. I was relieved when he told me that he thought he can help me. Mr Kemeny said to go and have a thing about it and If I wanted to go ahead he would put me on the waiting list. I Phoned them the following week and I am know on the six month waiting list.
My Angieoma is in the Medulla Oblongata.