The story contains two moving letters Simon wrote; here are direct links to them:
First, let you tell about the way I used to be before I was put to sleep on 30th November 2001 (The last day I was in total control of my beautiful life). I had a very happy childhood and was educated without any real worries or problems. In fact my life went by without any real dramas or medical problems. I was just your average boy/teenager growing up in a nice suburban area close to South London, England with a happy family life.
Ok, I did have one problem when I was 20 years old. The following is a brief rundown of my only previous serious illness. You will probably feel this is not relevant to the AN surgery/recovery but I believe the experience equipped me with the mental strength to survive to this day!
Just to let you know, in 1983 I was diagnosed with granulating tuberoses in my spine and right scrcialiac joint, after spending over 2 years in continuous pain while the British National Health System failed to help me. My pleas for help were basically disregarded and I was told aged 17-20 years old to keep taking the pills and go away. If it was not for a kind Harley Street doctor in London, I would have probably at best ended up in a wheel chair because my spine was so dangerously damaged (basically it is partly dissolved away!). Anyway to cut a long story short I got a powerful antibiotic treatment that did the trick and I got my life back at age 21. I remember saying to myself I never wanted to be ill again because the pain was awful.
When I left hospital I ignored all the doctorsí recommendations about not lifting this and not doing that because of my very weak back and I went straight down to the gym and slowly built up my body. By the time I was 25 I looked great, felt great, and had very little back pain. In fact I basically forgot I was so ill and I was having the time of my life. My mission in life was to never need another bloody pill or let a doctor to cut me open or anything that would harm my delicate but strong mind and body.
By the time I was 30, I was happily married and a partner in a hectic insurance brokerage in South London. Please bear I mind I always took my health seriously and kept to a strict diet of the gym 5 days a week (about 1 hour plus per day). It worked and kept me in good order to all my doctorsí amazement. I always knew I had a strong will but I never I knew it would be tested to the limit by the time I was 39.
I am so sorry for talking about something that is not connected to my AN but I just want to set the scene.
Ok, by the time I was nearly 39 I was very busy at work, in fact I let my work take over my life and it was probably one reason why my marriage broke down and I sadly separated from my wife in June 2001. Between July and Sept 2001 I moved into a new apartment, bought a new car, began a very amicable divorce and found a wonderful new girlfriend to compliment my great job. Nothing could have been better in my life.
2. My symptoms and discovery of the AN
Summer 1996 the awful ringing first started in my left ear. A few weeks later I visited my Harley Street doctor and got referred to an ENT specialist. (I remember asking him ďto please cut my nerve so I could be deafĒ) Tests were carried out that confirmed my left ear was in a poor way and it was more than likely tinnitus. I was told if the condition didnít improve in two weeks time I should go back to see the same doctor. Guess what -- within 10 days the intrusive noise disappeared. I was cured so that was that.
July 1997 whilst attending a wedding as best man, I collapsed late in the evening and was rushed to hospital. Because I fought to keep conscious I was able to describe my ordeal to the hospital doctor. I told him that I could only think I was dying and it must be a brain hemorrhage or something like that! Two hours later I was sent home without any real reason for my terrible fright.
One week later I was still so taken back by my experience I arranged to see a private Neurologist and make sure I was ok in the head. This expert assured me what I had experienced was one of those things and I was physically fit and in first class order.
July 2001 the tinnitus flared up again out of the blue with even greater ferocity than before and it almost nearly drove me mad. I could not really concentrate at work but I carried on as usual (even going to the gym) until I decided enough was enough and contacted a private clinic in London. I bypassed my local NHS GP (National Health Service general practitioner) and went straight to see a private doctor because I wanted help and not excuses.
Sept 2001 I was diagnosed with a AN (still not sure of the exact size) and was told my hearing was very bad on the left side. I would be referred to a specialist to discuss my urgent needed surgery.
My operation was set for November and I just wanted my life back and the noise to go away! Apart from the terrible noise superman Simonís life was great so why should a little operation bother me!
One week before the operation my hearing on my left side came back and the noise virtually disappeared, I felt great. I thought, ďhere we go again, Simonís own method of fighting illness has won again and my super fit body was doing its miracle stuffĒ. Big mistake, I should have realized that my will to fight illness was also my enemy.
The following is important because it will let you know the type of person I used to be. Nothing in my life was ever a problem. If it was work I always found a way to resolve a problem, normally with success. If it was a domestic situation again I dealt with it in a sensible controlled manner just like my illness. I had never experienced anger, lack of confidence, depression, anxiety, emotional problems or lack of ability. I tended to be in total control of my life in every way even though I would rush around at 100 mph and do far too much. Thatís the way I liked life and it just worked fine.
Looking back I was probably suffering a few other symptoms from the effects of the growing AN, but my body had a great way of compensating and I dismissed all the usual symptoms as described by so many other AN patients at the pre diagnosed stage. I truly believe my biggest problem was my ability to accept pain and suffering because of what happened to me when I was 17 to 21.
I hope you are not getting too bored yet because there is some great stuff to read soon. I am sure anyone who reads this story and is in a watch & wait situation will decide never to have surgery unless they are mad or guaranteed within weeks to die without it.
3. The surgery and the hospital stay (Nov 2001 to mid Jan 2002)
I was put to sleep on 30th November 2001 and I only knew who I was about two weeks later! Basically the operation didnít go to plan because my tumour was very bloody. I developed a blood clot in the forth ventricle, and became very unstable. The following are most of the complications that I developed following main operation:
Total loss of left sided normal hearing
Severe tinnitus (loud white noise) lodged in the deaf side of the brain. This is one of my main concerns and I can now just get by, it will never improve
Mild left sided motor neuronal facial weakness (no further signs since leaving hospital).
Treated for an undetermined organism that affected the brain lining (treatment with Certriaxone & Chiorajmphenicol). I believe this was a form of bacterial meningitis.
Communicating Hydrocephalus that resulted in a further operation to fit a ventricular shunt (28 December 2001)
Balance problems (now a lot less severe but still cause problems)
Loss of taste (only temporary)
Change in eye sight (difficulty focusing)
Chronic depression and anxiety (has got a lot better!)
Cognitive and emotional problems (my main concern -- cognitive is still my biggest problem)
I wonít bother to describe the absolutely horrendous time I had night after night in hospital (following the operations) because I am sure if you read other patients reports following surgery then you will understand exactly what I went through. But to be honest, the pain, suffering and chronic sickness following the operations was nothing compared to what I was to experience during most of 2002 and right up to early 2003. While I was in the hospital for the main operation and its complications, between 30th Nov 2001 and my final discharge on 14th January 2002, I actually felt that a form of life did exist beyond AN.
4. The first 5 months plus after being discharged from Hospital (Jan 2002 to mid June 2002).
I was taken home to my marital home by my wife who I was getting divorced from. She was a very strong willed lady and she had taken over my life because I didnít know what I was doing. My girl friend was told to leave my flat and never to return into my life. I thought that was what I wanted I but I know now I was in a complete state of post operative trauma and out of control (I didnít know what I was saying). My body had been close to death and physically I was in a mess, my weight plummeted from a healthy 75 kilos to 58 kiloís in less than 4 weeks.
By February I was experiencing terrible anxiety like nothing I had ever experienced in my life. I was taken to my local GP who just prescribed a diazepam. Within 2 weeks it got worse, I hadnít had more than 2 hours constant sleep in the past 8 weeks and my body was in reject mode. It was bad enough with the old TB pains coming back due to the muscle wastage, but linked to everything else I was beginning to fall apart. Two weeks later I was taken to my GP again, and within 2 days I was admitted to the Priory, a private mental hospital. [Ed: the Priory is the best private clinic in England, for those who have problems they need to overcome. Itís where the rich and famous are treated.]
From between February to May 2002 I was prescribed many pills for every possible type of depression thinkable as well as acute anxiety. I could still not walk in a straight line because my balance was awful so I couldnít believe the doctors were trying to get me to attend theory classes for positive, negative thinking and core value beliefs etc. Too me it was all crap and I felt just terrible. I just wanted to be left in peace especially as the noise of the busy hospital hurt my sensitive head. Today I still have the same terrible ringing noise but I have learnt through sheer will power and determination to ignore it and have a sort of life again.
The only thing I could do was eat, sort of sleep (The drugs kept me asleep all day and most of the night) and attend the morning Yoga class.
By mid April I experienced a miracle -- or was it my body fighting back? I think I found the will to carry on and one morning it happened! I woke up a 3 am in the morning with a complete feeling that the depression had lifted. I was so excited I phoned at least 3 people to tell them I think Simon is back! Even though my balance was still not good, my vision was not focusing clearly, my head had a terrible tightness around it and my bones ached all over, I felt for the first time I was sort of alive again.
Within 2 weeks I was discharged and back at home living with my wife. I decided a new start was required, so we moved house (very stressful), had a holiday abroad and started getting the new house prepared for a big refurbishing project. Looking back I was taking on far too much far too early.
Even though I was able to get by, I was in no state to even think about work, let alone contemplate going back to the office. Although the depression lifted back in April I was still getting the odd day when I felt depressed and this resulted in me spending hours lying on the sofa in complete despair. Basically, my emotional well being was now being tested and it was the start of another roller coaster ride to hell and back!
5. The next four months (June 2002 to October 2002)
By late June I was back in deep chronic depression and my life was confined to living on the sofa. My wife was trying her best to help me but I could not cope any longer with the sheer anguish of losing my mental ability. The anxiety of no longer being in control of my physical well being was too much for my body. I felt like my body was tearing me apart and destroying my very existence. By the end of June I was admitted back to the private mental hospital as my wife could no longer cope and she didnít know any other way to help me.
Between July and early September 2002, I spent most days in depression and lived on a cocktail of antidepressants, mood stabilizers, sleeping tablets, and lots more! The only thing I could do, was attend the yoga sessions each morning even though I felt absolutely awful. I must admit by now I had put back on all my lost weight but my body felt exhausted, drained, and on its last legs. By September my Insurance cover expired so I had no choice but to go home with a good supply of pills.
In total I spent nearly six months in one of the UKís top mental hospitals and I will be honest and say it was not where I should have been. I donít think any of my doctors, therapists or councilors had ever experienced a patient like me before and they definitely didnít really understand the effects of my operation and post-operative complications. I was treated just like any other patient who had been admitted for stress, depression or anxiety because of twenty-first century living.
By the end of September things at home got worse and my wife was at her wits end to know what to do with me. I ended up breaking down (something I had done at least 20 times in the mental hospital) in early October and my parents came to collect me because my wife could not cope with my emotional outbursts and depression.
By October I was living back at my parentís home in my old bedroom.
6. The next 4 months (October 2002 to February 2003)
At this point my life was at its lowest point ever. I was reduced to doing nothing all day and I was starting to become a recluse. The local NHS and my new GP arranged for a team of specialists to help me because I was now starting to talk about taking my life. Between October 2002 & January 2003 my parents, brothers and other friends were very worried about me. I was found wondering around in a field about to take an overdose. I was found at 3am in the morning with a knife in my hand trying to cut my wrist. I also tried to jump out of my parentís car whist it was on the motor way. I spent many weeks banging doors, hitting my head on windows and trying to bash the devil out of my skull. I had become dangerously unstable.
All the physical problems that still persisted were the last of my worries, the bloody depression and loss of my mind was slowly killing me. Everything I tried to read about via newspapers or on the TV scared me senseless and I couldnít face anything that made me feel fear. I was absolutely petrified of ever facing work again, going out of the house or communicating with people. Christmas evening I went to church with my younger brother and his family and I ended up breaking down in the church praying will some one please help me or take me away from this life of hell. I will never forget that day for the rest of my life.
In early January 2003 I was prescribed yet another drug but I knew they were not the answer. I decided I wanted my old life back but it was not going to come easy. I forced myself down the gym and ignored what my head was telling me and started training. It was the worst feeling in the world, I wanted to walk out of the place after only 5 minutes but somehow I found the strength to stay and slowly start the fight of my life. I felt absolutely awful but something inside of me (The old fighter from before) came back to life and for the next few months I spent every weekday in the gym. It was the hardest thing I have ever experienced and I hated every minute of it. I kept telling my brain to ignore all the terrible physical & emotional sensations. I concentrated solely on my mission to get fit and fight this illness the only way I knew how.
By the end of February my body was starting to take shape and for the first time I felt good about myself although it was difficult to get excited because all my other problems were still there.
As the weeks went by I was improving well physically and I started to learn to skip which was something in the past I had been very good at. At first I kept catching the rope in my legs and nearly falling over but after a few weeks I started to become quite good. I still have the strange balance sensation and even today I donít feel anything like I did before the first operation. Like many of my ongoing physical symptoms my body has managed to adjust and cope because it has had no choice. Even to this day I still occasionally walk into walls and feel like I am going to trip up. I definitely feel the cause of my two recent car accidents are because of my head problems.
6. Back to work
I returned to the office for the first time since my operation in January 2003 and it was extremely difficult for me, especially as I was not mentally well enough to perform any of my old duties as a Main Board Director. My biggest problem was my lack of cognitive ability (IQ) - why could I not grasp the simplest of tasks that in the past would have been a walk in the park.
My fellow directors agreed I could return to the office but only with medical supervision and to assist my rehabilitation. Even though I was afraid of the office it was something to do rather than being alone at home. All my colleagues were very understanding but they had not seen me on the floor in agony with mental grief for months on end when I was in the mental hospital. I suppose they just saw the old Simon and thought I was ok because I was back albeit very part time.
I agreed with work to come into the office 3 days a week but for no more than for 4 hours each day. All my old duties had been taken away from me and I was only allowed to read insurance literature, attend a few in-house meetings (observer only) and mix with a few well known clients in a PR social capacity.
I would attend the regular board meetings but to be honest I didnít (still donít) understand a thing! That is still the main thing that really upsets me Ė why does my mental ability seem to have diminished by so much? Anyway I found the only way to stop feeling depressed about my lack of ability was not to get involved in a subject that my brain just didnít understand anymore.
7. March to July 2003
During March, April and May, I just spent many hours in the gym (it helped me so much and it stopped all the aching bones). I would go to work even though I was virtually doing nothing and just plan my weekís social events. I was starting to get my life back in some way and I finally moved out of my parentís house and rented a place of my own.
By May my divorce came through so that was another problem out of the way. If I could only find a solution to my lack of mental ability, I would be there. I got so upset with my current problem I ended up writing a letter to my CEO who is a person who I have great respect for. Prior to that I also wrote to my various doctors, therapists etc., such as the letter below, to my psychiatric nurse (I have removed the names for obvious reasons):
Bexleyheath Community Mental Health Team
4 Emerton Close, Bexleyheath
Kent, DA6 8DX
I just wanted to explain a few things and it seems I am much better when Iím sitting quietly and can collect my thoughts and put pen to paper.
I cannot describe the sheer frustration of dread when I try and become involved in problems, situations that in the past (prior to Nov 2001) would have been a walk in the park or at least a friendly challenge. I would like you to understand something that you may never have come up against before but believe you me itís the worst feeling in the whole world! That is the actual loss of oneís ability to perform Ė by that I mean to hold meaningful conversations without getting very confused and tongue tired, to be with a group of people or a person that you would normally feel quite happy and relaxed to be with, to be able to cope with simple academic tasks that a 12 year old would be expected to understand and carry out.
When I was in the Priory, Hayes Grove, last year (April to June & July to Sept 02) I experienced many fears and anxieties as well as quite a few awful physical sensations, which still plague me today. I have learnt to deal with most of the physical problems but itís the loss of my ability as I knew it before, which is the one thing that is virtually eating me up inside. Not a day has gone by during the past 18 months that I have not been free of this complete loss of what I donít know! I am just hoping this cognitive test will finally, give you and my doctors a report on paper to prove I not making this whole thing up. I have never ever in my life been afraid of work, in fact work was my life, so I donít understand why this is happening.
I have enclosed a copy of my diary that I started last July, which was the second time I was admitted to the Priory. Unfortunately, I am unable to give you a complete copy beyond Sept 2002 because the floppy disc I was saving it to corrupted and I lost all my entries but an IT friend was able to retrieve what you have here. From this you will see (read) that I was suffering with terrible fears of lost ability and these have never really left me. I have just got by and itís not the way I can carry on indefinitely. Itís one thing to lose your physical health in some way but itís another thing to lose your cognitive ability. As far as I am concerned before I had the operation in Nov 2001 I was in total control of my life despite going through a divorce.
I want to try and explain some of the problems I am having at the moment and perhaps you may be able to understand what it is like for me virtually every day. Lets start with work previously the joy of my life. I go to the office 3 days a week and I spend approximately 4 hours in terror because I understand very little of what I am trying to read or do. I am limited to reading insurance articles and attending a few in house meetings but only as an observer. Most of the time the technical issues discussed go straight over my head and itís as if everyone is speaking a foreign language.
I always thought I had a pretty good understanding of insurance and I took pride in reading many articles so as to keep abreast of the changes in my hectic industry. I absorbed knowledge like a sponge and could quote various insurance subjects with no problem at all.
After I left school, I went to college and studied electrical engineering but after a short time I realized that was not for me so I decided to go into insurance. In 1979 I joined the General Accident Insurance Company and started from the bottom and the rest is history.
My problems are not just restricted to the work environment! for example when I am at home I find myself walking around the house with several pieces of paper in my hand and I literally become so confused with just the simplest of tasks that involve limited thought and understanding. I have not been understanding a great deal about the articles that have been given out during your anxiety groups. I am even making a complete mess of completing the three forms that you hand out each week. I have found the only way to reduce this high state of anxiety and confusion is to do things that involve very little required thinking. I suppose that is one reason why I spend so much time in the gym even though it does effect my body because of the past damage to my spine and right sacroiliac joint. Thatís another nightmare of a story where I was totally miss-diagnosed aged 17 years old but I wonít bore you with all the details.
As you know I started a computer course several weeks ago and I am already finding it difficult, I am not the kind of person to give up so I suppose I will just carry on and see what happens. In the past this course would have been quite simple as itís pretty basic but I am literally glued to the screen with pain written across my face as I try to understand the written commands. Itís as if my IQ has been halved and I have no way of retrieving it back. My command of written English also has deteriorated and I can only type a sensible letter after many hours of thought. Letter and report writing was something I did at work with my eyes closed but now itís almost impossible to do without the aid of the spell checker. I have brought a few books that various people have recommended and I donít even understand the story lines anymore, even some words allude me of there meaning. Playing board games was never a problem but now anything that involves an ounce of required thinking sends me into a complete panic.
I think one of the worst things that keeps happening to me at work is someone will talk to me about a certain subject and I will start to answer and discuss the point raised but and before long Iím completely lost and then it becomes fear over fear. The people who I am with at work have no idea I am suffering in this way because they just see the same old Simon who used to be to so accurate, confident and precise about many things.
This morning I was reading article 5 and it made absolutely no sense to me at all. I have tried to understand the meaning behind these beliefs but I am afraid as I said to the doctors in the Priory itís just mumbo jumbo to me. Itís not that I donít want to understand these issueís but itís just impossible for my brain to understand the question Ė thatís the point that hurts so much. I can accept any physical illness and deal with the discomfort of pain but what I canít cope with is the loss of my mental ability.
Unlike most people within your group I donít seem to suffer with the same sort of anxiety problems such as eating certain foods, traveling on public transport, being in large or small spaces etc. Itís only when I am confronted with a problem that I donít understand do I start to become anxious. At that point my brain just goes into panic mode and I become more upset so I just switch off to the problem and eventually it goes away. This is not the way I want to lead my life but it seems I have no control ever since I agreed to let the doctors remove my tumour. Even though I am pass the stage of terrible suicidal thoughts if I had the choice of my tumour back and life as it was 18 months albeit for a few years I would gladly swap but that is not an offer that is going to happen. All I can do now is try and rebuild my life with the limited resources I have. The only problem is how long will take for me to reach a stage where I can do something (that something being some kind of work) meaningful and useful. My employers have been very supportive and I canít thank them enough for their understanding, especially David Hughes my CEO. I am happy to try any kind of therapy to get my life back but I will not keep doing things that literally tear me apart inside because I simply donít understand!
I want you to know this short letter has taken me a long time to complete with endless mistakes but in the end I seem to get there provided I have no time limits. Itís just the way it is so I have no choice but to go with the flow as they say. I hope this perhaps gives you some idea of what you are dealing with. One thing that I want you to understand is I wonít give in because thatís the way I am (a born fighter) but itís not easy knowing what you were then realizing things have changed for the worse.
Here is a letter that I sent a few weeks later to my various doctors, therapists and my CEO (names again removed):
30th June 2003
Attn: L & S (Community Psychiatric Nurses), Dr F (Blossoms Hill Medical Centre), Dr B (Psychiatrist Ė Bexleyheath Centre), H (Insurance Nurse Specialist Ė Unum Provident), D (CEO - SHW Limited).
I am sending this letter to various individuals including my employer, SHW Ltd, in the hope that you will all understand my current position, I as sure by providing you all with the same hymn sheet it will help enable me to get the right form of help! Just being able to finally express my terrible feelings that I now know also apply to other sufferers is a heavy weight off my mind.
This letter has taken me a long time to type and construct due to the severity of my current condition. I now finally understand why I am suffering so much. Although my surgery was a success, the complications have been ongoing and to this day I am suffering from an illness far greater than any physical pain. Loss of mental ability (IQ) and emotional problems both of which never entered my life until after my surgery.
It has taken me a long time to find the attached information and at last realize I am not alone so please read this letter carefully together with the attached documents. If you have never experienced cognitive & emotional problems then this may enlighten you to the torment people like me now live with on a daily basis.
I am sure most of you know that I loved my work and I took great pride in having the ability to carry out my job as a main board director for Sterling Hamilton Wright Ltd (London based Insurance Brokers).
Since returning to the office just before Christmas 2002 I have been beating myself up with sheer anxiety and frustration because I couldnít understand why my brain function had become so impaired. After finally discovering this information I feel a lot happier that I am not alone although right now I donít know where my future lies. This information that I have had to search for myself I feel should have been made available to me following my surgery so at least I could have understood from the start I was not going completely mad! Even better it would be helpful if practicing surgeons made it clear that such information was readily available prior to radical surgery taking place. Although my two surgeons were fantastic I felt I was given no real information about the possible complications and suffering I was to experience. The aftercare following my discharge from the private hospital was virtually non-existent.
I wrote to my Physicatric nurse on the 16/6 (see attached copy) and you will note even before I found out about this information I knew it was not normal but now I know itís perfectly ok! At last I realize what I am now suffering with.
I am hoping to have a cognitive test as soon as possible to discover the extent of my problem, which I believe to be quite severe. Many of you may be thinking Simon Rose has a screw loose but please believe me when I say I am still the same old Simon but just a lot slower!
Because of who I am, I will never give up the fight to regain my life but even my patience is being tested. I am glad to say the days of wanting to end my life (something I wanted to do on many an occasion between February 2002 and February 2003) are finally over and I intend to slowly get off these blasted happy pills!
I have discovered ways of adapting to my condition but I know I still have a long way to go. One of the things that I must not do is try and tackle situations/problems that previously I found fairly straight forward. Just simply trying to read an article about a certain insurance subject causes me great mental pain and frustration because I canít logically understand something that before was quite understandable (does that make sense?). Even writing a letter, which is something I thought I wasnít too bad at now causes much frustration because I keep getting my words all mixed up and I canít spell for toffee.
As you read this letter, please understand this for a second - what I have typed so far has taken me over 3 hours, frustrating isnít it!
Anyway, I hope after reading this letter you are slightly more in the picture (please forgive me if you are qualified in such fields) about the suffering experienced by patients following Acoustic Neuroma surgery.
If you are one of my medical doctors, councilors or similar then I am sure you will get a definite answer once my cognitive tests are carried out.
You should find the site www.anarchive.org very useful in obtaining information about some of the complications of my surgery (mine to date have been the following):
Following Main operation - Severe tinnitus (loud white noise) lodged in the deaf side of the brain
During main operation Ė (blood clot in the forth ventricle)
Following the main operation Ė Mild left sided motor neurone facial weakness. (no further signs since leaving LBH)
Following main operation Ė Mild Hydrocephalus
Following main operation Ė treated for an undetermined organism that affected the brain lining (treatment with Certriaxone & Chiorajmphenicol). I believe this was a form of bacterial meningitis.
Following main operation Ė Communicating Hydrocephalus that resulted in a further operation to fit a ventricular shunt.
Following Main operation - Total loss of left sided normal hearing
Balance problems (now a lot less severe but still cause problems)
Loss of taste (only temporary)
Change in eye sight
Chronic depression and anxiety (has got a lot better!)
Cognitive and emotional problems (my main concern)
Should you find the time to visit the above site, have a look at the various articles and reports about this condition that seems to have effected so many people. Like most other severe sufferers I fear that what I have been left with is an illness far worse than the tumour itself. Anyhow, Iím alive and determined as ever to get better or as best as I can but please be patient as it wonít happen over night. I am open to any suggestions that may help but most importantly I believe in myself and my ability to overcome this frightful condition although I now understand it will probably take years rather than months.
Thank you for taking the time to read and understand what it is like for me and many others.
At this very moment I am coping on a daily basis with my current lack of ability, but itís not the way I want to exist indefinitely. In light of my problem, my Psychiatrist has arranged for me to undergo cognitive testing (Neuropsychological Testing) so by the end of July I may at last know the extent of my condition. I am philosophical about the outcome but I will no longer let it send me into fits of depression and anxiety. At the moment and possible for the future I may have to look at other ways of coping and living my new life but I and determined that life does goes on.
I want other patients in a watch & wait situation or those in a dilemma about what form of treatment to choose to really understand all the options before they decide upon surgery. Looking back, my biggest regret is not knowing such information existed, because believe you me had I known then what I do know, I would have never opted for the radical head surgery, FSR would have been my route without hesitation.Good luck to all of you. If you want any further information about my past and ongoing compilations, please drop me a line and I will try and assist.
Simon Rose <simonrose AT ntlworld.com>
Last Edited: Thursday, August 14, 2003