Well I must apologise as I have not been keeping up my Blogg, I never was very good at diary keeping. Well since the last posting a lot has happened, I had two more meetings with Dr John Wadley the surgeon at the Royal London to discuss surgery and update my MRI scan. The second MRI scan was taken in May after our first meeting and then we discussed a course of action in June, the scan had showed the cavernoma to be larger than they first thought, and so Gamma Knife might prove too dangerous to have done. However all six of the surgeons working on my case agreed finally that they would perform the operation if I was in agreement. The treatment took place on the 5th September 2007 and the process started at 8am (if you remember this was the day of the London tube strike adding to the excitement)! My decision to have the GK was based on stats, there was a 30% chance of a re bleed (even a small bleed would have a devastating effect in the brainstem) and post surgery that risk would be reduced to 2%. However the surgery itself posed a risk of about 20% chance of me having a return of symptoms I had experienced post bleed the first time permanent or temporary.
Well I opted to take the risk so my journey began first to Barts and The London at 8am to have the MRI scan and meet part of the team that would be working with Dr Wadley. The MRI scan was a little different than before as they had to fit a frame on my head, this entailed having four very painful injections into my head so that the frame could be bolted onto my head, before the scan (see startled rabbit in the headlights photo). Then at about 10am I was driven in an ambulance with a nurse, and my husband was able to accompany me (this was due to the tube strike) to the Gamma Knife Centre in Harley Street, Marylebone. Here I met Dr Wadley again and the team members that would be working together, also I had another apparatus placed on my head to get precise measurements to prepare my treatment plan of radiation. It was explained to me that there would be 16 positions that the GK machine would rotate my head into before emitting small doses of radiation culminating in 14 grey (a safe amount for the brainstem to receive). I must stress that these rotation movements were minute and hardly noticeable, and unlike an MRI scan I was allowed to move the rest of the body, if I wanted. The GK machine looked like an MRI scanner and you lay on it in the same way.
I moved in and out of the GK machine 16 times and the whole procedure took 54 mins, each time I came out of the machine there was a bing bong sound (like at the check out of a super market) the nurses also suggested that I chose some music for the event so the room was filled with soul classics such as 'I feel Good' by James Brown and 'Sexual Healing'by Marvin Gaye(I know a strange choice but you should have seen the other options ABBA and Britney Spears)! Once this was complete I was released from the head frame and walked out of the treatment room (next photo), then after a bit of a wait (again due to the tube strike) myself my husband and the nurse were taken to the Royal London to settle me in a bed for the night. My head felt very numb and a bit bruised but apart from that everything else was fine, in fact I felt elated that it was all over. It will be two years before they will know if it has been effective and if there will be any side effects from the radiation. I can say that I have slept alot and my head is still bruised two weeks post surgery, but apart from that everything seems ok.
I am glad that I have had the surgery done and feel very positive, even though my head still feels bruised I am sure this will heal. I have been putting Chamomile ointment on my head and taking a homeopathic remedy Passiflora meant to assist with something traumatic happening either physical or emotional. I think I can tick both those boxes, although I shut a lot of my fears out and did not allow my self to dwell on the worst of them.
(To get Andre's experience at Sheffield check this link)
www.marcellot.co.uk/gamma-knife-sheffield
Saturday 22 September 2007
Friday 16 February 2007
Neurosurgeon - Mr Wadley Royal London
Hi,
I met with my neurosurgeon on 14th February and feel very positive about the outcome. He told me that in his opinion the cavernoma was too deeply in bedded in my brain stem to remove with invasive surgery. I was very relieved to know that this decision had been taken from me, this might sound strange but I felt such relief I can't tell you. However he would recommend me as an ideal candidate for gamma knife surgery which is non invasive surgery, I had read a little bit about this. This would not remove it completely but would reduce the risk of a re bleed from 30% down to 2%. I am going to have another MRI scan and get an up to date image of the brain stem and meet with him again in May. I felt strange having a conversation with someone who had more interest in my condition (the brain stem cavernoma) than with me and how I was coping emotionally, but hey that's his specialism.
I had physio today my first session since the bleed in October, I have muscle wasting in my right shoulder, causing me some pain, it was great to get some specific exercises to address this.
I have been doing yoga and some light cardiovascular exercise on my own up until now, which he was pleased with.
I am feeling very positive and happy really to be able to get on with my life and not be afraid. It might sound weird to anyone reading this but I know I am going to be alright and for now I am OK. I am due back to work at the end of February and think this is going to be OK to, I am confident and know that although my options have reduced ( I know I can get a second or third opinion about surgery)I feel great about the options I have.
Chat to you soon x
I met with my neurosurgeon on 14th February and feel very positive about the outcome. He told me that in his opinion the cavernoma was too deeply in bedded in my brain stem to remove with invasive surgery. I was very relieved to know that this decision had been taken from me, this might sound strange but I felt such relief I can't tell you. However he would recommend me as an ideal candidate for gamma knife surgery which is non invasive surgery, I had read a little bit about this. This would not remove it completely but would reduce the risk of a re bleed from 30% down to 2%. I am going to have another MRI scan and get an up to date image of the brain stem and meet with him again in May. I felt strange having a conversation with someone who had more interest in my condition (the brain stem cavernoma) than with me and how I was coping emotionally, but hey that's his specialism.
I had physio today my first session since the bleed in October, I have muscle wasting in my right shoulder, causing me some pain, it was great to get some specific exercises to address this.
I have been doing yoga and some light cardiovascular exercise on my own up until now, which he was pleased with.
I am feeling very positive and happy really to be able to get on with my life and not be afraid. It might sound weird to anyone reading this but I know I am going to be alright and for now I am OK. I am due back to work at the end of February and think this is going to be OK to, I am confident and know that although my options have reduced ( I know I can get a second or third opinion about surgery)I feel great about the options I have.
Chat to you soon x
Tuesday 13 February 2007
brain surgery
Hi,
I am due to see the brain surgeon tomorrow and as those that know me 'know' Feb 14th is my birthday. I feel very positive, and have just had a lovely meal with my daughter her boyfriend Carl and Tony my husband. I am having breakfast in the morning with one of my closest friends and am hoping the day will go well. I meet the surgeon at the Royal London at 2.30pm, I have a list of questions of my own and ones that my sister downloaded for me, thank you Wendy I love you.
I will post the information here and answer some of the questions I hope! I have just finished reading Sacha Bonners book, 'Dipped into Oblivion' she like me had a brainstem cavernoma, which bled when she was only twenty years old. Eventually she did have it removed by an American surgeon leaving her with some disabilities post surgery, however she is now writing for the Daily Telegraph health page so she must have overcome these to some extent.
I met someone I used to know a while ago today, and he reminded me that he had a brain hemorrhage 2 years ago and the Royal London had taken care of him, even flying a surgeon over from Switzerland to complete the surgery. I am taking this as a very positive sign, he reassured me that I was in the right place, lets hope I feel the same after my meeting tomorrow.
Love to you all xxx
I am due to see the brain surgeon tomorrow and as those that know me 'know' Feb 14th is my birthday. I feel very positive, and have just had a lovely meal with my daughter her boyfriend Carl and Tony my husband. I am having breakfast in the morning with one of my closest friends and am hoping the day will go well. I meet the surgeon at the Royal London at 2.30pm, I have a list of questions of my own and ones that my sister downloaded for me, thank you Wendy I love you.
I will post the information here and answer some of the questions I hope! I have just finished reading Sacha Bonners book, 'Dipped into Oblivion' she like me had a brainstem cavernoma, which bled when she was only twenty years old. Eventually she did have it removed by an American surgeon leaving her with some disabilities post surgery, however she is now writing for the Daily Telegraph health page so she must have overcome these to some extent.
I met someone I used to know a while ago today, and he reminded me that he had a brain hemorrhage 2 years ago and the Royal London had taken care of him, even flying a surgeon over from Switzerland to complete the surgery. I am taking this as a very positive sign, he reassured me that I was in the right place, lets hope I feel the same after my meeting tomorrow.
Love to you all xxx
Wednesday 24 January 2007
brainstem cavernoma
Hi,
I really wanted to keep everyone up to date with how I am doing and help friends and family to understand my condition thoroughly, so here goes my first blog.
It really started on the Monday 2nd October 2006, I went to the doctor as I had a pain in my shoulder ( I thought it was a trapped nerve) on my right side. The Doctor prescribed me sleeping tablets and pain killers, I explained that I would not be happy to take sleeping tablets and I already had some pain killers I could take at home. However I would like to be referred to see a physiotherapist. The Doctor insisted that the prescription of pain killers and sleeping tablets was the normal course of action (she did not examine me). Anyway she referred me and I did not take the prescription thank god! I learned later that this lethal concoction would have put me in a coma or induced seizures.
On the next day I met my Mum for a meal at lunchtime, I felt really rough when I got up but did not want to cancel the lunch date, so took some pain killers. At lunch I noticed I could not walk properly in my heels, I just put it down to wearing trainers too much as a fitness instructor. I really struggled to get back to the tube and held on to my Mum all the way.
Once I was home and rested I started to feel better. I did have more pain killers (ibuprofen), and by the next day I had finished the whole packet. I was in work that day and had to conduct a series of meetings, I noticed that I couldn't write properly and the pain in my shoulder was severe using the computer mouse was impossible. However I carried on and got someone else to take notes in my meetings! I even went for my usual run at lunchtime ! Which accelerated the symptoms to the point that my right leg lost feeling and I had to walk back to the office dragging my leg behind me.
My team at work persuaded me to get to the local A&E department by the time I got there that evening I was slurring my speech and sounding drunk. However after a series of tests they let me go and told me to come back to the neurology department after the weekend if it had got worse it was now Wednesday!
The next day I took time off in the morning to see my osteopath for my shoulder, when I explained all my other symptoms she proceeded to do the same tests that they had done in A&E and said that there were only very mild differences, because of the muscles in my face dropping she said I should really get and MRI scan as soon as possible. However this did not happen until the Friday when I went back to A&E my osteopath phoned the neurology department to ensure a consultant would be available to see me, which he was and within 2hrs I was having an MRI scan and what was revealed it was and is a brainstem cavernoma , a what?
I have been through 4 months of coming to terms with and recovering from the first bleed I have experienced in my 40 years. At the moment I feel very lucky, to be alive, that it wasn't worse, that I had support from family, friends and work. I know I am going to have to make some tough decisions over the next year but I am glad to be here to make them. I had quite a journey of recovery the emotional one is as hard to cope with as the physical one.
After the loss of feeling in my right side and immense fatigue I feeling much stronger and am planning on returning to work, and waiting to meet with a neurosurgeon to discuss removing the brainstem cavernoma.
For those of you wondering what a brainstem cavernoma is I will try to explain. Using parts of the Angioma Alliance UK information guide.
Cavernous angiomas are clusters of abnormal blood vessels found in the brain and the brainstem, spinal cord and rarely in other parts of the body. Cavernous angiomas look somewhat like rasberries; they consist of many little bubbles (caverns) of various sizes filled with blood and lined with a special layer of cells (endothelium). These cells are similar to those that line normal blood vessels, but they lack the layers of protection found in normal blood vessels, and the bubble-like structures of cavernous angiomas sometimes ooze blood.
While an angioma is technically a tumour, it is not cancerous and does not spread to other locations. It can however increase in size following bleeds, again it is not cancerous.
Symptoms depending on their location can cause seizures and other neurological deficits, including numbness weakness in arms and / or legs, ocular difficulties, speech and balance problems. If you would like to obtain more information go to http://www.angiomaalliance.org.uk/
Love to you all I will keep in touch
I really wanted to keep everyone up to date with how I am doing and help friends and family to understand my condition thoroughly, so here goes my first blog.
It really started on the Monday 2nd October 2006, I went to the doctor as I had a pain in my shoulder ( I thought it was a trapped nerve) on my right side. The Doctor prescribed me sleeping tablets and pain killers, I explained that I would not be happy to take sleeping tablets and I already had some pain killers I could take at home. However I would like to be referred to see a physiotherapist. The Doctor insisted that the prescription of pain killers and sleeping tablets was the normal course of action (she did not examine me). Anyway she referred me and I did not take the prescription thank god! I learned later that this lethal concoction would have put me in a coma or induced seizures.
On the next day I met my Mum for a meal at lunchtime, I felt really rough when I got up but did not want to cancel the lunch date, so took some pain killers. At lunch I noticed I could not walk properly in my heels, I just put it down to wearing trainers too much as a fitness instructor. I really struggled to get back to the tube and held on to my Mum all the way.
Once I was home and rested I started to feel better. I did have more pain killers (ibuprofen), and by the next day I had finished the whole packet. I was in work that day and had to conduct a series of meetings, I noticed that I couldn't write properly and the pain in my shoulder was severe using the computer mouse was impossible. However I carried on and got someone else to take notes in my meetings! I even went for my usual run at lunchtime ! Which accelerated the symptoms to the point that my right leg lost feeling and I had to walk back to the office dragging my leg behind me.
My team at work persuaded me to get to the local A&E department by the time I got there that evening I was slurring my speech and sounding drunk. However after a series of tests they let me go and told me to come back to the neurology department after the weekend if it had got worse it was now Wednesday!
The next day I took time off in the morning to see my osteopath for my shoulder, when I explained all my other symptoms she proceeded to do the same tests that they had done in A&E and said that there were only very mild differences, because of the muscles in my face dropping she said I should really get and MRI scan as soon as possible. However this did not happen until the Friday when I went back to A&E my osteopath phoned the neurology department to ensure a consultant would be available to see me, which he was and within 2hrs I was having an MRI scan and what was revealed it was and is a brainstem cavernoma , a what?
I have been through 4 months of coming to terms with and recovering from the first bleed I have experienced in my 40 years. At the moment I feel very lucky, to be alive, that it wasn't worse, that I had support from family, friends and work. I know I am going to have to make some tough decisions over the next year but I am glad to be here to make them. I had quite a journey of recovery the emotional one is as hard to cope with as the physical one.
After the loss of feeling in my right side and immense fatigue I feeling much stronger and am planning on returning to work, and waiting to meet with a neurosurgeon to discuss removing the brainstem cavernoma.
For those of you wondering what a brainstem cavernoma is I will try to explain. Using parts of the Angioma Alliance UK information guide.
Cavernous angiomas are clusters of abnormal blood vessels found in the brain and the brainstem, spinal cord and rarely in other parts of the body. Cavernous angiomas look somewhat like rasberries; they consist of many little bubbles (caverns) of various sizes filled with blood and lined with a special layer of cells (endothelium). These cells are similar to those that line normal blood vessels, but they lack the layers of protection found in normal blood vessels, and the bubble-like structures of cavernous angiomas sometimes ooze blood.
While an angioma is technically a tumour, it is not cancerous and does not spread to other locations. It can however increase in size following bleeds, again it is not cancerous.
Symptoms depending on their location can cause seizures and other neurological deficits, including numbness weakness in arms and / or legs, ocular difficulties, speech and balance problems. If you would like to obtain more information go to http://www.angiomaalliance.org.uk/
Love to you all I will keep in touch
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