Yes, the record is over.
Date: Wednesday 17th October 2007
Time: 12:30pm
Location: The flat, bedroom.
Time since last seizure: 382 days (I think)
Injuries incurred: None.
Notes: Remained conscious. Caused entirely by being confused about time-zones, tired and sleeping in with jetlag resulting in going 18 hrs without taking a tablet. This proved too long.
Damn it. Just shows how close to the edge you are all the time. I guess it proves that the tablets work!
This weekend James and I travelled to London primarily to attend the Angioma Alliance UK first annual forum conference. Hopefully they won’t mind me quoting their leaflet because I know quite a few people reach my website when searching for information on cavernous angiomas / cavernomas / cerebral cavernous malformations (CCM) / cavernous haemangiomas (all names for the same condition).
Angioma Alliance UK is an organisation established by and for those affected with cavernous angiomas and their families. Their website www.angiomaalliance.org.uk provides information about cavernous angiomas, our current members and information on acquiring membership. Along with our parent organisation, Angioma Alliance based in Virginia, USA, we also provide updates on research.
If you would like more information about cavernomas I urge you to contact angioma alliance as they specialise in providing clear information about the illness and offer support to anyone affected by the illness.
It was a very informative day for James and me. We discovered lots of information that we didn’t have previously. A lot of the information on the web is contradictory and it was really good to hear from actual specialists who research the condition and treat it every day. There were talks on prognosis, standard surgery, genetics, gamma knife surgery and how a family should approach the issues related to a diagnosis.
It was all arranged by the Angioma Alliance UK Co-ordinator Ian Stuart and he has already announced the next annual Angioma Alliance UK forum in 2008. Here is a little pic of Ian doing his stuff.
In the evening after the forum we met up with Greg, Phoebe and Dudley for some dinner at Pizza Express. Afterward we went to Ed’s for some milkshakes. I had a peanut butter malt milkshake. It was nice but possibly a little bit too peanut buttery. The one James had was lovely - banana coffee.
We also saw some wonderful weather on the way to London. Here are a few pics of the weather and meeting people:
Date: 1st October 2006
Time: 10pm
Location: The flat, using the computer.
Time since last seizure: 23 days
Injuries incurred: None.
Notes: Remained concious. Managed to keep it relatively minor with concentration. Can’t really do that without James being there and besides I think it’s a temporary effect anyway.
As mentioned yesterday, I have found this week quite a strain. I have been feeling rather icky after last weekend’s seizure. Sometimes the effects are more sustained than other times.
This weekend however is going to be splendid. I have booked this afternoon off work and plan to do a few things. Firstly I will go home and gather a shopping list of the ingredients I need to make excellent anniversary foods, such as heart-shaped chocolate raspberry cake and roast loin of pork with special roast potatoes. Then (after watching Neighbours and probably eating Supernoodles for lunch) I will head into town to purchase as many of said ingredients from local shops with local produce! I will visit Magdalen Road and use the butchers, bakers, fish mongers and deli there and will pick up my organic vegetable box from The Bran Tub health shop provided by Rod and Ben’s Organic Seasonal Foods. This is the first time I have ordered from Rod and Ben’s. I thought I would give it a try following good reports from people such as Becky who use similar (but not the same) services. I also have a couple of parcels to pick up from the parcel place.
Later I am hoping to pop into The Mount Radford pub to bid farewell to a work colleague who will be greatly missed. Often i’m fairly indifferent about people who come and go at work but not this time. Good luck Helen.
Over recent weeks, I have narrowed down that working long hours and having very busy weeks correlates almost exactly with an increase in seizures. I conclude that stress is my primary cause. Not stress in the way you would think though - I don’t feel irritated or angry with work, just the general quantity. I used to actually thrive upon this and worked much better with a certain amount of pressure but things change. As a result I almost feel more irritated with myself than with my work.
This raises many questions for me and my potential earning power now and in the future. Will I have to discuss my timetable with my boss? Will I have to admit inadequacy to do the job at all? James has said that he will endeaver to get paid more in his job so that I could possibly get a less demanding job. This would make me sad initially but it may be something I have to accept if I want to reduce the number of seizures and believe me, that takes precedence over virtually everything else. I seem to get more and more residual injuries and I feel it is a matter of time until something serious happens. The burden on family, friends and work colleagues also troubles me greatly.
Conversely I feel selfish whenever I become upset about my situation. There are those who suffer much more greatly than I from terrible physical afflications.
Not one day passes where I do not think about it. Not one evening with my husband or friends goes by without me worrying that I will burden them with another seizure. I frequently bore them with pointless talk of it. Last time I passed out because the pain was too great. I remember it clearly. James said I lay unconcious with my eyes open.
I think the time has come to do more. This brand of medication is not working sufficiently. It is time to demand more from my doctors. Mr Whitfield believed that more could be done for me and I believe it too.
Date: 9th September 2006
Time: 5.25am
Location: In bed, the flat
Time since last seizure: 35 days
Injuries incurred: Busted lip, aching neck.
Notes: Quite a bad one. Had had a very busy week at work. Might arrange some days off.
So it seems, from reading the Angioma Alliance discussion mailing list that Aspirin and Ibuprofen are deadly for people with cavernomas. Something to do with blood thinning/thickening stuff.
Well gee thanks doctors for telling me about this one. Please tell me, why the fricking hell you call me in to see you to “check my progress” every god damn 3 months if you don’t even know the most basic stuff?
Sometimes they seem more concerned with what i weigh than helping me to reduce the chance of spontanious brain combustion.
Arghhh £$^$^&%^&%^
Date: 4th August 2006
Time: 11pm approx
Location: The flat
Time since last seizure: 18 days
Injuries incurred: No major injuries, just aching neck.
Notes: Didn’t lose conciousness. Just strained eyes and neck slightly.
So, to go into a bit more detail re. my previous post, I give below a report of the latest seizure developments:
(As you already know)
Date: 10th May 2006
Time: Approx 7.30pm
Location: Double Locks pub, Exeter.
Time since previous seizure: Approx 1 yr 2 months.
Injuries incurred: Bitten lip and general mouth cutting. As usual 2 week recovery time for mouth injury.
Notes: Although time since proper seizure noted as 1 yr 2 months, plenty of ‘auras’ were experienced in between.
Date: 23rd June 2006
Time: 1.10am
Location: In bed, asleep, the flat.
Time since previous seizure: Approx 6 weeks.
Injuries incurred: Bitten lip and general mouth cutting again. 2 week recovery time for mouth injury.
Notes: Not much to say really.
Date: 8th July 2006
Time: Approx 7am
Location: In bed, asleep, Becky’s flat in Bristol.
Time since previous seizure: Approx 2 weeks.
Injuries incurred: None.
Notes: It woke me up and I remember some of the seizure but obviously slipped into unconciousness during. Had a period of general confusion afterwards, thinking it was a good idea to wander into Becky’s room and wake her up. She kindly made tea for us and no major hang over resulted thankfully due to quick tea injection.
Date: 13th July 2006
Time: 2am
Location: In bed, asleep, the flat.
Time since previous seizure: 5 days.
Injuries incurred: Finger nail sized cuts in the palms (nails are now cut short), strange blisters/sores on the 3rd and 4th toes of my right foot, two bumps on the head.
Notes: James tried to prevent me from falling out of bed but it was quite difficult for him. He prevented me from leaving the flat to embark upon “the search for more toilets”.
Date: 17th July 2006
Time: 7am
Location: In bed, just woken, the flat.
Time since previous seizure: 5 days.
Injuries incurred: None, other than an aching neck.
Notes: Was awake, knew it was going to happen so woke up James. Wasn’t too bad and I didn’t lose conciousness. Decided to stay home from work anyway as i had no meetings. Turned out to be a good idea. James stayed home until lunch time, at which we decided it was ok for him to go into work.
Date: 17th July 2006
Time: Approx 3pm
Time since previous seizure: 8 hours.
Location: Leaving the en-suite, trying to reach the bed or something. I was confused and can’t remember well.
Injuries incurred: 2 bumps on the head, scrape and bruise on the right foot, bruise on right knee, bruise just above right knee, large bruise and scrape on right forearm, HUMONGOUS bruise and scrape on right upper arm, bruise on right elbow.
Notes: I don’t remember much about this one at all. The last thing i remember is being in the bathroom and thinking to myself “i’m going to have a seizure” but i didn’t have time to do anything much. I woke up (I think…this is very hazy) on the bedroom floor, head towards the door and foot kind of kicking the bedside table. I think i must have fallen down here and hit my arm on the door which was propped open with a doorstop. I had the worst hangover ever known and i remember lying there just kind of whining James’s name until my confusion had subsided enough to know where i was. I got up and immediately forgot that I had been on the floor and wandered through to the lounge where i did the familiar thing of sitting at my computer. IRC was highlighted so i thought i would tell James that a few minutes ago i felt like i was going to have a seizure but thankfully i hadn’t (you kind of reset to the last thing you accurately thought…kind of a mental “restore settings from last working configuration”). James is always window 4 in my irssi so i tried to Alt-4 and say “James” however this somehow came out as
1555.53 [+Greeneyez] 44jame
in #exeter.I then typed the following:
[Greeneyez] o’t 44lkrrrrrrrrrrpleqwe p09^9^9^9^9^9^9^9^
which at the time I honestly and truly believed to say “I don’t feel well please help” but I immediately felt bad because I thought to myself “that’s going to make James think I’ve had a seizure when I haven’t and that’ll make him worry and want to come home” so I never actually pressed enter to send that message to James. As it happened, the initial “44jame” going uncorrected in #exeter for so long was enough to make him call the house land line from work (he’s so amazing isn’t he), long before i was fully capable for making a concious decision to call him myself, so you could say IRC to the rescue there. I managed to answer the phone and although I sounded completely normal in my own head, James immediately identified that i was in classic post-seizure foggy world and told me to go to bed until he got home. I did as he said, still feeling awful. He didn’t take long to get home and took care of me with tea and painkillers. Later things became clearer in my head and judging by the injuries and how i was feeling I realised that the only explanation was a proper seizure and not just an aura.
James has asked me what it is like to feel like you really don’t know what’s going on and it’s hard to describe. You don’t know what’s going on, but you don’t necessarily know that you don’t know what’s going on, if that makes sense. You may think that doing something completely foolhardy or odd is a good idea, like shaking your brother awake at 3am to ask him what “his plans” are, or leaving the flat at 2am to “search for more toilets”.
So how do i feel about this increased frequency of incidents? Well, obviously not entirely ecstatic. As previously explained, cavernomas leak blood and the leaked blood causes seizures. This leads me to conclude that my cavernoma has recently done a bit of leaking into my happy brain cells thus pissing them off. If only we could apply an elastoplast to the cavernoma to prevent further bleeding (scarily referred to as ‘hemorrhaging’ amongst medical peeps), or maybe use one of those dentist sucky vacuume tube things to remove any blood sloshing around in there. Sadly these suggestions don’t go down well with the aforementioned medical peeps.
Thoughts pass through the mind of “do you ever hear about old people with epilepsy…not really…does that mean…they all die relatively young?” etc. It’s not a good train of thought but deep down i know it’s silly because millions of people live with epilepsy all the time. I just have to acclimatise myself back into being a more regular sufferer having got used to a blissfully long period without any effects.
You know what? I’m god damn sick of being epileptic now. Just had enough now, ok? Thanks.
On Wednesday I went to Plymouth with James to meet Mr Whitfield regarding the MRI scan I had 3 weeks ago. I decided to take the whole day off work because it’s almost 1 hour each way and the whole thing was relatively worrying.
Mr Whitfield was very nice as ever and said that he didn’t think there was any real change in the way the cavernoma was looking - good news! He said that it didn’t necessarily mean it would be always ok and that we should do repeat scans regularly. He has proposed we do a scan every couple of years which sounds sensible. He stressed again that he wouldn’t like to perform surgery on my cavernoma because it’s just too risky due to position and size and my relative quality of life means it’s not worth it. His major concern however was that my seizures and auras have been making a return and so he is going to write to Dr Honan to suggest we bring forward my appointment due in November so that we can review medication dosage/variety. I will have to include my GP in this as she’s very concerned at all times about how medications will affect potential babies!
Anyway all in all, no real change which is the best news i could have hoped for, aside from maybe the cavernoma having disappeared although i’d suspect they’d mixed my scan up with someone else’s if that had happened! haha.
A week ago today, James and I decided to cycle down to Double Locks for a drink. It was a lovely evening and we thought it would be enjoyable. The cycle there was fun and we picked a table out the front. After I went inside to get some drinks, Dave G and Dave B appeared on their bikes also. They were just locking their bikes up when it happened.
I had my first ‘public’ seizure. It was quite a serious one for me as well. I had passed out pretty quickly. James’s Blog gives an account of things here. It took a while for me to come round properly so that i wasn’t totally confused. I don’t remember much about the lady who helped us but i do remember feeling calm and not too worried because she was there talking to me. An ambulance lady was also very helpful and gave me oxygen which seemed to help me come back to reality quite quickly.
Many thanks must be extended to Dave G and Dave B. Dave G helped by looking after our bikes and Dave B was amazing by giving us a lift in his new car, back home.
As far as injury is concerned…all major injuries were prevented by wonderful people caring for me. I did however do my typical thing of gnashing either my tongue or lips. On this occasion my top teeth clamped down on my bottom lip. My bottom teeth slashed the inside of my bottom lip, now progressing into some lovely mouth ulcers and my top teeth made nice dents in the visible part of my bottom lip with the additional side effect of damaging the nerves. I haven’t really felt anything in my bottom lip since last Wednesday now but I’m hoping it will wear off and the nerves will repair themselves. I think it’s getting a little bit better. Not sure.
On Monday this week, coincidentally I had an MRI scan booked at the hospital in Plymouth. They called in the morning to say that they MRI scanner was broken and that an engineer was coming out to fix it. Thankfully we did eventually get my head scanned at 4:30pm (the original appointment was for 11:45am). I had a look at the scan on the screen and it looked to me as though the cavernoma was bigger than it used to be. It may have been my imagination or just the magnification or something. I don’t know but will no doubt hear from Mr Whitfield for an appointment relatively soon.
Then last night I had another quite major aura. It didn’t progress into a full seizure but probably would have done if James hadn’t have been with me. I could feel it starting up. Felt spaced out all of yesterday and don’t feel significantly better today. Also had a headache this morning. I feel like i need a holiday of some sort.
If you use the Epilepsy Action portal to go to your favourite online shops, the company that you purchase from will automatically donate some dosh to research and aid for people with Epilepsy. How KOO is that?! I certainly regularly use a few of the online shops on that list (Tesco being the one to get the most of my dosh!) so i will bookmark this page. Please use this as much as you can if at the moment you just go to the sites directly.
http://www.epilepsy.org.uk/mall/index.html
Amazon.co.uk
Apple Computers UK
Avon Cosmetics
Boots
Cards for Good Causes
CD WOW!
Charity Days ISP
Charity Flowers Direct
Corgi Toys
Crocus.co.uk
Currys
DFDS Seaways
Domino’s Pizza
Gatwick Express
Green Flag
John Lewis
National Express
Penguin Books
Play.com
ScreenSelect DVD Rental
SimplySwitch
Skype
Tesco.com
Thorntons Chocolates
thetrainline
Waitrose Entertaining
Which?
Yesterday morning I went to Exeter hospital for a check-up with the neurologist guy Dr Honan. It was a pretty quick appointment because i’ve actually had no seizures since i last saw him (yey!). The increase in medication must be doing the trick at the moment.
I showed him my MRI pics which he thought were quite interesting. I now have to send them back to Mr Whitefield the surgeon in Plymouth so that he can make another MRI appointment for me around May time. He thinks it’s a good idea to check for changes 1 year after initial MRIs. Sounds good to me. Hopefully Bupa will take care of it.
Sent Bupa my chiropractor bill today. Should have done it a bit earlier to be honest but didn’t get round to it. Hopefully they will add that to my excess without any bitching.
Firstly, many apologies for not keeping you all up to date on my goings-on. I feel like we haven’t had any time to breathe recently. I will go through the things that I think are news-worthy now.
Brain Update
Ages ago I went back to see Mr Whitfield the neurosurgeon. Immediately after seeing him I wrote an enormous update on how I felt and the situation. Because I was writing it at Grey Matter, I wrote it directly onto the web page. I came to submit and HORROR the page had timed out or something. The post was lost and I was incredibly upset. I couldn’t face typing it all again. I felt like an idiot because when I’m posting long posts on forums I always copy to the clipboard before submitting. If only I had taken my own advice in this instance.
Anyway back to the brain. Mr Whitfield confirmed that the abnormality in the brain is a Cavernoma (see the description in the post further down). Pics of my cavernoma can be found here
http://gallery.jamesoff.net/Rozs-Brain
As you can see, the shape of it is rather irregular (looks a bit like a splat) and stretches quite far down. Initially I thought it was in the parietal lobe but it isn’t, it’s in the frontal lobe and extends into the corpus thingy (I’ll find out the full name later…lost the bit of paper) which is a layer deeper down the brain towards the core!
In simplistic terms, as it’s all very technical, it would be pretty difficult to go delving in there. It’s a long way in, and even when you get there, the thing is a mad shape to scoop out. The reasons for looking into the possibility of removing the cavernoma are mainly to reduce the risk of haemorrhage and to reduce the occurrence of epileptic seizures. There is only a 1% chance each year of having a major haemorrhage from the cavernoma and even if you were to have one, so long as you were treated quickly it may not mean the end of life as we know it. Sometimes you can recover from it fine; sometimes it can cause serious damage like paralysis or other disabilities and obviously if it’s really bad can cause death. Not that good and obviously if something can be done, you are going to look into that. Having explored that option though, we have decided for now that it’s better to go with the 1% chance of haemorrhage.
If I was to have surgery for this cavernoma I was advised that it would be extremely tricky. They would do it if I wanted or needed it badly enough however I’m getting on with my life ok without being completely debilitated by epilepsy. Generally I would be considered as having a completely normal life with no major problems. If surgery was decided upon, I would have a 10% chance of coming out dead or severely disabled. Within my 90% chance of being ok, I could have psychological problems and even personality change due to the position in the brain. Neither James or I are keen on the chance of me coming out with a different personality – he could be stuck with someone who doesn’t like Babylon 5!!
We have been advised to carry on as normal. There’s nothing I can do or don’t do that would cause a haemorrhage to happen. If I was to hit my head, it would have to be an injury so bad it would destroy anyone’s brain to actually make a difference. In 12 months I will have another MRI to work out whether the cavernoma has changed or grown significantly. Hopefully it won’t have.
As it is to do with blood vessels in the brain, it gradually leaks little bits of blood over the years and it’s this blood which is the day to day problem. The iron in the blood that gets out irritates the surrounding healthy brain cells and causes seizures. We even think it’s possible I had a minor haemorrhage back when I was 14 that started all this off. I don’t really remember having any major seizures back before then despite having the cavernoma since birth. My mother and father couldn’t wake me up and I was extremely ill. I was rushed to hospital and it took me a few days to recover. I remember very little of the experience and since then everybody has put it down to “a really bad seizure”. But it was more than that. I hadn’t had seizures before hence my parents didn’t know what on earth was going on, and since that day I’ve had regular seizures. What I figure was that the cavernoma that had been sitting there in my brain unbeknown to us all, had a mini haemorrhage and leaked some blood into my brain. You can see the blood on the MRI pictures – it appears as dark shadows around the lighter blob which is the cavernoma itself. I presume this blood is unable to disperse so has been making a pain in the bum of itself ever since.
As this all happened 2 days before my 15th birthday, I was referred to the children’s ward. If I had been 15 I would have been put in the adults ward. For the following 2 years I was stuck with the child consultant despite being too old for him really. He kept going on about how children have seizures and I’ll grow out of it. Now hands up how many of you had seizures as a child and then grew out of it. After a bit mum got annoyed and knew he was talking out of his bum hole. Through dad’s private health insurance for the family we found an epileptologist guy in Manchester with whom we actually started to get somewhere as he diagnosed epilepsy and got me on some medication which then controlled it for a bit. Fast forward a few years to now where more investigation was done and we come to the above conclusions.
So now I carry on as normal in the knowledge that maybe one day, some time in the future, I might suffer something medical, then again I might not. I therefore don’t consider myself particularly any different from anyone else. Some people walk around day by day carrying a higher chance per year of contracting cancer or heart disease than the next person due to various reasons. The difference is, I know about mine already. I may be in more danger of having a brain haemorrhage than the next person, but does that mean I’m in any more danger overall? If I am…it would only be by a small amount.
I’m quite glad that I don’t have to have an operation, despite looking forward to wearing the Christina Aguilera Moulin Rouge wig for the wedding. The idea of someone poking around the squidgy bits of your head with sharp instruments doesn’t exactly fill you with confidence even if they’ve done it lots of times. Those grey scrapings on the guy’s scalpel could be my memory of the excellent railway train birthday cake mum made for matt when he was 5 or my ability to understand that the red man means wait and the green man means go. I definitely think that the cavernoma occupies the part of my brain that would otherwise be used for understanding Monty Python though! It’s not my fault!!
Anyway that’s enough rambling for now. I intended to update on everything but basically this has got so long I need to go and do something else now!
Cavernoma
A Cavernoma is also known as a cavernous haemangioma. It is a congenital and usually a non-hereditary cavernous vascular malformation of a vein situated in the brain or spinal cord. In contrast to the AVM (arteriovenous malformation) the blood flow in the cavernoma is low. As the walls of the cavernoma are weak, blood slowly seeps out into the surrounding tissue.
A cavernoma may vary in size from one millimetre to a couple of centimetres. Thanks to the more generalised use of magnetic imaging, cavernomas are now diagnosed more frequently than before. Due to their low blood flow these malformations are not visible on angiograms.
In Finland cavernomas occur sporadically, but in some countries cavernomas occur as a familial disease. The cavernoma gene is located in the seventh chromosome.
Cavernomas develop inconspicuously, and it is estimated that about half a percent of the population have cavernomas in their central nervous system. The majority of cavernomas are detected at the age of 20 to 40 years on the basis of the following symptoms: headache, epileptic fit, neurological deficiency such as weakness of the limbs, or generally a small, but sometimes massive, haemorrhage.
The risk of a cavernoma bleeding is about 1-2 % over the years. The haemorrhage from of a cavernoma is usually clearly smaller than for example that of an aneurysm or an arteriovenous malformation (AVM). Cavernomas situated in the brainstem or the cerebellum tend to bleed more easily and cause more damage than those found in the cerebrum.
It is advisable to have cavernomas surgically removed as a prophylactic measure. When the site of the cavernoma prevents surgery, stereotactic radiation, which causes little harm to the surrounding tissue, is an acceptable form of treatment.
Well, i should have updated a bit sooner following my appointment with the surgeon but i’ve felt quite tired so i’ve been taking a good rest.
James and I travelled to Plymouth on Wednesday for my appointment with Mr Whitfield, the neurosurgeon. Overall, i was extremely impressed with him. He was very sensitive towards my situation and helped me to feel confident and relaxed. There is no point getting in a state about these things.
Firstly he checked all of the usual things that these doctors do. He had me sit on the bed thing and waved his finger around and i was supposed to follow it with my eyes. Then he did the thing where he put his arms out to the side and told me to look straight ahead and tell him which hand he was moving…testing peripheral vision. I did it fine but his arms went out of the range of my glasses so it was fairly challenging heh! Then he held his finger out and i had to touch my nose then his finger several times as fast as i could. After that i had to hold my hands out in front and then shut my eyes and “try to keep them there”. Thankfully i passed all of these with ease. I think i would have noticed by now if i had trouble balancing and coordinating.
He then asked James and I to sit down and showed us the MRI scan that i had back in October. The wonderful blob was extremely clear and will make a nice post when i finally get a copy. It was quite obvious that the blob was pretty far in. Mr Whitfield reckoned it was 4 to 5 inches in from where he would crack open my head for surgery. Basically he said that operating on something so deep in would have serious repercusions even if the operation was successful and it’s just not really an option for us.
He said that all MRIs were contracted to a particular company who carry them out. This company have specialists who asses each MRI result first and put on it what they think is on there (if anything). In my case, this specialist thought that what was shown on my MRI was an AVM (as previously mentioned). This is why Dr Honan told me it was an AVM and referred me to Mr Whitfield.
Mr Whitfield said he had reviewd my MRI and he actually thought it was something different - a Cavernous Haemangioma, or Cavanoma for short. He said he had also shown it to his colleague and he had agreed that he thought it was a Cavanoma and not an AVM. If these two are correct and the 1st guy was wrong, then we are actually dealing with something that is not as serious as first thought. It’s still pretty serious and needs monitoring but is not as bad as an AVM which would probably need treatment.
He was perfectly confident of this diagnosis but because the 1st doctor had come to a different conclusion it was 2 against 1. That means really Mr Whitfield wins, however he would prefer to have a unanimous conclusion. Therefore i am booked in for a further MRI which will happen a week on Monday. This one will be slightly different as they will inject dye into me to help things become more clear on the final films. They didn’t do that last time because it was very general and they weren’t sure what they would find, if anything.
He described to me a procedure where an incision is made in the groin area (i think it’s right at the top of your inner thigh) and then a tube is fed into the artery. This tube is pushed all the way up the artery until it gets to the brain. Then the dye is squirted into the brain. Obviously this procedure sounds ABSOLUTELY DISGUSTING so i began to feel rather uneasy and was doing quite a bit of whincing. Luckily he concluded this description with “BUT, i don’t think we need to put you through that one this time”. I nearly stood up and exclaimed “THANK THE LORD!!” but i managed to keep some composure and just uttered “oh good, i didn’t like the sound of that one!”. It transpires that they can inject stuff into your whole blood stream through your arm. I think the injecting-directly-into-the-brain one makes things even clearer if things still aren’t clear enough on this one.
He said that if the blob is a Cavernoma, then it won’t show on this next MRI at all, however if it is an AVM it will show. That should clear up all doubt once and for all as to which it is. My brother had to have a scan where they injected dye into his blood stream when he had kidney stones. He told me that they injected 100ml of iodine! Blimey, that’s a lot. Anyway i’ve taken the whole day off work and james is coming too so it should be fine. Maybe he told me about that awful procedure so i wouldn’t be so bothered about this one hehe!
Anyway more news whenever i hear it shall follow.
I’ve just thought of another thing.
There’s a 3cm diameter ball in my brain that is completely starved of oxygen. This isn’t a foreign body, these are my brain cells that i don’t use. That’s quite a lot of brain to not be using - but the thing is, i’ve never used that bit of my brain my whole life.
I’ve managed to live a completely normal life for 24 years and never needed that part of my brain. Considering the size of the brain, a 3cm diameter lump of brain is quite a lot to not be using ever. Now i’ve heard people say that you don’t use half of your brain but apparently that’s not true. Sure you don’t use more than half of your brain at any given time, but pretty much all of the brain is regularly used so scientists say.
Something that size, i could have been a very different person if it was a millimetre in either direction.
It’s been going round and round in my mind a bit since yesterday. I’m feeling seriously uneasy about the whole thing now. I watched the video on that site - the guy poking around that person’s brain. I value my brain a lot. And it mostly works ok at the moment.
What if they decided to operate and something went wrong? Is it better to not bother and to just take my chances at life as it comes?
Then you spiral down into the ‘why me?’ state of things and when you get that far you know it’s time to switch off the light and go to sleep. It doesn’t achieve anything to start on the ‘why me?’ line of thought.
Just managed to make an appointment with Mr Whitfield in Plymouth for this Wednesday. He’s a neurosurgeon so hopefully he can recommend the best course of action.
It seems that unfortunatley they do not do the joint clinic thing privately so i’m going to keep my other appointment for now, at least until after i’ve seen him on Wednesday. I’m just so glad to get things moving a little faster.