Hi Everyone. Before I even get any replies I thought I had to say thank you for this site and to everyone that contributes - whenever I've been reading up on AVM's I seem to somehow end up on this site so I thought I should join.
I had an AVM found in my Left Parietal Lobe earlier last year. I should consider myself one of the lucky ones - the only reason I presented at hospital was because I had been speaking complete rubbish and had a very bad headache the day before. After months of various scans, I was eventually told they suspected I had a bleed that day.
I thought I would post up some of what I have experienced to see how this compares with others.
The first difference I spotted was that when I was originally prescribed dexamethasone, I pretty much lost my mind. The strange thing was that even though I realised I was suffering symptoms that appeared to correspond to a manic episode, in many ways, mentally I felt a lot better than before the whole problem. This rung alarm bells with me as it perfectly matched the symptoms of Bi-Polar. As soon as I realised this I went to my doctor who I don't think initially considered this seriously. Then eventually I got a referral to the local mental health team. First psych I met just seemed to argue with me but made a diagnosis of "Adjustment Disorder", the second psych actually listed to me and said he was making numerous referrals for further investigation, but no one has contacted me back about this.
I have been reading that problems such as low mood seem to be typical for AVM sufferers, are there any special buttons we can press due to our AVM's to actually get any help in a sensible timescale? (I'm in the UK).
I have also noticed I seem to be tired too much. Some days I might get up and get through a few things, while on the other hand I've even had days where I've woken up, get dressed and had breakfast just to go straight back to bed. I also seem to find that doing any kind of physical work (even just tidying up my room) often leaves me totally exhausted - I sometimes even might need a little break to have a little sleep. I had hoped these symptoms would subside, but I'm 8 months down the line and don't seem to be much better. I'm thinking if I did have a little bleed, shouldn't I have recovered by now? Or could it be down to taking Levetiracetam (Keppra) 250mg twice a day? (Seems a small dose from what I've been reading).
I had been taking the tablets but missing loads. Last time I went in I was advised to never miss them as they could be preventing seizures. I explained to the doctor I haven't had any, but he explained I may be suffering numerous seizures I am not aware of and to always take them. Anyone got any ideas of warning signs I should be looking for?
Ever since the bleed, I've noticed a feeling in my head around the location of the AVM. The doctors even once suggested it was psychosomatic, but I pointed out to them I could pinpoint the area of the problem before I was shown any scans. Sometimes it may just be gentle throbbing, sometimes it feels like quick mildly painful jolts, sometimes (especially after any form of exercise) it feels like a lot more severe throbbing, almost as if I have a pulsing balloon in my head. The other strange thing I've rarely had is a strange sensation that makes my face crunch up for a second or so - not painful but kind of like the feeling when they pump the dye in for an angiogram. I've also found stressful situations often give me a painful headache of varying levels - before this I would only get headaches if I was ill or had drunk a lot too much.
I've taken these as a sign to relax, and to stop doing anything that may trigger these feelings, and even better to totally avoid doing the same in the future if possible. Am I being too cautious or is this what other people also do? When I have had bad headaches, I've often wondered if I should be going back to hospital, but I remember when I was in hospital the first time I was waiting days for anything to happen, and I do wonder if for example I had another headache due to a small bleed, what would be the point going in hospital as they would probably admit me, MRI me in a few days, and by then the bleed would have stopped so what is the point going in?
Also I was advised to use a nicotine vape thing instead of smoking - that seems to give me headache so I stick to the traditional method. Anyone else had similar?Docs advised me strictly no alcohol. While I was crazy on the steroids I behaved myself but I seem to be going back to my old ways. Never had any issues apart from once when I felt very dizzy after approx. 3 beers. I was wondering whether I was the only person stupid enough to drink alcohol with an AVM.
I've also found a few ways my head doesn't seem quite the same: First thing I realised is my mathematical ability seems to have plummeted. I can still do basic maths with more effort than before, but for example in the past I could walk shopping round a supermarket and know the exact bill to the last penny before getting to the till. Should I accept that ability has departed - and if I want to get back there practise maths again like a school child? Or do I still have a chance of it coming back to me?
Maths was the first one. I typically have been employed solving complex technical problems e.g. corporate IT systems, data networks in modern vehicles, etc. I seem to have taken a massive step backwards - it seems like some things I have had to relearn from scratch, some things I've partially lost - e.g. I still remember the idea but don't think to apply it, or some things I've just had to walk through again to remind myself. Again, do I need to accept this is where I am now, or will these gradually sort themselves out?
The things I've unlearnt seem to be very random, but for example I've realised sometimes with my hands full I may hold a sharp knife in my mouth (sharp end in mouth) when I never would have been stupid enough to ever do before - it's almost like the part of the brain that would have stopped me from doing things so stupid hasn't given another part of my brain a little slap to remind me to behave. I have admitted to myself I'm not going to be much good at real work until I'm sorted. However I was thinking to try and do as much as I can to find my new limitations. Things like that though make me wonder if maybe I should just try and do nothing (as far as possible) until I'm fixed, as God knows what else I will be stupid enough to do wrong.
I've also noticed a higher tendency to get words and syllables jumbled up. Generally I get through the day fine, but sometimes I really get stuck for random words. Rarely I mispronounce syllables (funny thing is when I get one wrong, I seem to repeat it wrong until that conversation is over), and the strangest one I've noticed is mixing up letters when typing that could sound similar (e.g. c and s). I've been reading for some people after strokes this gradually gets worse, should I be asking for help on this, or should I be happy that I have escaped 99% intact?
Another strange thing is I noticed years ago my eyesight didn't seem right. I had an eyesight test, was given a very slightly changed prescription but it didn't fix the problem. I carried on like that for many years but after the AVM was found I had another eyesight test. This time I informed him of my AVM and the failure of the previous eyesight to correct my vision, but he still came up with the exact same prescription. To me it seems like my eyes aren't quite focusing at the same point. If I close either eye I can see fine, but one eye seems to always be focused a little closer than the other one. The docs have asked me a few times about double vision so I have explained this, they've done basic checks then carried on to the next thing. My gut feeling says I need to get optician to keep redoing my eye test until we get a result I am happy with, but considering AVM's can have similar effects should I be going back to my optician or neurosurgeon?
I've also noticed when it is very quiet, I sometimes hear a high frequency noise. (maybe around 8-12khz?). It doesn't pulse at all, just randomly comes and goes. I've seen some people with AVM's talk about tinnitus, but I have a feeling if this was AVM related, I would hear the pulse of my heart beat (like I do when my head throbs). Part of me thinks this is so minor I shouldn't even worry but I thought I would see opinions of others.
Then my next questions lead me on to treatment:
I've read the three options (or 4 if treatment isn't possible).
After treatment should I expect any of the symptoms I've mentioned to subside (especially - could I expect to regain my problem solving skills + maths), or is it more likely they could even get worse due to the treatment? If they are likely to get worse, will it be a one time hit, or should I expect progressive degeneration afterwards as well?
I've also read that research on AVM's is quite limited as they are very rare conditions, so we don't have the same amount of data available as for example a lot of cancers. This makes me wonder if our treatments are at the cutting edge of science, and therefore our treatments are a lot more experimental than other procedures that have been refined over a long period. Is it advisable to seek a second opinion? Are these available on the NHS? And if I did seek one, would this annoy my current neurosurgeon?
Final questions (if anyone is still reading), how long have people had to wait to get approval to drive again from their neurosurgeons?
Has anyone had any luck at claiming ESA? I've only just put in a claim after running out of money. I have a feeling as I can reach above my head and walk 100m I won't be entitled to ESA, but my sicknote says I shouldn't be doing any form of work so I won't be entitled to JSA either. Any ideas how this is supposed to work?