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Hi All - Erin. AVM Removed/SAH on 9th June 2010


Erin
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Hello All,I'm going to detail my story for the first time. I hope this will encourage some of you to share any imilar xperiences with me. I also hope that hearing my story may help somone else in a similar position.

I knew my life was going to change forever on Wednesday 9th June 2010. I didnt quite realise how, or how seriously.

I've suffered fom headaches for a long time, as long as I can remember in fact. When I was pregnant with my daughter 6 years ago I noticed a mild whooshing noise in my right ear but thought nothing of it - how stupid that was! It wasn't until I experienced severe strss at work late last year that I found it got much worse, and louder. The headaches also became more severe. I went to my GP who referred me to an ent consultant. Off I went, and after he did a few ear/hearing tests he said he thought it was probably pulsatile tinnitus. Because - and ony because - I was private he sent me for an MRI, just to confim. Had it been NHS this would not of happened.

I had the mri a few days later and returned the next day for the results. Looking back, the radiologist and nurse who did the mri had a strange, concerned look on their faces that day; no doubt feeling sorry for me when they discovered the truth bhind the whooshing noise.

The ent consultant held up my scan to me and told me I had a large AVM. He sent me home with no explanation and my scans. That was possibly one of the worst days of my life. 11 December 2009. My husband Alan was out, I had to pick the kids up from school then turned to the internet for answers. Th prognosis idn't look good. I was terrified, and rightly so, and I'll never forgive hat ent cons. for doing that to me in such an abrupt way.

The next few days were spent in tears as I faced up the reality of my condition, but I had to wait another 6 weeks for information and a consultation with a proffesor ho specalised in avm's.

In Janury this year I went to the avm clinic at newcatle general, held once a month.

There I saw Professor Mendelow who explained my condition to me. I had a very large avm, a grade 4 (on a scale of 1-5, 5 being the worst). Great, mine would be one of the worse. He showed me his stats and told me my chances, explained the risks etc and said it had to be removed, if it stayed in it would most certainly hamhorage.

I then began to have a series of embolisations to stem the blod flow and reduce the size of the avm. I had one a month for next four months. These went well and finally I had a craniotomy on that fateful day, 9th June 2010. To say I was terrified doesn't even come close. I was told my main risks were hemanopia, or risk to life, limb and mind. Very broad scope that but I signed the consent and went in for what should of been an 8 hour op. Bad enough in its own right but, things didn't go to plan. Why does that not surprise me?

I suffered a massive haemhorrage uring the op, lost 15 pints of blood and it went on for 14 hours, not 8.

I was sent to ICU where my husband sat probably dumbfounded thinking, erm, I didn't sign up for this. I then went to HDU where a few days later I came round fully, and was immediately made aware of my plight. I head them saying amid my haze of pain and confusion I had left side paralysis and that brought me back in the real world sharpish.

As I became more awake I discovered the reality and what a shock that was. I'd had an SAH during the op which had left me with left side weakness. I couldn't move it at all.

I was traumatised. I went onto a normal ward and began the recovery process. Physios told my husbands it would take up to six months to regain full movement. However a few weeks later theywere pleased with my progress - I'd been able to move my leg and arm and hand a little bit. I was transfered 4 weeks after the op to a neuro rehab hospital, which is from where I now type - very poorly, apologies.

It's nearly 3 months since the op that changed my life forever. I'm doing well though, I have movement in my left side now and am now in the process of rebuilding and gaining strength in my left side. I have about another 2/3 months left in rehab. It's hard, learning to accept whats hppened is difficult. Worst part is mising my children (aged 8 and 5) and my husband. I see them every day as its near to home and weve all learnt to adapt to this situation and take each day as it comes as best we can. I do get down but mostly worried about whats i'm left with but I just try and focus on the day I get home permanently.

The avm was successfully removed but I still need a folow up angio in January to be sure. If any is left I'd then need gamma knife. Please let it still be gone!

My op meant I had an SAH. Its not the avm why im still here doing rehab - its the sah. someting i didn't even know could happen. Thats hard to take.

The sah gave me left sided weakness which I now have to rbuild. I also have strange bright white 'blob' on my left side vision. Nothing they can do about this. They said it may go, it may not. Its very annoying but doesn't stop me seeing, just have a bright white light there all the time. I also have muffled heaing, upon hearing music. This again is very annoying but doesn't stop me hearing. Nothing they can do, again, symptomatic of haem.

staying away from my family in rehab for months is very difficult but im slowly getting there. I am walking with physios and hopefully will be walking on my own by discharge - November time. My arm and hand both have movement but presently I can only include them in very few tasks. I worry terribly about this. On bad days I get scared I'l never be able to use them properly again. On good days I can see it improving and that I'll have them back in use to some degree in a few months.

I'll leave it there for now - one handed typing isn't fun! Again, apologies for missing letters out etc.

I'd love anyone to get in touch with advice on any of this. Namely, have any of you suffered with the left side weakness, or the impaired vision, and also the muffled hearing (music only?!) and how have/did you overcome this? Any advice greatly appreciated. I'll also be happy to offer any advice on my experience if needed by anyone in a similar situation.

Thanks for taking the time to read my story.

Erin

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Hello Erin and welcome! :-D

Blimey, what a tough ride you've had so far!

Well, I had a third nerve palsy to my right eye and so my eyesight is still out of sync and have double vision still to the extremities and it's always worse if I'm tired and have a bad patch of fatigue. It has got better over the years, but the first 12 months were the absolute pits trying to cope with it ... The medics told me that it would be back to normal after about 6 weeks! Don't think that they have a clue sometimes! I also had bad dizziness and balance problems, combined with eyesight, it was probably the worse thing for me to put up with. Mind you, it's surprising what I can do now with just my sense of touch and with my eyes shut!:lol:

I had temporary paralysis on my left hand side and unfortunately that side still remains weak and my right hand side being stronger, it tends to pull me over a little and I veer to that side when I'm walking. I had physio to help for a little while. Again, I think that you learn to adapt over time and the more you work on it, the better it all gets.

My main problem still, is when I have to use steps or get up on a chair ... I'm okay if I've got something to hold on to that helps to pull me up, but it's when there's nothing and you've got to rely on your leg power. We have a shower in the bath, so I have to remember to use the right leg first to get over ... the handrail that my husband put up, when I first came out of hospital, is still used! Thankfully, the one in the loo went a long time ago, but looking back I couldn't even get myself off the toilet, so yes, things do better and better! I also couldn't walk far when I left hospital, so had to use a wheelchair for a while ... which I hated, but it was better to be able to get out, rather than going stir crazy inside four walls! I still can't walk as far as I would like, but I can do enough for normal day to day living, which is the main thing! :-D

I also have pulsatile tinnitus, which is still under investigation, as I was told that I have a small bulge in the blood vessel on the opposite side of the coiled aneurysm. I get a lot of what I call, changes of frequency in my ears ..... like white noise. It still scares the pants off me, as that's what happened when the brain haem started ... The way that I deal with it, is to count slowly to ten and if nothing has happened by that stage, I know that I'm going to be okay! :lol:

Erin, your typing is great, so don't worry! :-D Hope that you find the support here useful .... I know that chatting to others and seeing that they were experiencing the same, helped to "normalise" the weird things that I was experiencing, especially when the medics couldn't come up with an answer, which in my case was quite often! xx

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Hi Erin

You are doing amazingly well typing one handed! At 3 months post SAH I couldn't even sit at the computer wihout getting a headache, it took me to 5 months post SAH to this and another 3 monhs jus to find this site!

I suffered paralysis of my left shoulder and arm during the coiling procedure. I was awake for the first 2 hours and asleep for the remaining 6. I was told the next day hat they had no idea what caused the paralysis but at my appointment in July this year I was told i was a brain stem stroke. At home I couldn't open doors with my left hand (I'm left handed), I was like a blind person trying to grab the door handle, my arm was all over the place! I dropped everything with that hand and my arm would judder out of control! But I was told to keep trying to do the things that I couldn't or had difficulty doing. Then I had 4 months of physio to try and build up the muscles in my shoulder.

One excersise - on the floor on all fours, lift my right arm and take the weight on my left and I would fall over in pain! The messages from my brain go lost somewhere! But by repeaing things over and over again, my brain relearned the route for the messages. Although I can now sort of do this excersise and I still cannot lift my right arm and left leg at the same time, it's too confusing for my brain!

That's the best advice I can offer, keep doing the excersises they give you and let time be the best healer. You've been through such a lot and are still very early in your recovery yet you are dong so well!

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Hi Erin

Glad you have been able to post your story. I hope there are others who have suffered AVM who may be able to provide more info for you.

I suffered SAH 11th Dec 09, was coiled 18th Dec and discharged 24th Dec. I didn’t know for a few months that I had suffered severe vasospasm during my op which resulted in initial left-sided weakness, which appeared to have gone prior to discharge…however, when I finally made it back to the gym a few months ago I could feel that my left arm was weaker than my right, although only slightly.

I stayed off work for 12 weeks in total, and then commenced a phased return for a couple of months in the end, now back full-time. Yes I get tired, and there doesn’t seem enough hours in the day or energy in my body to do all I want to do, but I know I have been lucky.

That is great that your family are close enough to rehab to see you every day. That must be a great help for you.

I am glad you are doing so well after all you have been through, and wish you good luck with your continued recovery.

Kel x

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Hi again,

I did post on your other thread but on reading your story I'm quite moved that you had to endure all that! I wish I could offer you some useful advice but I didn't suffer any weakness, despite having severe vasospasm, so I can only imagine what problems it all entails. I should think the white blob of light that you are experiencing in your vision is very annoying and not very helpful that they can't tell you whether it will go or not. I have experienced a lot of zig-zag flashing lights in my vision since sah and although it is not there all the time I do find it frustrating and inconvenient when it does appear - like it did last Saturday morning when it woke me up at 4am! So I can empathise to a certain degree on that one.

I'm glad you are near enough to see your family regularly and hope the day soon arrives that you are able to join them at home.

Best wishes,

Sarah

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Hi Erin and WOW

What a really hard time you've been through - to be here and typing (especially one handed) takes real strength and determination - with those two things hand in hand you're bound to make good progress with recovery - (my husband puts mine down to stubborness:shocked:)

You're doing brilliantly well Erin and it's really good to see you on here (have replied to your other post too).

I'm four years in from my SAH and still have weakness. I can walk and move etc but I find that sometimes my leg feels like its giving way and my arm isn't as strong as it used to be.

Keep up the good work Erin, but make sure you're resting too.

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Hello Erin and Welcome to BTG. It's great to finally hear from you, because we've all heard so much about you.

I am so sorry that you have been through so much. You possess an amazing spirit and I am sure this will serve you well. You have a very intelligent handle on the event, despite the trauma it brought.

It must be very difficult to be away from your family but how fortunate you are living close to home. That said, I am sure that being 'close to home' is no substitute to being at home.

Recovery is often a frustrating process because we want to be well immediately; but the brain heals at its own rate and we must give it time to come round - it doesn't like being pushed!

We often get tired which maybe is nature's way of telling us we are doing too much. Rest is an important part of recovery and one which is often over looked. Be easy on yourself and your brain will start to play ball again.

I hope that next few days will bring improvements, but don't expect recovery to always be a steady climb upwards. There are sometimes setbacks and some days when things just seem the same. This is all normal. Often we don't see improvements in ourselves, but each day is a step in the right direction. Some days I'm happy to be facing the right direction, let alone stepping!

Keep in touch. Look forward to getting to know you better.

Lynne

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to all of you who hav replied to my postings, your messges are always appreciated. Its often not until I hear someone else telling me things that I already know (!!) that I realise fully what I've been through and the progresses i've made so far. I think sometimes i'm just caught up in the process of regaining the strength on my left side so forget other important parts, like the fatigue. x

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Hi Erin you are doing amazingly well to be typing all this now espeially one handed! you've been though such a lot it's hard to take it all on board & personally i have found the emotional recovery the hardest part.

Although my anni didn't actually burst I had vasospasms during the op & hd some left sided weakness/numbness which did go eventaully with the triple H therapy (gelofusin) but I find my left leg isn't as responsive & lacks fine motor control (when putting my knickers on I can't guide the leg into the hole I have to put the hole over my leg). I also have problems with getting out of a chair (especailly a soft chair) or off the floor & need to go onto my knees first & then haul myself up. AS for the eyesight I too had 3rd nerve palsy which is gradually getting better alhtough they are not sure it will recover completely.

It is def a case of a step at a time & it's a journey into the unknown for the medics too as everyone recovers so differntly. I have learnt to rest now when I need to & find that being anywhere for 4 hours or more is enough for me & I need to be somewhere quiet &calming.

I hope things contiue to get better for you, with your strength & determination I am sure they will

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Just thought that I would pop in and say "Hi" ...

Erin, I'm sure that you will get there ...... I remember in the first 3 months or so marking down, "Good day" on my calendar and didn't have another good day for the next few months or so and was totally gutted! .... so I decided not to bother in the future and just go from day to day! Think that I still adapt the same principle to a degree, but life has definitely got better and better!...:wink:

If you get the chance and able to do a bit of reading, then have a read of Alison Wertheimer's book "A Dented Image" ... If you want to borrow my copy, then please send me a PM.

Hope that all is okay with you .... xx

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Hi erin wecome to btg yes i hear as if i'm under water sometimes not very often anymore and i also had left side weakness athough i never noticed until i had someain in my back, the muscles down my left side had shrunk but had physio and they are fine now. Anyway it does get better with time . Jess.xxx

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thanks karen i have th book, only read few bits though as realy im more interested in the weakness - thats impacted me the greatest - and there didnt seem to be much about that in the book??

hi gill and thanks - could you - or anyone - tell me more about 3rd nerve palsy, first i've heard of it is here and my eyesight probs weren't referred to as this by any dr's, but i'd like to know more about it.

thanks, Erin.

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Hi erin

from what the cons told me last week there are a group of nerves that control your eye movement etc. the 3rd nerve controls the dilation ofyour pupil & movement to the centre (each muscle only move in one direction so the 6th nerve pulls your eye to the right & the 3rd nerve pulls in the opposite direction keeping the eye central). As my anni squished the 3rd nerve my pupil was massively dilated & didn't respond to any light, I culdn't open the lid either or move the eye to the middle or top to bottom. My right eye was basically pointing in a completely different direction from my left resulting in double vision.

My eye will now move right to left & my lid opens almost fully but my pupil is still dilated & I cna't move my eye up & down so still have double vision in some planes.

I guess you found a lot of this out on your google?

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Hi Erin,difficult time for you but it gets easier & actually does get better. Although if someone had told me that at your stage I would have grumbled not quick enough for me!

( Infact I would have cursed,not just grumbled!). But we on this site are all living proof that it gets better with time & adjustment. Go easy on yourself don't try to rush things - easer said than done! One thing I learned is that time & patience are a huge part of our recovery. Trust in yourself that you have the courage & strength to do what ever it takes to get through this. Your doing remarkably well posting here and your typing is absolutely fine too. I hope you get the answers you need there is always someone here who can offer support /advise. I send my best wishes and look forward to hearing your progress.

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Erin,

I have a big eyesight issue too. I have a fairly large chunk missing from the visual field in both my eyes. I didn't actually realise it myself till I was almost due to be released from hospital. My family tell me the staff told them the day after my op though.

I think I was unaware of it because I still had the rest of the vision there. I did make a lot of silly mistakes though, saying things like " someones cut that car in half!". I had the double vision for around 5 months. And as Gill said my eyes both looked in different directions. Fortunately that has straightened up now. ( makes me a wee bit less geeky looking:biggrin:)

The doctors said the name for the blind area condition is Quadrantanopia.I'm told it will not improve and I will just have to wait till my brain learns to compensate for it.

I do see slight progress with that but it's a long slow journey.

Hope this will be useful to you. Keep us updated and good luck.

Love Sally xxx

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Hi Erin. Wow! What a story! You are doing amazingly well though, so keep smiling :D

I only learned about AVMs when I was researching my SAH - mine was an aneurysm just above the right eye. I consider myself extremely lucky because I didn't really have any physical problems after the SAH apart from general weakness, dizziness, headaches, that kind of thing. I did have a bit of double vision but that has thankfully settled. My problems are all cognitive, and are quite subtle now so it's hard for people to understand that I'm not back to "normal" nearly 7 months on.

Take it easy! My brother-in-law was in a rehab place for something like a year when the children were little (he had Guillain Barré Syndrome and was paralysed), and it was really tough on all the family, so I can imagine what you are going through.

Keep it up :)

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