Anyone here with an AVM??

In March of last year I had a brain haemorrhage due to an arteriovenous malformation. Long story short it's a tangle of blood vessels in the brain that form at birth which has various weak spots that can burst. They're a rare occurrence so I haven't met many people who know about them, so anyone here have one or know someone with one? (I'm 21 by the way)

[Smilerdi]

Hi

In March 2012 I too had a brain haemorrhage caused by an Arteriovenous Malformation (AVM). I was 49 . I have been incredibly fortunate as Im rehabilitating amazingly well. Having been off work for 8 months I've just started my phased return to work and it feels fantastic to have got to such a great milestone. Its not all been plain sailing, sometimes it's two steps forward and one back, but it helps to be positive, as its a miracle that I'm still alive. I'm praying that my success story continues. I would be glad to hear your progress and hope I can be some encouragement?

[Hidden in reply to Smilerdi]

Great to hear that you're doing well. I always like hearing other people's stories because no-one ever knows what an AVM is! I'm at uni slowly returning to studies, it's difficult to learn again, but I'm just seeing how it goes. Did you get operated on?

[Smilerdi in reply to Hidden]

Hi

Great to hear you are also managing to return to normal life.well done indeed. Yes I too find it more difficult to learn new things, but my long term memory appears to remain strong which is great. Yes, I've had the stereotactic surgery in October 2012, which is the non invasive type. How about you?

[Hidden in reply to Smilerdi]

Originally, they told me mine was inoperable, which was a fairly horrible 4 months. But a gamma-knife centre in Sheffield called me in and they said they could give me two sessions and that should work. I had one in August and the other in September 2012, so pretty close to yours.

[Smilerdi in reply to Hidden]

Hi again,

It's so great that you were able to be helped by the Surgery after the original less optimistic diagnosis. When i fell ill, I too was whizzed into Royal Hallamshire Hospital, Sheffield , I was originally in an unconscious state, but miracles do happen and I am happily here to tell the tale??. I returned to RHH for the Gamma knife surgery as you did. For me, the surgery has only started the process of healing the ball of tangled vessels, as it takes a period of time for them to shrivel up and die. I'm currently being called back in two years time for another cerebral angiogram to see if I'm healed, and thereby safe from any reoccurring haemorrhages. If I'm not clear, I wait another two years for another cerebral angiogram test. If not clear by year four, they do another Gamma knife surgery.

What's your future health outlook looking like?

[Alexkb81 in reply to Smilerdi]

Hi there! I’m on the waiting list for gamma knife at Sheffield for my AVM. Can you share what it was like? I am terrified and suffering regular panics etc mainly down to fear of side effects. I’d love to hear from you if you have any advice or positive messages! Thanks!

Alex xxx

[Smilerdi in reply to Alexkb81]

Hi Alex,

I have nothing but a positive message for you ! Gamma knife surgery i found was very maneagable. Yes, the initial injections in the forehead are a little painful for a minute or so, but once the frame is fitted onto your head, it’s painless really.

The surgery bit us the easiest bit, i just had to lie still for 20-30 minutes or so,,then it was all over. You can’t feel anything at all. Head frame is then removed and I was sent back to the ward for observations overnight. Think I was able to go home,the next day.

Please don’t panic at all. The staff at RHH are wonderfully helpful. If you tell them you are prone to anxiety they will help you I’m sure. I can be rather a wimp at the thought of pain, but I have not been at all traumatized by the GKS experience. I’ve had it done twice over the last 5 years too.

As for side effects.... I was very very tired for a couple of weeks so enjoyed being a couch potato🙃 .the pin hole sites from the frame were sore for a while but paracetamol did the job. Apart from that you don’t feel any different after the surgery at all.

My experience was that I also had an angiogram procedure prior to the GKS, and I always asked for a relaxant to calm my nerves for that (think I got given tamazipan), which helped. Not sure if you too will be undergoing an angiogram as well, but thought that was worth sharing too?

When’s your GKS?

Keep us posted how you get on.

Kind regards

SmilerDi

[Alexkb81 in reply to Smilerdi]

Hi there!

I am so grateful for your response. Not had date yet but will be Dec/jan time I think but I’ve opted now for general anaesthetic!!

It’s really helpful to hear your advice for afterwards. No idea how long I might need off work initially but what is terrifying me is my AVM is sat on my optic nerve so the treatment has a chance of affecting my sight; taking 1/2 of it.

I’ll keep you posted though. You just come across so many horror stories... people being crippled, long term steroids, epilepsy etc.

Hope to hear from you soon and thank you again xxx

[Smilerdi in reply to Alexkb81]

Hi Alex,

No problem, glad to be of help.

I think I was off work 2 to 3 weeks if I remember correctly (although my short term memory is pretty dire since the brain injury).

My brain haemorrhage was also near my optic nerve interestingly, and I have already lost 50% of my vision in both eyes due to the haemorrhage.

Hope all goes well iwith your op and look forward to hearing your updates.

Kind regards

SmilerDi

[Alexkb81 in reply to Smilerdi]

Thank you! And thanks for sharing your story. My new anxiety of today is brain swelling and steroids! I’m a worrier if you hadn’t noticed!

X

[r3dd13 in reply to Smilerdi]

Ive just noticed your original post was a year ago. I hope things are well with yiou

[Hidden]

Well I'm getting there, apparently because I'm young recovery should be quicker. I did lose some eyesight which was annoying.

I could use your opinion on something as you're a person who had this around the same time as me. I'm part way through a degree at the moment, I'm repeating 2nd year now. I just want to know, do you think I'm mental for going back now and not later? How would you feel about it if you were in position?

I know you might not know, but I could use your thoughts.

[Smilerdi]

I too have lost eyesight, the right peripheral vision in both eyes, so currently unable to drive unless it returns, which does prove restrictive at times. what about you? Medics tell me I've had a large bleed, which means vision unlikely to return for a minimum of 18 months, if ever.

On your question about whether to study on, or take a break,I would comment as follows.

My short term memory has been affected. whilst I'm able to return to work OK, I'm using my long term memory predominantly, which remains intact. I believe I would struggle immensely if I were , as you are, having to learn new information daily, in large quantities. I also suffer from mental fatigue,which worsens as the day goes on. Plenty of breaks to rest the brain minimise this .

Do you also suffer from mental fatigue? Does your head go ' fuzzy' sometimes?

How do you find it , when you revise, and test yourself? If you manage to retain the information, I see no reason to stop.

If you too struggle retaining information, and your recovery outlook is that you will heal quickly because o f your young age, then it may well be worth taking a year or two away from studying, whilst your brain heals. The medics told me that the majority of the brain healing takes place in the first two years.

If you too get mental fatigue, I would b e interested to know what tactics you use to minimise it?

Whats the medics opinion on the possible return of your vision?

Hope that helps

[SandraEB]

Hello,

I just found this post and I want to say how happy I am for you both and the wonderful progress you are both making. Long may it continue. It is truly wonderful to learn that 2 people have had treatment for AVM's and come out the other side doing so well.

Love and warm hugs xx

[SAMBS in reply to SandraEB]

have you had an AVM as well SandraEB?

[SandraEB in reply to SAMBS]

My son had an AVM

[r3dd13]

Hi I had a brain Haemorrhage in September 2013. I was in hospital for 6 weeks where a routine angiogram discovered my AVM ( I know now much about them now, but at the time nada!!) On December 5th 2013 the AVM was removed surgically and last week a follow up angiogram showed the operation was a total success.

I'm 40 and hoping to get back into working life in some format. Did you suffer with fatigue? My fatigue levels are borderline chronic! Financially SSP is not the best and I'm fortunate my mrs earns well.

[r3dd13]

I'm keen to get back to working life, but it also terrifies me. The haemorrhage left me with impaired left field of vision.... I feel apathy a great deal, fid/do you?

[Smilerdi]

Hi again,

Yes I'm still alive and kicking thanks!

It's 18 months since the Gamma knife surgery, so it's only another six months till I have my first 'two year ' check up back at RHHospital Sheffield. It's gone so fast I can't believe it's nearly here. The check up should take the form of another cerebral angiogram (which is entirely another story!). I'm praying that this will result in confirmation that the AVM has shrivelled up and died, and I am healed for good

[SAMBS]

I nearly fell of my seat tonight when I saw the letters AVM. Iwas 65.5 when I had my BI last March. So, old enough to everyones grandma I guess. I've seen 'AVM' in one of my medical notes - I live in France we get to keep copies of everything including brain scans. But never known what it meant. So many comments here ring bells with me, so I would like to return to this post and will note your usernames and if you don't mind will start a conversation with you all on this subject!

Its 1.35am here now, I have a 10am appointment with a Notaire so must catch up on some sleep. Good to hear you younger ones are doing well or better in terms of your recovery. Shirley x

[Cornishwaves247]

Hi, I have an AVM, I had stereotactic radio in January which I’m not sure if it has worked as I have experienced a 2nd bleed June 17 which I am still recovering! I can’t walk, have very little balance and I have distorted vision but it is all slowly improving, so I’m going in the right direction 😊 you should be fine, I’m just one of those rare cases, which nobody wants to be lol. I’m only 36 with good health so I should be fine, fingers and toes crossed 🤞 How are you now? I see ur post is from awhile ago? X

[Yorkshirelass333]

Hi I see this is quite an old post so not sure if I will get a reply, but I had a bleed in right temprol lobe in 2012 they found a large AVM which was eventually treated in 13 at Leeds by gamma knife- I've been ok off and on apart from sceizures from the bleed but wondered if anyone suffers from an annoying brain fog type thing? Like a heavy head and spaced out type feeling, along with being extremely exhausted...I do work & I have too kids so maybe it's my brain that's working overtime? I don't no but I would be interested to hear from anyone to find out if they get this and what helps xx

[dirtydancin in reply to Yorkshirelass333]

Hi, of anyone can help me , they have found this cluster of bloodvessels that have bled at some point. I was realy poorly in Nov .refered in Dec for MRI and found them. I have been suffeing, light tollerence realy bad , blured vison, , feeling nauseous, migraine headaches , exessive fatigue, spasms in my legs and arms I thought I was dying, I wouldn't be surprised if that's when it bled?.I feel like i just want to soak my head in warm water all the time . They was testing for MS , I already have ME/CFS. I get my words mixed up on occasions . I get my car pedals mixed up .I've been stopped driving . I've been refered to Salford royal . Can anyone give me any info ????

[GinaMum]

It was 8/4/2012:

Easter Sunday: at 2am-ish:

On Easter hols from night work at Adidas: on laptop in bedroom:

Finished on the Good Fri morning: after a sleep had fri night: sat morn: sat night: sun morrrrrrrrrrrn: off work: bliss!!!!!

Born on Valintines Day was my boy Warren., or Waz as he’s known., he was 28yrs old on that Easter Sunday., when he woke me up., “mam, Iv got really bad headache”.,

Odd in itself was that., within the next 15mins my boy was screaming out., “mam mam i can’t see, mam Iv gone blind, mam to there’s something wrong”., before I knew it my son was slumming at the kitchen sink being sick., it was 35mins before ambulance came (don’t blame them) odd call to them about my son with headache at Easter, don’t drink don’t do drugs 28yrs old., no falls ect ect, call back if gets bad, they sed, now the thing is I was at my most calmest Iv ever ever been in my life, odd.,

I have a daughter, Vivian,. 36yrs at the time., she has 2girls., had my Viv at 15yr., wasn’t an easy time in 75.,

Had 2 eptopics 1in 81., 1 in 83.,

Drs sed sorry you can’t have anymore children Gina,. lucky you have your daughter., !!!!!!!!!! No....

Then in 84 a miracle, really,. A Miracle., not ment to be!? Dr sed, Not ment to be here my son, Dr sed, but he found away to be, my life is full of bliss now, x il come n finish the rest soon.,

AVM:

HUGE BLEED:

BRAINSTEM:

RADIOSURGERY:

SHEFFIELD:

1YEAR 22DAYS IN HOSPITALS:

LOTS HES BEEN THROUGH:

A MIRACLE BABY:

A MIRACLE BOY:

A MIRACLE TEEN:

To carry it till he’s 28yrs.,

A MIRACLE XXX