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AVM Survivors Network

Just diagnosed


#21

hiya lulu
i was only diagnosed 3 weeks ago myself and the only information i have is what i have got from the support groups ,i have been to the gp myself today and ask for a referral to another neurologist for a second opinion,its seems the way to go ,apart from that i know nothing ,i was just told you have a large avm we can’t remove it and its not suitable for gamma knife ,go home no high blood pressure no stress ,no further appointments ,i feel in total limbo and so confused its unreal just keep bursting into tears every half an hour hope i hurry up and snap out of it ,think im driving my husband mad ,he has said he don’t want to talk about it anymore ,so its like the unsaid at the moment


#22

Hi Carol, my AVM is considered large and inoperable and was possibly not suitable for gamma knife but my angiogram results were referred to Sheffield anyway and I was suitable for gk (also known as stereotactic radio surgery) but due to the size I had to have 2 treatments 6 weeks apart. My AVM is causing hemifacial spasm which is similar to what you have but without the facial pain (Botox may be able to help with that) I have it every 12 weeks to paralyse the muscles. I have just found out that my AVM has greatly reduced in size ( 2 years since treatment) but not gone so it will be another 2 years before they assess again, it’s a long road but a 2nd opinion may be the way you should go?


#23

hi sarah ,i would love to know more about mine but its hard to get anymore info from anyone all i know is it is large and on the fright side ,the face pain is awful and is a bit like brain freeze when you’ve eaten ice cream to fast ,i am waiting now for a letter as i asked for a second opinion and told my gp i would like to see dr david porter at the frenchay hospital in bristol i think it comes down to whether he will agree to see me ,carol


#24

hi williamsmummy ,i am hoping for a second opinion and hopefully i might get a different answer ,its an awful thing to live with im so glad that you could have some treatment and will keep you in my thoughts that it might one day be completely gone ,fingers crossed ,whereabout are you ?,carol


#25

Hi Carol, in in Derby so I have been seeing a consultant for my AVM in Nottingham. I know from talking to others that nhs help and response does differ depending where you live in th UK x


#26

hi lulu
just to let you know i have been referred for a second opinion now ,which from a lot i have been hearing is a lot of the time a good thing as a few people have said they were told inoperable and have gone on to have treatment and be avm free ,not in all cases but quite a few ,to get a referral look up which dr you like the sound of then ask you gp for a referral ,it is your right to ask for one ,where are you ? hope this helps carol


#27

Thanks so much for letting me know Carol. I’m in Milton Keynes.

Chees
Lulu


#28

HI Carol. I just wondered how you are getting on and if there has been any progress with you getting another opinion? Sarah x


#29

hiya lulu
yes i have an appointment with david porter 3rd of august in bristol ,i,was really happy about it but then someone on the other support group said that they had seen him and he said he could probably get it out ,he opted for the gamma knife and said that the doctor who did it, told him it would of killed him if they tried to take it out
so its all a bit scary again now ,i spoke to someone who told me he was good not to give up ,i said i would try and would let her know but can’t remember her name lol its getting worse ,how are you ,when was yours removed ?

               carol x

#30

Hi Carol. I just wanted to check how you are doing? Are you still going to Bristol this week? I hope all is well and that the appointment goes well. Sarah x


#31

hi sarah
hope you are ok yes i am going to bristol on thursday fingers crossed but know that its only 50/50 but still got to give it a try ,its all going downhill seems since i got diagnosed with this avm nothing is going right ,the husband has left he can’t take the stress and he used to deal with my dog which is hard because he keeps escaping from the garden so had to take him to a rehoming centre today because i didn’t want him to end up getting run over because we live by a really busy road ,i feel heartbroken to say the least its the hardest thing i have ever had to do seems nothing has been going right since i got this hoping that my luck will change a bit soon lol it surely can’t get any worse ,i will keep you updated on what the out come is hope you are well take care

                   carol

#32

OMG Carol!!

We’ll be keeping our fingers crossed on Thursday for you, really! You will turn the corner! You will!

Lots of love,

Richard


#33

thanks richard ,i hope it does soon as it is unbearable at the moment but lets hope thursday might make life a bit easier ,got to get to bristol from surrey and don’t drive as the other half was going to drive me there so it will be a long day going to get the coach ,have also emailed the rehoming centre and ask them if i can go and get charlie back as someone has offered to fence of the garden for me but don’t hold out much hope as they said they don’t often let people do that so got to wait for the call in the morning its horendous knowing he is in there just want him home ,will let you all know how it went on thursday ,take care carol


#34

Good luck with Thursday and the logistics! I also hope you get the dog back… maybe not straightaway but pretty soon. I can’t really imagine. Very best wishes,

Richard


#35

hi richard
just thought i would drop you a line and let you know i got the dog back ,just cooking him a chicken lol ,got my appointment tomorrow its a long journey but will put my mind at rest one way or the other ,hope you are ok and feeling well

      love from 
    carol

#36

Fantastic!

Good luck with the journey and the appointment. I hope you get to find out useful information and get the right feeling from the doctor as to what it means and what to do / not do next.

Fingers crossed!

I’m ok. Have been doing well and feeling a bit better but a less well day today for some reason! Who knows!

Very best wishes,

Richard


#37

Hi, I’m at Sheffield Hallam hospital and on the waiting list for the " stereotactic radio surgery


#38

Carol,

How did you get on in Bristol? Hope the day went well and life is much better than it was. Sorry it has taken me so long to ask after you.

Very best wishes

Richard


#39

Sarah,

Welcome to the site! I’m not sure I’ve seen you post before. I hope you’re doing OK. Your profile information suggests you’re having quite a difficult time. Are you in hospital today?

Very best wishes,

Richard


#40

Hi Carol,

Just got onto this thread and it broke my heart hearing how hard it has all been for you recently. It is the worst thing when you are going through something like this and people you thought would be there let you down. I have had similar experiences with some “loved ones”. I am happy to hear you have had a new referral and you have your dog back. We are all in this together, it is so easy to feel alone. I also have a large AVM in my occipital lo be, grade 4. I am waiting on a angiogram so they can hopefully give the ok for embolisation since I was told I will most definently lose my right visual field if i have a craniotomoy and mines too large for GK atm. I am with UCLH in london despite being closer to St Georges because I have also heard of them being quite harsh. What they said to you was inexcusable, I dont understand how they cant remember they are talking to real people, I hope your new consultant is alot better!

I am thinking of you and sending love

Corrine xxx