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AVM Survivors Network

Just diagnosed


#1

hi ,i am new to this site have been diagnosed with a large avm on the right side of my brain been told it is inoperable ,would like to hear from anyone else who was told this ,so far have only had one opinion from neurologist at st georges hospital london


#2

Hi carolb01. I had a fairly large one in my left frontal lobe. My doctor told me that it would be very dangerous to remove it without running the risk of doing permanent damage. But he also gave me options. He did 2 embolization treatments first, followed by 2 radiation treatments. But the radiation did not get the whole treatment area. It grew two more feeders. So a repeat embolization and radiation treatment in 2015. I get to have another angio in December of this year to check its progress. Did your doctor give you any other treatment plans? My physician has told me that if it were to grow more feeders this time that it would be small enough to remove without any problems.


#3

Hi Carolb01!

I’m Lorna, and I do have an AVM very deep in my left occipital lobe… Well, actually 2… 1 right behind the other. It started in March 2016 when I had a seizure while driving and I hit two cars head on. Fortunately no one was hurt, but the hospital they took me to was unfamiliar with complicated brain issues. I was diagnosed as having a seizure due to not taking antidepressant medication. Exactly 10 days later my AVM ruptured and I was consequently brought to a more advanced Research Hospital. They were quick to diagnose as an AVM. It was considered Grade 4 because it was 2- 3 centimeters long( both were laying next to each other), they were eloquent ( close to very important functions in the brain), they had drainage and one had ruptured. They are in between my vision and language…too deep to surgically remove.
I have since had two successful embolization’s, and I will be having stereotactic radiation hopefully within the next few weeks.
After this I have to wait about a year to find out whether or not it is considered “obliterated”.
I consider myself blessed that I can still talk and walk although I am completely numb on my right side, and talking was difficult at first. I definitely have some memory loss, and a little spot of blurred vision on the right side.
If you didn’t know me you wouldn’t know by looking at me but until they tell me it’s completely obliterated I consider myself on the road to recovery, or in the process of being “cured”.
I think it’s very important to find capable knowledgeable neurologists/neurosurgeons who are discussing the problems with you in the clear understandable way. Ask as many questionsS as you can think of, they’re all good questions . The one thing that has really brought me through this the best has been finding my strength in God. Although you may not believe the way I do, I do believe it’s important for you to draw strength from some sort of a higher power or meditation and for me that’s God.
I am 49, and my daughter is 10 and my son is 13. It’s super important for me to be healthy. Although I am on very heavy dose of anti-seizure medication which makes me tired, I won’t complain as the alternatives could certainly be worse. I don’t have as much money as I did before this, but because I can’t work as much the upside is I get to spend a lot more time watching my daughter do gymnastics and my son play baseball. For that I am eternally grateful. There is always an upside☀


#4

Hi Melissa thanks for the reply glad to hear it’s working for you ,no he said they can’t do anything so no treatment plan just anti seizure medication,didn’t even tell me the grade or anything just told me they can’t do anything to watch my blood pressure and stress levels and sent me home no follow up appointments or anything,it’s hard to deal with at the moment but I suppose I will get used to it ,carol


#5

Get another opinion for sure. Do not give up. Another doctor may have a completely different opinion!


#6

Hi Carol, I did a search for you for other members that have inoperable AVM’s Here And hope it helps, I guess when its inoperable you have to then look to minimize the risk of a bleed in everyday life, Your doctor should be able to tell you what not to do for sure (like no heavy lifting etc ) Thanks

Martin.


#7

Contact Dr. Razack in Tampa, St. Petersburg FL here is the link to his website. He injected onyx medical glue into two aneurysms I had and saved my life.
http://www.aneurysmdoctor.com/


#8

Carol,

If you do want a second opinion, ask St George’s for copies of the reports and scans, so that getting a second opinion without having to have re-scans is possible. As Heidi (@Gluehead) says, getting an assessment from somewhere, even as far as the USA is possible. However, as Martin indicates, there are others who have not been able to treat their AVM and “manage” it instead.

Whatever happens, we’re here to support you,

Richard


#9

HI Carol
Who did you see at St Georges? Did they just do an MRI or angiogram etc? I have an AVM approx. 6cm on the right side…it has bled 3 times but I had 4 embolisations at St Georges (Dr Clifton) and 3 lots of GAMMAKNIFE in Sheffield (Mr Rowe) so far as it was not possible to surgically remove the AVM. It is still there but much smaller than b4. My consultant at St G was Henry Marsh but I believe he may have retired now. Have they said that embolisations are a definite no go too?


#10

hi sarah

i saw dr papadopaulos ,i have seen him twice once when referred by the mri department he then sent me for a cat scan with the dye ,i had one more appointment after that ,which i had to hassle them for 5 weeks after the cat scan ,at that appointment which lasted ten minutes he said its a large avm on the right side ,its not operable or suitable for radiation ,he never mentioned emobolisations he just said theres nothing else i can do no point in coming to see me again,i don’t know what grade it is or anything ,so i think thats why im so up in the air ,i asked him what that means he just said if it goes you will either be paralysed or dead and that was it ,its awful thats why i been trying to get more info

carol


#11

Hi Carol.
I’m sorry. That sounds awful and totally unacceptable. I know consultants can be blunt and very detached but the way you have been treated is not acceptable.
How did you find out you had an AVM? Were you having problems or was it picked up by accident? Have you had an angiogram (they insert a tube through ur groin and take images of the AVM? )
I would ask for copies of your scans and then either email them with a list of questions such as exact location and size of AVM etc or seek another opinion…or both. What area do you live in? Have you seen them privately or on NHS? I would be happy to talk to you on the phone if it would help at all…it can be very daunting when you are first diagnosed. X


#12

hi sarah

thanks for the reply ,i was seen at st georges london,they picked it up on a mri as i had been telling them for about 15 years that i was having what i called funny turns ,but had started getting a lot of face pain ,which the neurologist at croydon diagnosed as trigeminal neuralgia so sent me for a scan ,i have asked my gp to send me for a second opinion i think she is sending me to kings at camberwell ,i did tell the guy at st georges in the beginning the i had a previous operation for something else which involved the illiac arteries in my groin so was not sure about the angiogram he never mentioned it again as i have only seen him twice ,i have since spoken to the doctor at guys who did the operation and he said it would be fine but dr papodoupolus says he don’t need to see me again ,so will have to wait untill june when i see neurologist at croydon for my funny turns which turns out to be epilepsy brought on by the avm

its all so complicated and trying to see anyone on the nhs is almost impossible ,basically all i have been told is its a large avm on the right we can’t remove it,so watch your stress levels and blood pressure and thats it

its so scary i feel like a time bomb ,the worst thing is my husband is like ,you’ll be fine don’t worry ,i don’t think they understand the horrible feeling it give’s you everyday

sorry to chew your ears off lol but it’s nice to talk to someone that knows how i feel

                     thank you so much

                       carol

#13

HI Carol
I completely understand. Its a horrible situation to be in and only natural that you are going to worry. You are generally born with an AVM (mine first bled when I was 37ish). I was always told that if its going to bleed it will bleed…I was not told to avoid anything specific although with all 3 of my bleeds I was pretty stressed beforehand. I think its awful that he told you you would be paralysed or dead if it bleeds…I can’t comment on your case as I’m not a doctor but many people have bleeds and recover and regardless of what his opinion is it really doesn’t help to be spoken to in that way when you are feeling vulnerable. I think its really important you get another opinion. In the meantime there is a www.brainandspine.org.uk I called them and you can speak to a nurse…i found it really helpful to talk to them about how I was feeling so it may be worth calling them. As I said I’m also happy to talk to you anytime if you want to talk so someone else who has an AVM. With regards to your husband, I wonder if that’s a man thing as mine is the same…prob trying to get you not to worry. xx


#14

Carol,

I think getting your GP to refer you for a different opinion – if Papadopoulos is a neuro, perhaps to an interventional radiologist instead – to get a different opinion is a good idea. I found initially that my GP didn’t know anything about an AVM but later was quite keen to help me out and go stir the hospital up.

Dont feel you should give up. Equally, do keep your blood pressure in a good place and you’ll be looking after yourself. If keeping BP good is the one thing to help us out, to take the pressure off / reduce our risk, we can at least do that. I’ve spent a few months feeling better for managing my BP.

Good luck, and keep us posted! We’re all with you!

Richard


#15

hi richard

thanks for the reply ,i have asked my gp for a referral for a second opinion ,although they do look pretty blank hen you ask them any questions ,i am also applying to st georges for my medical records ,who knows the answer might be the same from the next doctor but i do believe that i must try ,i am trying to keep on top of my blood pressure ,which is difficult in a house full of teenagers lol but i won’t give

thank you for the advice it has all been so helpful as trying to get any information about these avm’s from anywhere is not easy

                                                       regards

                                carol thompson

#16

Dear Carol

I saw the same consultant as you at St George’s and he told me mine was so small he couldn’t operate. However i went for a second opinion and he said he can attempt to a literate my AVM but as mine was where my facial nerve and hearing nerve was I could have a facial palsy. However, I had the surgery and he said it was too dangerous to carry on the surgery. I lost my hearing for good in my left ear and he damaged my vestibular nerve which controls our balance. I’m nine weeks in now and slowly my balance is getting better. In my opinion I will never let anyone touch my head ever again u less it bleeds and I have no choice

Best wishes
Val


#17

hi valerie
sorry to hear that its so awful,the problem i’m having is lots of face pain ,headaches ,neck pain and a cramp like feeling in my head ,
with double vision .so would really love that second opinion ,i suppose its 50/50 if they even could do anything ,i feel its worth a try for me either
where did you go for your second opinion ?
do you expect to regain your balance ? i truly hope so

                                                          carol

#18

Hi Carol if you are getting double vision then this means that the AVM has increased the pressure in your brain and it is affecting your Optic nerve.You should ask your doctor for a referral to an ophthalmologist so the can monitor your eyes to try and reduce any damage to your vision.
I am on Diamox which is meant to help reduce the pressure in your brain. I have been on it for quite a while now. I originally went to the hospital with a severe headache that was caused by a blood clot and once that cleared up I was diagnosed with a rural AV fistula. The doctors that operated on the fistula said that it was more than likely an AVM that had been there from birth as I have always suffered from migraines and other severe headaches.
I did have double vision for a while after the blood clot but it eventually went back to normal. By the time I was operated on for the fistula my left jugular vein was to badly damaged to repair so I have been left with raised intercraniel pressure so I see an ophthalmologist every 6 months and I have stayed on Diamox. So far there is no sign of permanent damage to my eyes.

I would also definitely get a second opinion as some doctors are more experienced in treating AVMs than others.

Good luck, I hope you find someone who can help you.


#19

Hi Carol
I also still get pain in my face, head and neck. I believe mine is in area that can affect sight and poss movement. I wonder if yours is in same area? I had some initial issues with sight in left part of both eyes after first bleed but recovered well. Also have some intermittent loss of feeling in left side but poss due to volume of treatment I’ve had. Overall v lucky after 3 bleeds. Keep us posted with how the second opinion goes. Will be thinking of you and really hope you have more positive news with a different consultant x


#20

Hi Carol. Welcome to the site. I’m sorry to hear about your AVM. However do try to stay positive. For us AVM’ers the journey is not easy. But things could always be worse. My own AVM is in my Cerebellum and is large as well. It is also inoperable and in fact untreatable without risk of deficit. This is largely due to its location. However I have been aware of it for a long time now and so far have been lucky enough to avoid hemorrhage and serious deficit. I am under John Radcliffe Hospital in Oxford and trust them implicitly. But I have to admit I have never sought a second opinion. I’m not even sure how you go about doing this. Would you know please? Thanks Lulu