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AVM Survivors Network

Scared about alot especially living and dealing

I have a 4 3/4 cm AVM in my left frontal lobe, (which of course causes migrains
that prety much kill me blocks my spinal fluid so my back kills me and neck all
the time, dizziness, confusion,siezures i loose my speech and I get numbness in
right side of body including face) so the original plan from neurosurgeon was 4
embolizations then cyberknife then surgery b/c in beginning before the rest it was inoperable. So we started. I had the first two embo's when they went in for
the third they told me when I woke up eventually that they found two main
arteries attached to it and alot of viens around them, and in other areas they
couldn't get to now b/c of it and when they were in there a brain bleed started
they had to stop and I almost had an anurysm. So instead of getting how much
they wanted to out of 100% of thier expectations they only had gotten 30% and
they wouldn't go back in . and not only that even after the ck he refuses now to
operate at all he says it is way to dangerous now.
How can you have a plan and it change so much from one embolization did it
scare him that much. He said also he didn't relize exactly how far in it was and
the exact parts of the brain it was touching, but he had already saw the mri's?
My next question has anyone decided to just be freaked out that with the doc
almost causing them to have an anurysm on the table I know it wasn't his fault but
truth is I could have died that quick not to mention now I walkwith a limp b/c they went in the same artery so many times 4 including my angio in beginnin that theere is pain from knee up and dcs can't fix it they said thetere is blood stuck up in there or there might be nere damage which of course they can't fix. I just feel like nothing has gone right evry procedure there has been issues so should I countinue b/c every part of me says no way but evryone around me is pushing me.I am getting more and more scared to start ck next
month your whole life they tell you stay away from radiation now I am getting it
shot in my head the most imp. part f my brain and if medicine is just a practice do I want practice on my
brain? How many avm's has it not worked on or made worse i heard it was made for tumors not avm's they are totally different. is that true did anyone else hear or been told that by thier doc.You have been through this I was born with it but just found out I was in
January? And if I was born with it in the most important part of my brain one
that impacts my personality and it is the only thing in my life I have always
had it might sound crazy and have caused me pain and confusion but it is part
of me if it is obliterated will it change
who I am. I am most scared of that?well & everything above. And if they can't or I am to scared to go
through wth it will it kill me? Right now my doc says I have a 20% chance of
dying everyday b/c of the arteries he found.And it gets bigger everyday time passes. I KNOW IT IS ALOT OF QUESTIONS BUT
IT IS MY FIRST TIME FEELING COMFORTABLE ENOUGH TO ASK EVERYTHING ON MY MIND SO
IF YOU GUYS COULD JUMP IN AND HELP WITH SOME IF YOU KNOW WHY I FEEL THE WAY I DO
PLEASE HELP ME B/C I FEEL LIKE JUST QUITTING ON ALL THE TREATMENT ESPESIALLY THE
RADIATION I DON'T WANT I AM SCARED OF IT IT MIGHT CHANGE ME IF IT WORKS AND IF
IT DOSEN'T I MIGHT DIE. WHAT DO I DO. HELP. It is easy for the docs and my family to give me advice they don't know the confusion and pain I go through everyday BUT YOU GUYS DO I NEED YOU AND AM GLAD I FOUND ALL OF YOU>

Lindsey, When my AVM was diagnosed, the first thing I did was see a home town neuro doc, who really didn't know much about AVM's. So I went on my computer and found the Best neurosurgen in my area and made in appt. I am a true believer in getting second, third or even forth opinions when it comes to saving our life. For me, I had to find a neurosurgen that I had true faith in to make my decision. It is your decision, Lindsey! Hang in there and Stay Strong and Stay Positive!

I think you should get a second opinion. If you are not comfortable with what this dr. says, see what another or several other neurosurgeons, that have lots of experience with AVM's, have to say. I don't know where you are from, but my son had an excellent team of neurologists and neurosurgeons. They are located in st. louis mo. Typically there are teams of them that work on AVM's.
I hope things start looking up for you soon!!

thank you for answering my question see my problem is in baltimore md there are only 2 hosp that do avm so options are limited i guess unless i go out of state but i guess i could go to the other hospital the only reason i havn't is b/c the hosp i am going to is supposed to be the best out of the to. but i will try the other one see of they have any advice it can't hurt thank you for reponding to my question.

They told my sister wouldnt see or move
. She did so u do.
just can tell you one thing, there is God and does Miracles, don’t believe or accept in ur life negative news from Dr’s or anybody, Jesus took sickness to the cross for us, you deserve to be healed in the name of God, look for him and we will heal you, he is the best Dr.

I truly wish you the best! I know it is soooo hard to make a decision on what and what not to do, but the main thing is to make sure you get a dr. that has lots of experience with avms…tumors are nothing close to avms. Avms are just so complicating. I truly believe in prayer and putting your trust in God. If you need to go out of state to get a good dr, I would. We went 2.5 hours away to get my sons treated in another state. Best of luck!!

I believe that to guys but have any of you guys had the radiation I am supposed to git 5 treatments then wait. But instead of once a week of or once every couple of days I ahve get it 5 days in a row I want to know from anyone also on here who has had the radiatiation gamma or cyberknife that I am getting would you get it again because i heard a few or more then a few people in this web site i who have large avm's in the same part of brain than that i do it didn't get rid of ot or they had worse symptoms afterwards can anyone tell me what there experience is or was with that i have to get it by the end of the end of the month i am running out of time. I do pray everynight but still everything inside me is scared to get this even though I have already had three minor brain surgeries and went through so much with this like we all have. thank you for you advice.

Lindsey, My son's AVM was in his left medial frontal lobe. It was very large, deep and complex. He had embolizations until they could not do anymore, too. I then flew him to Phoenix, AZ from Indiana. He ended up having two craniotomies, but has no deficits. Yes, a good neurosurgeon is important, but one that specializes in vascular issues, particularly AVM's is who you want. I don't mean a doctor that treats several a year, but one that treats several or more a month. This is a big step, research and get second, third and even fourth opinions until you feel at peace with your choice.

I’m sorry that you are forced to deal with this very difficult decision. At the very least, I would seek a second opinion, maybe from Johns Hopkins. Your situation is so unique that you may want to seek a third opinion. I suggest you choose a surgeon who has so many AVM surgeries he has lost count. When you have all the available options in front of you, you can decide if the benefits exceed the risks.

So how do u find them in diff. states look them up on the on the internet and how do you make sure they r what they say they r before you spend the money and go out of state, b/c i have9 docs here nurologists, nuroradiologists, nuropsycologists, , radio nurosurgeons pain mahagement docs and ect... how would u relocate all them can you is i hard to do switch medical asst. to another state too?

I don't know what to do b/c I was told in baltimore MD even though Johns Hopkins is here when i went in and they first found it in january they had to transfer me from the hosp. i was at b/c they said only 3 hosp. here worked on AVM's and J.Hopkins wasn't one of them it was sinai where i amgoing or this other hospital that really sucks I think its called st. agnus or st. joes it is deff. one of the two but they both suck where i am going is the best but no other hosp. here does them.. so i gues i would have to go out of state to find a second opinion or hospital with more experience. like u said it does suck and i am scared to dcared to death to get this radiation they always tell u to stay away from it even with x-rays thys they cover you with lead and every one else hides in a diff. room until they are done, now they want to shoot a thousand times that in the most imp. part of my brain I just don't know if i should. It is made for tumors not for AVM's. Does it even workfor us. or does it make it worse.If I don't get it will I die are my chances of living a longer life greater if I get it or let God decide he put it in my head when I was born is there a reason for everything. thank you guys for your help again i can use as much as possible always

I grew up in Maryland and went to college in Maryland so I am familar with the hospitals in that area. We recently had a friend who was successfully treated at Hopkins for a tumor on his optic nerve so I couldnt believe it when you said Hopkins does not treat AVMs. I went to Johns Hopkin’s website and found that they do treat AVMs. I don’t know why they initially told you not to go to Hopkins. The adult neurology referral dept is 410-■■■■■■■■. It sounds like your AVM is complex. I would even consider sending your case to a Doctor out-of-state to see what he says…possibly Dr. Spetzler (who came up with the Spetzler grading scale). A lot of ppl on this website have had success with him. I don’t even know if I am spelling his name correctly. It must be overwhelming to face all of these decisions when you don’t feel well.

I was lucky that I had access to medical professionals who where friends and that I worked with. As a favor they asked their neurosurgeon friends advice. These doctors where in two different states and the same names came up for AVM surgeries. I spoke to one of the doctors and he told me several helpful things. Being armed with this info I sent my sons records to the three that were suggested. From there I researched each one and did not hesitate to ask the nurse or secretary questions eg. how many AVM surgeries would you say he does in a month. When I heard one a month vs. five in one week. The choice was obvious. There are many great surgeons out there. I think most importantly you feel you have obtained enough knowledge and opinions that you feel you are making the right choice and decisions for you.

thank you i don't know why they told me that either they told me only 2 hospitals did it like i said sinai and st angnus or st joes and i didn't like like either of them i can't rember i just know it was one of the saint's when i asked about JH they told my they didn't do do them when i first got diagnosed and ended up at gbmc after i left franklin sqare i will deff. look him up though i really appriciate itthat just goes to show you u cant believe even things evry things even professionals tell u all the time but that is why i found this site b/c you have all been through it and actually know what u are talking about about, besides the memory loss pain stroke symptoms siezures and siezures i have never never had anything this serious wrong with me and just so when i found out this january i am kind of blind at what i am doing what i am doing i just know somethings feel right somethings don't. thanks again.

after all of you that have told me that i think i am going to call johns hopkins llike wendy said but also find some online see if they will talk to me before i do anything elsei don't feel right about does anyone knoe doctors that work close to MD b/c i really don't have the mon'y to trael constantly but if i find a great one i won't travel i will just stay there, thnk you again.

i am sorry i never called jh b/c the hospital they didn't do them i guess they were wrong b/c once u two told me i called and they do so i am going to get a second opinion there thank you guys or i would have never known

I’m so glad you are going to get a second opinion from Hopkins. I looked up Doctors on Best Dr site, US news I think, and I found Dr. Judy Huang from Hopkins on the list(I found the link to the best doctors on this website but I don’t remember where?). I think she does AVMs. Her number is 410-■■■■■■■■. She has 12 years experience but Be sure to ask how many AVMs has she done. I hope for the best for you. Keep us posted about what Hopkins says. I wish the best for you.

I was lucky. The ambulance originally took me to St Lukes. They did preliminary MRIs. They still didn’t know I had an AVM (didn’t show on MRI) but they knew I had a brain bleed and stroke. The ER Dr in charge told my Daughter that Barnes Jewish was the best for Strokes so he would have me transferred there, with her permission. She had transferred and it was a good call because they also were the best for treating AVMs. I should thank the Doctor at St Luke’s for looking out for my best interests but I haven’t done so.

So thank you guys i just got fitted for my mask today but not before I called Johns Hopkins and the Doctor I was referred to by Wendy i think and a few others told me to a second opinion and go to Jon hopkins I left message the doc called me back a few days later i explained the situation they took my insurance they couldn't fit me in so thee doctor asked for mri's so i dropped off disces thank god i saved them . A doc the other other doc worked with called me and wantedd to set up an appt said wanted to discuss the situation b/c it still was inoperable bc of size place and the main artey running into the avm which could cause stroke or anurysm if they operated on so he wanted to discuss options which was good news to me b/c right now my only option is radiation mabey he meant that mabey not but options is better then option.. Thank you so much before I met u guys Bayview a hospital here told me only 2 hosp here did avm's and JH wasn't one of them so thank you guys if it wasn't for your support and advice I don't know what I would do. Thank you. I don't even think that is enough what even do you say to people that might help save your life thank you just isn't quite enough not by a long shot but for what it is worth thank you.

Lindsey I'm so glad you were able to get in touch with the doctors at Hopkins. My mom has been treated there for many years (for cancer) and I've always thought the staff there was excellent. While I'm sure you're still anxious and nervous and scared, I hope knowing that there is a doctor that understands your condition and if offering a plan is very reassuring. As always, we're all here for you too.