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AVM Survivors Network

Treatment outcomes. Deciding to go for it or not


#61

Thank you for your support. I am defiantly thinking about a second opinion. I have one more angiogram and then I will ask for ll my scans and results so I can send them to the USA.


#62

Thank you for this idea I am really taking it into consideration. Everyone’s support is really helping me. I don’t really talk to my parents about it because I don’t want to worry them about it.


#63

Hi Sophie,
I am sure that you are just as confused as before posting your dilemma. You have read through 6 pages of comments from us members, that can only give you our life experiences. We all have a different story, some are similar to yours, but nothing is exact. I wish we could say we were all doctors and tell you exactly what to do.
I have been on AVM support websites since 2002 and have seen lots of situations. I've had my own chatroom for a while where I helped a lot of scared, nervous people to prepare for their procedures.
It is not easy, but hon, most people are telling you same. Talk to your doctor or go get a second opinion. these crazy things can be tricky, depending on their size, their location etc.
None of us have seen your scans and we can't be a real judge of what is happening.
There are many doctors in the US that really know what they are doing when it comes to AVM's. They can zap those boogers and get them outta there. Sheffield, in England prefers to do GammaKnife. I know for a fact, Gamma doesn't always work. It does sometimes, but not a guarantee.
Ok, since I am sitting here babbling away, I am a 67 year old Mom, Grandma, Great Grandma. I had a ruptured AVM in 2001 and a residual surgery in 2004 to remove another and clip an aneurysm. The one good thing about a brain bleed, you don't have to sit and worry about everything you are worrying about. The anticipation and worrying is scarey. I did that before my second crainiotomy, I feel for you. Just remember, honey, doctors do know what they are talking about.
That's the good thing. It takes a bunch of time and a bunch of money to become a neuro doc and they are usually pros at what they do.
hugs to you and hope you and your family make the decision in a timely manner.
~AVM Sandy~


#64

You definitely have a tough decision. It’s one that a lot of us had to make. I like the recommendations on getting a second opinion. This is a very important decision. I remember asking the doctor what would happen if I didn’t get the operation. In my case, I probably would have a near fatal hemmorrage. My surgery was 26 hours and was followed by gamma knife. Each case is different, but if you can check with a second doctor, then you’ll have more information to make a tough decision.


#65

Hi sophie
I understand how scary this can be and hard to decide Remember that you are not alone although it does seem like it at times I tried to think about the positive effects everytime the negative thoughts arose and they still do as I still have one anuerysm that will be clipped via a 2nd craniotomy to be done in two days The first craniotomy was procedwd by a six hr emboliatuon the day before and I had some right eye issues due to the annies being close to optic nerve but all in all I am so thankful that mine were and will be done thank god before a rupture I think knowing they could was the scariest part so I chose the only treatment I felt would completely get rid of mine They other thing other than believing god brought mine to light before a rupture is such a miracle within itself and my doctor was one of the best and had done thousands of these procedures my doc gave me additional peace and comfort when I asked him and my regulat neuro doc what they would do if I was there daughter wife or sister and they said crainiotomy
Yes it was a big wow moment as no one really wants lol brain surgery but again for me it was they only treatment that is complete which is why I chose to have another one
I wont kid you that anxiety and depression and some post traumatic stress are still on my mind so I seeked some talk therapy with a therapist to help me deal as well
Ask for help and getting all the help you can will help but living with the unknown can sometimes be worse Personally I wanted my a removed forver and my annies clipped
I pray you get the best treatment possible by a doctor who makes you feel confident in your choice


#66

Dear Sophie,

I understand your dilemma and pray for you and your doctor's wisdom in your treatment. My son was 15 when he started being diagnosed, and it took 18 months to confirm his AVM at his spin at the base of his neck. As you stated, there are risks. From our experience of multiple embolizations to shrink the feeders, my son has been able to resume normal activities with the knowledge he must stay regular with his scans. His AVM cannot be removed--just treated in the event it grows. Every procedure ran the risk of paralyzing him from the neck down, and I know every precaution was taken to determine if at any time an artery had been nicked or compromised. We conferenced with Dr. Todd Abruzzo (Cincinnati, OH) who specializes in brain AVMs but decided to go with Dr. Patricia Burrows who was in NY at the time. We felt Dr. Abruzzo was to conservative in his approach with our son who had such a complicated case.

My best to you as you decide what to do and know that while all AVMs cannot be removed, they can be treated so that you can resume a normal life.


#67

Hi Sophie,

How are you doing today? So many stories, so many experiences to read! Who knew there were so many people with brain AVMs? I had never heard of any such thing before my "event" (large bleed, without any warning or diagnosis). After it happened, several people in my area shared AVM stories of some of their family members. I found this AVM support website a couple of years after my surger.

In my case, all the decision regarding my care had to be made by my husband because my post-bleed brain wasn't in any shape to take in the scope of risks vs benefits. He often asked the doctors "if this was your wife, what would you do?" Because of the critical nature of my case ("ticking time bomb"), there was no time to seek second opinions from alternative medical centers. Maybe that was a blessing, because too many options can often make the decision harder.

I was cared for at a teaching hospital in the middle of New Hampshire, USA. One of my sisters lives near John Hopkins Medical Center (near Washington DC) - she was upset that I was "in the middle of nowhere" and worried that I wouldn't get the best care & treatment options. Once she was able to visit me at Dartmouth-Hitchcock Medical Center, Lebanon, NH, she felt much better about things.

We were told that many advances in treating AVMs had been made in the early 2000s. If my bleed had occurred earlier in life ... I would rather not think about that! While I was in the hospital, many doctors and nurses marveled that I survived as well as I did.

Sophie, can I pray for you and your situation? You have a lot to think about. I trust that all will be well.


#68

Hi Sophie,

I had a right frontal AVM. I went down the glue route and followed up with radiotherapy. It's a very weird place to be in. But I would recommend going with the medical advice you are being given. I was terrified at first but once you get to grips with whats going on a certain calmness sets in. I have been very lucky to get a second chance at life. Most people never know they have one until it's too late. Learn as much as you can (sounds as if you are pretty clued up already) ask loads of questions and talk to friends and family who can be invaluable help in such circumstances.
Good luck. If you want me to answer any questions feel free to ask. This forum is great as we've all been there.

Best wishes

Alex


#69

Thank you very much for your support it helps a lot knowing there are people experiencing the same thing as me because I don’t talk to anyone else about it because they don’t really understand it. So thank you very much


#70

Thank you for sharing your experience with me I’m glad to hear that you have recovered well and the treatment went well. Thanks for your support


#71

Sophie, Here it is Saturday morning and you have had a ton of replies...are you totally confused yet? LOL
I hope you understand, as I said before, everyone has a different story, a different outcome and a different life. But we are all in the same boat. We have either all had or have AVM's. We are here for each other. We are one big happy family. This is a great place to touch base, ask questions, vent, rant and rave or just chat.
Any more ?? JUST ASK!!!


#72

I'm so sorry..it must be so hard for you. I do agree with others about other opinions though..i started off in 1 hospital after my bleed and asked to be transferred to another..they were fine about it and I think they would completely understand you getting other opinions..its a huge thing to consider and you may feel reassured if other consultants tell you the same thing..if they give you other options then you can consider them too xx


#73

Hi Sophie, Just checking in with you... Have you gone for a second opinion or returned for follow-up yet? Are you feeling more confused - or maybe reassured after hearing all the success stories?


#74

Hi Sophie
If they can operate on it without any post op side effects, I would go for it.
The thought of some little monster inside your head for the rest of your life would be daunting and could get in the way of you living a full life.
When I was diagnosed, I didn't know anything about AVM's (I do now though) My Doctor went through all the possible treatments, but in the end I asked if it could be operated on and removed successfully, without any post op side effects, then I wanted them to go for it.
Of course they can't guarantee 100% no side effects or problems with the op, we are all different but when I was in Hospital getting ready for my op. I was speaking with other people who were in with AVM's as well and some were having the embolization or coiling. They all wished they were having their AVM removed for the simple case that its gone and don't have to worry about it anymore.
My op was 10 hours long and when I woke up in ITU, I had a bit of a headache. My face was a bit swollen and I had two good black eyes. My AVM was in the front left lobe. Once they took the "turban of bandages off my head" it relieved the head pain no end, as I think it was the swelling that was causing the pain.
After about 1 week my black eyes had gone, I was still a bit swollen, but nothing like I had been.
By the time I was back home (2 weeks post op) the swelling had gone right down. Apart from the scar (I am a bald old git, a young girl like you, your hair will grow back in no time) all was ok.
Speak with your Doctors, ask questions (lots of them) and don't worry if you feel you are repeating those questions. Its your head after all said and done.
Seriously, all the guys I was in Hospital with all came out of their respective ops/treatments without any side effects at all.
All I get now and again is some headaches which I can cope with.
I think the worse is the emotional side of things like this. You are having someone playing around inside your head which will make you feel "odd" afterwards, however the vast majority of this you can cope with.
Just have a good friend or your parents to talk thing over afterwards if you are feeling a bit low. Just someone who listens to you without judgement is the best remedy of all.


#75

Look, it's not that "simple" to tell someone to "go for it" and that "the thought of some little monster inside your head for the rest of your life would be daunting." There are many people who do better if the do not have surgery. Some are inoperable and they don't want to hear you call this a little monster inside their head or a "walking time bomb". ALL AVM's are DIFFERENT depending on the size and location. Before you let some one tell you to "go for it", educate yourself by reading a lot. You will soon figure out that a lot of people get surgeries and radiation treatments that are botched. YOU have to go to a place that does a lot of AVM surgeries. You can send your scans to Barrows Institute and they will call you with an evaluation. In the case of my loved one, they said do not touch that AVM. John's Hopkins doctors told us the same thing and that surgery might cause SERIOUS determents. That is not to say that your's is the same. NO two are alike! However, the first group of doctors wanted to "go for it" on my son. I know now they would have hurt him more than they would have helped him. Go to a teaching hospital, Mayo Clinic, Barrow Institute, Johns Hopkins.... There are a lot of doctors who do not know how to do the surgery and they will attempt it anyway. You and your parents need to educate your self about this by getting two or three opinions from good hospitals. Don't let someone on here tell you what you should do!!!!


#76

"Don't let someone on here tell you what you should do!!!!" Accept you, evidently. Posts by survivors are here to share stories with hopes of others gaining understanding, and expectations. We're not here to prescribe courses of action, but rather suggest them. All the capital letters, exclamation points, and contradictions don't add clarity to whatever ever your points are. Think compassion and empathy. Not castigate and lecture.


#77

I am sorry if I have caused some offence here I can assure you it wasn't intentional. All our experiences with AVM's are different. My point was that, as I did got everything discussed with my surgeon and additional information, I was assured that I would be ok post op.
If my words of little monsters caused you offence well again I am sorry, but this is what I felt this is how could come to terms with it. You are not me and I am not you. We all express thing differently.
It is still my opinion that if I received assurance from those medically qualified I will always go with my decision to have the AVM removed. end of.


#78

Hi Stuart, my reply was to Lea's post. Not yours. So the apology is mine to you. Apparent I hit the wrong "reply." Your post was spot on. Not didactic nor chastising. We're all here for the same reason...usually.

Enough of that. Onward & upward to assist our AVM brethren.


#79

Again I feel I have hit a nerve here, unintentionally.
I was not advising anyone of having an operation but in my opinion if all matters have been discussed with medical professionals and those qualified to undertake these medical procedures (not just anyone's opinion on this website who have no medical qualification whatsoever)
Everyone should go through discussions with the appropriate medical professionals in this field. Until this element has been thoroughly been discussed I would not advise anyone to have any medical procedure whatsoever.
I am sorry if I use exclamation marks or you found my comments contradictory. This is how I write and I am not apologising for it. I was not writing a thesis, and didn't think I had to dot the I's and cross the T's. Your comments about lacking compassion or empathy I do take objection to. I am only a guy who has gone through this awful experience and said it how I see it. Sorry if it wasn't articulated as well as you obviously expect comments to be made on this website!!!


#80

I think we are getting a little unfriendly and not very supportive. There are basically two camps within survivors. Those whose AVMs have been operated on and those who have not. People’s individual experiences often make them very wary or passionate. Let’s all try to remember that we have more in common and not flame each other’s opinions. One heart. One love.