Very confused. recently diagnosed with AVM

Hi. I am 22 and earlier this year I was told that I had a AVM. This was actually found by fluke as I was admitted to hospital and was also told that I had an infection in my nervous system. I am a new mum and have found all of this very hard to deal with. As my nervous system is looking like it is now recovering, my neurosurgeon has advised me to have surgery to remove the AVM. I am very confused and also scared of the complications that can arise. I am fortunate enough as I have been told that not all AVM’s are operateable so I do consider myself one of the lucky ones. I am due to go back and see my neurosurgeon on 8th Dec to discuss the op and I guess to arrange when this will be carried out. Can anyone please give any advice or experiences they have had as I am finding this very hard to deal with and my subconcience is playing horrible tricks on me and my thoughts are morbid. Thanking you all in advance, Claire x

First Claire, welcome to the group. We’re full of wonderful people ready to share experiences/advice. I can understand how you must be having a hard time dealing with this news and how scared you must be. I consider myself fortunate in that I had a major bleed and that is how my AVM was discovered. I didn’t have to deal with the news or the confusion about whether surgery is the best option all of that was taken out of my hands. For me surgery was the only option as the neurologists believed another bleed was not only likely, but imminent. I think you should do just what you’ve done by posting this blog. Others will respond. Read other people’s stories. Consider a 2nd opinion as well. Good luck to you!

Welcome to the site. I think your fears are identical to most of the people here who had never heard of an AVM until they were told they had one. It is Scary–no other way to say it. But there are some things you can do that might help minimize your fears. Hope some of these might help. If you just get ready to face this head on, that might help some. A lot of the fear is from the indecision and waiting (at least that was our experience).

First, get a 3 ring notebook and it becomes your ‘bible’ about your AVM. Write down everything you have done, when, where, and by whom. Write down any meds you are taking, including dosages, and your reactions to them. You will find on this journey that your records and the ‘memories’ in the book are much better than your memory and the DR’s charts, especially if you see multiple DRs. Get a copy of all scans and test results you take–they go in the book as well. The book goes with you to every DR appointment.

Since most of this terminology is new (probably), take someone with you to the DR visits. You should each write down questions to ask before the appt. Then each take notes and right after the appt, compare notes and clarify what you heard.

Some good questions to ask your neurosurgeon: How many of these have you seen? Treated? Success Rate? What about mine? Unless he’s done hundreds of these surgeries, I’d opt for a 2nd opinion with another AVM experienced surgeon. And a surgeon knows surgery, not necessarily about embolizations and radiation, so I’d want a complete team providing me guidance, not one surgeon. He or she knows how to operate, but that might not be the best treatment for you.

What other options are there for me to investigate for treatment? What would you do if this were in your child’s head?

Ask any questions you have here as there are many caring people who have been or are on the journey. Just understand that seldom are two people’s AVMs, treatments, and side effects the same.

Your age should be a plus if you do have surgery.

The emotional side is very important as well. For most of us, this is a potentially life altering event. A professional counselor for the family can really help. Our kids were in middle school when ours hit, so they really benefited from a kind Christian counselor who helped them understand their feelings and fears.

My best wishes to you and your family.
Ron, KS

Ron’s advice is terrific, Claire! Then again, Ron was one of the first people to offer me advice…other than a doctor…when I was diagnosed four years ago!

Hi all. Thank you for sharing with me your experiences/advice. Me and my family have spoken and I think that I will decide on the surgery. My surgeon has advised me that if surgery is a sucess, I will be cured and not have this worry everytime I get a bad headache and so on. Although I may have reached my decision, as alot of you know it is still far from easy. I would be grateful if people could share their honest experiences on opting for surgery and how their recovery period was. Many many thanks again, Claire

hello ckaire, mum here, just want you to know we are very proud of you and love you dearly, our surport for you is unmeasurable but these wonderful people on this site are first class advisers to what you are feeling and the worries and turmoils you are going through, we know how hard it has been for you to accept your avm and to face this choice of treatment but with our love and surport and the reassurance you will get from these wonderful people, will help you in your strength towards your treatment, you have been through a lot this year and we all look forward to a better 2010 for you, upwards and onwards,chin up and we all love you very muchxxxxxxxxxxx

Hi Claire. It sounds like you have a wonderful family behind you. That is one of the only things that helps you get thru this so you have what you need.
EVERY single thing that Ron said to you in his post above is just SO important. Keeping the journal and asking those hard questions will just make all the difference in the world to you. As you ask more questions, you will feel better inside that you are doing the right thing. Sometimes that takes more than one consultation appt. and that is okay! This is your brain and your life and you deserve to feel like you are making an informed decision. And I’m sure you take some other support people with you to the appt’s. That is important too. Just keep taking these steps forward to educate yourself and you will find that you are more in control of the situation. You will still be afraid but you’ll feel stronger.
My thoughts are with you and your family. I know what it feels like to have a child going thru this.

Hey Claire. Welcome to the group. I myself am a newbie too, but decided to share my experience after I found this great forum. I had a pretty similar experience to Trish, when my avm was discovered following a major bleed at the beginning of the year. However, at the time of the bleed, docs still didn’t know the cause. It was only after my initial craniotomy to treat the bleed, and a further 6 months of recovery time and several routine brain scans and a cerebral angiogram that they found the avm as the cause of the bleed. Yes it was very scary when I found out that all was not safe after I thought I had made it through the worst.I, like you, was only really given the option for surgery to treat the avm, but I thought hey, the pro’s of this operation massivly out weight the cons of not having it treated, so lets go with it. It’s now been 2 months since my 2nd and last craniotomy. Claire, I agree completely with Ron. Definitely make sure your neurosurgeon is highly experinced in treating avm’s. It really makes all the difference. As far as the surgery is concerned, my experience second time around was a lot easier and my recovery was much faster. Only because I wasn’t recovering from both neurosurgery AND damage to the brain cause by my bleed. So in your case, I’m sure you should be able to breeze through it! :wink: Good luck Claire!! You’ll be fine. Ali

I just want to say thank you to all of you as you have given me some really good advice and this is starting slowly to become more easier to talk about and to face up to. Thank you all for taking the time to read my post and leave your comments as it is REALLY appreciated. I do believe my neurosurgeon is giving good advice as I am going to be treated at Queens Hospital in Romford, Essex and have been told by many people that this hospital is one of the best in the country with regards to neurosurgery. My partner has also benefited from this site as like he, we both didnt want to face this problem but together with all you lovely people, we are getting there day by day. Thank you all once again, Claire

Hello everyone! I hope this finds you as well as can be. This thread was referenced in another discussion recently, and I’m curious: is there anyone here still active on AVMSurvivors?

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