Quantcast

AVM Survivors Network

New here, spouse just diagnosed

Hi. My husband was diagnosed with a “moderate” sized AVM in the occipital/temporal region after a grand mal seizure. At home now just under a week and trying to figure this all out. No subsequent seizures. Setting up an appointment with a PCP and then will ask for a referral to a Neurologist and Neurosurgeon. First time navigating Medi-cal/Caloptima as well. His first reaction was that he did not want surgery/radiation/embolisation and is upset at having his license suspended because he won’t be able to work. Taking it a day at a time for now. Feeling overwhelmed.

Welcome! Most of us here have gone through that initial shock, fear and trying to get an understanding of what has happened, what is happening and what may happen! You are among friends and a large group with vast experience managing these as patients and care givers. My AVM was left temporal and found when it ruptured in 2016, I had gamma knife as surgery presented a greater risk due to its location on the inside of the lobe. I have received the all clear this past winter following an angiogram.

Feel free to ask any questions of the group, we have several folks who have received treatment in California. UCLA is very well known for brain stuff. A day at a time is the best way to manage for sure, it takes a while. I was several months until I was at ease with what I was faced with and options I had to decide on. This group was a huge help for me. Take Care, John.

2 Likes

Thanks so much! And I’m so glad you are doing well! We’ve been afraid of the gamma knife as his late brother in law had brain cancer and his seizure got markedly worse after radiation. It’s comforting to hear that you took some months to make a decision. Feeling a bit panicked and like we need to decide ASAP to be honest which is silly I know. The AVM didn’t just appear that day. With Medi-cal I’m think it might be a somewhat lengthy process to get treatment at UCLA, but if they are the best in socal I’d want to go that route. I’m trying to balance being aggressive about seeking options and giving him room. It’s ultimately his body. I just want to get ducks in a row so he has the most options to consider from.

Hi, welcome!

One of the things I think I’d say is that it takes a decent amount of time to come to terms with a diagnosis like this, so to the extent that it is reasonable to do so, if you can, take your time and think about the mental health impacts of this on your husband.

I would say I self-diagnosed my AVM in spring 2016 and frightened myself stupid. It then took a further year to get a proper diagnosis and to see how big and where it was. While I would not recommend that sort of delay, it definitely takes a long time to get used to the idea that you’ve got something like this going on. The other thing definitely worth knowing is that there are a lot of people here who’ve gone through the same thing and have come out of it well. He mustn’t think of this as the end of the road. He will. But he shouldn’t.

Craniotomy seems to be the favoured treatment in the US but I had an embolization. As well as a neurosurgeon, consider taking to an interventional radiologist, not just about radiotherapy but also about embolization.

It’s a big shock but at least half of us have gone through that shock and he can get out the other side ok. (The other half are the ones who only found out after surgery, so didn’t have the worry that he is going through)

Anything you or he need to ask, just ask. It’s what we are here for. We’re not doctors but we’ve been through the same worries.

All the best,

Richard

1 Like

Thanks so much!

1 Like

Hello . I recently joined this wonderful and supporting website too and wanted to let you know that your feelings are not as much different that mine . It is so difficult to take the right decision when struggling with this type of condition. I have done almost all possible treatments except craniotomy which I am finally considering even tough it scares me a lot . When I was diagnosed last December with the AVM condition ,I was so scared. The first neurology Doctor I saw he told me “ in your case we can do either gamma knife or surgery “ , I could not decide to go with the surgery path because I was in shock and extremely scare of craniotomy so I did the gamma knife . The gamma knife may be a good choice but as you know you need to wait close to 3 years . My story is that in addition of avoiding a possible future bleeding , I have another important reason to treat the avm . I had started a treatment to get pregnant which I had to put on hold when I was diagnosed with the AVM. After doing the gamma knife I realized that waiting 3 years was not an
option for me as I am 42 years old already so I started looking other options beside surgery . An interventional neurologist gave me a lot of hope through embolization. Then I also did an embolization that have decreased a lot my symptoms of pressure headaches but unfortunately embolization could not cover the whole avm as there is vessels that can not be reached in my case and now I am here at the starting point realizing that the only treatment that will remove completely the avm faster and that will allow me to continue with my plans of getting pregnant is the surgery .

What I have learned during all this transition and after reading so many stories is that taking the right decision is very difficult but if you can do it since the beginning It is the best thing to do as it will save you a lot of nightmares , crying and desperations moments. I also have learned that the treatment that work for one person may not be the treatment that will work for another person and this why it is very important to find as many second opinions of neurology doctors as you can before taking the final decision. I my case multiple doctors in this field that I have seen , all have told me that surgery is a good choice in my case due to location and size of the avm , I am planning to see one more neurosurgeon that looks to have more experience and prestigious in this area of vascular brain surgery and if he give me the same advice I will most probably do surgery with this neurosurgeon then.

For all you that have the luck of having options to treat this condition, I hope you can choose the best treatment that will bring the best results at the end of the way and hopefully you do not have to spent much time to take the decision as the most you wait the worse it is .

Best of luck and hope for all !

Sincerely, Yania

2 Likes

After a grand Mal seizure I caught a ride to work with a co-worker for 6 months until I could get my medication straight. Don’t panic. You still have to see the neurosurgeon. Keep the faith. And except for this site stay away from the internet-lol.

1 Like

Thanks so much for sharing. It’s so really helpful to hear about your experience. So glad you are marching forward with your life. It’s hard not to think only of the worst case scenarios.

Best of luck to you as well and big hugs!

Thanks. Yes defintely hard not to panic and scour the interwebs and freak out lol. Unfortunately my spouse’s work requires he transport his own equipment to differing work locations so a simple ride won’t do it. I’m not so concerned about the short term lack of work, we will manage. What concerns me is his despair and frustratation in thinking this is the end of his career. I think it’s too soon to come to that conclusion but I don’t push the subject. As hard as this is for me, it’s surely a million times harder for him so I give him space to work this out emotionally. Ultimately I cannot really know what he is feeling/going through.

Cheers and keep on keeping on!

Hi, and welcome to this supportive group I had a craniotomy 29 years ago of course back then that was the only option that I was given, it is a tough road to recovery but your husband will do wonderful as long as you are by his side to assure him that you will be there for him no matter what. Best wishes for the both of you.

2 Likes

Thank you! And so glad for your recovery. 29 years!

1 Like

I believe UCLA has good neuro interventional radiologists that can properly treat him.

Thank you!

This is very bad news for the pair of you. You don’t need to compare the emotional impact. You are both hurting. That is it.

My family suffered due to what happened to me…I didn’t really take their thoughts and feelings into consideration. I was just thinking about myself at the time. In a way, they probably had it worse then me…for a while.
At the time, I only considered myself to be the victim.

As soon as I went to rehab, my social awareness and understanding heavily drained out. I was in rehabilitation for 4+ months, and I became heavily institutionalised.

I was regretfully, taking anger and frustrations out on my family and friends.

They was as confused as I was. No one really had an answer and there was no simple solution to the problem.
I’ve had 3 cancelled surgery dates this year. It has been really hurtful and my behaviour became worse, due to the cancellations and anxiety of it.

I guess time heals, and returning to the real world, eventually…heals.

I became heavily interested in astronomy, to the point where it actually raised questions and I was considered “weird”.

It’s like I created a fictional side of my life, in order to mentally escape reality. I hated the way I behaved at times. I guess it’s just a dark and embaressing memory. I lost an important aspect of social awareness.

I did actually learn a lot of interesting information about space, to be fair.

Your husband is likely to be in a very dark place at the moment.
He probably just needs TLC…but also sincere honesty. He might also be feeling angry, mentally isolated and lonely. He is probably obviously really scared too.

Don’t be scared.

Remember…in this life. There are a lot of things that we have absolutely no control over.

He will return to being his good old self one day.
He will hopefully learn a lot from the experience.

I always got told to “be positive” and it used to really annoy me.

I can now completely understand why I was always advised to be positive. I just couldn’t see it at the time.

Best wishes :slightly_smiling_face:

1 Like

Thanks! I’m patient and understand he’s not quite himself with all this going on. I just want to support him however he needs and stay even when he lashes out. One day at a time. We will get through this. It’s early days.

1 Like

Like you say, it’s early days, but he shouldn’t be lashing out on you.

That does neither of you any favours.

He probably doesn’t realise what he’s doing and how he’s making you feel.

It is a very difficult one.

What are his hobbies? He is obviously understandably very frustrated due to his work situation.

Eventually, he may feel the need to put his internal energy towards something else. He probably just needs a break and to concentrate on something else and something new.

If he is struggling with memory.

Fun things to aid it, surprisingly, are video games and musical instruments. Practical Art will also help. Perhaps a good old interesting new fresh book.

I know it’s not ideal but I can handle a little grumpiness all things considered. His mood has improved a lot since he got off Keppra. Memory is fine. No further seizures. Aside from some scratches and bruises he’s physically pretty normal aside from his tongue which makes it hard to eat. I think he just needs some time to physically heal and mentally process all this - a break yes - before he can really focus on the path forward.

1 Like

Understanding is key, I feel. Stay strong. You’ll both get through it. :heart:

1 Like

Thank you!

1 Like

Sorry to hear about the diagnosis but there is light at the end of the tunnel… many have gone through this and as hard as it is it’s not the end and far from it… I was diagnosed before Christmas 2010 and suffered a bleed a month later in January 2011… considering the circumstances I had no option but to have surgery in February 2011… it’s been an ongoing journey but life goes on and things do get better… I was in a position where I had no time to waste and had to act quickly, however circumstances were different and I don’t think you can rush this decision but again wouldn’t take a long time… keep in mind there’s many here that can offer feedback on their personal experiences and this will help you guys a lot… God bless!

3 Likes