http://www.nbc29.com/story/31406193/uva-study-leading-cause-of-stroke-in-young-going-untreated
Our son Simon decided to go on and do the radiation treatment. Above article was interesting to read for me, found it just now.
We are now waiting to do the preparations and after that we know when and where the radiation will take Place.
Regards from Simons Mother, Cilla
Hi Cilla, my name is Christa . My son was diagnosed with an avm on January 19th after seizure . We have had several opinions. One dr says he would do surgery with a 4% chance of a permanent deficit and 14% of something he can overcome.our local hospital that was.
3 other Drs from John Hopkins and Jefferson hospital said it is too dangerous and do not recommend surgey. They do recommend radio surgery. One does cyber knife and the other gamma or linac. My son is 21 so it is ultimately his decision. He is not saying much at this time. Was just wondering wht type of radiosurgery you were recommended? Sorry I know I wrote a lot. But I’m sure you know how difficult this is. I will pray for your son and everyone one else with this.
Hi Christa! Our son is also 21 this summer so the decision was also his own to make but we have been there together with him all the time. We found out a year ago and after this it has been a lot of information to handle. The outcome is that they don´t want to do the surgery sínce the AVM is to close to speach (left frontal lobe).
We are at a hospital in Gothenburg,Sweden, called Sahlgrensak Sjukhuset. It is a very good hospital and they have a lot of international cooperation with other expert hospitals and they have had meetings with a lot of different specialist regarding Simons situation.
All of them are so far convinced that they want to use Proton radiation, and they want to do it on 2 occations in one week. We are now waiting for the preparing to start and that will take about a month and after that they will make a final decision.
The hard thing about all this is that Simon is feeling fine, he is working, training etc and life goes on. The hospital Think that they need to inform us of all the risks involved with radiation treatment and even if the risks are small that is what you think of. Should we let it be and hope for the best instead? The article I found made me feel better and think that Simon has made a good decision and now we just look forward and want to have this done and over with. After radiation we will just have to wait and see and put it in Gods hand.
This was a long answer but you know as a Mother that your mind and heart is full of feelings and thouths about this all the time.
I will gladly keep you up to date with whats happening, your son will together with my son be in my prairs.
Best regards,
Cecilia
Thank you Cilla. Your right the hard part is our children feeling fine, Brandon does the same thing. Work, exercise going out with his friend being he just turn 21 in December. They are living there life! Which as a mom like you said . It scares me to death every time he leaves the house . I am trying to stay positive . But some days I find myself thinking the worst. I get so mad at myself. I guess this is natural, being its our children. Did you or do you go through this also? We just found out 2 months ago so still trying to process, as I’m sure Brandon is too. He does not talk about it. Did you go through this as well? Or was your son quiet about in the beginning. Our sons seem to have the same options as far as treatment goes . To many risks for surgery. Thank for listening. If ther is Anything I can do for you, will. Even if it’s just an ear to listen! I will keep your son and everyone else with this in my prayers. Thank you again Christa
Dear Christa, I was like you are now the first time. I was so worried and felt like he had a bomb in his head and that it can explode at any time. I called the hospital to have information each and every day and Simon didn´t say much at all. We found out in April and in October we finally came to the right doctor! They decided to try embolisation and started up the proceedure but had to stop becouse when they were in position they could see that it was to risky. After that we had a long talk to our neuroseurgeon and after this discussion we all felt better. He explained why they couldn´t do the embolisation and showed us Pictures, told us about the risks with having an AVM and also said how they wanted to proceed. He said that Simon is born with this and has to continue to live life normal, if it wasn´t for the seizure life would have been as it always has been. Simon still doesn´t like to talk about the AVM but he is very comfortable with our doctors, both neuroseurgeon and radiationdoctor and when we meet them he asks a lot of questions, he trust completely that they will decide and do what is best for him. I must say that I agree with him and feel that we have to trust in that this will be fine. If Brandon want´s to talk to Simon you just tell me, guess they both are good in computors so chat is not a problem. We have to take one step at a time and believe together with our Children that together we will come through this. Many warm hugs from Sweden and Cecilia
Thank you Cecilia
I will let Brandon know. Sounds like you have been down a long road so far. That is exactly how I feel ticking time bomb… Just have to take one day at a time. One surgeon we saw did want to to embolization, but when we took him for second opinions they said No, that was the same surgeon that said he would do surgery. Every other place said no to risky. He finally said something to my husband that he does want to do the radiation. we haven’t sat down and talked about it together yet. Brandon works overnight shifts, so sometimes it’s hard , never seems like the right time. I feel like when we finally have time together, I do not want it to be all about the Avm . I feel like sometimes I don’t know what to say to him. Terrible feeling when your talking about your own son. That is something I just have to overcome. He said to his Dad possibly after vacation. We had just booked a trip to the Dominican Republic, Punta Cana, in June. Right before he had his seizure and we found out about his Avm. I am going to try and talk him out of it, I’m not quite sure the hospitals there is where we would want to be, god forbid something happen. Just too soon. I will keep you posted. Please keep me posted as well on Simon.Please tell him he has prayers and thoughts coming from the U.S.
Thank you again, it’s really nice talking to someone that knows this feeling. Like you said, trust that this will all be fine and our children will come through this.
Many warm hugs back from Christa and USA
My son is 14 and our neurosurgeon has recommended proton radiation I have read that proton beams cause less side effects than photon radiation. I’m very nervous about side effects nonetheless. My son is recovering from a severe bleed . He has made so much progress and I would hate for him to regress. Praying that it all goes well. Good luck with your sons treatment.
Thank you for your information . I will definitely talk to Dr’s before treatment . I will keep your son in my prayers and all goes well.
Thanks for sharing as the article is very helpful.
All the best and God Bless