Well the dr. was saying that I can wait for her to heal and she can make her own decision about if my mom wants the surgery or not. But my mom does not like hospitals or drs so she may not make the right decision about her surgery, and that was why I was seeking advice so that I would be able to get some feedback of this. The dr said she has come a long way and now since the swelling has come down substancially now he would like to go in and remove the AVM all together. I said well what if I don’t do anything and just leave it and that’s when he said well she every year can have a 4-6% chance that it can bleed again. I don’t want her to ever bleed again so, i have to do my research. She is talking now thankgod and she is doing a lot better she doesn’t move her left side a lot tho and she is in restraints because she tries to pull out her feeding tube, which she pulled out the other day. So they put the restraints on her for her own protection. She is on a red cap of her trac tube now so hopefully the trac and the feeding tube can come out soon.
Hi...I agree with dancermom regarding getting a second opinion. Perhaps she will get the same advise, however it will make it easier for your Mom to make her own decision. Also, doing research is a great idea. Now that the size and location of her AVM is very important when doing your research. It would be helpful for our group if you add more information regarding the size and location of your Mom's AVM to your Profile.
Wish you the best!
Thankyou for the advise, her AVM bleed was the size of a baseball. In the front of head. I really would like for her to make her own decision, but again she may not make the right decision.
How close are you to Johns Hopkins? When my brain ruptured, I was in a coma and my family had to make the decision for me. Knowing the size and location, I would look for the best AVM neurosurgeons in your area and although it is hard, you will probably have to make a very hard decision.
I will make you a friend, if you need any support.
I am near John Hopkins, why? I see I will have to make the decisions for her, bc she is not In her right mind.to make that decision for herself . Thankyou for adding me as a friend. I really appreciate that and can use the support.
Johns Hopkins is one of the best AVM Brain neurosurgery centers in the country. Where is your Mom now? If I were you, I would call Johns Hopkins and explain your issue and see how soon they can see her.
If you look at the list of the best, Johns H is the top hospital so if you are that close, I would look into it immediately.
I am near John Hopkins but my mom is in orlando regional medical center. It happened to her the AVM while she was visiting her mom in Florida so she has been in the hospital since feb. 3rd and I live in MD I’ve been visiting her every month since it has happened and I have been communicating with the doctors and my family about her when I come back home i talk to everybody via the phone and now since she can talk including her. She is just very frustrated now it’s been 7 weeks and they put her in restraints she is tired now
And wants to go home and I keep telling her be patient mom and she was very active before this happened so it’s annoying her a lot. And I don’t want to see her go thru this and when I heard she pulled out her feeding tube was upset, she did a swallow test with the trac in her and the feeding tube but it’s not going all the way down yet it’s just going to her lungs not to her stomach. So I think I really need to have her surgery done so that she can really start healing and so that she can start her rehabilitation
I believe in second and third opinions from the most successful neurosurgeons . I also believe we are all capable of making our own decisions about surgeries and that whatever decision we make for ourselves is absolutely the right one . None of this is easy or simple accept that your Mother has every reason and right to make her own decision . Seems she should be communicating with her medical tam and getting at least one more opinion , if not more . It is her life and she needs to be included - No be in charge of it . She deserves the best possible outcome and she will only have that if she charts her course based on facts , reason and desire . Knowing and understanding the problem is half of the solution . I hope she has the best possible outcome .
Yes she really should Marianne be in charge of her own decisions ultimately as you said, a person should be in charge of thier own life and decisions as long as they are in thier right mind, and are making lucid rational decisions. I don’t want her to bleed again.