I don’t even know where to begin. I’m so new to this and like a lot of you had never even heard of AVM until that horrible day I will never forget. My sister is such a beautiful, independant woman and my heart hurts for her and what she’s going through! I want to be there for her as much as possible.
Debbie,…
You have questions to ask,…well,…ask away.
If individually and or collectively we do not know the answer, I am confident that with all of our resourses we can find the information you need.
Know that you are among the best support group, for we all,…are AVM Survivors.
My thoughts are with you and your sister.
William
Thank you so much! I guess my main question is recovery? The avm was removed 10 days ago and I was just wondering how long it may take before she fully recovers? Also, she has some peripheral vision issues and I was wondering if those are temporary or permanent? Lastly, do people in high functioning, high stress positions get to a point where they can work again? Sorry for all the questions, I am a complete n00b when it comes to this.
Debbie,…
LOL,…I was too,…when I was told that I had an AVM,…At that time, I actually thought it stood for,…“Always Very Moody”,…lol,…(since I am a somewhat stoic individual)
We are all different, and the recovery time frame is also different per person. When it comes to her vision situation, again, each one is different, as some recover faster than others. I work in a high functioning job with high stress and I am/have been back to work. But again,…as every AVM is different so are the individuals involved with their treatment and recovery.
Debbie,…there are so many factors to be considered, the AVM size and location, the decided course of treatment involved, the recovery time, and last but not least,…the side effects/after effects of treatment.
May I suggest posting more detailed information about your sister’s AVM, and someone will post a reply with the info you want and need. Also check with her neurosurgeon for general edification/information.
I hope this addresses some, if not most of your questions, and know that we, (AVM Survivors) are here for you and your sister.
William
Debbie,…
A positive attitude/outlook is paramount in the recovery process.
Her speech and vision rehab will come with time.
And with her newborn baby,…THAT,… in itself would give me the motivation to recover ASAP.
Debbie,…try to be patient, understanding, offer consideration, show genuine empathy and sympathy, and help when you can,…(ie) love your sister. Be there for her.
I can only offer my support through this site,…but you both,… will be in my thoughts and prayers.
"You are,…What you do,…When it counts"
William
From one Debbie to another,
Caring enough to find out more about what you can do for your sister is a wonderful thing in itself. The one piece of advice I might give is that each step in your sister’s recovery, not matter how big or small, will be a significant one.
All the best,
Debboe
Debbie, absolutely, whatever kind of questions you may have please feel free to ask. Like William said, we are all here for each other, no matter the issue.
You did say your sister had a bleed, correct? It sounded like they did surgery right away, like that day?? Recovery time is a really hard thing to determine. Based on location of the AVM and the size of the bleed, etc.
For me physical recovery took a long time but that was because I had a very large bleed. I was in a coma for 3 weeks before my surgery and then for at least a week afterward. So in that time I lost so much muscle that I could not even hold my own head up. Rebuilding the strength was very hard. I had to learn to walk again. I also did have to learn to swallow again because I was intubated and extubated a lot in those weeks, trying to determine if I could breath on my own (which I apparently couldn’t :)).
As far as the brain recovery itself, it’s still on going. I don’t know if I’ll ever been fully recovered, or at least to where I was before my bleed. Again, for your sister, it depends on where her AVM was as to what type of deficits she may have. I did lose most of my vision in one eye and a lot of cognitive functions are kinda gone also (or at least not functioning properly).
I was in a very high stress, very demanding job before my bleed. I did attempt to go back to work but discovered that I just couldn’t do it anymore, for a lot of reasons, which I will be happy to share if you think it will help you.
Anyway, whatever you need, please don’t hesitate to ask. I’ll do my best to help you out. My thoughts are with you and your sister right now. How is she doing now?
Hi Debbie,
AVMs are a shock to anyone as few have ever heard of them, they are scary, and depending on size, location, bled, etc, and treatment, it’s impossible to say with any certainty how long recover will take or how much vision and speech will come back. I doubt that her medical team can shed any light on recovery info either, as "it depends."
BUT, having said that she has a newborn (and you didn’t say if this is #1 or ??), almost every AVM patient mentions becoming EASILY TIRED. With a newborn, even without an AVM, newborns are high maintenance and it’s very easy to become tired/run down. Add AVM recovery on top, and it might get overwhelming very quickly.
I know you mentioned your sis is “independent”, but now is not the time for her to show the world. So I suggest:
**Find someone to clean her house for her (doesn’t have to be you).
**Find someone to provide in home newborn care every afternoon for an hour or two. Then make sure Sis RESTS, and doesn’t try to use baby down-time to catch up with laundry, shopping, whatever–she needs REST.
**Find someone to help her with laundry.
**Find someone to bring in meals (or cook them in her place) several nights a week.
**See if some of her neighbors might help with shopping or driving chores. Our neighborhood is great: Chari had two small homemade flags she put on the mailbox. One had a “W” and one had a “G”; Walmart and Grocery store (she couldn’t drive due to seizures). The flag was seldom up more than a few hours before one of our neighbors stopped to either take her to the store or pick up the list of items needed. Very simple and yet very helpful.
I know it is hard for an independent person to do this–it was for us. Someone explained to us that your friends/family need to help you as a gift, so allow them to help. In our case, Chari has provided meals, done childcare, and laundry to help other people, so when she was down, she graciously accepted the offers of help.
If Sis is involved in a church or other groups, see if they might assist with some of the above.
In my mind, taking care of Sis and her baby are the most important things, and anything anyone can do to help with that is tremendous.
Hope this helps.
Ron, KS
Thanks for all the helpful insight! Yes, surgery was done the day after the bleed and yes this is her first baby. I wasn’t aware of how tired she is going to be but thanks for the heads up. She is currently inpatient rehab and once she is discharged I’m assuming some sort of outpatient therapy will take place? For those of you that had a craniotomy how long before you were able to drive, return to work? I’m in no way trying to rush her recovery but she’d like information from people who are going through what she’s going through and since she’s just 10 days post op and currently in rehab hospital she can’t really get on the internet for feedback so I just want to learn as much as I can. I don’t live in the same city that she does but plan on going there for an extended stay to help out around the house, with the baby, and errands. Thanks again for all of the great info and I’ve definitely got my work cut out for me reading these forums and getting as much info as I can. I love my sister so much! We are really close and I would do anything for her. Thanks again!
Driving will depend on her strength, vision, and if she had seizures during the AVM presentation. State laws in the US vary from 6 - 12 months seizure free before driving.
My recommendation is take more time to recover. Recovery is not linear–she might feel very good one week, then very tired for four weeks.
To me the important thing is she is ALIVE and gets a chance to raise her child–the rest, like driving and work, are just noise level stuff.
Having an AVM/surgery is life altering, so it is fairly common for depression to follow. Counseling to understand her feelings is important.
Hope this helps.
ron, ks
Debbie,
What a blessing your sister has you! My husband’s AVM bled Sept 2008, he had a craniotomy 8 days later. After surgery he was very tired for about 3 months gradually gaining strength each day. He had 3 months of out patient therapy, speech and OT. He would get frustrated as he thought he needed neither but in reality I could tell it really helped him. He thought he did not need speech as he could “talk” fine, but she went over ‘steps’ in processes that I could tell he needed as his job as a machinist he had an order to make parts, etc. My husband also dealt with a lot of pain his first couple of weeks, come to find out the pain med he was discharged with was not the right one for him, after getting a new med he was much better and could concentrate on healing.
My husband also lost his peripheral vision, half of each eye (right side of each) after his craniotomy. But as healing, swelling went down; he is now left with a quarter loss in each eye (right side still). He goes to a neuro ophthalmologist yearly now, she doubts this will return but still says the optical nerves are VERY slow growing and there is always a possibility but…. Unfortunately he also is left with a seizure problem, He was put on seizure meds after the surgery and the doc was weaning him off a month after surgery and he had his first grand mal, it was terrible as it was the first we dealt with. He went back on the med (see his profile on the seizure problem). Anyway (knock on wood) he has been seizure free for over a year now, but still on meds. I hope and pray one day for him to be off this meds and still be seizure free but if that’s the worse that could come of this besides the vision loss, he is VERY blessed! He went for over a year without driving and that was the worst for him, he is doing very well now with that. He has so many in the medical profession to tell him he is a very fortunate to come through this AVM ordeal as well as he has. He went back to work 3 months after surgery, and granted it wiped him out, but he was more than determined. He has some short term memory problems especially with names but really I do not see that as much different than before the bleed/surgery, he never was a name person.
We will be thinking, praying and hoping for a great recovery for your sister, she has so much to get better for with that new little baby!
Blessings!
Marie