Hi everyone.
My father is 77 had an AVM near his brain stem in the back left side of his brain in early June. The neuro interventionalist did an embolization to stop the bleed but had complications getting to the bleed and when my dad came out of surgery almost 8 hours later, he was so loopy we could barely recognize him. He was in ICU for almost 3 weeks, inpatient rehab for 6 weeks, a nursing/rehab center for 90 days, in home health and rehab for 6 weeks and is currently in outpatient rehab for more therapy. The neuro told us my dad would be out of the hospital three days after the procedure and just need outpatient therapy. It took many visits to different neuro docs with cd’s in hand to find out that my dad had a stoke from the embolization. He was unable to walk, talk, swallow, and had double vision. Now, 6 months after his embolization, the neuro docs want to have him come back for another angio to make sure the aneurysm is still closed off but I am deathly afraid to have anyone go near his brain again. He still has bad balance, poor judgement, double vision and poor communication skills. I know that my father, at 77, just wants to live his life out without anymore complications and I am afraid even an angio would set him back further. I have 3 siblings who are having a hard time accepting that my fathers brain was damaged and his mind is more like that of a four year old and they get offended when he calls them the wrong name or uses the wrong words. One believes I killed my father because he thinks I allowed the doctors to do an experimental procedure on him. He says my father is dead to him and will not even call to see how he is doing. One sibling lives 8 hours away and is unable to help much. My last sibling is upset that my dad calls her the wrong names and doesn’t call him either. Needless to say, myself, my husband and my seven children are the ones left to care for my father and make important life decisions for him. I work nights full time and average about 1 1/2-2 hours of sleep a day because my father cannot be left alone. Maybe I am just too emotionally attached to make any decisions by myself but I am just so afraid that if another doctor goes near his brain that they will kill him. Do you guys have anything to say, either to encourage or discourage having another angio?
Michelle B, it sounds to me like you are thinking clearly. I am sorry your siblings have not been understanding or supportive. Further intervention is a choice, not a requirement. Your and your dad can choose what is right for you. Sending positive thoughts your way!
Thanks Dancermom. We could use the positive thoughts right now. The slow progress can be so depressing.
I also had a stroke during an embolization for an AVM on my ear and scalp but outside my brain. The embolization doctor would not take any responsibility for what happened and I had to find help in another state. I totally agree with Dancer Mom. Further treatment is always a choice we can make and sometimes the "watchful waiting" approach is what is appropriate. I'm not seeking further embolizations at this time and I'm 57. Family members deal with grief in different ways and it sounds like your siblings are grieving the loss of the father they knew before the stroke. My family never acknowledges that I have an AVM or had a stroke. That's their way of dealing with it and I get no emotional support from any of them which is sad. I'm sorry you are not getting any support from your family. Your Dad is very fortunate to have a loving daughter like you to care for him. When your Father's care gets over-whelming, maybe there is some respite care available in your community to give you a chance to rest and re-group. Check with the social worker at a hospital near you or your local Council on Aging. God bless you and your Dad. Kim
michelle b, sorry to hear about you dad, one of the doctor that i when to when into my main vain and then put glue around the avm and that work better. that will stop that one but it will not stop it from coming up again. but he will be in thier for two days and that all. it mske me mad what the doctor do, they know about it but don’t know how to fix it. i lost my house and all my money to this illness and still dealing with it today. i have my good day and alot of bad days but i keep fighting it each day. i’m teaching doctor about thos illness and have to tell them what to look for and at, and that is a sad day when i have to do that. all most doctors just us us a test dummy. ( if i would you i ask the doctor can they go in the vains and put glue around it and what do they think and see that will work better for him. my prayers are with your father at this time and your family. i hope they found a way to fix it ilness one day, but if they don’t in my illness get my first, i just think God you letting me be the help i can be for the next person that come after me. be bless
As with any medical procedure…there are some risks with an angiogram. However, embollization was much more invasive. I am so sorry that it did not turn out well. It really sounds like your siblings are angry and want to lash out at someone.
My father is 88 and I would love him to be as he was at age 60. The reality is that will never happen. It is one of the hardest things in life is to see our fathers change.
BTW if your father had a stroke…that is not your fault. You could not possibly have controlled that event. I am certain the doctor explained the risks of an embollization prior to surgery to your father.
You do need to take care of yourself. Maybe this link will be helpful…http://www.aarp.org/home-family/caregiving/. You will be on my prayer list!
Michelle, I’mm so sorry that you’re going through this WITHOUT the support of your siblings!! The fact is your father could have had this damage with the bleed alone. Had the bleed continued, without embolization, your father would have had more damage with worse deficits; likely leading to coma and death. It sounds like he needs nursing home care. A social worker at the hospital could help you, with either nursing home OR home nursing care. You can’t do this alone, especially working full-time. You’ll get run-down and won’t be of any help to anyone. Here’s a question to ask the doctor: is another angiogram going to change the course of treatment? In other words, if there is a bleed & they do another embolization, will the damage that’s been done be reversed? I hope this helps. Your father is truly blessed to have YOU as his daughter. Sending prayers your way. **Excuse any errors; I had a stroke following surgery & my vision is poor right now.
Michelle, I am Sally, age 72, with an AVM that was accidentally discovered 8 years ago. Thank God I have never had a symptom from it.
May I suggest :
1. Make appt. with the doctor and take a clear thinking person with you who could help you recall all that the doctor says.
2. Write down your questions on a sheet of paper and use it during the appointment to choose the questions you will ask. If possible , write down the doctor's answers and have the person who is with you do the same.
a. What are the risks of an angio ?
b. If the angio is done and the results are good, then assumedly there's no further or different treatment, is that correct ?
c. Or if the results of the angio show further treatment is required, what would that be and what would the chance of improvement be? And over what period of time would it probably occur ?
d.What is the risk of not having the angio performed ?
If I were you I would HAVE to know the answers to these questios before I could make a reasonable and fair decision. Remember it is YOUR decision. NOT the doctor's ! I don't blame you one bit for questioning all this. I believe you will find comfort in making a decision once given all the information that was suggested you ask the doctor herein.
God bless you. You must also take care of yourself. find a way to get some sleep ! Sally
Hi Michelle with 2 L's, this Michele with 1 L :)
I agree with what dancermom said in that further intervention IS a choice and NOT a requirement. This is something that only you and your family can truly decide, but, as with many life decisions, usually one has the answers, in their heart.
I'm so sorry that your siblings are not being supportive. It seems that the character flaws within people have a tendency to "surface" when life provides it's most difficult challenges...
Anyway, I think this is something that you have to look within yourself to decide. If it were me, I'm certain I would do a lot of research, talk to as many qualified people as possible and then, ultimately make a decision. Good luck to you and to your Dad :)
Hi Michelle,
I have several suggestions for you to at least think about please.
First, you need respite care assistance to help take care of your Dad. No one, not even a superMom, can get by very long on such little sleep. The end result of that is that YOU will become ill, and the problems will get worse. I would try to go to his general Doctor, a county health agency, a hospice (for their recommendations), your church, whoever, that can help you get some additional care for your Dad.
I am saddened to hear your siblings are such clods............ It is bad now, but could get worse, especially if your Dad has any assets. Or if all his kids are named as CO-executors in his will.
If your Dad is coherent (or is so at times), I suggest you have yourself named as Medical Power of Attorney, Financial Power of Attorney, and have a Living Will drafted. I'm guessing the hospital had you both fill that our prior to his surgery. If not, it could be really important soon if you want to put Dad in a rehab place and your siblings balk at the idea as wasting money...........
If you can get this much, I think that's the minimum. My disappointment hearing about your siblings suggests that your Dad through his attorney have his will changed to leave an appropriate amount to his kids who have abandoned him (hint: Lump of coal! grin). Or have him leave the distribution amounts up to YOU! Your Dad would have to be totally coherent in front of witnesses and the lawyer (hopefully non-family who have known him a long time and can vouch for his mental acuteness) to make this happen. Suggest he name you and one of your adult kids (if you have one or more) as executors.
Then when the time comes, you can choose to give them what they deserve or an equal share.
I've seen this scene play out in my family and those of friends. People think "Oh, it will never happen to us." WRONG, and the more $$$$ involved, the worse it can get.
Hope this info helps. Best wishes to you, your Dad, and your family.
Ron, KS
This is Sally , again, age 72, who wrote you a few minutes ago I have an AVM that was accidentally discovered 8 years ago and I have never had one symptom from it. Praise God. I failed to mention the only treatment for my AVM was to do gamma knife surgery. I did countless research with several neurosurgeons and other physicians. I was repeatedly told I had the option of gamma knife or do NOTHING, that my age was in my favor that the AVM had never given problems and I could possibly ultimately die without any problem with it. On the other hand, it could kill me in an instant tomorrow. I chose to do NOTHING because there was no guarantee or high percentages that gamma knife could obliterate my AVM even over a period of time. And I was as fearful about the gamma knife and any negative results, which I learned there were a lot of them, that it could leave me with as I was the AVM bursting ! This was approved and/or accepted by all the doctors as it was my choice . I no longer have the choice of gamma knife as I am over 70 now, as advised by my neurosurgeon here in Birmingham, Alabama. I am most grateful for my decision. I am in great health, so far, and have enjoyed the last eight years without any medical problems or medical interventions . Take care, SAlly
Hi MicheLe (one L),
Thanks you for the laugh this morning (one L, two L's). I love it!
Did you notice that both you "L's" live in iLLinois????????????
Best wishes,
Ron, KS
Before my AVM ruptured I worked as a cardiac surgical ICU nurse and helped start a palliative care team in our unit. The main reason I worked on this is because many medical decisions (with far-reaching implications) are often made by family members in moments of desperation without much thought to quality of life. Quality of life is important not just for the patient but for the family members of that patient. I know from my family (not from my memory) that it was not safe to leave me alone after my initial bleed and with each embolization because I wasn't able to think clearly and was impulsive necessitating a family member to stay with me while my live-in girlfriend worked. My advice to you would be to ask yourself and the physician what an angiogram would mean: If it shows the AVM is still there, does that mean more surgery? If it is gone, your father is cured but whatever deficits he has will likely remain. I'm not saying this to frighten you or to sway your decision one way or another, I'm just offering up my opinion from my personal and professional experience.
He Michele/Michelle,
Suggest you friend each other to send more personal info.
Just be safe you know.
Ron, KS
Thanks Kim. My fathers surgeon was the same and would not own up to making a mistake. The other doctors keep stressing the fact that this surgeon saved my fathers life but once the surgery was over, he disappeared and let his associates take over for him answering questions with unclear answers. I found a new interventionalist but do not trust any doctor now. My father is so weak still. And I agree they are mourning the loss before its gone but he misses them so much.
Thanks Donnell. If the doctors are listening to you, that’s a step in the right direction. I know this is such a new field of expertise but the doctors need classes on how to explain to family the problems that can occur. I’m sure that my father would not have had the embolization if he knew he would end up like this. Praying for you.
Thanks for the link Barbara. I will be sure to check it out when I’m on break at work tonight. If the doctors had explained the risks, I am not sure my father would have had the surgery. He was walking and talking when he was admitted. But, it is what it is and the only thing my family can do is let them know they love him and are there for him.
He was in a nursing home during his rehab and I think I was more of a mess then. I was the only one who would visit him and the thought of being alone every day just tore me apart so I was there every day. I know its a lot of work having him live with us but I know he won’t be alone and he is surrounded with people who love him . Even my pups that used to bark when he came to visit have become his protectors and companions. Thanks for the advice on questions to ask. You worded it well and it will be one I ask as well.
Thank you for your kind words and advice. I wish I had someone I could take with me. I will take your advice and write questions down and ask if I can record the conversation so that if I miss or forget anything, I can listen again.
Thanks Michele and Ron. She made me laugh too. It is good to know that deciding not to go agead with or going ahead with further examination and/or treatment is a decision to be made by the family and not the doctors. They can be so pushy.