Scared

Hi everyone, my name is Danielle, and my husband suffered from an hemorrhagic stroke due to an AVM. This happened on 11/19. We have an 8 month old son. My husband is only 33. We were told he has significant damage that has affected his eyesight, memory (long and short), he would not walk, talk, move much at all. That he “might” recognize tone of voices as familiar, but may not know the person. This was told to me on 12/10/10. As of today, he can move his left side, shake his head yes and no to questions, and can see out of both eyes. He continues to improve in baby steps. He is currently at RIC (Rehab Insitute of Chicago). I really like the facility so far. The people there are very kind. I am trying desperately to remain positive for my love and our son. How could a doctor’s prognosis on 12/10 be so way off compared to how he is doing today? What can I hope for? What should I be realistic of? I miss him so much.

He is also now crying when he sees me or our son. He will also cry when we say goodbye. Yesterday, his mom put the phone to his ear so I could speak to him, and he began to cry then. I know he is comprehending and recognizing loved ones. Did anyone else experience this kind of emotion? He is still not able to talk.

Danielle, you have so much to remain positive about!! The fact that your husband has far exceeded doctors expectations, is nothing short of a miracle. I cannot speak for your doctor specifically, but the doc was prolly going off past experiences and unfortunately it sounds like your husbands odds were really not in his favor. There have been many instances where people have not seen the type of recovery your husband has experienced, especially in such short time. It may not seem like such a short time when your in the thick of it, but in terms of the type of stroke your husband had, his recovery is turning around quite nicely, but it is a long-term recovery process. So REJOICE!!!

Doctors focus on developing realistic expectations, but that’s all they truly are, expectations!! Doctors cannot truly know how well a persons recovery will be until the actual recovery process begins. Your husband is a special person to defy such odds, rejoice in his baby steps and be encouraging at all times…hopefully his recovery grows from baby steps to strides!!! Best wishes going forward!!

Thanks, Ray

Danielle
You may want to ask rehab team about Hyperbaric Oxygen Therapy as a Certified chamber maid I have seen some amazing things . Its not the silver bullitt for every body but oxygen therapy is over looked a lot
Our though will be with you and your family Gordon

Thank you Ninibeth,
I am new to this network and reading the reponses I received today has brought me to tears. I am so glad I found this site. If for anything to just be around others who understand. Is there any advice you would give me to help Carlos the most? I am trying so hard to understand how he must be feeling. I want to make him as comfortable as possible. He understands me when I speak to him. He is nodding yes and no more and more- and answering correctly. He also gets emotional when I do. Today, he thumb wrestled me. He put on chapstick today. When he handed it back to me, I said to him, “Now you have to give me a kiss” and he attempted to pucker his lips and moved towards me. It just melts my heart.

Ninibeth Ramirez said:

Hi Danille, I understand how it is for you and your family going through this hard time. First of all thanks God your husband is alive. But the prose’s of getting back to normal is hard and sometimes exhausting. Don’t lose faith. He needs to know that you are going to be at his side all the way.


I had an avm hemorrahge on my left temporal lobe. When I wake up from coma I could not speak and didn’t remember how to move my legs nether mi hands. I also had problem with my memory. I could remember the people who went to see me at the hospital but I didn’t remember their names. It took a will, but the therapies help me a lot. I steal have problems with my memory but I learn strategies how to manage.



I recommend tacking one day at a time. I don’t think that there is a way to now how much time it tacks to recover. The desire to improve is very important as recognizing that this is a new experience for all of you.



Do not despair nether lose hope. What you explain about your husband is normal for this condition so don’t be scare, on the contrary enjoy every new improvement…



Be strong. If you need someone to tack don’t hesitate.

Ninibeth

Thank you Raymond. Your scare looks just like Carlos’s. What happened with your AVM?

Raymond Downey said:

Danielle, you have so much to remain positive about!! The fact that your husband has far exceeded doctors expectations, is nothing short of a miracle. I cannot speak for your doctor specifically, but the doc was prolly going off past experiences and unfortunately it sounds like your husbands odds were really not in his favor. There have been many instances where people have not seen the type of recovery your husband has experienced, especially in such short time. It may not seem like such a short time when your in the thick of it, but in terms of the type of stroke your husband had, his recovery is turning around quite nicely, but it is a long-term recovery process. So REJOICE!!!


Doctors focus on developing realistic expectations, but that’s all they truly are, expectations!! Doctors cannot truly know how well a persons recovery will be until the actual recovery process begins. Your husband is a special person to defy such odds, rejoice in his baby steps and be encouraging at all times…hopefully his recovery grows from baby steps to strides!!! Best wishes going forward!!



Thanks, Ray

Very interesting. Thank you. I will research it and look into it. Did you try it? What do you know about it?

Gordon D said:

Danielle
You may want to ask rehab team about Hyperbaric Oxygen Therapy as a Certified chamber maid I have seen some amazing things . Its not the silver bullitt for every body but oxygen therapy is over looked a lot

Our though will be with you and your family Gordon

Hi Danielle,

RIC is a great place for your husband to be–I’ve heard that they do amazing things.

My husband was hemiplegic (half paralyzed) after his hemorrhage, and unable to talk or move purposefully for 4 months. After more time in rehab, he went on to college and grad school, and he recovered almost all of his physical abilities. So there’s a lot of potential for progress, even after such a serious event.

It’s very hard to predict how the brain will recover, so doctors’ predictions may not come true. Patients and their families notice improvement for years after–longer than the doctors track it.

Keep us posted on how rehab comes along!

Jorie

Danielle,
I know exactly where you are coming from; my husband’s story is similar to Carlos’ AVM. You really need to take it 1 minute at a time, not even 1 day at a time. With therapy Carlos will improve, please be encouraged by that. It sounds like he has made some amazing steps so far in such a little bit of time. Granted things will never probably be the same as pre-AVM but they can be great but just different. Keep the faith!
You all are in my prayers!
Blessings!
Marie

Hi Danielle,

My daughter went to RIC… the one one Damen. They were very kind to her.

As for your husband, first, so glad to hear he is exceeding expectations! Some things my daughter told me because she was able to communicate:

  • She was more tired than any of us could really understand

  • She needed us to tell her what happened to her and what happened throughout each day time and time again because her short term memory was adversely affected.

  • She felt very vulnerable. Even though we have a strong, loving relationship, she still felt vulnerable about being dependent on people for everything, of realizing she literally couldn’t care for herself.

  • She felt scared that it could happen again.

  • She wanted people around her all the time, especially her “special” people. She needed to know where we were.

  • After she came home from the hospital her days were very long to her. She so appreciated having visitors, emails, etc.

Wishing you and your husband all the best.

Hi Danielle,
Your story sounds a lot like mine what seems like a century ago…back in 2002. My hubby had complained about headaches and asked me to make him a dr. appt- this NEVER happens so I know something must be wrong. I was 2 mths prego at this time so we went in for an ultrasound and cat-scan for him on the same day…and surprise, we were rushed to the emergency at another hospital the same night. The tech feared he was an aneurysm or AVM bleed. I had to follow the ambulance with my 2 yr old and call family to pick up my daughter. They did and EEG and testing for the next couple of days. That’s when we found out my hubby had an AVM in the backside of his head. Shortly after he was put on Dilantin but had to get off it because he could not hold any food down and it was affecting his liver. He had an embolization treatment a few months after and was expected to be in rehab for 6 month minimum. My life turned upside down cuz’ I had just gotten laid off the week before all of this happened. I was told by a counselor to prep for him losing his memory, having to fed, and not walking ever again. My hubby was only 30 when this all happened and we were just starting our new family and lives together. Happy to say he was so determined and irritated staying in the rehab facility with older people, he managed to rehab himself and fully recover after 1 1/2 months. His surgeons and nurses were extremely impressed and feel the constant reminder of me and the kids gave him hope to get better and not give up. Since then, my hubby doesn’t seem to be the same person at times but he’s alive and so there’s nothing more I can ask for. Hang in there. My hubby had 2 Gamma Knife treatments since the embolization and is due for another MRI check up, but we’re waiting for our medical insurance to kick in first. I am worried that his AVM may be coming back but so far, so good… The only thing to do is take it one day at a time, and be thankful and make the best of each moment together…as a family
Sallie

I am so happy for you that your husband is making so many improvements. I think doctors try to prepare the family for the worst. They told my mom I would probably not live and if I did I would almost definitely be paralyzed and would take over a year to recover. I was walking a week after surgery and have no lasting damage. I was back at work less than two months after my bleed and released from the hospital with no therapy/after-care after 13 days. Stay positive. Keep your hopes as high as they can be. With the brain everything is so unknown. Hopefully, he will fully recover. I wish you and your family the best.

Hi Denielle,
Its sad to hear that your husband had to go through this but encouraging to know that he is on his way to recovery. My son (6 years old) had an AVM bleed in Aug 2009. Unfortunately he couldnt get the prompt treatment and by the time the neurosurgeaon operated on him, he thought it was too late and came back and told us my son was going to die. We hoped against hope. He was in coma for a month and a half. After he woke up from coma, he was unable to walk or talk for 2 more months. But today, he walks and talks and smiles and sings. He did suffer a huge damage (he lost his swallowing function totally and is on tube feeding even today). But we are still hoping that things will turn around and just stay by his side all the time and make sure he stays happy until he can start eating or drinking again.

I am sure your husband will come out ok, its just a matter of time. it took us almost 3 months to get a nod from our son. But once he nodded, we knew he was there and he’ll be back home one day. Since you are able to have some communication with your husband, please have faith and continue to comfort him and everything else will be fine with time. Can i ask which part of brain his AVM was? My son had his in cerebellum.