Hi I'm new to the group. I'm haveing my first on May 26 will anyone share with me their experence.
I would like to hear both positive and negative results Pls. excuse my spelling since my bleed i have problems and forget get words when i am talking.
Hi Sheryl. You have to be feeling pretty stressed by now since the countdown has begun. Please check out these sub-groups...they might help you feel better!
http://www.avmsurvivors.org/group/musicaldedications
Embos, while serious, aren't bad generally. Most pain will be in your leg where the cath goes in. Plus you have to lie on your back for six hours AFTER they remove the tools. Chari (wife) hated that part, cuz you've already been flat on your back for hours, then not being able to move was painful.
One time in ICU, she was watching the clock, counting down her six hours. The RN said, oh, no one's come in to remove it yet. Chari was livid!
Every embo following that Chari before STARTING the embo, made a loud pronouncement: "WHO IN HERE IS GOING TO REMOVE MY CATH? I EXPECT YOU TO WALK BESIDE THE GURNEY TO ICU AS I'M WHEELED THERE, SO THAT YOU CAN IMMEDIATELY REMOVE IT." She didn't have any issues after she started using that phrase.
Might have a headache following. If you currently have a bruit, it might get quieter following.
Typically go from embo Operating Room to ICU, stay there overnite, and are discharged right from ICU. For us, we always rested all of the day of release from hospital (mostly cuz you can never get any rest in ICU), maybe half of next day, then mostly back to normal activity.
Hope this helps.
Ron, KS
Thanks Barbara The talking dog really mad me laugh for the 1st time in days!
Barbara H. said:
Hi Sheryl. You have to be feeling pretty stressed by now since the countdown has begun. Please check out these sub-groups...they might help you feel better!
http://www.avmsurvivors.org/group/musicaldedications
Hi Sheryl,
I had an embolization last May - a year ago today. The procedure was fine but I agree with Ron's wife, the lying flat on my back afterwards was the hardest. My surgery was 6 hours and then I spent a couple of hours in recovery, followed by overnight in critical care -15 hours of flat on my back before the cath was removed and then a few more hours after that. In total, it was almost 24 hours. The lady in the bed next to me had a similar procedure done and no back pain. So, I guess it will really depend on if you have back issues to begin with.
Besides the back pain, all I had was a headache for a few days and uncomfortable where the cath was for a few days. After that it was back to normal routine.
I just found this website yesterday, so I am new as well.
Good luck with your procedure!
BL
Thanks soo much for the info. But did Chari have improvement after the procedure? Any negitive reaction, beside the pain and time? How many has she had?
Thanks Sheryl
Ron, Kansas said:
Embos, while serious, aren't bad generally. Most pain will be in your leg where the cath goes in. Plus you have to lie on your back for six hours AFTER they remove the tools. Chari (wife) hated that part, cuz you've already been flat on your back for hours, then not being able to move was painful.
One time in ICU, she was watching the clock, counting down her six hours. The RN said, oh, no one's come in to remove it yet. Chari was livid!
Every embo following that Chari before STARTING the embo, made a loud pronouncement: "WHO IN HERE IS GOING TO REMOVE MY CATH? I EXPECT YOU TO WALK BESIDE THE GURNEY TO ICU AS I'M WHEELED THERE, SO THAT YOU CAN IMMEDIATELY REMOVE IT." She didn't have any issues after she started using that phrase.
Might have a headache following. If you currently have a bruit, it might get quieter following.
Typically go from embo Operating Room to ICU, stay there overnite, and are discharged right from ICU. For us, we always rested all of the day of release from hospital (mostly cuz you can never get any rest in ICU), maybe half of next day, then mostly back to normal activity.
Hope this helps.
Ron, KS
Thanks for ur reply, and welcome. Did you see any improvement in ur condition? What are you exsperenceing ? I more worried about the out come then the procedure its self. As you can see i have a hard time w/spelling and remembering words. As well as memory loss…
BL said:
Hi Sheryl,
I had an embolization last May - a year ago today. The procedure was fine but I agree with Ron's wife, the lying flat on my back afterwards was the hardest. My surgery was 6 hours and then I spent a couple of hours in recovery, followed by overnight in critical care -15 hours of flat on my back before the cath was removed and then a few more hours after that. In total, it was almost 24 hours. The lady in the bed next to me had a similar procedure done and no back pain. So, I guess it will really depend on if you have back issues to begin with.
Besides the back pain, all I had was a headache for a few days and uncomfortable where the cath was for a few days. After that it was back to normal routine.
I just found this website yesterday, so I am new as well.
Good luck with your procedure!
BL
Hi Sheryl,
Chari had about 4 or 5 embos. during one of the embos, they found on the scans an aneurysm, so she also had conventional microsurgery to fix that PRIOR to having microsurgery a few years later to remove the last of the AVM.
It was after one of the embo (I think) that she developed "foot drop", which is similar to what many stroke victims experience and more lost of motor function in her right leg. She worked with physical therapists, wore a foot appliance for about 10 yrs, and finally had ankle surgery to physically correct the foot drop. Think that surgery was called post anterior tendon transfer. They shortened on of her foot tendons,and split one so that it attaches to the outside of her foot in addition to near the big toe. She will always have an abnormal gait, but working with a personal trainer has built up the muscles in her leg that still work, so she is walking much better. The AFO (foot brace) hurt her calves and caused her back to hurt due to unnatural walking.
The bruit (noise) in her brain was greatly reduced after each embo, to the point it finally left. The reduced bruit, which is when you hear the sound of the blood flowing through an AVM, was a good sign that the AVM was smaller.
Hope this helps.
Ron, KS
sheryl adrienne said:
Thanks soo much for the info. But did Chari have improvement after the procedure? Any negitive reaction, beside the pain and time? How many has she had?
Thanks Sheryl
Ron, Kansas said:Embos, while serious, aren't bad generally. Most pain will be in your leg where the cath goes in. Plus you have to lie on your back for six hours AFTER they remove the tools. Chari (wife) hated that part, cuz you've already been flat on your back for hours, then not being able to move was painful.
One time in ICU, she was watching the clock, counting down her six hours. The RN said, oh, no one's come in to remove it yet. Chari was livid!
Every embo following that Chari before STARTING the embo, made a loud pronouncement: "WHO IN HERE IS GOING TO REMOVE MY CATH? I EXPECT YOU TO WALK BESIDE THE GURNEY TO ICU AS I'M WHEELED THERE, SO THAT YOU CAN IMMEDIATELY REMOVE IT." She didn't have any issues after she started using that phrase.
Might have a headache following. If you currently have a bruit, it might get quieter following.
Typically go from embo Operating Room to ICU, stay there overnite, and are discharged right from ICU. For us, we always rested all of the day of release from hospital (mostly cuz you can never get any rest in ICU), maybe half of next day, then mostly back to normal activity.
Hope this helps.
Ron, KS
Thanks Ron I hope ur wife continues to improve. My AVM is too lg. to remove, they are trying the glueing to slow down the blood flow to prevent a stroke or anothe bleen. I am so scared something might go wrong and I will have permenit damage of some sort. I’ve beens so stressed and thinking of suicide. I’m seeing a therapist Monday and my surgery is Thursday. I just don’t know weather to go throught with the procedure.
sheryl adrienne said:
Thanks for ur reply, and welcome. Did you see any improvement in ur condition? What are you exsperenceing ? I more worried about the out come then the procedure its self. As you can see i have a hard time w/spelling and remembering words. As well as memory loss......
BL said:Hi Sheryl,
I had an embolization last May - a year ago today. The procedure was fine but I agree with Ron's wife, the lying flat on my back afterwards was the hardest. My surgery was 6 hours and then I spent a couple of hours in recovery, followed by overnight in critical care -15 hours of flat on my back before the cath was removed and then a few more hours after that. In total, it was almost 24 hours. The lady in the bed next to me had a similar procedure done and no back pain. So, I guess it will really depend on if you have back issues to begin with.
Besides the back pain, all I had was a headache for a few days and uncomfortable where the cath was for a few days. After that it was back to normal routine.
I just found this website yesterday, so I am new as well.
Good luck with your procedure!
BL
Sheryl,
I urge you to have a heart to heart with your therapist about your feelings. We understand the scariness of the waiting and not knowing. It is sometimes more stressful than the actual treatment!
When Chari's AVM was first discovered, we were told it was too large to fix and she should just go home and try to live a normal life (with the time bomb ticking in her head). Same or similar stress as you feel now, right? She was told that only if she were bleeding would they operate, cuz she was gonna die anyway if they didn't operate. But if they operated, she might have severe deficits and never be the same.
That was about 1991. About 1996 when we started inquiring again, technology had improved enough that DRs were confident they could remove the AVM.
So I urge you not to give up. Life is too wonderful to cut it any shorter than it already is. Keep hope. Please continue to let us know her how you are doing. There's a lot of caring people here, and we don't want to lose any one of them, OK?
Ron, KS
Hi Sheryl,
I agree with Ron - please speak with your therapist tomorrow and discuss your feelings about the procedure. One of the hardest things I have felt going through all this is the unknown!
I have a DAVF (dural AV fistula) which is similar to an AVM as it is a malformation of the vessels. DAVFs are usually formed via some head trama or blockage. When they did my embolization, they could only block 80% and did radiation on the remaining 20%. Unfortunatley, DAVFs can regrow themselves if they do not remove all of it. For about 10 months after the surgery, I felt great. But in March I started to have episodes where I felt strange - fuzzy headed, loss of concentration, loss of energy, followed by extreme tiredness. Doctors are thinking I may be having a type of seizure. Waiting to see more doctors...
That being said though, I do not regret having the embolization. For one thing, even though they only blocked 80%, I know there is only 20% right now to cause me trouble. If it is seizures - I will deal with that. If the DAVF grows back, then we will try something else.
So, Sheryl, try to think of the procedure as the first step in the right direction! Yes, there may be bumps along the way but anything the doctors can do to help stop the AVM from bleeding again - it's worth it!
BL
Ron, Kansas said:
Sheryl,
I urge you to have a heart to heart with your therapist about your feelings. We understand the scariness of the waiting and not knowing. It is sometimes more stressful than the actual treatment!
When Chari's AVM was first discovered, we were told it was too large to fix and she should just go home and try to live a normal life (with the time bomb ticking in her head). Same or similar stress as you feel now, right? She was told that only if she were bleeding would they operate, cuz she was gonna die anyway if they didn't operate. But if they operated, she might have severe deficits and never be the same.
That was about 1991. About 1996 when we started inquiring again, technology had improved enough that DRs were confident they could remove the AVM.
So I urge you not to give up. Life is too wonderful to cut it any shorter than it already is. Keep hope. Please continue to let us know her how you are doing. There's a lot of caring people here, and we don't want to lose any one of them, OK?
Ron, KS