Recovery experiences?

Hello everyone,

My sister had her AVM rupture 12 days ago. She was operated and AVM removed.
She was in coma for 7 days. After 7 days that she opened her eyes for few minutes.
The next day she opened her eyes for 10-15 minutes.
Now she opens her eyes 20-30 minutes, but she is unresponsive for anything, and she just looks at certain things in ICU. Now she has blood pressure 200 and running fever and diarrhea.
My concern is that her unresponsiveness, does it take lot of time to recover?
Anybody here experienced similar situation?
Also about BP,fever is it worrying?
Please share your experiences. we are worried a lot

Hope,

It takes a long time. I found this useful video about a month ago:

It makes for very difficult viewing but I hope it helps. There are lots of people here who’ve been through some of this. Great outcomes can be had. I hope some of the folk who’ve been in as difficult a situation as your sister can encourage you that really good recoveries can be made.

Very best wishes,

Richard

HI,

It really depends on where your AVM is located in your brain.

I have had an AVM on my front left lobe.
I am 43, and after a 7 hour operation on the 22nd feb 2018, I am fit and well, but also INSTANTLY cured from the AVM. I was discharged from Hospital after 5 days.
I have a higher rate of having Epilepsy, but after the op, that rate remains at the same level. I have not suffered from any seizures, and it is unlikely that I will.
I have been lucky, suffering from a small amount of memory loss. Otherwise, i seem to be fully functioning.
Each condition is different to the next, and since each condition can effect a different part of the brain, the results and experiences can vary massively.

I hope this helps, and I wish your sister all the best for the future, and also to you and your family.

Hi Hope:

Glad you found us on this site. All of our recoveries are different. My AVM in my Cerebellum ruptured and I was in a coma for about 2-weeks. Due to the location, surgery was not an option for me. I had Gamma Knife Radiation. My bleed sealed itself, which is unusual, I’m told. It took another 3 weeks or so for the swelling in my brain to subside. During all this time, I lost a lot of short term memory, could not concentrate, had some vision problems. My doctor’s worked feverishly to keep my blood pressure under control. That was the key to my recovery. Your sister will start to come around in her own time. It can’t be rushed. It just has to take all the time it needs. I am now just past the 3-year mark, and I still have some deficiencies. However, my deficiencies are something I can handle considering the alternative. I pray your sister comes back to you real soon. P&P (Prayer & Patience) is my recipe and I gladly share it with you!

Sharon D…

Thanks Richard, hope she recovers

Thanks Omar

Thanks Sharon, hopw the Almighty will help her recover

Now her BP is normal, but her discharge is still there. Doctor did CT scan and told that little blood is there which will drain off. We are hoping that this will drain and plan to remove tube and ventilator. Doctor has given a positive prognosis

Sounds good. Stay positive. Definitely be positive with her. Encourage her (especially if she is not communicating with you) that she isn’t trapped in her body. She will get better and be able to speak and recover but it will take a lot of patience and determination.

I’m not sure I know what you mean by “discharge”.

Hi Richard,
discharge I mean of CSF fluid. Now they have done VP shunt to drain CSF fluid.
And her BP is high in 160,
Hoping for BP to come to normal

Hope,

I’m pretty sure that your sister needs all the pressures to get back to normal before her brain will recover well. Obviously it depends on how much bleeding her AVM did and what damage that has done but I am sure that excessive pressure of any kind will suppress a recovery.

Keep talking to her, encourage her, let her know you are there and I hope for the best!

Richard

Thanks Richard for the reply,

She is having BP in high of 160 mostly when has her eyes open, I feel is she getting tensed and may be she is in mix of emotions when she is awake. When she is mild sedated her BP is allmost normal.

That feels true, doesn’t it? It is difficult to know how well she understands what is going on around her, and if I we’re in her situation and I woke up, I expect I would be confused, concerned, worried. The only thing I can think of is to be there with her and speak to her. Tell her it is normal to be confused and unable to talk to start with but she can get better. It may well take a very long time (and there is obviously a risk she doesn’t recover but it is a good thing that the doctor is positive).

If you have nothing to talk about with her, maybe take in books to read to her to help get through the hours and to help her hear words, especially if they are stories she knows and likes, as they may help her to reassemble what words mean. Tone of voice is probably most important.

I’ve no idea what im saying… Whether these are good medical things to do. Just making suggestions.

Lots of Love,

Richard

Omar,
Glad to hear your experience went wel. Did your AVM rupture and cause a hemorrhage prior to your surgery? That is a very different scenario than being removed before rupture. Glad you’re recovering well.
Allison

Hi Alison,

Yes I had had a bleed prior to my AVM being removed. The bleed showed up in my MRI scan, and was confirmed upon surgery, where a yellow liquid was seen by the AVM in my front left lobe.

Thankfully the bleed had no known consequences on me.

Kindest,

Omar