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AVM Survivors Network

Help - Recovery from Paralysis


#1

Hi everyone
My brother had the spinal avm surgery three months ago and unfortunately he still cant move. He is paralysed :frowning: . Is there any hope he can move again? Is it correct that if my btother have not had any improvement, he is not going to have improvemnt to walk? Some one told me that nerves can be activate in 2 months, if they wont it means that the nerves are not going to be active :frowning: .
Hope to see your message soon


Spinal AVM recovery
#2

Zahra,

Hi. I’ve moved you to your own thread. Hope this helps. Whenever you want to create a new thread, look for the + Topic button.

Much love,

Richard


#3

Dear Richard
Thanks for your help. Is my writing understandable? I chec here every moments to see sth which can help me but i dont. Sometimes i feel maybe my english isnt understandable.


#4

Zahra,

Your English is perfectly understandable. I think the trouble is knowing what to say to you to encourage or support you. You’ll find many people visit here to read and there is quite a lot of writing but very few of us, I think, have been in your relative’s situation.

Sharon Dawkins posted a great reply on one of your other lines of conversation: don’t give up! From my own point of view, I dont think I can help you directly. You need to listen to the doctors and take advice from them as to what they expect, how long it might take, etc.

Meanwhile, you are undoubtedly in our thoughts and minds. I nearly replied last night to your question about the ventilator but I really have no insight to give you. This is the greatest test there is, almost. I really hope your brother makes some progress. I do believe it will be VERY slow.

Lots of love,

Richard


#5

The only other thought I have is that i think @Charles3 went through much that your brother is going through, though Charles had a brain AVM, I think. From what I understand, even having been discharged from hospital, Charles is still very much struggling: to the extent that he is always in my thoughts.

Lots of love,

Richard


#6

Dear Richard
thanks a million for your care, it means a lot to me. my brother cant move his fingers or hands. He cant hold cellphones so he asked me to search about his condition. I couldnt find some thing useful about his condition in Persian so i google searched it in English and i found you. i tell him positive things that i read here and try hard to decrease hs stress.
About doctors… unfortnately we live in a small city where there is no doctor who can help us about AVM.
We talked with a doctor who told us he is not going to walk again because the nerves should be improved in the first two months… is it correct?


#7

Zahra,

I don’t know. You really need to rely on doctors for specific advice and my experience and reading does not give me the answers you seek. It may be you could contact doctors in another country for advice. I know the doctors in the US will advise on MRI results by email or post but whether they could reasonably give advice on any other front from a distance, I don’t know. You could always ask. If you can tell them at what point in his spine the operation was carried out, and give them (in the case of the US) English transcriptions of any clinic / operation notes, they may be able to give a second opinion. It is quite possible they will give the same opinion.

However, the advice I saw in a different thread which I thought was written to you but was in fact written to Amrit (re Khaira) was NEVER GIVE UP. Many people would say here that to give up is to accept the status quo – however the situation is now. Keep up your optimism and determination to get better. Be patient isn’t many ways but perhaps be impatient in other ways. If you get a bit of progress, grab onto it and do whatever physio therapy or other action the doctors tell you to get well. I’m sure many people will tell you that it isn’t by the will – the power of the mind – that people get better from many situations.

I absolutely hope you can make progress. I have no idea. But don’t give up yet.

It is a fantastic thing that we can write to each other from across the world and support each other. It is even more fantastic that you write good English because we would be very stuck without!

Very best wishes to both of you.

Richard


#8

Dear Richard
Thank you for your caring responses. That sounds hopeful to ask an american doctor who already has avm patient to tell us what he thinks about my brother condition. Do you know how i can find such doctor and contact him?
I didnt tell my brother what doctor said about the probability. I know he will Feel awful and too negative if i will tell him what i heard. I keep telling him that every thing is going to be ok and he just needs to think postive but i need to know the fact to try to do the best thing to him.
I still wonder is it true that the nerves have limited time to recove after the surgery?!!
Thank you in advance
Best wishesh to all


#9

Zahra, a couple of things to ask the Doctor is if the spinal nerve roots at each cervical level where the AVM was located were severed? If they were severed the connection is lost, and they would have to be reconnected. They should heal after that. So my questions are , what was the location of the AVM, can he sit up with help? Can he feel his but? because that is the lowest part of your spine and means he should be able to walk. I could not feel mine for the first 4 months.


#10

We have a whole section dedicated to recommending doctors and/or hospitals:


#11

Dear Richard. Thanks a million. I will check it


#12

Dear Tina you cant imagine how hopeful i am now because of your story. It makes sense that you couldnt sit up for the first four months but now you are ok. Thanks God. My brothers AVM is a cervical one. He cant feel his butt. He cant sit up unfortunately. He cant move his fingers to hold things. He has sense in his upper part of his body and in the bottom of his feet. I dont know why his right hand is bent hardly.
Thanks for your care


#13

Zahra, you cannot believe the recovery i have had. Can you find out which Cervical was involved? like C-3 TO C6? Did you say he could feel the bottom of his feet?


#14

Tina,

It’s a fantastic thing to find you made such a good recovery. Thank you for sharing this!

Richard


#15

I am still classified as disabled, but, yes the doctors thought I would never walk again. I believe I could be even more recovered if I could devote more time to therapy.

Tina Doscher


#16

Dear Tina i looked at his docment but i couldnt find any thing related to the label of the cervical unfortunatly. Yes he has sense on the bottom of his feet. Does it have any meaning?
Thanks a million


#17

@zahra1988 I am so sorry for your brother and for your family. It is so scary not to be able to move and when I had a massive stroke before my avm developed due to five blood clots in my brain I could not walk or talk. The doctors told my family it would take me 3 years to recover - I had my massive stroke in March of 2011 and then 2 more small strokes in June 2011 and then they found my avm in October of 2011. I has my 1st angiogram in Jan 2012 and went back to work part time in April of 2012. My scans in 2016 show no signs of the strokes I had.

Do not give up hope. I felt like a burden to my family at first having to do everything for me. I would even have my husband drag me to the laundry room cause I knew he would ruin our clothes…now I can laugh about it.

I went to all the physical, speech, and other therapy they assigned to me. It was very hard but I did it. I never gave up on myself. Even if I was having a horrible day I would still go outside to get the mail even if it was not a day we got mail.

My husband did a great deal of research on natural things that can heal the brain like coconut oil and turmeric but turmeric is a blood thinner so you should ask his doctor about that one. My husband would also rub the coconut oil on my body as well as give me some 1tsp in my tea or coffee.

I am also a candidate for a clinical study where they are going to drill a hole in my brain and inject stem cells into my brain. Studies are going on here at in California at UCSF and Stanford and they are having good results with people who do have paralysis. I have weakness and tightness on my left side and brain pain. In the UK they started their studies I believe in 2012 - I am not sure if your brother could travel to the UK but it might be worth it to investigate that.

Doctors always give us the worst case and I feel like they see so much bad stuff its hard for them to pass on hope to their patients.

You are a great sister to be searching for help for your brother. Please tell your brother he is in our thoughts and prayers and not to give up!

Hugs
Angela


#18

Dera Angela
Hi dear Angela, I am sorry that you had to deal with such things. I am happy you are doing better now. I will pray for you and all the people around th world to have a better life.
Unfortunately my brother cant afford to travel to UK. I used to say money is not important and the most important thing is having caring heart and not caring about money but now i can see no one would do any thing to him without money (even his doctor who knows how hard his life is).
I dont know why such things should happen? Why he has to stay in his bed and having bed sore and not to be able to even move his fingers? Why he shouldnt be healthy to do sth useful in his life to others, such as his little and cute children? Why my caring and old parents have to deal with too many problems in their life?
I wanted to not be on speaking terms with the God but I noticed he is the only one who can help us. And now my family and i just keep crying and begging him to heal my brother and all the people who need it.
Wish you the best dear Angela


#19

yes it is hard to think why is this happening? And health care is so expensive. After my 1st stroke and being in a coma my medical bill was a 1 million dollars. Thank goodness I was double insured.

I recall after my first angio/embolism my neuro asking if I heard the whooshing sound - I said yes but then I pray and it stops. He said well maybe we should pray away your avm? I said if you dont think I have survived two rare brain issues in the last year had to do with my prayers and my friends and family praying, I feel sorry for you. Anyway we all kept praying and my next brain angiogram 3 years later showed it had sealed it self!
So I will keep you and your family member in my prayers.
Bigs hugs
Angela


#20

Dear Angela.
Thanks for your care. I really apreciate it. It makes my family and i to know some are praying for my brother. God bless you