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AVM Survivors Network

Help - Recovery from Paralysis

#21

Hi Zahra

As your brother has sensation in the feet, you should be very hopeful and optimistic about your brothers recovery. He needs lot of therapy and with intensive therapy he will walk in few months or a year.

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#22

Dear DadfromNaperville

Do you really think so? Thank you for your care. He cant move his fingers, he cant sit up, he has muscles spasm and …
Wish you the best

#23

Hello
Not sure if you can get this or order this- I get it from Amazon and it really helps relax my muscles and spasms and its natural - this might help relax his muscles so they can start to heal. You might want to get the oil


Hugs
Angela

#24

Dear Angela
Thanks a lot for your care. You have a big heart. Please pray for my brother. What woul american do to avoid bed sore for peop

#25

@zahra1988
I would suggest since he is having issues moving can you massage him? You can use coconut oil on him which is a natural anti bacteria, anti fungal and anti inflammatory
Also if its hard to move him try putting pillows under him
Here is what I found on the web- but really he will need someone to move him often to prevent the bed sores-
When the body doesn’t get any movement, it can hinder adequate blood flow to the skin, depriving it of nutrients and oxygen. If you are currently on bed rest, there are several things you can do to prevent bed sores.
Change positions frequently
When you change positions often, there will be less pressure on your skin, reducing your risk of developing pressure ulcers. It is a good idea to reposition your body at least every couple of hours. For example, if you have been lying on your back for a while, turn to your side. If you are unable to switch positions on your own, ask a family member or caregiver to help.
Keep skin clean and dry
The cleaner and drier your skin is, the less likely it will develop bed sores. Dip a wash rag in a bucket of warm water and mild soap and clean your skin with it. You will likely need another person to help you clean the hard-to-reach spots. Then, pat your skin dry with a towel. If you rub too hard, it can lead to skin irritation.
Use pillows
Another effective way to prevent bed sores is to put pillows between parts of your body that press against each other. National Institutes of Health recommends placing a pillow under your tailbone, shoulders, heels and elbows. If you are lying on your side, it is better to put the pillow between your knees and ankles.

also I found this on amazon- it has good reviews -

Hope this helps
hugs
Angela

#26

Hi everyone.
Thanks dear Anjela :broken_heart:

#27

Charle3 here. Yes right side I can move now but cant hold anything or stand or walk. MY right leg just curles up. I can move fingers and arm with lots of trying. Things are moving along but still cant feed myself use bathroom or walk or stand. I can eat solid foods. Insurance company siad my therapy was not medically neccessary so stopped everything. I am getting very frustrated and bored.

#28

Charles / Dan,

It’s great to hear from you. And I’m glad you’ve posted in Zahra’s thread as you’re reminding me of her brother. Zahra: I always hope the best for your brother but I hardly dare ask.

Charles,

I think you’ve got the toughest deal. To be so ill and to have the state and the insurance company not helping you is really bad. You have every reason to be down about it. But do you know what? Recovery comes from within. I know you need support and you need to know the right things to do but if you’re going to get better it’s going to be you being determined to beat this thing that will make it happen. I also know it is difficult to have that determination when the road has been so long and the progress almost imperceptible. What can I do to help you but try to drive your determination? So that’s what I’m trying.

I watched an amazing film back in February called My Amazing Brain. It sets out the recovery of a gentleman from a stroke. I don’t know if you can access a version of it that will play in the US but look for a version of it that you can access. It is Richard’s determination that carries him through, I think, aided by perfect healthcare.

Withing you all the very best.

Richard

#29

I am not paralyzed but I am weak on my left side which is known as hemi paresis but I couldn’t move anything for the first 3 months and with alot of physical therapy and occupational therapy I have been able to move (twitch) one finger and one toe. I also walk now with a walker, cane, and crutch. It took alot of hard work and pain but now in July 11th Im getting botox for my spasticity and keep progressing. My therapists and doctors have been shocked at how fast I have recovered. What I was expected to possibly heal in 2 years, I did it in 3 months. And now Im 10 months in walking with Nordic poles in therapy. I do several exercises at home too and all day. So with the right training from the therapists and determination he too shall heal. I wouldn’t entirely believe the doctor’s timeline of recovery since many of us have shocked our doctors and shut them up on limits and gone beyond their expectations. Definitely alot of prayer, and go hard but not too hard in therapy. Your brother will need your support but he will get there. I too think he will walk. Tell him to keep that as his goal as for fingers and toes and holding things, that’s one of the last things you gain back. He will lift his leg or arm first with alot of effort after alot of therapy and I wasn’t told this but my cheat to being able to do it is to focus on lifting your knee or elbow. Eventually I did lift it. Now I’m working on my ankle in therapy and it has moved but again not to my doctor’ Expectations but remember they are not the ones going through it, they are basing it on knowledge or from perhaps another patient who had an avm and not two cases are alike

#30

Hi Zahra,
I hope that your brother managed to recover.
My sister had an AVM in the cervical area. Before going to treatment, I was considering the worst results that the treatment could come to. One of the things that worried me was damage to the nerves, so I was considering stem cell treatment to regenerate the nerves.

Maybe you want to consider stem cell treatment in case your brother suffered nerve damage.

#31

Hi Zahara, just a note. My neurosurgeon told me he had a patient who was showing recovery after 10yrs. My neurologist said nerve healing is unpredictable and each case unique. But followed that by saying that years later nerves can show improvement.

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#32

Hello Zahra, I also had surgery for a ruptured AVM in my spinal artery, I was lucky to have been able to have the surgery done very quickly after the symptoms appeared, less than 24 hours maybe. The doctors told me it was a factor in my recovery. Was your brother able to have the operation soon after symptoms showed up? What helped me most is treatment that works to rebuild the pathways where energy is carried and tbe nerves. Regular acupuncture helped and also yoga practice. In the beginning he may need lots of help and assistance to put his body into positions and props to hold him there, but it will provide benefit to work with breath to open lines of energy.
I’m wishing you and your brother the best in recovery.
Hannah

#33

Hi It is Dan for Charles finally getting back to everyone who has been so nice to answer my letters in the past. I finally am getting therapy, PT,Speech,occupational at university of Miami. Met a caring doctor who asked what I wanted from her and I told her I want to be normal again. Of course that means to speak and have people understand me, to walk again and to be able to use my right hand. I am having a difficult time with my body tightening up or spasm . Their is a word for it but cant remember it. I can spell out words if people dont understand or slow down like a robot. At least people can understand me if they take the time. My right foot is moving with my toes but I cant control it good enough to walk. MY right arm I can move up to my shoulder. I still cant hold anything in it and bought special utensils for eating but still really need 98% help. I can dressed almost to completion and undressed much faster. I have a new wheelchair and new leg brace and waiting on motorized wheelchair and a new brace that locks my knee. It will start from my feet up to my groin. It should help with me being able to stand and walk even though I would have to slide that foot along. MY foot is very strong, I just cant feel it or make it do what I want it to do. Oh I can also move my fingers at will sometimes. I got Botox for arm and fingers and leg to stop spasm. Still cant think of the word for that but it might come to me by the time I end this letter. I spoke with my doctor about stem cell and she stated I was to far along in my stroke ,almost 2 and 1/2 years. They are doing research but for people who just had the stroke. She will notify me if that changes and if anyone has info that would help me please respond back. I sleep in a normal bed now, still have hospital bed as I cant fit wheelchair thru bathroom doors to take a shower or use the restroom. I am afraid of Medicare, I just got in Jan 1st to cut me off therapy before my new brace comes in. It really takes two people the therapist and my caregiver Dan to hold me up when I try to walk. The city of Miami has lots of activities to do for handicap people so weekends like this past they let me sail a sail boat. Im waiting in a grant to have them actually teach me how to sail. They also have art classes. They have boats and canoes with special seats so I can be out on the water. They also had last year big wheels on wheelchairs and picked me up in parking lot and took me right into the ocean. This all is from Doctor Shapiro out of university of Miami. She is keeping me occupied anyway she can during therapy. So once again if anyone knows about stem cells therapy from legit doctors please let me know. For you other people if your near Miami, they are doing stem cell therapy for people no later the one year from stroke. Doctor Lauren Shapiro. Let her know I sent you and maybe she will get me in the group faster because I am only 29 years of age. Ok that is my update and sorry this has taken so long and if I did this in the wrong place let me know how I can move it.
Charles

#34

Charles and Dan!

Can I say, it is so great to hear from you!! Honestly! I do think about you a lot but your previous descriptions of how Charles is were so poorly, I dare not ask about progress but it sounds like you’re doing really well and you’re in so much more supportive a situation re physiotherapy.

If you get to go sailing, send us a picture, if you will. That would be amazing.

There are perhaps a couple of articles on here re stem cell treatment. I know @Angela4 is in touch with one set and @Artem has been looking into another set. As you say, whether the treatment is successful or about as useful as snake oil is to be looked out for and I’ve seen an article about one set where it was described as snake oil.

I’m really blown away to hear your progress! Well done!

Richard

#35

Here is the trial set that Angela is following:

#36

The other possibility I know about is here:

http://www.nrimed.com/

But I don’t believe there has been independent verification of the results (e.g. by doing a placebo study). However, I have seen an article citing effectiveness some time after the initial stroke. I think that was up to 36 months post stroke.

In the UK, one of our most esteemed political journalists had a stroke a number of years ago. He tried this treatment and it had very, very modest results. If you can find somewhere to see the full film, it is interesting:

#37

Richard , I was spending all my time before on the phone trying to get anything that would have helped Charles. Now I spend all my time driving him to and from therapies. Miami Is about 70 mins from where we live. They actually admited him to a trama center for couple weeks and then he started physical, occupational and speech as a out patient. They ordered a brace that helped drop foot and his own wheelchair for him to try to get around on his own. Now as outpatient they ordered another brace from his toes to his groin. It will make sure his foot stays straight and big thing is to stop his knee from giving out. That should make it so he can walk with assistance. He also received botox for his fingers and right arm and also in back of his leg to help move his ankle. The therapist don’t think he will walk alone again. I say he has proved them wrong before, eating regular food and drinking liquids without thickner and breathing without any help. The hospital has lots of activities in and out of their walls. He has had art therapy and lots of activities to keep his mind sharp and have some fun again. HE went sailing and drove the sail boat. Picture attached.

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#38

Dan,

You bring a tear to my eye this morning. You really do. You’re a complete brick! (I don’t know if that translates the same way in Florida but in the UK it’s a great thing!)

I completely agree with you “I say he has proved them wrong before, eating regular food…” Its a good thing to keep a positive, determined outlook, though he’s been through the gravest of situations and still has a way to go.

Keep up the fantastic work, both of you!

Lots of love,

Richard

#39

@Zahra1988 I would love to know how your brother is doing. My husband is 4 years post Spinal AVM surgery and still we are getting recovery.

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#40

I’d love to know, too, but never dare ask.