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One sided weakness ???

Praying4All
Posts: 8
Joined: Oct 2011

Hi I have a daughter with a brain tumor, DPG. she was recently having severe headaches as well as some beck pain. We took her to the dr and she was put back on Dexamethasone 4ml every 6 hours for the first 5 days then she went down to 2 ml every 6 hours. Now her left arm and leg is extremely weak, she had weakness after surgery which was in July 2011, but now she can barely get around independently. Does anyone have any experience like this, thoughts, suggestions?

mom_in_CT
Posts: 19
Joined: Jun 2011

My 28-year-old daughter has developed left-sided weakness which came on rapidly in January along with the loss of peripheral vision in her left eye. Her NO said that her tumor grew in the part of the brain that controls movement on her left side. He didn't even think that she should bother going for physical therapy which leads me to believe that it is not reversible although he did not come right out and say that.

However, she is a very determined young lady and has been going for physical and occupational therapy for about 2 months now. I have to admit that it has not made a noticable difference. She is walking with a cane and has just been fitted with a brace to keep her ankle from giving out on her. Her left hand is totally useless. It breaks my heart when she says things like "I can't wait for my left side to get better so I can take the dogs for a hike again."

She went from being physically capable of doing anything in December to being severely disabled in January. She is on Avastin and Lomustine for a Grade III anapalastic oglio (2nd recurrence).

greenmawmaw
Posts: 6
Joined: Aug 2012

my son has been talking about how he wants to get one for his left ankle. does it help her?
who do i ask for helping him get one?

sorry about you daughter, my son seems to be int he same situation as your daughter,,,he hopes to drive one day again,, i tell him when the dr gives him a ok, but i truely dont ever see it happening. but i dont have the heart to tell him.. i just cant break his spirit, what he has left,,,so i say we'll see,,,,

keep strong! we have to for them....

mom_in_CT
Posts: 19
Joined: Jun 2011

The ankle brace definitely helped my daughter get around better. It prevented her left ankle from giving out on her. We worked with her physical therapist to get the brace. He referred us to an office that fits people with orthotics and prosthetics. You should definitely look into it.

I am happy to say that her left side is doing way better. She worked with an occupational therapist and a physical therapist for a couple of months. The occupational therapist worked on her arm and hand and he was phenominal. He was just as determined as Kim. When she first started she could not raise her arm and she could not move her hand or fingers at all. She can now raise her left arm almost as high as her right (and keep it there!) and she is able to move all of her fingers and grasp things. When he discharged her, he said that in all his time doing this work, he has only seen one or two other people who have made this kind of progress.

I can't say much for the physical therapist. Maybe he didn't think there was any hope, but he was lame and didn't really do anything for Kim except get her fitted with a brace. He was having her do the "lame physical therapy" with the brace on which I think it totally stupid. How would her leg get any stronger if she's relying on a brace?

In June, she started working with a personal trainer at the gym. This has been the best thing that she could ever have done. She goes three times a week for one-hour sessions. The gym that we belong to donated the trainer's time. She has made amazing progress. She hasn't used her cane since the end of June and shortly therafter she stopped using the brace. She still limps when she walks and can't go hiking yet, but she's working on it.

It has taken a tremendous amount of determination and hard work. Kim has a very positive attitude and was not ready to give up. I am so thankful that I insisted that Kim go for physical and occupational therapy and that it led to the personal trainer. Her doctor had me believing that there was no hope and that her left side weakness was a permanent thing.

She stopped driving in January and I truly thought that she would never be able to drive again, but she has just now started up again. The biggest issue with driving is the loss of peripheral vision in her left eye. She's only driving short distances and will definitely not get on a highway but at least she can get herself back and forth to the gym and to work. She works at a school and will be back full time next week.

According to her MRI in July, the tumor is stable and there was less swelling. She goes for an Avastin infusion every 3 weeks now and is still on Lomustine.

Please don't let your son give up -- it's nice when you can prove the doctors wrong!

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