New Braces (AFO’s) to Fight Tone
High muscle tone is a big problem for many people after brain injury. It can be painful, limits movement, and if left unchecked can lead to long term issues such as joint problems and skin breakdown.
Ashleigh has fought high muscle tone since her brain injury in 1999. She recently was fitted for some new AFO’s for her legs. These braces help support her when she is up in her chair and in therapy, especially in walking. She had her old braces for about five years and some fairly recent changes made the old braces an issue.
Ashleigh had tendon lengthening surgery at Northwestern University Hospital while she was a patient at the Rehab Institute of Chicago in 2005. After the surgery there was an amazing difference in her feet and ankles as the years of tone was reversed.
We have recently seen the tone sneaking back in and starting to turn the left foot in again. The braces made after her tendon lengthening surgery were not made to counteract that tone. The new braces will hopefully be able to get the foot back in its proper position. In addition, Ashleigh is scheduled for some botox injections later this month. Hopefully with the botox and the new braces we can correct the tone. We are still in the phase where she can only tolerate the braces for about an hour at a time and we are checking for any skin breakdown.
The AFO’s have some bumps strategically placed to hit the pressure points under the foot to help break the tone. Ted, our orthotist at Hanger, also did a separate liner which is supposed to help her tolerate the braces longer. We have had a couple of different companies make AFO’s over the years and finding the right person is the key. Try to get as many recommendations as you can when looking for an orthotist. The process may also require some adjustments to the braces.
My son had a severe TBI almost 6 years ago. With a lot of work and Gods help he is doing well. He cannot walk by himself but with the help of a brace he can walk a little with 2 people and a walker. He too says the brace hurts his heel after a short while. I try to pad the brace with thick socks. When people are ordering braces they should take this into consideration so they can leave room for the thickness of the socks. I commend you because I know first hand what you have gone through. I have never had my son anywhere except home. I think this has helped in his recovery.
Hello: I can’t even tell you how I ran across your page, But I don’t think it was by accident, I was looking for some answers about my daughters brain injury.
But I was very touch about your daughters story, her story sounds a little bit like my daughters story, And I was amaze on how much we had in common! not so much in the injury it self but the things you and your lovely wife had to endure, with the care of your daughter: and the home equipment, My daughter Sade’ Suffered Cardiac Arrest in December, 2008 and is now not able to walk talk or even feed her self, she is on a G-tub she can not see, I was told as well to give up and let her go. That she would never recover, but after spending two weeks in a coma and a month and a half in ICU and them two months in Rehab, she came home, I of course lost my job, and my home, I’m a full time care giver to her, My ex-husband her dad walked away after seeing her one time. he told me that I was selfish, because I was preserving her. she is doing some things they said she wouldn’t do, but she has a long way to go, just would like to ask you, some things I could do to help her in her recovery. And if I may ask how is Ashleigh doing now?
Hello to All, I have a similar situation with my son, Kevin. In 2009 my son fell from a tree and acquired a severe TBI as a result of Diffused Axion Injury. That is the result of severe deceleration and the shockway that travels throughout the brain, He also had several other injuries all ribs broken on the left side, left shoulder broken and all wings in his back were fractures as well as two C-4 fractured and his left lung collapsed.
After about a year and 1/2, I was able to bring him home. That entailed remodeling my home to provide for his care and acquiring all the equipment that would be needed.
He was unable to walk, use his hands, turn his head, speak or swallow correctly. it has now been nine years in August 2018 and he is able to understand all that is said to him and use his fingers to point and spell things out on a spell board, drive his wheelchair, and now can walk with the assistance of two persons. He also works out on a total gym. Though he does have TONE in his right leg and right arm and hand. We are still working on those issues. He can now laugh and smile and though has some difficulty with attention and focus can understand all that is said to him. He also tries to perform any instruction that is given him to the best of his ability.
I truly believe that in many instances hope is abandoned too soon, as it does require complete commitment to helping a TBI patient. My thoughts are that many times there are too many reasons not to provide the help that is needed because it cost too much, people don’t want to sacrifice their time for others, and it is just too demanding. My sincere belief is that my son can reach a much higher quality of life if both he and I put forth the effort.
I was ask a week after his accident to consider terminating life due to his level of injury. I did not consider it then and will not in the future. I still have my son. We were close though he was living in another state, but we are even closer now. It would speak for anyone who cared enough about me to provide this help when it is most needed.
All may want to remember that love is not only for the good times in life but for all times.
Wishing the best of outcomes for all who have experienced these challenges.