Alex's Life-Changing Back Surgery
Donation protected
Alex suffered an ischemic stroke (blockage of an artery) within 24 hours of birth. We were told the impacts of this would not be known until he reached or did not reach certain milestones. We didn't know if he would walk, talk, or do most of the things that one associates with childhood.
We worked with specialists from the day he was born to maximize the opportunities for recovery. We have been thrilled with the progress he has made.
For those of you who know him, you know that he is a vibrant, loving and active 7-year-old. While he is thriving in many areas, the stroke did result in some damage that has impacted his life. Alex has some mobility challenges, as the stroke damaged an area which has impacted his ability to move as most kids or adults can.
In medical terms, Alex has Spastic Cerebral Palsy. This means that parts of his body (primarily his right leg and to a lesser degree his right arm) get "tight" and make it more difficult for him to walk or use his arm. Physiologically, there is nothing wrong with his leg or arm, it is his brain that is sending the wrong types of messages to his leg and arm, essentially telling it to tighten up. This is almost like a muscle flexing.
What does this mean for Alex? Besides making it challenging to walk or run, this causes him pain. This makes it more difficult for him to sleep at night, often sleeps are more restless and he is up early as a result. It also takes a lot of extra energy for his body to find ways to compensate or adjust to the constant tightness in his leg. This has resulted in a more laboured way to walk, which will eventually result in hip damage so severe that he will need a hip replacement around the age of 40.
There are many things we have tried to help reduce the impacts of the tightness (medically referred to as spasticity), including physiotherapy, massage therapy, Botox treatments (to paralyze the muscles in his leg getting the "bad" messages to tighten up), muscle relaxants, and have explored different surgery options like tendon lengthening. All of these are temporary and have offered limited success. We thought there was nothing else we could do, until we learned of a procedure pioneered in the United States called a Selective Dorsal Rhizotomy (SDR).
While the aforementioned procedures are treating the muscles and tendons temporarily, the SDR procedure is a permanent solution to stop the spasticity from happening. It stops the "bad" messages from ever making it to the leg.
Here is the basics of how the procedure works:
In your spine there are a network of nerves that run from your brain to the rest of your body. These nerves look almost like hairs, but are smaller. Alex's leg has many of these nerves controlling different areas of the muscles, some are getting good messages while others are getting the messages to become tight. A neurosurgeon opens a section of the spine, tests the "nerve rootlets" to identify which of the batch are sending the bad messages. Once identified, they are permanently severed, which results in only the good messages being received by his leg (here is a more detailed explanation ).
We have been told his leg will be free of the spasticity and will require 3 weeks of intense daily physiotherapy to relearn how to walk. The entire procedure would result in a stay of approximately 4 weeks in St Louis, Missouri.
At the recommendation of our neurosurgeon in Manitoba, we applied to St Louis in the summer of 2019. In parallel, our neurosurgeon began exploring a new program, which recently opened in Toronto's Sick Kids hospital. The program in Ontario has been quite clear in correspondence with me that they work exclusively on patients from Ontario only and on children who are affected on both sides of the body. As we are Manitobans and Alex is only affected on his right side, we don't see this as an option.
Our neurosurgeon explained that the type of surgeon who performs a surgery like SDR is a neurosurgeon and they are primarily working on patients with tumors or brain/spine injuries. They categorize a procedure like Alex's as an improvement to quality of life, but not one to save his life so it is not a high priority. The program in Ontario performs several of these procedures a month, whereas the program in St Louis just recently completed its 4,000 successful procedure.
We were overjoyed to receive an email in the fall delivering the news that Alex was accepted into the St Louis program and has been scheduled for October 2020. They have indicated that they may bump up the surgery to the summer of 2020, as we have indicated this would be our preference.
In the event Manitoba agrees to pay, it will only be a portion. The remainder of the costs would be up to Chelsea and I to come up with as a family. The costs of the surgery, accommodations, food, travel and post-operative rehabilitation are estimated to be approximately $100,000.00 Canadian. A daunting number, but as a parent you know you would do anything for your child, especially if it will change their life for the better.
It was because of the encouragement of family and friends like you, that we decided to move forward with a gofundme page for a portion of total costs. Whether you are able to contribute or not, know that we still love you all.
Thanks for reading this short novel. I would be happy to speak to anyone who has questions about anything I have written about here today. It is a complex topic and can be difficult to explain, let alone understand.
Sincerely,
Chris and Chelsea Bohemier
We worked with specialists from the day he was born to maximize the opportunities for recovery. We have been thrilled with the progress he has made.
For those of you who know him, you know that he is a vibrant, loving and active 7-year-old. While he is thriving in many areas, the stroke did result in some damage that has impacted his life. Alex has some mobility challenges, as the stroke damaged an area which has impacted his ability to move as most kids or adults can.
In medical terms, Alex has Spastic Cerebral Palsy. This means that parts of his body (primarily his right leg and to a lesser degree his right arm) get "tight" and make it more difficult for him to walk or use his arm. Physiologically, there is nothing wrong with his leg or arm, it is his brain that is sending the wrong types of messages to his leg and arm, essentially telling it to tighten up. This is almost like a muscle flexing.
What does this mean for Alex? Besides making it challenging to walk or run, this causes him pain. This makes it more difficult for him to sleep at night, often sleeps are more restless and he is up early as a result. It also takes a lot of extra energy for his body to find ways to compensate or adjust to the constant tightness in his leg. This has resulted in a more laboured way to walk, which will eventually result in hip damage so severe that he will need a hip replacement around the age of 40.
There are many things we have tried to help reduce the impacts of the tightness (medically referred to as spasticity), including physiotherapy, massage therapy, Botox treatments (to paralyze the muscles in his leg getting the "bad" messages to tighten up), muscle relaxants, and have explored different surgery options like tendon lengthening. All of these are temporary and have offered limited success. We thought there was nothing else we could do, until we learned of a procedure pioneered in the United States called a Selective Dorsal Rhizotomy (SDR).
While the aforementioned procedures are treating the muscles and tendons temporarily, the SDR procedure is a permanent solution to stop the spasticity from happening. It stops the "bad" messages from ever making it to the leg.
Here is the basics of how the procedure works:
In your spine there are a network of nerves that run from your brain to the rest of your body. These nerves look almost like hairs, but are smaller. Alex's leg has many of these nerves controlling different areas of the muscles, some are getting good messages while others are getting the messages to become tight. A neurosurgeon opens a section of the spine, tests the "nerve rootlets" to identify which of the batch are sending the bad messages. Once identified, they are permanently severed, which results in only the good messages being received by his leg (here is a more detailed explanation ).
We have been told his leg will be free of the spasticity and will require 3 weeks of intense daily physiotherapy to relearn how to walk. The entire procedure would result in a stay of approximately 4 weeks in St Louis, Missouri.
At the recommendation of our neurosurgeon in Manitoba, we applied to St Louis in the summer of 2019. In parallel, our neurosurgeon began exploring a new program, which recently opened in Toronto's Sick Kids hospital. The program in Ontario has been quite clear in correspondence with me that they work exclusively on patients from Ontario only and on children who are affected on both sides of the body. As we are Manitobans and Alex is only affected on his right side, we don't see this as an option.
Our neurosurgeon explained that the type of surgeon who performs a surgery like SDR is a neurosurgeon and they are primarily working on patients with tumors or brain/spine injuries. They categorize a procedure like Alex's as an improvement to quality of life, but not one to save his life so it is not a high priority. The program in Ontario performs several of these procedures a month, whereas the program in St Louis just recently completed its 4,000 successful procedure.
We were overjoyed to receive an email in the fall delivering the news that Alex was accepted into the St Louis program and has been scheduled for October 2020. They have indicated that they may bump up the surgery to the summer of 2020, as we have indicated this would be our preference.
In the event Manitoba agrees to pay, it will only be a portion. The remainder of the costs would be up to Chelsea and I to come up with as a family. The costs of the surgery, accommodations, food, travel and post-operative rehabilitation are estimated to be approximately $100,000.00 Canadian. A daunting number, but as a parent you know you would do anything for your child, especially if it will change their life for the better.
It was because of the encouragement of family and friends like you, that we decided to move forward with a gofundme page for a portion of total costs. Whether you are able to contribute or not, know that we still love you all.
Thanks for reading this short novel. I would be happy to speak to anyone who has questions about anything I have written about here today. It is a complex topic and can be difficult to explain, let alone understand.
Sincerely,
Chris and Chelsea Bohemier
Organizer
Chris Bohemier
Organizer
Winnipeg, MB
