Sharing my experiences after 22 years with BPI and a woman too!
Sharing my experiences after 22 years with BPI and a woman too!
Good Morning to all you brave souls out there living with a Traumatic BPI. My name is Mardelle andI write this with great emotion as the road has been long and exhilerating. I am 51 now. I was 29 when my husband Stephen and I were walking in Toronto. We were both struck by a speeding taxi. I was thrown and hit by a 2nd car. Stephen died and I survived!
My injuries were everything from a severe closed head injury/Left complete C3 pulled from the spinal cord BPI. Right side sustained a mild pull. 90% soft tissue injury to my body. Torn muscles, liagaments, over 300 stitiches from cuts, all internal organs brusied,chest fractured every rib, spinal and neck fractures. Nothing amounted to the pain. That never left. At first it was a type of death sentence to hear the BPI pain would never leave. Then with my will and that of God. I decided to Recycle Reduce and Reuse what ever I had within myself, to change the course of my life with this acute long term problem. I started training. Like training for a marathon. I needed to retrain my brain to do so much. I started to cling to anything that was theraputic. Read some books on healing. Loved flowers, bought them, gardened with them, deep breathing, relaxation therapy, meditation, healthy eating, massage, moderate exercise etc...Before I knew it....I had a surgery in 1988. 12 Nero Dr.'s reconnected frayed and torn nerves with the harvest from my own leg nerves. Implanted them into one of the major nerves of my left lung. 9 months after surgery a flicker of the bicept. 22 years later...all the muscles have returned in my back, behind my elbow. I can feel a flicker of movement in my wrist and feel the median and ulner nerves fire. Circulation is improved and what was once a waxy white looking hand, now has age lines, pink, and some finger prints returning. The pain I control without drugs for over 10 years now. I could never surrender to drug use to control the pain and I will never give up on myself. I have taught my brain to release my own endorphines at will.
The only medication I do take is tylenol arthritis. I have no choice on that one, if I want to move at all.
I wrote a chronic pain management program for Sunny Brook Science Centre in Toronto back in the mid 1990's.
I am ready and willing to share my story with the World and want to help all those that seek ways to accept/channel the pain and experiences into positive and productive living. I know I must sound bizarre, but I am simply blessed. I was able to move on to forge a life made of Titanium ( there is enough of it in my body..loll) strong enough to care for myself and blessed enough to have 3 wonderful children of my own. That are now 19, 16 and 14 two girls and one boy. There is nothing I cannot do if I put my mind to it...
Pain is not who or what you have become, it is something that happened to you...and exterior event...don't bring it into your sacred space...your life...your being...embrace it's presence in your body, love it as something that needs attention...train the pain...live the gain...move forward. I feel humble, honoured and tickled pink at this moment. For I am not alone anymore with this experience.. I am ready and open to anyone who needs me to share/guide/teach some of the healing tools I use and will most likely expand upon for all of my life to manage it completely. I sincerely hope that anyone who reads this post this morning, feels in someway connected to me and inspired and feels a glimmer of hope, from my words. I am here to learn and to share with you all...Thank You & God Bless..With Love & Light Mardelle
Re: Sharing my experiences after 22 years with BPI and a woman too!
Mardelle,
You are an inspiration to all others! What an amazing story. My dgt is 24 now (she had her accident when she was 20) and she talks about how focus and mind control have helped her also with pain and posture. She is amazing how she is so aware of her body and how it is all connected with her brain. She also has tried visualization especially right after her accident. I pray that she will continue to be as positive as you. Thanks for your story.
Sue
You are an inspiration to all others! What an amazing story. My dgt is 24 now (she had her accident when she was 20) and she talks about how focus and mind control have helped her also with pain and posture. She is amazing how she is so aware of her body and how it is all connected with her brain. She also has tried visualization especially right after her accident. I pray that she will continue to be as positive as you. Thanks for your story.
Sue
Re: Sharing my experiences after 22 years with BPI and a woman too!
Hi Sue,
Thank you for your kind words, I appreciate them.
I am delighted to speak with other women about this injury, as you know it is primarily a male injury, through a variety of activities.
Your daughter sounds like she has a firm grip on reality. This is something that has to present in all TBPI patients, if not it is far too easy to slip into the daily patterns of drug assisted care.
One thing I recall at the 4 year stage. Doctors told me that my pain would be intense after 4 years, it meant the nerves were dying. That was a complete lie. It is the opposite. When there is pain...there is life. I embrace that pain with a unique type of joy. It is in everything I do. The pain pushes me to complete my tasks. It's a fuel of sorts.
Doctors have and continue to study me. They are amazed. I am just me. This happened to me for a reason. My life is neither 1/2 full or 1/2 empty. My life's cup is simply, overflowing. I am happy to be in the presence of you all and to share all that I know about the journey.
Tell your daughter to keep up the great work...she is on a good path.
With Peace & Light
Mardelle
Thank you for your kind words, I appreciate them.
I am delighted to speak with other women about this injury, as you know it is primarily a male injury, through a variety of activities.
Your daughter sounds like she has a firm grip on reality. This is something that has to present in all TBPI patients, if not it is far too easy to slip into the daily patterns of drug assisted care.
One thing I recall at the 4 year stage. Doctors told me that my pain would be intense after 4 years, it meant the nerves were dying. That was a complete lie. It is the opposite. When there is pain...there is life. I embrace that pain with a unique type of joy. It is in everything I do. The pain pushes me to complete my tasks. It's a fuel of sorts.
Doctors have and continue to study me. They are amazed. I am just me. This happened to me for a reason. My life is neither 1/2 full or 1/2 empty. My life's cup is simply, overflowing. I am happy to be in the presence of you all and to share all that I know about the journey.
Tell your daughter to keep up the great work...she is on a good path.
With Peace & Light
Mardelle
Re: Sharing my experiences after 22 years with BPI and a woman too!
Mardelle
I, too, am a female and I have had this injury for 22 years, Aug 1987 was my injury. What extaclly is your nerve damage? Alvused, stretched and what nerves were effected. I am raising 4 children and I recently had shoulder surgery to correct my subluxed shoulder. According to Mayo clinic they rarely do shoulder fusion anymore for TBPI. Thank goodness...........
I, too, am a female and I have had this injury for 22 years, Aug 1987 was my injury. What extaclly is your nerve damage? Alvused, stretched and what nerves were effected. I am raising 4 children and I recently had shoulder surgery to correct my subluxed shoulder. According to Mayo clinic they rarely do shoulder fusion anymore for TBPI. Thank goodness...........
Re: Sharing my experiences after 22 years with BPI and a woman too!
Hi...
Nice to meet you....we are connected now for life
Sisters/Warioress
My injury was very severe. My husband and I were walking arm and arm crossing the street in fron of our home. My husband was 6'5" 240 lbs. We were hit by a speeding East bound taxi cab. I was thrown 75 feet and hit by a second car going West bound. When they finished the revival that lasted over two days. They say a complete C3 Pulled from the Spinal Cord. At the time it was by far the worse injury TBPI Neurosurgeons had ever seen or head of. Because it was so severe. I should have been on a ventilator for the rest of my life. Doctors to this day, do not understand why I am alive and can breathe on my own.
In any event...as time marched on within the first 3 months had a nerve graph surgery performed over two days and all Dr's volunteered their time to harvest my own nerves from my legs and transplant them into one of the major nerves in my left lung. So intiially, my breathing would help fuel any nerve rejeneration. Dr.s also graphed into the cord and did not break my clavical bone, they simply created a braid of all their work and placed it over top of the bone.
9 months a flicker in the bicept...22 years later April/09. All muscles are returning in behind my elbow, back muscles, pectorial, wrist and not both median/ulner nerves are firing....every time I gain back recovery...the pain leaves...I really only have pain left in the hand...the most complex...I will use my hand before I die...this is my goal and my gift of encouragement on this day....Doctors are truly amazed...it's lots of hard work...but worth the rewards.
I had no choice with the shoulder fusion. I had a fall on my left arm and broke it above the elbow. I snapped of one of the four tendons you are born with. I got fused. I have a 30% hundge system. Dr's are now working on a 70% hinging system for me, in anticipation of 85-90% recover and use of my arm/hand.
I also have a plastic surgeon mould with hard silicon crafted with dremmel tools... a pectorial muscle inplant and a shoulder pad muscle both front and back. That was in 2002. Now the pectorial muscle is returning...I have to get the fake removed...loll...
I have a multitude of injuries from that time...the spinal cord, brain injury, and all kids of fractures etc...but I am walking, and healing as I write you today...
Wow! Four Kids They are a handful for sure...
Amazing Mom you must be
With Peace, Love & Light
Mardelle
Nice to meet you....we are connected now for life
Sisters/Warioress My injury was very severe. My husband and I were walking arm and arm crossing the street in fron of our home. My husband was 6'5" 240 lbs. We were hit by a speeding East bound taxi cab. I was thrown 75 feet and hit by a second car going West bound. When they finished the revival that lasted over two days. They say a complete C3 Pulled from the Spinal Cord. At the time it was by far the worse injury TBPI Neurosurgeons had ever seen or head of. Because it was so severe. I should have been on a ventilator for the rest of my life. Doctors to this day, do not understand why I am alive and can breathe on my own.
In any event...as time marched on within the first 3 months had a nerve graph surgery performed over two days and all Dr's volunteered their time to harvest my own nerves from my legs and transplant them into one of the major nerves in my left lung. So intiially, my breathing would help fuel any nerve rejeneration. Dr.s also graphed into the cord and did not break my clavical bone, they simply created a braid of all their work and placed it over top of the bone.
9 months a flicker in the bicept...22 years later April/09. All muscles are returning in behind my elbow, back muscles, pectorial, wrist and not both median/ulner nerves are firing....every time I gain back recovery...the pain leaves...I really only have pain left in the hand...the most complex...I will use my hand before I die...this is my goal and my gift of encouragement on this day....Doctors are truly amazed...it's lots of hard work...but worth the rewards.
I had no choice with the shoulder fusion. I had a fall on my left arm and broke it above the elbow. I snapped of one of the four tendons you are born with. I got fused. I have a 30% hundge system. Dr's are now working on a 70% hinging system for me, in anticipation of 85-90% recover and use of my arm/hand.
I also have a plastic surgeon mould with hard silicon crafted with dremmel tools...
a pectorial muscle inplant and a shoulder pad muscle both front and back. That was in 2002. Now the pectorial muscle is returning...I have to get the fake removed...loll...I have a multitude of injuries from that time...the spinal cord, brain injury, and all kids of fractures etc...but I am walking, and healing as I write you today...
Wow! Four Kids
They are a handful for sure...Amazing Mom you must be
With Peace, Love & Light
Mardelle
Re: Sharing my experiences after 22 years with BPI and a woman too!
Sadly, I believe we all suffered much more than our BPI when our accidents happened. I hit a tree head on going 55 MPR on motorcycle, no helmet, so I too had head injuries. The boy driving had a helmet and was killed. I had 3 nerves avulsed from my spine.
I am amazed back in 87' that doctors in your area were familiar with our injury. I live near Chicago and it was impossible to find a doctor in the city that could help. That is how I ended up @ Mayo clinic. I had one of the top world known doctors in the field, Dr Wood, whom later became the CEO of Mayo Clinic. I was the 3rd known patient to have his surgery of a muscle transfer; my tricep to my bicep. I too had a nerve graph but unlike you my nerves were pulled out of my spine and they can not be put back in. I also had implants made for my shoulder and back but I fought infections and rejections so last year they were removed. Although we both have a BPI we are so very different. As well as pain.
You too are still working with an old injury like myself. This last surgery was my last, Thank God! Good luck in all your future procedures and keep your faith going; it seems to be working!
There are many people on this board that have our injury A LOT longer than us and they are great to talk to, I hope you find them.
Kath
I am amazed back in 87' that doctors in your area were familiar with our injury. I live near Chicago and it was impossible to find a doctor in the city that could help. That is how I ended up @ Mayo clinic. I had one of the top world known doctors in the field, Dr Wood, whom later became the CEO of Mayo Clinic. I was the 3rd known patient to have his surgery of a muscle transfer; my tricep to my bicep. I too had a nerve graph but unlike you my nerves were pulled out of my spine and they can not be put back in. I also had implants made for my shoulder and back but I fought infections and rejections so last year they were removed. Although we both have a BPI we are so very different. As well as pain.
You too are still working with an old injury like myself. This last surgery was my last, Thank God! Good luck in all your future procedures and keep your faith going; it seems to be working!
There are many people on this board that have our injury A LOT longer than us and they are great to talk to, I hope you find them.
Kath
Re: Sharing my experiences after 22 years with BPI and a woman too!
Hi Kath...
I lost my husband in my accident. Sorry, for your friend passing.
I am delighted to know there are older TBPI patients...as that is where we are all headed.
In the early stages when I was assessed. I was told that my injury was the worst they had seen and I was a canidate for an amputation only. No muscle, tendons, nerve transfers or anything.
I fought like heck with everything left in me to find anyone to help me. In fact in Toronto Canada many hospitals employ many doctors in various areas of medicine and we have many of the best Dr's in the World. I was fortunate at the time to have most of them in my city. I was very lucky. When I was being studied from Dr's around the World...I had many American Dr's looking to learn from Canadian Dr's in Toronto and from me as the patient.I had 12 neurosurgeons volunteer their time to my experimental surgery. I was in the right place at the right time. Sorry to hear that you did not have the same benefit in Chicago. I would love to meet another Intercostal Lung Nerve Graph like myself. All of these too were performed in Toronto at St. Michael's Hospital /Sunny Brook Medical Science Centre.
So much we learn from one another. In the beginning, there was no one to talk too...or share these experiences. I was alone..so I started digging...asking questions...and learning...ever more than my Dr's...the level of healing I was undergoing was nothing short of a Miracle...so much so...Dr's wanted to place electrodes at the base of my brain, to find out how I was healing so well...TBPI...is a mystery..together...we can help one another on this journey.
I Thank God for your courage and sharing your with your injury and passage of time on this day...
I lost my husband in my accident. Sorry, for your friend passing.
I am delighted to know there are older TBPI patients...as that is where we are all headed.
In the early stages when I was assessed. I was told that my injury was the worst they had seen and I was a canidate for an amputation only. No muscle, tendons, nerve transfers or anything.
I fought like heck with everything left in me to find anyone to help me. In fact in Toronto Canada many hospitals employ many doctors in various areas of medicine and we have many of the best Dr's in the World. I was fortunate at the time to have most of them in my city. I was very lucky. When I was being studied from Dr's around the World...I had many American Dr's looking to learn from Canadian Dr's in Toronto and from me as the patient.I had 12 neurosurgeons volunteer their time to my experimental surgery. I was in the right place at the right time. Sorry to hear that you did not have the same benefit in Chicago. I would love to meet another Intercostal Lung Nerve Graph like myself. All of these too were performed in Toronto at St. Michael's Hospital /Sunny Brook Medical Science Centre.
So much we learn from one another. In the beginning, there was no one to talk too...or share these experiences. I was alone..so I started digging...asking questions...and learning...ever more than my Dr's...the level of healing I was undergoing was nothing short of a Miracle...so much so...Dr's wanted to place electrodes at the base of my brain, to find out how I was healing so well...TBPI...is a mystery..together...we can help one another on this journey.
I Thank God for your courage and sharing your with your injury and passage of time on this day...
-
Dan
- Posts: 170
- Joined: Wed Jun 28, 2006 9:08 pm
- Injury Description, Date, extent, surgical intervention etc: Injured 5/11/86, had just turned 18 yrs old
Evulsed C5-T1
Intercostal into Bicep 10/86 - Location: Los Angeles
- Contact:
Re: Sharing my experiences after 22 years with BPI and a woman too!
Hi Mardelle,
You wanted to know a few others with the same procedure, how about someone from the same city, maybe the same Dr's?
Who was your primary Dr? I lived/live in Los Angeles and flew to Toronto in September 1986, I was hurt in May 1986, to get my surgery done. I thought I was at St Mary's, but ???? I do know it was a red brick building and after my surgery I got to look at the back of a large mall for four days while my parents stayed with me most hours but also got to tour the city, I think I got the bum end of that deal.
My Dr was Dr. Alan Hudson. I had the nerves harvested from the lower legs and I had them graphed into the intercostal nerves. I also had the sensory nerve to the left side of my face cut and transferred into the median nerve(I think is was the median, might be the ulner, been to many years to remember all the technical details), so I have sensory and hot/cold sensations in my hand. At the time this was what they were doing for people like me who had all the nerves avulsed, like me, I had all five completely avulsed.
I did all my follow-up with Dr Lamond in San Diego, which wasn't much other than taking out a few hundred stitches, he studied under Dr Hudson.
Dan
You wanted to know a few others with the same procedure, how about someone from the same city, maybe the same Dr's?
Who was your primary Dr? I lived/live in Los Angeles and flew to Toronto in September 1986, I was hurt in May 1986, to get my surgery done. I thought I was at St Mary's, but ???? I do know it was a red brick building and after my surgery I got to look at the back of a large mall for four days while my parents stayed with me most hours but also got to tour the city, I think I got the bum end of that deal.
My Dr was Dr. Alan Hudson. I had the nerves harvested from the lower legs and I had them graphed into the intercostal nerves. I also had the sensory nerve to the left side of my face cut and transferred into the median nerve(I think is was the median, might be the ulner, been to many years to remember all the technical details), so I have sensory and hot/cold sensations in my hand. At the time this was what they were doing for people like me who had all the nerves avulsed, like me, I had all five completely avulsed.
I did all my follow-up with Dr Lamond in San Diego, which wasn't much other than taking out a few hundred stitches, he studied under Dr Hudson.
Dan
Re: Sharing my experiences after 22 years with BPI and a woman too!
This upsets me so much its been four years since my injury and I called and begged every doctor to do something, anything to help me and got nowhere. No surgery no help, just doors slammed in my face. And here I am reading about how over twenty years ago they were doing things for ppl with avulsions. Why not me!
Re: Sharing my experiences after 22 years with BPI and a woman too!
Hi Dan...nice to meet you
Yes it is Dr. Hudson...Same Dr. same study program...you were all guys and I was the only woman
Tell me more...how are you know...did you have an intercostal graph into your left lung too?
He was one tough a$$ Dr. huh?
But so Amazinging Skilled...a Pioneer Doctor of Sorts in TBPI.
Yes, we had him in Canada.. All the yakking I hear about Canada's healthcare South of the boarder makes me sick. Universal healthcare is the only way. The surgeries/hospitals/ years of physio/OT, homecare with nursing/wheelchairs/aids/everything etc.. and the excellent care over all these years could mount up well into $10 Million...all of the reconstructive proceedures I must have elsewhere on my body every 5 years...there is always something...
I am blessed to have been so priviledged to have the best..it makes me feel proud too..
Tell me all of what life has been like for you?
I am happy to have found one of my brothers from my era
With Peace, Love & Light
Mardelle
Yes it is Dr. Hudson...Same Dr. same study program...you were all guys and I was the only woman
Tell me more...how are you know...did you have an intercostal graph into your left lung too?
He was one tough a$$ Dr. huh?
But so Amazinging Skilled...a Pioneer Doctor of Sorts in TBPI.
Yes, we had him in Canada.. All the yakking I hear about Canada's healthcare South of the boarder makes me sick. Universal healthcare is the only way. The surgeries/hospitals/ years of physio/OT, homecare with nursing/wheelchairs/aids/everything etc.. and the excellent care over all these years could mount up well into $10 Million...all of the reconstructive proceedures I must have elsewhere on my body every 5 years...there is always something...
I am blessed to have been so priviledged to have the best..it makes me feel proud too..
Tell me all of what life has been like for you?
I am happy to have found one of my brothers from my era
With Peace, Love & Light
Mardelle