Any luck at Stanford?
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Mom only wanting to help
- Posts: 6
- Joined: Thu Oct 30, 2008 5:46 pm
Any luck at Stanford?
My son was in a dirk bike accident 07/08 along with many other injuries he is now left with a TBPI and TBI. He just underwent surgery at Stanford one to explore the damange and nerve transfer. We have now learned that C5, C6, and C7 were avolved from the spinal cord. He has some movement in his fingers and wrist but that is it. I have seen a lot of postings regarding the Mayo Clinic (I did consider but insurance easily accepted Stanford)does anyone have any experience with Stanford? My son is 18yrs old and has made an absolute amazing recovery thus far. He was very active with hunting, fishing, golfing, riding, etc. He was on his way to college to play golf. I just want to share with him other stories of hope. I am afraid he doesn't always see light at the end of the tunnel.
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Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: Any luck at Stanford?
Hello,
I was injured over 5 years ago with the same nerves avulsed (C5, C6, & C7). I traveled all over the country & as far as London to find the best medical attention that I could. I went to Stanford as well.
I highly recommend the Mayo Clinic. They preformed all of my surgeries and I feel that I got the best treatment available at the time. Time is of the essence, and I would recommend getting there if you can. My insurance had problems with it, and finally now after having my credit destroyed and countless hours of negotiating, my insurance is finally paying all the bills. The Mayo was the only facility at the time doing what they were, so that was the force behind my argument to get the bills paid. It's a long road, but it can be climbed.
Best of Luck,
Christopher
PS If you want to talk, you can email me your number and I'll call you, or I'll send you my number and you can call me. Click on my username and my email address is listed there.
I was injured over 5 years ago with the same nerves avulsed (C5, C6, & C7). I traveled all over the country & as far as London to find the best medical attention that I could. I went to Stanford as well.
I highly recommend the Mayo Clinic. They preformed all of my surgeries and I feel that I got the best treatment available at the time. Time is of the essence, and I would recommend getting there if you can. My insurance had problems with it, and finally now after having my credit destroyed and countless hours of negotiating, my insurance is finally paying all the bills. The Mayo was the only facility at the time doing what they were, so that was the force behind my argument to get the bills paid. It's a long road, but it can be climbed.
Best of Luck,
Christopher
PS If you want to talk, you can email me your number and I'll call you, or I'll send you my number and you can call me. Click on my username and my email address is listed there.
Re: Any luck at Stanford?
I am 46 years old...my injury was in August of this year. I too have the use of my fingers and wrist but nothing else in left arm only. My right arm is just numb and tingly and burning but thankfully, works. This site is so helpful. I know you will find everyone is so supportive and knowledgeable about what is ahead. I am just getting home from the hospital so am just beginning my research. Doctors, frankly, are of little help here in Dallas. Has your son's arm fallen yet (sublugation)(sp?) Suzanne Sommer
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Mom only wanting to help
- Posts: 6
- Joined: Thu Oct 30, 2008 5:46 pm
Re: Any luck at Stanford?
Not knowing all the right questions, what can the Mayo Clinic offer that Stanford cannot. Don't get me wrong I am not doubting your recommendation I just need to know the right questions to ask. I really feel time is so important. He is so young and that is the only thing working for him right now.
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Mom only wanting to help
- Posts: 6
- Joined: Thu Oct 30, 2008 5:46 pm
Re: Any luck at Stanford?
I am very new to all this and my mind is in such a fog I am not sure I understand "Fallen". His shoulder is holding up well for now. I have a very difficult time getting him to wear a brace because he doesn't think it helps.
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Any luck at Stanford?
Subluxation occurs when the humurous bone at the shoulder "falls" / slips lower and partially out of joint. Very painful in the long run and can be avoided by wearing the brace.
If he were to regain function, subluxation could impede this and make thing worse.
I highly encourage you to really talk to him about wearing it, tell him the consequences of not wearing it...
Marieke 33 LOBPI
RN
If he were to regain function, subluxation could impede this and make thing worse.
I highly encourage you to really talk to him about wearing it, tell him the consequences of not wearing it...
Marieke 33 LOBPI
RN
Re: Any luck at Stanford?
I got a letter from Mayo's yesterday, stating the were unable to see me in a timely manner.
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Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: Any luck at Stanford?
"what can the Mayo Clinic offer that Stanford cannot?"
Experience and surgical procedures that other surgeons have never considered.
Understand this... this injury is rarely seen by most neurologists, and surgical options that are offered, even by top neurologists, still do not compare to what a BPI specialist can offer or preform. You will soon come to realize, if you meet other specialists, that the choices, expertise, and experience with this injury vary widely. Unless you are meeting one of the top BPI surgeons.
The Mayo BPI Team has 3 surgeons that all work together to repair the damage to the best of their ability. They challenge each others opinions of what is the best option, and they have travelled the globe to study and learn the best strategies and surgeries available from other international BPI specialists. You won't find this else where.
Mayo BPI Team can offer: free muscle transfers (like from the leg to the arm, which I had ), C7 transfer (using part of the uninjured sides C7 to injured sides muscle. I had this as well), Phrenic nerve transfer from base of diaphragm to muscle (this is not done elsewhere in the States as far as I know). . Artificial nerve grafts. Experience experience and more experience. There are probably new procedures and techniques that they are performing that I am unaware of, but the fact that they all work together and at the same time means your son can get many surgeries at once, instead of dragging them out over months and years.
Like I had said before, feel free to contact me if you care to talk. The only reason why I suggest the Mayo so strongly is because I know all to well the "fog" that you are experiencing in dealing with this all. 5 years later, and I am still dealing with it. The fact that good information and treatment is so rare with this injury is why I try and contribute to this website as much as possible.
The choices you make now, your son will have to live with the rest of his life, which I'm sure you know all too well. The Mayo BPI team, in my opinion, will help you make the best possible choices available.
Experience and surgical procedures that other surgeons have never considered.
Understand this... this injury is rarely seen by most neurologists, and surgical options that are offered, even by top neurologists, still do not compare to what a BPI specialist can offer or preform. You will soon come to realize, if you meet other specialists, that the choices, expertise, and experience with this injury vary widely. Unless you are meeting one of the top BPI surgeons.
The Mayo BPI Team has 3 surgeons that all work together to repair the damage to the best of their ability. They challenge each others opinions of what is the best option, and they have travelled the globe to study and learn the best strategies and surgeries available from other international BPI specialists. You won't find this else where.
Mayo BPI Team can offer: free muscle transfers (like from the leg to the arm, which I had ), C7 transfer (using part of the uninjured sides C7 to injured sides muscle. I had this as well), Phrenic nerve transfer from base of diaphragm to muscle (this is not done elsewhere in the States as far as I know). . Artificial nerve grafts. Experience experience and more experience. There are probably new procedures and techniques that they are performing that I am unaware of, but the fact that they all work together and at the same time means your son can get many surgeries at once, instead of dragging them out over months and years.
Like I had said before, feel free to contact me if you care to talk. The only reason why I suggest the Mayo so strongly is because I know all to well the "fog" that you are experiencing in dealing with this all. 5 years later, and I am still dealing with it. The fact that good information and treatment is so rare with this injury is why I try and contribute to this website as much as possible.
The choices you make now, your son will have to live with the rest of his life, which I'm sure you know all too well. The Mayo BPI team, in my opinion, will help you make the best possible choices available.
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Mom only wanting to help
- Posts: 6
- Joined: Thu Oct 30, 2008 5:46 pm
Re: Any luck at Stanford?
Thank you for your response. I have truly pondered this all weekend. We have an appointment today with our rehab Dr. and I am going to really drill him for direction. I am leaning towards at least getting a consultation with the MAYO Clinic. Thank you and keep giving me your thoughts, the more information I have the better decisions I can make.
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GMcG
Re: Any luck at Stanford?
Dear "Mom",
Hopefully you read my reply to the question you asked about Stanford posted under another heading, but I copied it again to post it here just in case:
Stanford was not even among the hospitals that were recommended to me when I was injured. I was looking for top 5 neurological hospitals that had a specialized program in brachial plexus injuries. Local would have been a lucky convenience, but as time went on I realized how little that mattered for surgical reasons -- I have my own local neurologist and orthopedist, I needed the best surgeons I could find, and surgery is a temporary thing. I contacted Mayo Clinic, UCSF, John's Hopkin's, and University of Pennsylvania, (I have family on the east coast) though I was only thoroughly examined by the doctors at UCSF and Mayo Clinic. It soon became apparent that Mayo was the only place to go for such surgery, it was like comparing apples and oranges, their program is by far the #1 in the country for our injury and worth all of the travel. Their team of doctors is known as the best there is in our country and they do the most advanced repair operations of the brachial plexus in the United States. I would highly recommend that you make sure Mayo is at least among one of the consult opinions you get before undergoing surgery, if you need it.
I was injured in April, 2007 with injuries just like your son's from a major motor vehicle accident. I did not want to go to a hospital outside of CA, thinking of follow-up, insurance, and such, but my father kept pushing me to do so and I'm so grateful he did. I was in a wheelchair at the time so it was especially difficult, but the one thing that Mayo is able to do, like Christopher mentioned, is coordinate ALL of your needed healthcare in ways you can't even imagine. I was able to be treated for things that I didn't even think of as part of my injury, like skin care, swelling, vascular issues, internal medicine, eye care, etc. etc in addition to surgery. Also, as to insurance, I work for the state of CA with Blue Cross and I ended up paying no more than I would for local healthcare. I had nerve transfer surgery completed at Mayo 6 months after my injury in October, 2007, and am just now starting to see very minor movement, thankfully.
Just like Christopher offered, if you or your son have any questions or want to talk, please feel free to contact me by e-mail. Hopefully I've provided some useful information.
Hopefully you read my reply to the question you asked about Stanford posted under another heading, but I copied it again to post it here just in case:
Stanford was not even among the hospitals that were recommended to me when I was injured. I was looking for top 5 neurological hospitals that had a specialized program in brachial plexus injuries. Local would have been a lucky convenience, but as time went on I realized how little that mattered for surgical reasons -- I have my own local neurologist and orthopedist, I needed the best surgeons I could find, and surgery is a temporary thing. I contacted Mayo Clinic, UCSF, John's Hopkin's, and University of Pennsylvania, (I have family on the east coast) though I was only thoroughly examined by the doctors at UCSF and Mayo Clinic. It soon became apparent that Mayo was the only place to go for such surgery, it was like comparing apples and oranges, their program is by far the #1 in the country for our injury and worth all of the travel. Their team of doctors is known as the best there is in our country and they do the most advanced repair operations of the brachial plexus in the United States. I would highly recommend that you make sure Mayo is at least among one of the consult opinions you get before undergoing surgery, if you need it.
I was injured in April, 2007 with injuries just like your son's from a major motor vehicle accident. I did not want to go to a hospital outside of CA, thinking of follow-up, insurance, and such, but my father kept pushing me to do so and I'm so grateful he did. I was in a wheelchair at the time so it was especially difficult, but the one thing that Mayo is able to do, like Christopher mentioned, is coordinate ALL of your needed healthcare in ways you can't even imagine. I was able to be treated for things that I didn't even think of as part of my injury, like skin care, swelling, vascular issues, internal medicine, eye care, etc. etc in addition to surgery. Also, as to insurance, I work for the state of CA with Blue Cross and I ended up paying no more than I would for local healthcare. I had nerve transfer surgery completed at Mayo 6 months after my injury in October, 2007, and am just now starting to see very minor movement, thankfully.
Just like Christopher offered, if you or your son have any questions or want to talk, please feel free to contact me by e-mail. Hopefully I've provided some useful information.