Brachial Plexus Injury

[DenisCasarsa]

Dear Members & Doctors,

I am just discovering this Forum and happy to find this community.

I had a motorbike accident 20 years ago, 39 years old today, with an avulsion of the right plexus on C5, C6, C7, resulting in loss of function in my right arm, atrophy, etc.. I can today move a little bit the hand.

I have been suffering a big deal this past two decades and am ardently looking to find a cure or improvement of my condition.

I heard recently of Stem Cells, I am new to this field and lack of knowledge to effectively assess what could be possible to recover and to improve my quality of living.

I have been experiencing this past two weeks StemEnhance, which seems to have a good general effects to this point. I am located in Thailand, and recently sent my medical reports and RMI to Dr. Schroff in India, am waiting feedback and answer from the repairstemcell.org and other. I know that there is some treatment available here in Thailand, but not knowing much of what is being done there or elsewhere, I would be very interested to learn from all of you.

Any comments, advice, feedback, sharing of your own experience would be highly appreciated.

Denis Casarsa

[Wise Young]

Originally Posted by DenisCasarsa

Dear Members & Doctors,

I am just discovering this Forum and happy to find this community.

I had a motorbike accident 20 years ago, 39 years old today, with an avulsion of the right plexus on C5, C6, C7, resulting in loss of function in my right arm, atrophy, etc.. I can today move a little bit the hand.

I have been suffering a big deal this past two decades and am ardently looking to find a cure or improvement of my condition.

I heard recently of Stem Cells, I am new to this field and lack of knowledge to effectively assess what could be possible to recover and to improve my quality of living.

I have been experiencing this past two weeks StemEnhance, which seems to have a good general effects to this point. I am located in Thailand, and recently sent my medical reports and RMI to Dr. Schroff in India, am waiting feedback and answer from the repairstemcell.org and other. I know that there is some treatment available here in Thailand, but not knowing much of what is being done there or elsewhere, I would be very interested to learn from all of you.

Any comments, advice, feedback, sharing of your own experience would be highly appreciated.

Denis Casarsa

Denis, please do a search on this forum for Geeta Schroff. You will find many critical remarks, including from me, concerning her. I do not recommend that you go to her. She is charging a great deal of money for an unproven therapy.

To my knowledge, there is no credible evidence that Dr.Shroff or other places purporting to implant stem cells are providing therapies that are beneficial for spinal cord injury or brachial plexus avulsion. What she is doing has no scientific basis and I am skeptical even of the claim that she is actually implanting human embryonic stem cells.

To my knowledge, she is implanting cells that apparently were obtained from one or more human blastocyts from fertility procedures. She use to (and may still) work in an in vitro fertilization clinic. Apparently, she injects the cells intrathecally (into the cerebrospinal fluid around the spinal cord) and intramuscularly. The latter is very unlikely to have any effect for the following reasons.

1. Muscle is essentially intracellular space with high potassium. The cells are likely to die shortly after injection into muscle.
2. The cells are not immune-matched to the recipients. Therefore, they are very likely to be rejected. While there have been some claims from animal studies that embryonic stem cells have some kind of immune privilege or even anti-immune characteristics, a majority of scientists who have transplanted embryonic stem cells into immune-competent animals know that the cells are rejected if they do not come from an immune-matched source.
3. To my knowledge, there has never been third-party verification of her results. There have been no publications in scientific and peer-reviewed journals, only incredible claims in press reports with little or no followup of the patients.

Several years ago, when I first heard about her, I was inclined to give her the benefit of the doubt and wait for evidence. However, not only has she not provided any evidence for the safety and efficacy of her treatment but her claims for its effects became unbelievable. She has claimed to have cured a variety of conditions from spinal cord injury to blindness, cerebral palsy, multiple sclerosis, and amyotrophic lateral sclerosis. She said that she was patenting the treatment but when her patent came out, it referred only to primary embryonic stem cells and contained no evidence for efficacy in any conditions. I have seen and talked to several people who have had her treatments and have not detected any significant improvement. When I heard that she was injecting the cells intramuscularly, I was stunned. How can a purported doctor not know that injecting into intramuscular space will kill the injected cells? I don't think that she has any idea what she is doing.

As you know, brachioplexus injury is a terrible condition for which no effective therapy has been shown. For many years, neurosurgeons and plastic surgeons have operated on avulsed brachioplexi, seeking to remove scar tissues and provide paths from regeneration. These only provide partial relief. About ten year ago, I heard an impressive talk by Prof Thomas Carlstedt at the Royal Orthopedic Hospital at Stanmore in London who had reconnected the peripheral nerve to the spinal cord and showed that axons not only grew out but apparently axons grew back into the spinal cord. While the people did not regain useful motor function (although they can move), the most remarkable finding was a reduction in neuropathic pain. However, he said that this result was obtainable only when the operation was done within months after the injury. Professor Geoffrey Raisman has been working with Professor Thomas Carlstedt to develop a cell transplant therapy to reconnect peripheral nerves with the spinal cord. They want to use olfactory ensheathing glial cells obtained from the patient's own nasal mucosa. Unfortunately, they are still not able to reliably obtain sufficient numbers of the cells from nasal mucosa cultures.

I don't have first hand experience with any of other organizations that you mention but they are all offering unproven therapies. I would urge you to wait until better data is available before spending time and money on these therapies. While many people say that they have nothing to lose except some time and money, I have observed the toll of disappointment on the hearts of those who have gone for such therapies.

Wise.

[Buttabean]

Unfortunately Dr. Wise is correct. I too have a brachial plexus injury to my left arm. I under went nerve graft surgery 8 years ago which they took part of my c-7 nerve on my right arm and tunneled it to my left arm and attached it to several muscle groups.

Dr.Wolf and one other surgeon from over seas did it. Unfortunately the time I had the procedure was to late in the game. 6 months after injury. I've since gained some feeling and bicep movement only when I move my right arm. I also feel hot and cold on my right hand when something touches my left arm in certain spots.

There's a few negatives to having this surgery done... My right fingers aren't as strong as they used to be and I get tingling in my hand depending on the position of my left arm. If I could go back, I wouldn't have taken the surgery... Here's hoping for a cure in the future.

[DenisCasarsa]

Thank you Dr. Wise Young and Joe. I have been looking through the forum, and am learning a lot about my present condition. I really appreciate all your info, from all of you!

I was operated by Dr. Ch. Bonnard in 1990 and by Prof. Narakas in 1991 at the Longeraie Surgical Clinic & Hospital in Lausanne Switzerland.

*****

The operation procedure in 1990:

"SUPRACLAVICULAR EXPLORATION OF THE RIGHT BRACHIAL PLEXUS: INTRADUCTAL AVULSION OF C5 AND C6.
- NEUROTIZATION OF THE SUB-SCAPULAR NERVE BY THE SPINAL NERVE
- NEUROTIZATION OF THE BRANCH TO THE PECTORALIS MINOR BY THE 3D
INTERCOSTAL NERVE
- NEUROTIZATION OF THE MUSCULOCUTANEOUS NERVE BY T4 AND T5.
- TRAUMATIC DISINSERTION OF THE TENDON OF THE PECTORALIS MAJOR.

The operation procedure in 1991:

- MODIFIED STEINDLER FLEXOROPLASTY FOR FLEXION WEAKNESS OF THE RIGHT ELBOW

*****

Today, I can only move my hand, on the right side, with more power on the flexion. Sorry to all for the mispelling or incorrect wordings, I'm a native French speaker.

I sent few emails during this past few weeks, and am getting some answer now. As previously said, I contacted Dr. Schroff in India, and got a reply yesterday, asking me to call tomorrow for a phone interview.

I think I could greatly benefit from your extensive knowledge, as to ask the questions which need to be addressed regarding her technique and work. I've been reading with attention many of your reports here, and although more dubious about the credit I used to give to the potential of her approach, I want to remain as open as possible, to all of your feedback and advices here, to take the right decision.

Originally Posted by Wise Young

Denis, please do a search on this forum for Geeta Schroff. You will find many critical remarks, including from me, concerning her. I do not recommend that you go to her. She is charging a great deal of money for an unproven therapy.

To my knowledge, there is no credible evidence that Dr.Shroff or other places purporting to implant stem cells are providing therapies that are beneficial for spinal cord injury or brachial plexus avulsion. What she is doing has no scientific basis and I am skeptical even of the claim that she is actually implanting human embryonic stem cells.

• 1 question would address the very nature of her work, what she is actually doing, what she would suggest in my case.
• How much it would be? (of course)

Originally Posted by Wise Young

To my knowledge, she is implanting cells that apparently were obtained from one or more human blastocyts from fertility procedures. She use to (and may still) work in an in vitro fertilization clinic. Apparently, she injects the cells intrathecally (into the cerebrospinal fluid around the spinal cord) and intramuscularly. The latter is very unlikely to have any effect for the following reasons.

1. Muscle is essentially intracellular space with high potassium. The cells are likely to die shortly after injection into muscle.
2. The cells are not immune-matched to the recipients. Therefore, they are very likely to be rejected. While there have been some claims from animal studies that embryonic stem cells have some kind of immune privilege or even anti-immune characteristics, a majority of scientists who have transplanted embryonic stem cells into immune-competent animals know that the cells are rejected if they do not come from an immune-matched source.
3. To my knowledge, there has never been third-party verification of her results. There have been no publications in scientific and peer-reviewed journals, only incredible claims in press reports with little or no followup of the patients.

I am not a Doctor, and new to your terminology... I obviously need in my situation, with your help, to go through the "apparently", and "To my knowledge", to have clear answer which might benefit others as well!

• What does she injects?
• Where? intrathecally and intramuscularly?
• How would the Cells injected behave? Would they be rejected?
• Are the Cells immune-matched to the recipients?
• Is there a follow up after the procedure?
• Does she have any data available about similar previously treated case?

Originally Posted by Wise Young

Several years ago, when I first heard about her, I was inclined to give her the benefit of the doubt and wait for evidence. However, not only has she not provided any evidence for the safety and efficacy of her treatment but her claims for its effects became unbelievable. She has claimed to have cured a variety of conditions from spinal cord injury to blindness, cerebral palsy, multiple sclerosis, and amyotrophic lateral sclerosis. She said that she was patenting the treatment but when her patent came out, it referred only to primary embryonic stem cells and contained no evidence for efficacy in any conditions. I have seen and talked to several people who have had her treatments and have not detected any significant improvement. When I heard that she was injecting the cells intramuscularly, I was stunned. How can a purported doctor not know that injecting into intramuscular space will kill the injected cells? I don't think that she has any idea what she is doing.

Dr. Wise, you raise here important questions and concerns... What would you tell her, ask her?

Originally Posted by Wise Young

As you know, brachioplexus injury is a terrible condition for which no effective therapy has been shown. For many years, neurosurgeons and plastic surgeons have operated on avulsed brachioplexi, seeking to remove scar tissues and provide paths from regeneration. These only provide partial relief. About ten year ago, I heard an impressive talk by Prof Thomas Carlstedt at the Royal Orthopedic Hospital at Stanmore in London who had reconnected the peripheral nerve to the spinal cord and showed that axons not only grew out but apparently axons grew back into the spinal cord. While the people did not regain useful motor function (although they can move), the most remarkable finding was a reduction in neuropathic pain. However, he said that this result was obtainable only when the operation was done within months after the injury. Professor Geoffrey Raisman has been working with Professor Thomas Carlstedt to develop a cell transplant therapy to reconnect peripheral nerves with the spinal cord. They want to use olfactory ensheathing glial cells obtained from the patient's own nasal mucosa. Unfortunately, they are still not able to reliably obtain sufficient numbers of the cells from nasal mucosa cultures.

I also experienced with time a reduction of neuropathic pain, although it has always been part of my daily life. I had the 2 first operation shortly after the accident, which appened in November 1989. Are there to your knowledge any local cell transplant, which could alleviate the deafferentation pain?, ease the little muscles function I still have?

Originally Posted by Wise Young

I don't have first hand experience with any of other organizations that you mention but they are all offering unproven therapies. I would urge you to wait until better data is available before spending time and money on these therapies. While many people say that they have nothing to lose except some time and money, I have observed the toll of disappointment on the hearts of those who have gone for such therapies.

Wise.

Doctor Wise, I listen and give credit to your advice, am open to hear anybody here, other Doctors or specialists, from Doctor Schroff, or Doctor Bonnard, my neurosurgeon in Switzerland, or any body else here.

Would you ask other specific questions?

It still hard to believe that so many people in this world are suffering from such condition, and have been deeply impressed with all your posts here. I believe it must be possible, nowadays or will be in a while to live with dignity, without pain!

Denis Casarsa

[Wise Young]

You already have quite a lot of questions. I am not sure that doctors will be able to answer most of the questions. Wise. *

Originally Posted by DenisCasarsa

Thank you Dr. Wise Young and Joe. I have been looking through the forum, and am learning a lot about my present condition. I really appreciate all your info, from all of you!

I was operated by Dr. Ch. Bonnard in 1990 and by Prof. Narakas in 1991 at the Longeraie Surgical Clinic & Hospital in Lausanne Switzerland.

*****

The operation procedure in 1990:

"SUPRACLAVICULAR EXPLORATION OF THE RIGHT BRACHIAL PLEXUS: INTRADUCTAL AVULSION OF C5 AND C6.
- NEUROTIZATION OF THE SUB-SCAPULAR NERVE BY THE SPINAL NERVE
- NEUROTIZATION OF THE BRANCH TO THE PECTORALIS MINOR BY THE 3D
INTERCOSTAL NERVE
- NEUROTIZATION OF THE MUSCULOCUTANEOUS NERVE BY T4 AND T5.
- TRAUMATIC DISINSERTION OF THE TENDON OF THE PECTORALIS MAJOR.

The operation procedure in 1991:

- MODIFIED STEINDLER FLEXOROPLASTY FOR FLEXION WEAKNESS OF THE RIGHT ELBOW

*****

Today, I can only move my hand, on the right side, with more power on the flexion. Sorry to all for the mispelling or incorrect wordings, I'm a native French speaker.

I sent few emails during this past few weeks, and am getting some answer now. As previously said, I contacted Dr. Schroff in India, and got a reply yesterday, asking me to call tomorrow for a phone interview.

I think I could greatly benefit from your extensive knowledge, as to ask the questions which need to be addressed regarding her technique and work. I've been reading with attention many of your reports here, and although more dubious about the credit I used to give to the potential of her approach, I want to remain as open as possible, to all of your feedback and advices here, to take the right decision.

• 1 question would address the very nature of her work, what she is actually doing, what she would suggest in my case.
• How much it would be? (of course)

I am not a Doctor, and new to your terminology... I obviously need in my situation, with your help, to go through the "apparently", and "To my knowledge", to have clear answer which might benefit others as well!

• What does she injects?
• Where? intrathecally and intramuscularly?
• How would the Cells injected behave? Would they be rejected?
• Are the Cells immune-matched to the recipients?
• Is there a follow up after the procedure?
• Does she have any data available about similar previously treated case?

Dr. Wise, you raise here important questions and concerns... What would you tell her, ask her?



I also experienced with time a reduction of neuropathic pain, although it has always been part of my daily life. I had the 2 first operation shortly after the accident, which appened in November 1989. Are there to your knowledge any local cell transplant, which could alleviate the deafferentation pain?, ease the little muscles function I still have?



Doctor Wise, I listen and give credit to your advice, am open to hear anybody here, other Doctors or specialists, from Doctor Schroff, or Doctor Bonnard, my neurosurgeon in Switzerland, or any body else here.

Would you ask other specific questions?

It still hard to believe that so many people in this world are suffering from such condition, and have been deeply impressed with all your posts here. I believe it must be possible, nowadays or will be in a while to live with dignity, without pain!

Denis Casarsa

[DenisCasarsa]

Dear Doctor Wise Young,

Obviously, I already have a many questions, but would nevertheless greatly benefit from your answers and comments, at least to some of them!

With Kind regards

Denis Casarsa

[TAM63]

Originally Posted by Wise Young

... I do not recommend that you go to her. She is charging a great deal of money for an unproven therapy.

To my knowledge, there is no credible evidence that Dr.Shroff or other places purporting to implant stem cells are providing therapies that are beneficial for spinal cord injury or brachial plexus avulsion. What she is doing has no scientific basis ...

I think this pretty much sums it up.