hi all its been a while since i have been on this site,
mark was supposed to go to america to have a c7 transfer but as he is nearly 7 years into his diagnoses of bpn it is now to late he was then scheduled to have a muscle transfer in feb but 3 weeks ago mark lost the use of his hand he was taken into hospital for 2 weeks and had a load of tests they think he is being attacked by another virus or else it could be a radial nerve damage,now they are saying if the hand does not come back they wont proceed with the muscle transfer if the treatment he has had does not work they are going to try some form of chemotherpy in feb i am worried sick in case it does not work please if there is anyone out there that would have any information on what is going on with him i would be realy grateful
please help we are desperate
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mamaofsix
- Posts: 214
- Joined: Sun May 11, 2008 5:20 pm
- Injury Description, Date, extent, surgical intervention etc: Second son, Cameron, left obstetric brachial plexus injury in 2005.
Primary never graft surgery at 3 months old at St. Louis Children's Hospital
and several rounds of Botox injections.
Re: please help we are desperate
Joy,
I don't have any information, but I will keep you and Mark in my prayers. Please keep us updated.
I don't have any information, but I will keep you and Mark in my prayers. Please keep us updated.
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: please help we are desperate
Joy
How is Mark doing? Are you still planning on coming to America for treatment or have the American doctor you were planning to use ruled our surgery?
Kath robpi/adult
How is Mark doing? Are you still planning on coming to America for treatment or have the American doctor you were planning to use ruled our surgery?
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: please help we are desperate
Joy,
You and your son are in my prayers daily.
Please keep us updated. WE are here for you too.
Hugs,
Carolyn J
LOBPI adult/70
You and your son are in my prayers daily.
Please keep us updated. WE are here for you too.
Hugs,
Carolyn J
LOBPI adult/70
Carolyn J
Adult LOBPI
Adult LOBPI
Re: please help we are desperate
Hello again Joy-
I tell you, your son has one heck of an odd condition. Since I was also told I may have a BPN caused by a virus, what you said concerned me. So, I looked up other uses of chemo-like treatments, assuming there is no cancer involved. This could be a very intense sounding treatment, but if it is a very resistant virus, or other type of microbe that is the cause, they may think it is the only way. Or, if it is caused by some sort of auto-immune disease, this could also be the way to go. I am sorry to hear the current developments. See below for a short reason for using chemo-agents in this treatment I found on-line.
“In the earlier days, when popping an aspirin for a headache was also referred to as chemotherapy, the word was used in reference to any drug or medicine employed to treat a disease. The word ‘anti-bacterial chemotherapy’ is used when antibiotics are employed to control a disease. In that sense, syphilis-treating arsenic compounds were the first modern chemotherapeutic agents. This was followed by other antibiotics, like Sulphonamides and Penicillin. In the modern sense it primarily refers to the cytotoxic drugs used in cancer treatment.
Cancerous conditions like Hodgkins lymphoma, non-Hodgkins Lymphoma, certain types of leukemia and testicular tumor are fully cured using these cytotoxic drugs.
Chemotherapy agents have also found use to treat non-cancer conditions like overcoming transplant rejections and to treat autoimmune diseases such as rheumatoid arthritis and multiple sclerosis.”
http://www.medindia.net/patients/patien ... herapy.htm
> hi all its been a while since i have been on this
> site,
> mark was supposed to go to america to have a c7
> transfer but as he is nearly 7 years into his
> diagnoses of bpn it is now to late he was then
> scheduled to have a muscle transfer in feb but 3
> weeks ago mark lost the use of his hand he was taken
> into hospital for 2 weeks and had a load of tests
> they think he is being attacked by another virus or
> else it could be a radial nerve damage,now they are
> saying if the hand does not come back they wont
> proceed with the muscle transfer if the treatment he
> has had does not work they are going to try some form
> of chemotherpy in feb i am worried sick in case it
> does not work please if there is anyone out there
> that would have any information on what is going on
> with him i would be realy grateful
I tell you, your son has one heck of an odd condition. Since I was also told I may have a BPN caused by a virus, what you said concerned me. So, I looked up other uses of chemo-like treatments, assuming there is no cancer involved. This could be a very intense sounding treatment, but if it is a very resistant virus, or other type of microbe that is the cause, they may think it is the only way. Or, if it is caused by some sort of auto-immune disease, this could also be the way to go. I am sorry to hear the current developments. See below for a short reason for using chemo-agents in this treatment I found on-line.
“In the earlier days, when popping an aspirin for a headache was also referred to as chemotherapy, the word was used in reference to any drug or medicine employed to treat a disease. The word ‘anti-bacterial chemotherapy’ is used when antibiotics are employed to control a disease. In that sense, syphilis-treating arsenic compounds were the first modern chemotherapeutic agents. This was followed by other antibiotics, like Sulphonamides and Penicillin. In the modern sense it primarily refers to the cytotoxic drugs used in cancer treatment.
Cancerous conditions like Hodgkins lymphoma, non-Hodgkins Lymphoma, certain types of leukemia and testicular tumor are fully cured using these cytotoxic drugs.
Chemotherapy agents have also found use to treat non-cancer conditions like overcoming transplant rejections and to treat autoimmune diseases such as rheumatoid arthritis and multiple sclerosis.”
http://www.medindia.net/patients/patien ... herapy.htm
> hi all its been a while since i have been on this
> site,
> mark was supposed to go to america to have a c7
> transfer but as he is nearly 7 years into his
> diagnoses of bpn it is now to late he was then
> scheduled to have a muscle transfer in feb but 3
> weeks ago mark lost the use of his hand he was taken
> into hospital for 2 weeks and had a load of tests
> they think he is being attacked by another virus or
> else it could be a radial nerve damage,now they are
> saying if the hand does not come back they wont
> proceed with the muscle transfer if the treatment he
> has had does not work they are going to try some form
> of chemotherpy in feb i am worried sick in case it
> does not work please if there is anyone out there
> that would have any information on what is going on
> with him i would be realy grateful
Good Luck!!!
Richard
Richard
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joy donohoe
- Posts: 76
- Joined: Thu May 15, 2008 6:26 pm
Re: please help we are desperate
hi there thank you so much for your kind words
joy
joy
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joy donohoe
- Posts: 76
- Joined: Thu May 15, 2008 6:26 pm
Re: please help we are desperate
hi kath no we are not now going to america,
we are seeing a fantastic surgeon who is hoping to do a muscle transfer if mark gets back the use of his hand first, america was only offering to do a nerve transfer which our surgeon says it is far to late now to have it done,so please god his hand will improve so he can have the operation,thanks a mill for replying.
joy
we are seeing a fantastic surgeon who is hoping to do a muscle transfer if mark gets back the use of his hand first, america was only offering to do a nerve transfer which our surgeon says it is far to late now to have it done,so please god his hand will improve so he can have the operation,thanks a mill for replying.
joy
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joy donohoe
- Posts: 76
- Joined: Thu May 15, 2008 6:26 pm
Re: please help we are desperate
hi carolyn,
thank you so much for your prayers i will keep you up to date on whats happining,
joy
thank you so much for your prayers i will keep you up to date on whats happining,
joy
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joy donohoe
- Posts: 76
- Joined: Thu May 15, 2008 6:26 pm
Re: please help we are desperate
hi richard, great to hear from you hope you are well,thank you for all your info realy appriciate it, yes its a real rare condition he has all the doctors baffled, there is about 20 neuro surgeons coming from all over to have a look at him
,so fingers crossed.
joy
,so fingers crossed.
joy
Re: please help we are desperate
I know all about baffled doctors. I baffled a few of my own. I even had my own diagnosis that I found on the internet, and still they were baffled. I hope one of the "lookie-loo's" has a constructive idea that will help determine what is going on and they are not just there as concerned on-lookers.
Richard
> hi richard, great to hear from you hope you are
> well,thank you for all your info realy appriciate it,
> yes its a real rare condition he has all the doctors
> baffled, there is about 20 neuro surgeons coming from
> all over to have a look at him
> ,so fingers crossed.
>
> joy
Richard
> hi richard, great to hear from you hope you are
> well,thank you for all your info realy appriciate it,
> yes its a real rare condition he has all the doctors
> baffled, there is about 20 neuro surgeons coming from
> all over to have a look at him
> ,so fingers crossed.
>
> joy
Good Luck!!!
Richard
Richard