United Brachial Plexus Network, Inc.

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

Joy,

I don't have any information, but I will keep you and Mark in my prayers. Please keep us updated.

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

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

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

hi there thank you so much for your kind words

joy

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

hi carolyn,
thank you so much for your prayers i will keep you up to date on whats happining,

joy

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

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