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Former Member
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Nerve regeneration and/or painkillers

I have a friend who had an accident and broke his back.
For four years he has been in excruciating pain.
He's young, and it's difficult for him to see the light at the end of the tunnel.
Only because he has a son and a daughter and a loving partner did he decide to remain alive.
He worked with rehabilitating people with brain damage from strokes and accidents,
so he knows what he's up against.
He has one big wish:
- That WCG could take on a project dealing with nerve regeneration
so that he and many others in his situation could be helped.
He has one more wish, by the way:
- That development of pain killers that could kill the kind of pain he feels was a project we could crunch.

On these Forums we have many knowledgeable people from all over the world in all kinds of fields.
I read the Submit Proposal
which was kindly given to me when we briefly discussed Arthritis and Diabetes.
It does not directly deal with research in nerve regeneration nor development of new painkillers.
But if a project was deemed suitable, I would hope it could be accepted even as it is not on the present list.

Being a lay person with no scientific background whatsoever
I would like to pick the brains of my fellow crunchers:
How and where do I find a research institutions that deals with these two fields of research
and
meet the criteria for having a project accepted?
Would any of you help me, please?

[Nov 21, 2011 8:35:07 PM]   Link   Report threatening or abusive post: please login first  Go to top 
nasher
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Re: Nerve regeneration and/or painkillers

its not a simple thing...

first you have to find multiple groups who are researching those fields (cause i am sure not every one will be interested) then you need to get the names of the people doing the work as well as the assistants... you need to try to convince them the value of WCG and distributed computing...

without knowing a lot more about his issues i dont know what the doctors have tried and what else they can try... and also there is some drugs that can be used for other off label use to take care of issues

myself for my vertigo they have me on an anti-epilepsy medicine

have they talked about massage therapy or type of physical therapy or fusing parts of the spine.

as far as pain killers there are lots of good ones out there but for long term use most of them have serious side effects but are good for short terms...others are narcotic and have problems with addiction

also some people pain meds just don't work on.
myself i can not use products with codine in them
some people the entire opiate drugs do nothing (morphine and the like)

also remember ANY drug test can cause major medical or other ... um... side effects....

for example in 1991
Sildenafil formulated to treat angina ( a type of heart disease) it turned out it did not work well for that.... it did have a side effect though... you might know the product by its commercial name that was approved by the FDA in 1998.... Viagra.

your friend and yourself can talk with doctors and such they will probably know the companies to try to approach

one other chance is searching for off label use of drugs.

so lets see if i can help you with a plan

1) figure out what the issue is that he has... what is damaged and causing the pain and where
2) figure out every thing they have done to treat it (copy of medical record might help there)
3) figure out what options the doctors have any why they recommend and do not recommend each (ie fusing parts of the spine reduce movement)
4) what meds is he on and what works as well as dose not work and why as long as what side effects he is experiencing with each.
5) research the drugs he is on or has been on and figure out whats left
6) look up alternative medicine and herbals... be sure to talk to a pharmacist about what not to use with the drugs he is on.

i don't know how functional he is but remember anything dealing with the spine can cause major complications like paralysis and that is probably why they are being cautious.

have your friend make up a list of what surgeries he has had and what meds he is on and what meds do not work and his allergies... this is also good for any medial appointment.

for example
-----
My name
Blood type A-

In case of emergency contact wife's name (xxx)xxx-xxxx

Medications
1) Synthroid 200 mcg/ day
2) Cytomel 25 mcg/day
3) Celexa 40 mg/day
4) Meclizine (antivert) 25 mg/ 3x a day (AS NEEDED)
5) Claritin EQ 10mg/day (as needed)
6) hctz/triam 50/75 (Maxzide) 50/75mg /day
7) Gabapentin(neurontin) 900mg/ 3x a day
8) Diazepam (valium) 2.5 mg/day

Over the counter
1) Vitamin D3 4000 ui/day
2) Calcium 2000 mg/day
3) Centrum Multivitamin 1/day
4) Vitamin C 1000 mg/day

Herbals
1) Flaxseed oil 4000 mg/day
2) Garlic 1000 mg/day
3) Ginger root 550 mg 2x/day
4) Quease EASE (aromatherapy)

Surgeries
1) Feb 2010 Right side Thyroidectomy
2) Mar 2010 Thyroidectomy Completion
3) Apr 2010 Stapedectomy Right Ear
4) May 2010 Radioactive Iodine 175 mCi
5) Aug 2010 Stapedectomy Left Ear

MEDIC ALERTS
1) Allergy codeine
2) NO MRI <- medical implants in ear
3) Thyroidectomy (Thyroid cancer)
4) 2 Parathyroid’s removed (Thyroidectomy)
5) Vertigo
----------------------------------------

[Nov 22, 2011 5:01:25 PM]   Link   Report threatening or abusive post: please login first  Go to top 
Former Member
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Re: Nerve regeneration and/or painkillers

Thank you very much, nasher, for taking time out to address this.
I remember you being extremely effective and to the point when
the first post in "An old friends needs prayer" was made.
You have a very logic and analytic mind,
and I appreciate this post of yours more than you can imagine.

My friend lives in a country different from yours and mine
and the health services may be rather different than the American ones and the Danish as well.
However, what you have outlined is a very good skeleton for putting some system
to mapping my friend's present condition and document his history for further action.
And doing this systematic work may help him
- and/or his medical people and social workers -
better seeing what can and needs to be done.
Also it might boost morale and mood inasmuch as one can feel one does something oneself.

As to getting a research project inside the walls here at WCG - it is almost overwhelming.
And even with your good advice, it's still overwhelming for me, and I'm afraid for my friend as well.
This shall not deter us from thinking about what can be done
- altho my present stressful condition and my friends consuming painful one are not very facilitating.
I would not at the moment be able to imagine which institutions from my country
could be interested - but there might be a University Unit somewhere
- we have some relatively well recognised medico-technology research going on at one place.
I'll let it simmer on the backburner.
Maybe other crunchers have input as well in this regards.

rose Thank you ever so much, nasher love struck

[Nov 22, 2011 5:51:42 PM]   Link   Report threatening or abusive post: please login first  Go to top 
nasher
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Re: Nerve regeneration and/or painkillers

Simmering on the back burner is always good.

i have posted this elsewhere but the best way to get more projects here is to get more people crunching and making sure scientists and researchers can see that distributed computing and prove that WCG is the way to do it.
----------------------------------------

[Nov 22, 2011 6:08:54 PM]   Link   Report threatening or abusive post: please login first  Go to top 
Former Member
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Re: Nerve regeneration and/or painkillers

I think you're right, and I shall try to make some approaches
- well, dignified ones
to institutions in my country that I can imagine could be interested.
It does seem overwhelming
- but once you get started it may be doable
- one little country at a time
- and we are blessed with that medium called the Internet.

As to getting new crunchers - that's not easy. Your new Captain RCC_Survivor
has done a lot in real life as well as virtual life.
Even getting family and friends to do it is next to impossible ...

Thank you once again for doing this, nasher
I want you to have Base Camp's Rosie for distinguished behaviour.
I would have given you a normal one, but our Base Camp Forum is down;
you have the double I stored at Photobucket once upon a time, and you deserve it

love struck


[Nov 22, 2011 6:24:55 PM]   Link   Report threatening or abusive post: please login first  Go to top 
keithhenry
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Re: Nerve regeneration and/or painkillers

LM, you may be taking on a daunting task. There's a show on over here about folks with rare diseases who go from doctor to doctor trying to find out what they have and can spend years doing that. Since anyone can throw up a website these days, I'd be inclined to avoid most pain management sites with .com addresses. We have a problem over here ith what is called "pill mills". Those are "pain clinics" where the doc just writes prescriptions for pain meds for a nice fee without doing anything else. Handy for the folks hooked on those meds and a curse for those docs who are legitimate. I suspect the specifics of your friend's condition and injury will make an important difference, at least based on what I've read finding what follows. As for promoting a WCG project in this area, a research hospital/university will probably be your best bet. Persistence will be key as will patience and time.

I'd start with Christopher & Dana Reeve Foundation - this is the foundation Christopher "Superman" Reeve set up after being paralyzed after being thrown from his horse. He was very aggressive about finding the latest treatments and funding research.

Another place to check is Shepherd Center - this is a spinal injury rehab place here in Atlanta but it has a very strong national reputation as one of the best of its kind in the US.

I know I said to be wary of .com sites but what caught my eye about Spine-Health was that they had forums on their site. You will probably want to find places like that so you can connect with others in your shoes. You can benefit from their knowledge and work and avoid reinventing the wheel.

As for the research hospitals/universities, here are several sites that came up in Google for me. They're all pretty much in the eastern US so that's probably due to Google trying to think for me. In that case, it should give you some different results - a good thing.

Spinal Cord Injury Information Network - see also Pain after Spinal Cord Injury

University Hospitals Geauga Medical Center Spine and Pain Management Center

George Washington University Hospital

OSU Comprehensive Spine Center

I used university AND spine AND pain for my Google search.

Hopefully, the specifics of your friend's pain can identify a specific source as that seems to do a lot to determine what type of pain medication is needed.
----------------------------------------
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[Nov 24, 2011 1:29:23 AM]   Link   Report threatening or abusive post: please login first  Go to top 
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Re: Nerve regeneration and/or painkillers

Thank you very, very much for taking out no small amount of time to think about this post,
do the research, finding links, formulate and write it, keithhenry.
Your willingness and ability to help is without limits, and your help is very much appreciated
and it seems to supplement nasher's posts in the best possible manner.

You gave my friend and me a complete smorgasbord for us to take in. I have already suggested
he make a "history" as nasher "prescribed". That might show a pattern
- a pattern with holes in it that might be filled in by seeking information from the places you linked to.
Yes, Forums are very good, because you hear things from the horse's own mouth
and you can establish a dialogue and ask further questions.
We'll happily start using the tools you gave us.

Thank you so much, keithhenry love struck
- you too are hereby bestowed Base Camp's double Rosie for distinguished behaviour.


----------------------------------------
[Edit 1 times, last edit by Former Member at Nov 24, 2011 2:02:14 AM]
[Nov 24, 2011 2:01:40 AM]   Link   Report threatening or abusive post: please login first  Go to top 
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Re: Nerve regeneration and/or painkillers

Well the friend is me.
I fell with my bike about 4 years ago. I fell so my back was overstretch and pend to wrong dirrection(backwards) and then "pop". Because i did a lot of weightlifting and i was personal trainer i was very fit and i could stop backwards movement with every bit of my strenght streighten my back with alot of popping sounds. Sorry if my text is messy and with bad english. this is very hard for me and still makes me very dizzy and all i have gone thru since then comes rushing in once i start to think these matters.

I think i was in shock or something , because i noticed pain in my back next morning and my right leg didn't hold my weight for long. Well i got sent to mri from my job doctor and they did find:

Slipt spinal disk bigger in L5 area and it pushes agains nerveroots and another T9.T9 is causing burning pain after 1-2 mins of sitting,trying to do something like shave or just lift hands a bit(more stress to back).

There were vertebra sharpening as well in more than one vertebra.

For most parts that was it untill over year ago they did another mri and they found more.

There were degenerative disks found from chest down.

Pains are nerve pains and starting from chest down, but getting wors at my rightside leg starting from my right bottomsheek. Pain spots changing if i move my leg to another spot, sharp needles to bone like pain, well best way to but it is to say everykind of pain and then i have some areas where i don't have any feeling like under my right knee and growing timetotime.

My surgeon told me that there isn't no way now to get my pain go away with operation atleast not untill those degenerative disks have worn off and then might bone some of those together. Told me that there is too much to fix with too bad odds to give painless life" Even if we can fix all, there's a risk that pain won't eas up or even gets wors).

I don't have any medical documents or x-rays with me , because here in Finland everything is at hospitals and send to where ever is needed. We have free health care and i have to use that because i don't have a job anymore, because of my back issues. My own MD is very good, but she is overworked and have very little time to spend and i'm burned out totally so i have given up with it.

Pain doesn't help with sleeping and have been sleeping poorly 4 years now. Sometimes up 3 days without sleep and sometimes sleep all day(24H) if i can.

I have 1000mg acetaminophen/paracetamol 3 times a day and 150mg Tramadol hydrochloride retard(effects 12h) twice a day. With this i barely manage my days. Sometimes i take ibuprofein as well.

I have tried kodein meds, epilepsy meds and some older depression meds with nerve pain easing effects(doctor gave those to try), fysiotherapy, massages, workingout,back support wests, got one elektric pulse device from physio.

Here is some info for starters.
----------------------------------------
[Edit 1 times, last edit by Former Member at Nov 24, 2011 3:16:01 PM]
[Nov 24, 2011 12:24:57 PM]   Link   Report threatening or abusive post: please login first  Go to top 
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Re: Nerve regeneration and/or painkillers

Thank you for posting this and explain to us
how life has been for you for four years.
Viva Sisu!

rose
[Nov 24, 2011 2:51:44 PM]   Link   Report threatening or abusive post: please login first  Go to top 
mikey
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Re: Nerve regeneration and/or painkillers

Well the friend is me.
I fell with my bike about 4 years ago. I fell so my back was overstretch and pend to wrong dirrection(backwards) and then "pop". Because i did a lot of weightlifting and i was personal trainer i was very fit and i could stop backwards movement with every bit of my strenght streighten my back with alot of popping sounds. Sorry if my text is messy and with bad english. this is very hard for me and still makes me very dizzy and all i have gone thru since then comes rushing in once i start to think these matters.

I think i was in shock or something , because i noticed pain in my back next morning and my right leg didn't hold my weight for long. Well i got sent to mri from my job doctor and they did find:

Slipt spinal disk bigger in L5 area and it pushes agains nerveroots and another T9.T9 is causing burning pain after 1-2 mins of sitting,trying to do something like shave or just lift hands a bit(more stress to back).

There were vertebra sharpening as well in more than one vertebra.

For most parts that was it untill over year ago they did another mri and they found more.

There were degenerative disks found from chest down.

Pains are nerve pains and starting from chest down, but getting wors at my rightside leg starting from my right bottomsheek. Pain spots changing if i move my leg to another spot, sharp needles to bone like pain, well best way to but it is to say everykind of pain and then i have some areas where i don't have any feeling like under my right knee and growing timetotime.

My surgeon told me that there isn't no way now to get my pain go away with operation atleast not untill those degenerative disks have worn off and then might bone some of those together. Told me that there is too much to fix with too bad odds to give painless life" Even if we can fix all, there's a risk that pain won't eas up or even gets wors).

I don't have any medical documents or x-rays with me , because here in Finland everything is at hospitals and send to where ever is needed. We have free health care and i have to use that because i don't have a job anymore, because of my back issues. My own MD is very good, but she is overworked and have very little time to spend and i'm burned out totally so i have given up with it.

Pain doesn't help with sleeping and have been sleeping poorly 4 years now. Sometimes up 3 days without sleep and sometimes sleep all day(24H) if i can.

I have 1000mg acetaminophen/paracetamol 3 times a day and 150mg Tramadol hydrochloride retard(effects 12h) twice a day. With this i barely manage my days. Sometimes i take ibuprofein as well.

I have tried kodein meds, epilepsy meds and some older depression meds with nerve pain easing effects(doctor gave those to try), fysiotherapy, massages, workingout,back support wests, got one elektric pulse device from physio.

Here is some info for starters.


I am sorry about your accident, now it is your turn to make this better though. Your records of what has been tried and what hasn't could make all the difference, you are NOT a pincushion nor a "project" for some intern! Tr yand keep a record of everythign they do and why they are trying this or that, it will help keep you 'involved' in your own treatment and prevent them from trying the same old thing hoping for different results.

One thing you also might try is to contact the Atlanta back place mentioned in keithhenry's post and ask them for a list of things to ask your Doctor's to try. SOME hospitals take on patients as 'projects', your health care may even 'co-ordinate' with them if asked. I have always thought 'the more the merrier' when it comes to my health care issues. Kind of like brainstorming a problem, the mnore eyes on the problem the likelier it is to come with the best thing to try next. The Atlanta place may even have some ideas of "off label" things to try.

I wish you the best of luck and wil lelave you with this bit of advice they gave a friend of mine who broke his back 15 years ago...'nerves grow an inch a year, the problem is they don't currently know how to tell how far apart they are now, nor can they direct the growth paths'. Keep up the positive outlook, during the Vietnam War soldiers died on the battlefield from injuries that todays soldiers are going home from! Medicine IS advancing and one day you could walk out of that place on your own two feet!!!!
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