A very good friend of mine has TBPI injury and as a result is a chronic pain sufferer. He has been to various doctors here in the UK, but they always seem to concentrate on the pain management (via painkillers, electronic devices etc) rather than wanting to do anything about the injury or the brachial plexus itself. Surprise, surprise they do a very poor job of the pain management as well, and seem to have "given up" unless he pushes them, which is not easy as this is not his only form of disability. My friends name is JJ, he is such a super friend and is like a brother to me - it is agonising to see him in such pain. He has already said that he would be willing to travel anywhere in the world to see the right specialist, if it meant that his pain would come to an end. His arm was amputated following an awful RTA after which he was in a coma for 10 months - we count it as a miracle that he even came around, but now it is so difficult to see him suffering from chronic pain spasms from his TBPI, which occur even more frequently when the weather is damp. This awful disability is ruining his life and preventing him from being able to do many things which he could do "single-handedly" (joke, he has a great sense of hiumour as he needs one).
Is there anyone who could recommend a course of action, or a specialist in the USA who I could contact by e-mail on JJ's behalf? The biggest problem seems to be that his original injury was over 20 years ago, so I think that it would really require specialist attention, of the sort we are having gtreat trouble finding here in the UK. When you think about this, yes it does mean that he has been suffering chronic pain for over 2 decades now! Surely there is a cure or solution somewhere that could help him. This message is genuine and desperate - Lord have Mercy. & I would appreciate any helpful replies.
Leon, UK
Need TBPI advice, trying to help a very good friend
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karlos
Re: Need TBPI advice, trying to help a very good friend
Hi Leon,
Everyone here knoes what your friend is going through ,the pain usually lessons after a couple of years but for a few it remains constant,
Medacation tends not to work for many and disstraction is for some the only form of releif.
A few people have posted here about DREZ lesion surgery and i know they do it at St James hospital in Leeds,This surgery isnt without its risks and it has been said that there is a 30% chance of paralasis in the legs,saying that of the people who have had it done it has been a godsend,as it has eradicated all the pain and is also perminant!
Ill try to get someone to post here who has had this done,they will be able to tell you more
all the best karl
Everyone here knoes what your friend is going through ,the pain usually lessons after a couple of years but for a few it remains constant,
Medacation tends not to work for many and disstraction is for some the only form of releif.
A few people have posted here about DREZ lesion surgery and i know they do it at St James hospital in Leeds,This surgery isnt without its risks and it has been said that there is a 30% chance of paralasis in the legs,saying that of the people who have had it done it has been a godsend,as it has eradicated all the pain and is also perminant!
Ill try to get someone to post here who has had this done,they will be able to tell you more
all the best karl
Re: Need TBPI advice, trying to help a very good friend
http://www.dundee.ac.uk/meded/help/sectiona/a8d.htm
Hi, sorry your friend is suffering with the pain, the above link is to a site that is for the reference of med professionals but the topic is relevant, hope it's useful.
Hi, sorry your friend is suffering with the pain, the above link is to a site that is for the reference of med professionals but the topic is relevant, hope it's useful.
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Need TBPI advice, trying to help a very good friend
Hi Leon. I'm sorry to hear about your friend's pain, but glad he has a good mate like you helping him!
This whole issue of severe pain in tbpi patients is a real biggie and affects many of us whether we amputated or not. There's a guy called VS Ramachandran who has a theory about this pain, here are a couple of links... http://www.macalester.edu/~psych/whatha ... epage.html http://amputee-online.com/amputee/phantom.html
Channel 4 in the uk made a programme about it a couple of years ago, check their website if you can, the programme was called 'Phantoms in the brain'. Ramachandran has come up with a method where peeps can get some relief simply by fooling the brain into thinking the missing or paralysed limb is still there and functioning, which seems to alleviate the pain. You need to set up a mirror at right angles to your chest so you can't see the affected limb but can see the unaffected limb reflected....it looks to you as though you have 2 functioning limbs. Then when the burning, crushing pain starts, stretch and move the fingers of the unaffected hand and look at the reflection....this seems to fool the brain into thinking sugnals got thru to the affected limb so it stops sending them, the pain eases. It really worked for me during severe pain episodes. It can be almost overwhelming seeing a working arm where there didn't used to be one tho....anyway, it's worth a try. Please be careful of surgical options, nerve injuries are strange things and what works for one might not work for another. Many of us have found that cannabis also works well, I see from the papers here in New Zealand that the govt there in the UK are planning to release a form of it for certain conditions to be available on the NHS, brachial plexus injury has been named as one of the conditions where it has been effective. Meantime, the rest of us continue to break the law in order to get some pain relief!
Good luck in your search, I hope your friend gets some relief soon :0)
This whole issue of severe pain in tbpi patients is a real biggie and affects many of us whether we amputated or not. There's a guy called VS Ramachandran who has a theory about this pain, here are a couple of links... http://www.macalester.edu/~psych/whatha ... epage.html http://amputee-online.com/amputee/phantom.html
Channel 4 in the uk made a programme about it a couple of years ago, check their website if you can, the programme was called 'Phantoms in the brain'. Ramachandran has come up with a method where peeps can get some relief simply by fooling the brain into thinking the missing or paralysed limb is still there and functioning, which seems to alleviate the pain. You need to set up a mirror at right angles to your chest so you can't see the affected limb but can see the unaffected limb reflected....it looks to you as though you have 2 functioning limbs. Then when the burning, crushing pain starts, stretch and move the fingers of the unaffected hand and look at the reflection....this seems to fool the brain into thinking sugnals got thru to the affected limb so it stops sending them, the pain eases. It really worked for me during severe pain episodes. It can be almost overwhelming seeing a working arm where there didn't used to be one tho....anyway, it's worth a try. Please be careful of surgical options, nerve injuries are strange things and what works for one might not work for another. Many of us have found that cannabis also works well, I see from the papers here in New Zealand that the govt there in the UK are planning to release a form of it for certain conditions to be available on the NHS, brachial plexus injury has been named as one of the conditions where it has been effective. Meantime, the rest of us continue to break the law in order to get some pain relief!
Good luck in your search, I hope your friend gets some relief soon :0)