United Brachial Plexus Network, Inc.

Hi all
I know a few of you have had amputations and some of you will know that I have been considering this for a while. About 3 weeks ago I asked my gp for a referral and it came through really quickly, I saw the doctor yesterday.
He has said 2 things I'm not too sure about, one, he wants to do a regional block of the brachial plexus before I go under with general aneasthetic which he says may reduce phantom limb pain. I have researched this and there are some studies which bear this out, but none specifically about tbpi. I think the pain I already get is a form of phantom limb pain and therefore I think there's no need to have the nerve block- I'm likely to get the pain anyway. Plus, how would a block help with all the nerves avulsed anyway? I am very leery of any invasive treatment which does not have a rational and provable benefit. Any thoughts on this would be appreciated......

The other thing is that because my biceps is so strong the doc wants to do the chop below the elbow rather than above. He demonstrated to me that I do use this movement sometimes, altho I wasn't aware of it myself! I think this will leave the arm too heavy, reducing the benefit of amputation. Thinking about it, maybe the biceps would support the arm once the useless lower arm and hand was gone........??? What level of amputation did any of you guys have??? I have to see another doctor about this, they will only amputate if 2 docs agree, so I have a bit of time to think/research further.
Any thoughts on this from anyone, amputee or not would be appreciated.
Cheers Jen NZ

I have had my tbpi for 24 years, I have use of my bicep only, the rest of my arm and hand is paralysed completely. There may be surgery that could restore a little more function, but not a lot more, nothing could restore my hand. This isn't in itself a problem, I just do everything one handed, but the strain of lugging the arm around and the alteration to my posture is telling on my spine and shoulder, it is not good for me to carry it around. The other problem is that I have no feeling in most of the arm and am concerned about the risk of infection entering an unnoticed injury which I know can cause a neural pain flareup. My lifestyle is extremely active and it's constantly getting injured, a sling is far too restictive in my case.
This medium can't show how we really feel, what I have written sounds blase but believe me it's not an easy decision, I am absolutely terrified at the thought of any surgery and worried that I might feel a sense of loss of the arm I have literally carried around like a baby for so long. I might still back away from it. Long term, though, I don't see any other solution in my case if I want to retain an active lifestyle.
I remember the thought of amputation freaked me out when it was suggested 3 years into my injury and continued to do so for the next 15 years or so! It took a loooong time to get here, but I'm 45 and it's come to a point where appearances are not a high priority, lifestyle is.
Any surgery is a hard decision. I think you already had yours, keep us posted with your recovery, it's always great to hear progress reports :0)
Jen NZ

hey jenny, my arm is amputated at the elbow because i would never have use of my elbow down. my shoulder and bicept are still paralyzed. if you are wanting to be comfortable amputate at the mid humerus, if you are wanting to try to use a prosthetic and you have use of your elbow you better keep it. it makes a world of difference using a prosthetic elbow as opposed to using your elbow. the bp block i have no idea, i did not have one and the pain did not get better or worse after the amputation. email me if you have any more questions. p.s. i do not regret ever having my amputation and could not fathom living my life totting around a useless limb.

Jennyb,

You may remember about my amputation back in Aug. I asked the Dr about doing the nerve block along with general anesthesia and he said no, he couldn't think of any reason that would help me. He took my arm off at the shoulder. I didn't have any nerve funtion anywhere in my arm or shoulder

I no longer have that weight hanging and pulling on my back & neck! Here's another kind of freaky thing: After my accident, my blood pressure shot up and stayed up. I took blood pressure meds for 3 yrs. I didn't take my blood pressure meds the day my arm was amputated. It wasn't given to me in the hosp. but my blood pressure was as normal as could be. I haven't had a pill since. My blood pressure is perfect. Isn't that strange?!

I pray you will for the Lord to help you make the best decision on how much of your arm to remove. Let me know when you schedule your surgery. I would like to pray for God to guide your Drs.

Take Care.

SusieKaye

Hi Jenny,

I had mine taken off mid way between the shoulder and elbow so I had something to fill a sleeve. The pain never changed, but it was a great relief to get rid of it. That was 20 years ago.

My shoulder has wasted but I do a range of exercises to keep it in as good a shape as possible.

I am very active too but I do not miss it and know it would be pain to carry it around.

Good luck.

Henry