United Brachial Plexus Network, Inc.

I hope it is okay if I post this question here. I don't have a brachial plexus injury, but I have an injury to a different nerve in my leg, of a rather rare type, so I have never found another person with the same injury either in real life, or online, and it seems like at least some of the issues would be similar.
I have a question about recovery. I had the original injury almost 2 years ago and then had a surgery to remove scarring around the nerve about 18 months ago. For the first 10 months after that surgery my strength got better and better. Not normal, but close enough to make me feel like I might actually get there. Then I had an abrupt decrease in strength, stayed the same for a while, got that peak of strength back basically overnight for only a week or so a few months later, lost those gains again over a couple of days, then gradually got even worse over several months. I had another abrupt increase in strength last week, although not nearly as good as my peak from before and it keeps coming and going. It is almost as if there is a switch that turns it on or off, and it has been going back and forth sometimes the same day.
All I get from my doctors is that it is very unusual to get worse after getting better, or "if the strength was there before let's hope it will come back again."
I was wondering if this is truly unusual (maybe I just whine about it more than they hear from other patients?) Has anyone else had a recovery like this where they have lost strength that they had regained? And if you did, did you finally stabilize near your strongest, or the weakest? Did the nerve stop functioning altogether?
Although I do notice the effects of fatigue, this is something different. I have had some of my biggest increases in strength after I clearly overdid it, and some of my biggest drops were when there was nothing at all unusual about my activity.
Thank you!!

Hi Pansy,
I know with my erbs arm and hand I always seen a curve in what I could do with it from day to day in my life time. I never had treatment or surgery for my erbs but it boils down to a level of day to day usage. When the curve went down I compensated with my none erbs arm more. In legs your other leg will compensate for your affected leg to a point If your condition worsen then it will get to a point that a doctor may help you at that point. Keep on with what ever you can do in-spite of the curve of usage from day to day Keep on top of it with the doctor and then dont worry about it because it just leads to DEPRESSION which is even worse some time more than the issues of your leg
I hope this helps,
Mr Positive,
Tom

i dont know for sure, but i think maybe the specialists that treat the brachial plexus nerves could also treat other nerves in the body. is there any one who knows if it would do any good for this person to see a BPI specialist? or do these drs only treat brachial plexus injuries?

I do think most of them do other nerves as well, and certainly nobody seems to specialize in this particular nerve. I have been working on a going for a second opinion. Between my research and advice from my doctors, I came up with Dr Spinner, Dr MacKinnon and Dr Kim, and they seem to be frequently mentioned here for brachial plexus injuries. I sent my records to Mayo last week, so I am waiting to hear from them.
I have tried keeping very detailed activity/strength and pain calendars trying to find something to connect it to and I gave up when I couldn't come up with anything. I definitely get weaker with fatigue and overuse, but that seems different. I feel like I can predict when that is going to happen, and if I rest it gets better, even if it might take a few days. I was at what I would consider my peak twice, once in February and once in April. There are a whole bunch of exercises from PT that I could do then and haven't been able to since. I had a little increase for a week in June, but that one wasn't as good as the others and then I had the one I had last week which wasn't as good as the one in June. I would say my average strength, and the lows, have declined as well since this started in February.
I do probably worry about the day to day differences more than I should, but mostly I think that is because when I am weaker one day I now worry that I may never get back to what I had the day before.