Sprakly

[Hopeitwontbebig]

Hi Sprakly, thanks for posting on other thread. Ralph(?) Birch was the surgeon that we were recommended, but London was a bit far for me to travel everyday to visit DH, so we found Henk Guile in Oxford. Graeme (DH) was airlifted to Milton Keynes hospital after his accident - horrible horrible hospital. The visiting hours were so strict, I couldn't see him until after 3pm, so therefore didn't see my poor kids for a week apart from mornings. He had his orthopaedic surgery done at Milton Keynes, I then begged for a transfer over to Oxford.

Thomas Carlsedt told us about tendon transfer surgery which he said Graeme could have when he'd reached his recovery end point in about 2-3 years. I'd read online about muscle grafts in America, I didn't realise they were doing it in the UK too so that's promising.

Apparently there's a specialist Brachial centre in Leeds, but again, that's a bit far. Mind you I would fly to the other side of the world if it meant it could help him.

It's sad that your DH still gets pain. We keep on getting different stories from different professionals re pain. His physiotherapist says the pain is mostly due to the nerves regenerating during teh healing process, but the neurosurgeons paint a much graver picture re pain longterm. What drugs does your DH take if you don't mind me asking. Graeme takes Amytriptiline, Gabapentin and Diclofenec. His pain is mostly under control, but sometimes he suffers badly for a few days.... he described it at the weekend like someone was trying to shove his arm up a cow's bottom, the DC thought this was hillarious! We / I do his physio twice a day, it's shocking how quickly his arm stiffens if we miss out a session.

Like I said before, it is so nice to meet someone who is living with a Brachial Plexus sufferer.

I've just read your post to my DH and he's said to ask your DH what bike he's getting next!! At least he's still got his sense of humour!! x

Hi there,

Sorry about the delay. lol about bike - well...I think sy (my dh) has had enough of bikes for one lifetime! However, saying that he was also a keen mountain biker pre-accident and we are off to London tomorrow to try out a recumbent sports bike - he is trying to sell it to me, saying that when the babies older he can buy a little trailer type thing to attache and take him/ her for rides - men, eh!?!

Back to the injury - sy says hi, by the way! - basically he underwent neurological testing with Prof Birch to see if there was any chance of repairing the nerve damage and also to see the extent of the loss. Unfortunately, at this time, there is no way to repair nerves damaged through this type of injury. I am very interested by your finding re: stem cells - sounds promising!

However, on the bright side, Prof Birch then went on to work on the practical surgery to improve the mobility that he did have. Sy has had extensive surgury on his left shoulder, both wrists - left three times, right twice. He has had really success with the tendon transfer - he is now about to lift his left wrist and has more strengh in the arm as a result.

Re: pain. As a rule sy doesn't take any pain relief now. He was on a cocktail of drugs, but with chronic pain, sometimes the side effects of long term pain killers actually negate the pain killing effects (stomach trouble, tiredness etc). Pain is a funny thing. In all reality no one really knows what an another persons pain is like. I have suffered from various hip and back problems (hey, sy and I are a right old pair!) and have had surgery. I, too, stopped taking pain relief as I felt it impaired my quality of life. Apparently nerves grow back at 1.5mms a year, so as sy gets older he will likely to feel more pain. The nerve is renewed but the signals no longer work.

About twice a year he will come down with a cold or something and the nerves go into over drive. About 18 months ago he had to go to hospital for mophine as the pain was so bad and his arms 'jump' with nerve activity. However, I must stress this is the exception and not the rule.

Sy is amazing. He is unable to do everything he did before but he has learnt to adapt over time. He is amazingly positive. At the time of the accident he was a chef, but obviously he had to give that up. He was in intensive care for 4 months then transferred to rehabilition unit for 14 months. He decided to go back to college and studied design and he graduated 2 years ago! He does a desk job now (not design related) but is a total star how he got through it.

I am not familiar with Thomas Carlsedt's work, but I will certainly find out more - he sounds very good. I personally can not praise Prof Birch highly enough - he has god-like status to me! He is very practical and works on regaining indepedence. The muscle graft is a very new procedure and they are starting to operate on wheelchair users with weak/no triceps first. I realise you are in a different position than sy was, as you have a family to consider, but I would try and get at least a referral/second opinion from Prof Birch. Mention sy - he's a star pupil!

Hi Sprakly, sorry for delay in replying I was visiting inlaws in Somerset... survived phew!

How did you get on looking at recumbent bikes, any luck? Graeme was a keen cyclist as well and we used to go out as a family packing the bikes on the bike rack. He went out with the kids a couple of weeks ago and rode one handed, but this isn't ideal obviously, although he's was very steady on it. I'd have come straight off, I'm not so good on the balancing thing, which is why I never got on the back of his motorbike, I prefer 4 wheels!!

Sy must have been in an horrific accident to have suffered a bilateral BPI, and a stroke.. and to be in intensive care all that time, goodness, awful. His Mum sounds like a saint. I know how much work it is doing the physio on just one arm, but two. Plus all the day to day care that he must have needed. At least with Graeme he is pretty much able to do all the things he did before, he's SO determined. The day he was discharged from hospital I moved the car and by the time I got back, he'd done his laces up one handed... his left hand as well, he was right handed. Bless him, he's learning to write left handed. He signed a Christmas card for his Aunt and wrote Graeme, age 34... bless! His writing looks like a 5 year olds.

How did Prof Birch test Sy's nerve function? Prof Carlstedt and Hend Guile tapped on Graeme's neck to see if he gets any sensation down his arm. I was wondering if Prof Birch used a more sophisticated method?

Graeme's got a physio appointment this afternoon, we haven't been for a few weeks, so it'll be interesting to see if she sees any improvement. I hope so. Graeme says he can feel the front of his shoulder more, down to his collar bone, so that's promising.

I think a lot of the recovery is down to individual determination. Would you agree with that. Would be interesting to see what Sy thinks.

Sorry, this is turning into a long one again.... I used to be a secretary so type pretty fast.. sorry

PS hope you had a good weekend and are feeling well. See you on the other thread as well. Nicky x x