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It's over 18 months now since my last session of radiotherapy for jaw cancer where they removed bone from leg to reconstruct new jaw.
I've had the all clear, signed of from all my nutritionists, speech/language, physios, etc. and not got another meeting with consultant until September (had a couple put back due to COVID)
I'm reasonably healthy apart from a bit of lymph-oedema in neck and weight is good now after losing 6 stone plus and getting too thin.
The problem I have though is I get quite wobbly on my legs, It's hard to explain but I feel like a puppet on strings, sometimes feel like I'm walking on a tightrope, if the ground is uneven or path has a cross slope I feel off-balance to the degree I have to put my arms out, my spacial awareness is terrible, hate walking near people (which is handy at the moment).
I don't think it's anything to do with the operation on my leg, as it's both legs
I mentioned it to my consultant 12+ months ago but he said it was nothing to do with the cancer or treatment, may be a bit of fatigue as my weight was so low at the time.
12 moths later though, 2 stone heavier (but better for it) my legs are still as bad, if not worse, and I've also recently started nearly getting cramp at night (in my shins where I've never had it before)
I think it may be a bit psychological, as if I really confidently and determinedly go for a good walk I'm fine, but the more I think about it, start slowing down the worse I get.
Anyone else have long term problems with the treatment effecting your legs or balance?
Not sure that 7 months post constitutes long term but......
I struggled with dizzy spells about 4 months ago (still have an odd bout), weird balance and also hips to knees weird feelings (like funny pins and needles rippling through) for a month too. Most have now gone. I did a 2 mile walk a month ago and felt fine, then struggled a bit just doing light housework the other day. I think (for me) some has to do with weird RT after effects but, amplified by Covid playing with me mentally and physically. I can't make any sense of it all, but I know that there have been numerous talks on how this strange time is effecting us-perhaps that is it ??
All the best
I too had dizzy turns after my first round of radiotherapy in 2013. It turned out to be low blood pressure that happened from time to time. It was worse if I put my head down or got up suddenly. Also found I got dizzy and began to feel sick if I became dehydrated or stood in one position for too long. It only happens now and then and has improved with time. I have to still make sure that I drink plenty of fluid so I don't become dehydrated. Apparently it is postural hypotension.Generally am fine now though.
Also this round of radiotherapy and after my operation in October last year I still have good and bad days in relation to energy levels. Some days I manage a lot and other days I can only manage small amounts of work. I get really annoyed with myself as I feel that I should be able to manage better by now but have decided to go with the flow and on low energy days just don't do too much. Having more good days than bad days now so I am really thankful for that.
A positive mental attitude does help a lot and that is thanks to the many friends on this forum that have given me encouragement when I was struggling.
Time is the thing and we just have to be patient although that can be really annoying.
i am 16 months out and I do find my balance is not what it was. After RT finished I noticed (when I did start noticing that I wasn’t as sick as I used to be) that whenever I bent my neck down I got a fizzing sensation down my spine into my bum and down my legs a bit. It wasn’t severe enough to suspect Lhermitte’s but I did think there might have been some collateral RT damage. I never bothered anybody with it because it doesn’t bother me too much. If it is concerning you then mention it at your next check up. it sounds as if otherwise you are well so chin up
I also had those symptoms you describe and decided to get my bloods checked at my GP surgery, including thyroid. Turned out I had an underactive thyroid which is fairly common after rt. Luckily my consultant had already told me that it was important to get regular blood tests plus blood pressure tests after treatment due to certain late effects. Might be worth getting checked out.
I have to say, despite being on Levothyroxin for the hypothyroidism I still suffer with balance issues and have to remember not to get up too quickly or make any sudden movements as I get very dizzy. The medication has certainly helped with the wobbly legs and other issues though.
Thank you fort this. I thought I was going nuts !!
Hi Penrod, I remember you well as I had the same operation and reconstruction to my lower jaw, I'm pleased the other guys have shed some light on your issues, as I never had any of these. I do however get a painful ankle /foot where they took the bone. It's ok during the day when I'm active but as soon as I sit down the pain appears so I take painkillers if it gets too bad. Hope you manage to get the wobbly legs sorted my friend. Take care .
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I've put a bit of weight back on (not a lot), still get tired and had quite a few problems with my lower middle neck (near my trachy) so will ask doctor about low thyroid once this covid is out the way.
In general my balance is OK it's more that my legs are weak with regard sideways movement, I feel off balance if the path has a slight camber or when having to step to the side, I also feel like I'm shuffling.
In general, the bad leg has been fine apart from one really bad bout of cramp. I sometimes get what feels like the onset to cramp but not had it like that again
Funny thing is, I also had it happen to my good leg, which is why I don't think it's connected with the operation.
I have had a pain in my foot, but put that down to the cramp really, it normally starts in big toe and just goes up my foot a bit, just hold my toe tight and it usually eases it.
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