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lynnandpaul

3 weeks after SAH...aching legs.

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Hi all,

Finding this site has been a godsend. So many resources and so many people with the same thing in common.

My name is Paul. My wife Lynn suffered a SAH secondary to an aneurysm just over 3 weeks ago. She was taken to our local hospital by ambulance then onto Kings College Hospital where she had her op. At the moment I'm unsure whether it was a grade 1 or a grade 3 as her ward notes said 3 but her discharge notes say 1. I will be calling the hospital next week to find out which.

So, she has just finished her course of nimodipine which is heartening and seems to be doing really well, so far as her injury is concerned anyway. Of course, Lynn is tired and her sleep is all over the place but apart from these things and double vision, she says she feels fine.

One thing that is an issue is that she has what she describes as a "relentless ache" in her thighs and occasionally, her lower back. We've spoken to the support nurse at Kings and also our GP and they both say that this is down to having 17 days of bed rest. Though is could possibly be due to the blood in the CSF irritating nerves and will eventually go. True, Lynn's thighs seem to be quite a bit thinner than she went in plus she also had some lower back problems about 3 years ago but the painkillers that she's been prescribed seem to have little effect. Has anybody else had this problem? And if so, what did you do? It's very very unusual for Lynn to cry but this is reducing her to tears as the ache is so bad. Just looking for a bit of direction

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Hi Lynn and Paul,

 

I was told by the BIT (brain injury team) from Kings "what makes you think you will walk again".

 

Tell wife never give up and sing as I have been there.  Keep her onwards/upwards and go out a lot it will

cheer her up and leave you skint lol.  It's been a while but I started walking Christmas 2010 with

the aid of a zimmer frame and the love of my family, I walked like an old woman(well I am)  !!

 

4 Years on and I can walk without aid 60 to 120 yards, better than what they told me !!!  it's a long haul

but keeping happy and singing helps.  So get going and never give up xx

Good Luck  (I could do more but lazy) xx Keep going xx

WinB143 xx xx  now smile

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Thank you for the lovely message and words of encouragement. I maybe should have been a bit clearer...Lynn is thankfully fine with walking now but just has a relentless ache which may or not be related to her injury. Just wanted to see if anybody had similar problems after leaving hospital?

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Yes, I did .... I was told that it was the blood dissipating down the spinal chord and irritating the nerve endings.  The 2nd week of my SAH was absolutely hell on earth due to the back and leg pain and I was on liquid morphine for it whilst in hospital, but that barely took the edge of it .... I do feel for her, as the pain was worse than the head pain.

 

17 days in bed wouldn't have helped her either .... make sure that she does drink enough water with her painkillers as they will get into her system faster and to keep hydrated generally by drinking water as that helps the headache.  It honestly does and will get better. You can also try a packet of frozen peas wrapped in a towel on her lower back if cooling it down helps or the alternative of a wrapped hot water bottle behind her back....either hot or cold depending on her preference.

 

If you haven't got one already, I recommend a V pillow .... it helps support the back and neck, especially when resting up on a sofa etc. 

 

If all else fails, go back to her GP and see if they can recommend a different painkiller.... one size doesn't fit all. I really feel for her, as I know what it's like ... I can remember once saying that the pain was worse than giving birth. 

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Thanks Karen, that's very encouraging. Yes, our GP mentioned about the blood in the spinal fluid irritating nerves but Kings said that it was more likely due to being laid in bed for that amount of time. Could well be one or both I guess. It certainly does look like there's been quite a bit of muscle wastage as Lynn's legs are quite a bit thinner. She's on co-dydramol and Amitryptiline at the moment but I'm wondering if physio will help. Thankfully, she hasn't had any headaches so far.

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I had 14 days in bed and lost about 1 stone in hospital ... muscle wasting and was as weak as a kitten.... a lot of us experienced the same. It's probably a combination of both. I personally think that it's too early to consider Physio for her....have a chat with her GP, he/she sound as though they know what they're doing and you can try a different route re: painkiller. I actually found taking Paracetamol had more of an impact than the Codeine based drugs.... but taking them regularly rather than waiting for the pain to kick back in.

 

I was also told by my Consultant that blood can show up in the CSF 3 months after the event ... but it obviously gets less and less ... and the pain less and less. 

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Thanks again Karen. Lynn is taking the co-dydramol every 6 hours around the clock and has been since she was prescribed them a few days ago. Yesterday wasn't so bad apparently but today not too good at all. Though it doesn't seem to relieve the aching, she can't lay still so has to get up and walk around which gives very slight relief.

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Sounds as though you might need to have a chat to her GP to get the pain relief sorted out if the current meds aren't helping. 

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Hi Paul , glad Lynn is home and hopefully you will find some advice in here helpful to you both in the coming months.

Similar to your wife and Karen . I had 31 days in bed , significant weight loss and I was slight anyway which meant muscle wastage and Lower back pain and pins and needles in my legs all of which were horrid and worrying to me and woke me most nights and kept me awake. Walking was hard work and it took a lot of time to build up my stamina And strength.

Pain relief was really important I took paracetamol and ibuprofen on a schedule advised by hospital and gp, alternating and then codeine based as needed if extreme but some days nothing worked. Things that helped; not lying in one place for too long, lying with my head raised when sleeping ,like Karen suggest a v pillow, gentle heat on the lower back, getting up very slowly in three stages from lying and doing some gentle leg , ankle stretches each morning and night. Also lots of water and not letting myself get hungry, I even had those supplements to help me put the weight back on. I also used to do a very gentle self massage on my shoulders before sleeping, no pressure just to soothe before I slept. It helped me deal with the worry of the pain.

It does pass but suggest she talks to gp about pain management and maybe physio when she is a bit further in.

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YES!!!  My husband "only" had a bleed with no apparent cause so no surgery and spent only a week in ICU, but the 3rd week when he was home his legs and his back were killing him.  Now my hubby is a no pain killer kind of guy so he just gutted through it.  But it was a hard go.  We would go walking daily on our property.  After that it started to taper off.  Now that doesn't bother him at all.  If only the headaches would go away.  if anything, those are worse.  But yes, my husband had an identical experience.  It surprised him for his legs to bother him that much. 

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We had a call from one of the neurosurgeons at Kings saying that the problem is most likely due to blood in the cerebral spinal fluid irritating the nerves and that it will eventually go as the blood disperses and gets absorbed. To some degree, also due to muscle wastage. The pain now seems to be varying between being bearable to being quite uncomfortable but nothing like it was a few days ago.

We've sorted out a heat pad and props behind the knees which has helped tremendously. All else with Lynn seems to be par for the course - overwhelming tiredness, not sleeping at night but dozing on and off throughout the day. She seems to be doing really well though and in good spirits which is great. Thanks to everybody on here for continued support, encouragement and advice.

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For them to be bothered and the information given is heartening and will have given you peace of mind. How many are just thrown out of the door and forgotten about?

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I came from Kings and was sent home in a wheelchair.

 

I woke up once shunt was fitted never walked until Christmas 2010 and been trying since

Dec.2010 now walking 50/100 yards but I will walk.  !!

 

Back kills me real bad most days but since I was told I'd never walk not to bad !

20 yards a year sounds bad but better than not walking at all.

 

Get wife help xx good luck

 

Win xx

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Wonderful Win,

 

That's just beautiful -  keep going lass!!  Brave doesn't do you justice!

 

Macca

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Thanks Macca xx you on here give me strength as we have all been through the mill and we can come out

smiling xx

 

Love to All on BTG XX

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Where do I start with the legs!  I had constant weird feelings in my legs and hips and back and neck for a little over 2 years.  I found that because they shifted around so much and were influenced by my digestion that it was relentless.  All of a sudden, the main pains lifted.  I still have bouts will them now and again, but I can deal with that knowing that I'll return to the state of mostly pain free.

 

The thing about blood causing the pains isn't true for some of us.  Pain is a very subjective thing and some people experience it even if there is no apparent cause for it or don't feel any when there is a glaring issue.  Pain is not the same as injury.  Just keep your chin up and hope for the best.  Maybe you'll get relief sooner rather than later.

 

~Kris

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