Jump to content

Pain developed in hands and feet after SAH


Recommended Posts

Hi everyone

Sadly by Sunday, all my symptoms had returned, back wearing dark glasses, ear plugs, headaches and stumbling about yet again.

 

I went back for my follow up appointment today. They're booking me in for a scan next Monday and making preparations for shunt surgery in a few weeks time. They are still undecided which shunt to go with, LP or VP.

 

Really hope this will be the turning point now in my recovery xx

How long does it take to recover from this type of surgery, and what is it like living with a shunt? 

 

Xx

  • Sad 1
Link to post
Share on other sites

Hi Bev

 

Sorry to hear your symptoms have returned.  There are a couple on here who have shunts and I'm sure they'll respond in the morning.  To be honest, they generally have good things to say about having a shunt to alleviate their issues.

  • Like 1
Link to post
Share on other sites

I have a shunt but I can't remember having it fitted or the recovery time as it was just after my SAH, whilst I was still in hospital. I have never had a problem with it and only had it reset after MRIs, because they can alter the setting on the type I have fitted.

  • Like 1
Link to post
Share on other sites

Hi Bev

first I am sending a big virtual hug and positive vibes as  I think i know some of what you are feeling. So basically your ventricles have some function, but not enough to regulate properly  and so then you live in a world of  ‘high CSF pressure’. The relief from an LP is short lived ( which is saying something as such horrid procedure] as once the effect kicks in you barrel to ‘low pressure’ and then climb back up again. 

 

I had shunt surgery in July 2012 after my SAH in the March before. Initially I spent 5 week after bleed in hospital, had Grade 4 SAH And EVD , sharing to give you context so I was in a pretty bad way. 

 

Prior to my second surgey to place VP shunt I spent 10 days whilst they deliberated to place a Shunt or not and I had far too many LP’s during that time to Try And manage pressure And kick start ventricles. It didn’t work . It’s not a time I like to recall if I’m honest.

 

The decision to have the Shunt was a relief, I couldn’t bear much more and wonder if you possibly feel similar. The surgery was hard, I will not deny that , but make sure they get the pain management approach right to deal with the effects of how much CSF gets lost during surgery. We can’t give medical advice but I will say that only subcutaneous slow release of meds was successful to manage pain For me in the days post surgery. I was a guinea pig at time as it’s similar to what they do for cancer patients.

 

I stayed in for another 2 weeks, ( missed the entire London 2012 Olympic s And id had tickets!!) . The scarring was quite significant, big haircut yet again And the surgery site was sore and  ached, but here’s the thing, even with all that I felt a bit better. I didn’t have the same pressure level once things settled. It did take me quite a while to get the right setting for me and I shared that story here 

However everyone’s different and I am VERY sensitive to any pressure change so I’m told...

 

Bev, any surgery is scary I know, we will all send you our best wishes once you get a date.  This will be a step back in many ways as you will Be floored again but by getting the pressure balanced your brain can better recover from the Hydrocephalus effects and bleed. Feel free to PM me .

 

daff 

 

 

 

 

Link to post
Share on other sites

Daff,

Thank you so much for your information, it really has helped. Yes I would appreciate any guidence, my symtoms are very similar to what you experienced.

 

I'm back to wearing dark glasses and ear plugs again, stumbling about. But at least I had a glimps of what improvements I can gain. It has worried me about having a shunt, but i've got no choice now, this is the only option I have.

 

Reading through your past journal, has given me hope, it's good to know we're not in our own, looks like i'll be joining the shunt club.

 

If that's ok, I would like to PM you.

 

 I don't know which shunt they're going to do yet . Lumbar or Ventricular? I've got ongoing neck and shoulder inpingement, with chronic bursitis, it's taking some time to settle. 

 

I'll keep you updated when I get a date to go.

 

Many thanks guys for all your replies of support, really means a lot xx

  • Like 2
Link to post
Share on other sites
  • 4 months later...

Long story short, I've kinda dragged my heels going forward into surgery. But that time has arrived.

 

Surgeon decided to try the Lumbar Peritoneal Shunt, L1-L3 with a tube diverting into my tummy.

 

I'm day 2 into my recovery, so glad of your advice Daffodil, really has helped, much appreciated xx

 

I guess my expectations of dark glasses off and ear plugs out, went out of the window. I've even had to wear ear defenders, as I can't tolerate the noise of a busy ward.

Just doing my breathing and trying to adjust to these strange sensations.

Surgeon said the pressure was high, was a good call to go with the shunt.

 

Xx

 

 

 

Link to post
Share on other sites

Oh my, day 3 and it's floored me. I feel like I'm back at ground zero, back to where it all started 18 months ago.

Sensitivity has gone through the roof, sound is distorted, lights piercing my eyes, just not coping, they tried to walk me to the toilet, bad idea! I ended up a jibbering wreck, didn't know what planet I was on.

 

They've upped my pain meds and anti sickness, I'm currently trying to ride this out.

 

Day 4 today, how long am I going to feel like this, when will I know when the shunt is regulating. Can anyone please give me some advise, tired and emotional xx

Link to post
Share on other sites

Bev, so you will have been high pressure before surgery  and living with that and now the Shunt is going to regulate it to keep it lower, your brain is going to take time to adjust to this new state. I imagine you are feeling very sick, noise and light sensitive. Make sure they keep your anti sickness medicine smoothed out m I had sub cutaneous slow release pain release which meant I didn’t have spikes so much of pain, Try lots of small meals, ask people to bring you snacks, you appetite will feel supressed but try hard to eat small and often, also if you feel really bad have a can of full fat coke. I don’t think this is medical advice but it’s what my neurosurgeon suggested post my Shunt surgery. 

 

try and Lie as flat in bed as you can bear and then when you get up to sit go really slow, really really slow, imagine your head lifting but tiny bit by bit. Then swing your legs around and just sit on side of bed. Take your breathes and stay put for a few minutes, five if you can.  Then try standing but don’t go anywhere unaided and always sit back down before lying down if you can. Then lie back but slightly elevated this time. Notice the difference.  Suggest you ask for commode or wheelchair to bathroom in the early  day’s, 

Practice that kind of movement before you start walking  movement  on your own and no sudden ones for now.keep your sunglasses on in ward! 

 

youve just had major invasive surgery, it’s going to have a real shock to the system I’m sorry to say but you will learn what is new state of balance. Not sure if yours has a gravitational valve , that can make a difference too. 

 

Ask if if there is an hydrocephalus nursing team, can anyone come and talk to you, that helps too. Shared experience of post surgery. 

 

Practices breathing and relaxation. And sleep as much as you can, it helps the brain settle from it’s heightened state of attack .

 

sending gentle healing thoughts. You’re in the Shunt club now. Xx

 

 

  • Like 1
  • Thanks 1
Link to post
Share on other sites

Thank you Daf for your words of wisdom. I'm gutted today, my consultant thinks the shunt's failed. Everyone sounding like daleks, sensitivity heightened with burning sensations in my head, neck and arms.

I can go home and give it a couple of weeks, to see if there's any improvement. If not, I'll have to have the VP shunt. 

I'm taking it steady giving myself time before I move, thanks Daf, I'll keep you updated xx

Link to post
Share on other sites

Beverley 

I have the one into tummy and took me a while to get used to it ..But before I had no shunt I remember very little.  Was annoyed when family had a row and told me about them ..Told them to not tell me their tales of woes in a nice way (It was oh shut up in my mind) lol nice Sis  I am !!

 

 I came home day after as I was so well ..Was still not with it for a while and didn't like the lump behind ear but it is part of me now.  

 

Before that I was asleep all the time talking to my Mum who died in 1976 and she wouldn't talk to me. She swam away from me I was in cuckoo land for approx 1 year.  Sisters sang to me .  When I eventually got well me and hubby had a row so i knew I was getting better.  

 

Sang a lot, spoilt a lot by Dogs who have now passed, covered in dogs toys when I woke up.  I am so happy to have come back to land of living.

 

Was 63 when this started and my Daughter found this site.  Looked about 83 awoke hair all grey  and an old dear looking back at me  xxxxx

 

Whatever you decide I hope it gets you back to as you were.    We are not alone in this struggle so head up shoulders back or I'll sing you a song .   Honestly it isn't pleasant.  All the best and hope to see you in Green room under Forums  soon xxxx

 

 

 

  • Like 2
Link to post
Share on other sites
  • 1 month later...

Thank you Win and Daf for your encouragement, i'm sorry I've not got back to you both sooner. My word I developed quite nasty low pressure symptoms following the shunt operation.

 

I've spoken with the Neuro Surgeon, who said he wasn't surprised this happened as I've had high pressure for quite a while and will undoubtedly take time to get used to the artificial drainage.

 

I'm still on Oxycodone long and short tec for the over drainage symptoms. I've noticed I'm able to be upright for a bit longer until I have to lay down flat to reset my system. I'm stuck at the moment due to Corona Virus lockdown, trying to cope until they can do the operation.

 

 I'm awaiting further surgery, where they're going take out the shunt and replace it with a Ventriculo-Peritoneal shunt. They've said hopefully, it'll be a bit less pressure sensitive and have more sophisticated valves that they can programme to help get the best balance between fluid manufacture and drainage. 

 

I know now just how much of a struggle it has been for me, it'll be coming up to 2 years end of May since my SAH.

But in the flip side, I know I need this operation, I do feel lighter in my head and kinda have been feeling like I'm coming back.

 

I understand that feeling Win, hearing and light sensitivity has dialed down a little too, still have a way to go at the moment, but I'm putting my trust in my neuro surgeon.

One thing I do know, I thank my blessings to our NHS

 

God bless you all,

 

Sending much love

 

Keep safe

 

Xxx

 

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...