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Posted

My husband is day 9 from a PMSAH. He is having severe low back and sciatic pain that his current combo of meds (oxy, fioricet, robaxan) is not effectively treating so he continues to get IV dilaudid. Everyone (including him) wants him to get off the IV dilaudid but it's the only thing so far that effectively treats the leg and back pain (or it at least makes him drowsy enough to sleep through it).

 

Did anyone else experience this kind of pain? Right now it is rivaling his headache in terms of intensity. If you did, what were effective treatments? We have also been using hot packs which help some. 

Thank you in advance!

 

Amy

  • Like 1
Posted

Amy. I had dreadful back pain and in fact couldn't walk unaided for quite a while afterwards, that could have been due to lying flat for so long or the number of Lumber punctures I had  but either way it was a most unpleasant side effect.  

 

Blood travelling into spaces it shouldn't be can cause havoc and the only thing I found was heat packs, gentle heat as you say and keeping my meds going oh and just plenty of fluids. 9days is no time at all and the amount of medication I was on at that point was mind boggling and if I went past the four hours I can tell you I was begging for more.

 

I can't comment on the ones your husband is taking but one thing that stuck with me from advice I was given was that in order for the brain to get past the messages of pain you need to be rested from the pain itself so not allowing it to spike and that's what the pain relief does.

 

Prior to SAH I hated taking any pain medication and so after I finally got out I was trying to be 'brave' and battle through until the Pain clinic team explained to me that extending time between my pain relief actually wasn't helping in my case as that used more brain energy in dealing with the pain. 

 

So so I guess my advice is keep taking the pain relief under usual guidance , yes it's good to get off the really hard stuff but give it a bit of time but if your husband feels his pain is getting worse then it may be worth checking back with the treating hospital. 

  • Like 2
Posted

I have some bad discs in my back that make my back "go out" about one a year, but I usually am better in about a week.  Interestingly, I just spoke with a guy yesterday who has a bad back.  He has been to the hospital many times and usually just gets pills and PT. 

 

However, he told me he tried a chiropractor and within a week he is pain free.  I have never been to one, so I can't recommend one personally, but I have heard this a couple of other people say a good one who knows what he is doing can do wonders.

 

Of course this would assume the pain is from something related to alignment.  If it is a direct result of the SAH, this may not apply.

  • Like 1
Posted

Hi

When  in hospital I remember having awful back and leg pain. I was told it was the blood dissipating and it did pass after a few weeks. I was left with coccyx pain for a while longer but all resolved eventually. 

 

As Daff says being a hero to the pain is not a good idea. Keep the pain meds topped up as being in pain will not help his recovery. 

I hope he starts to improve and is in less pain soon. Keep us posted. 

 

Clare xx

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Posted

Hi Amy,

Welcome to BTG, I had a lot of back and leg pain after my SAH, like Daffodil I was on a lot of meds while I was in hospital, when I was discharged home I was still on a lot of pain meds for quite some time.

 

It`s very early days in your husband`s recovery, you will find as time goes on the pain will ease somewhat, making sure the pain is kept under control is the key thing as Daffodil has already said.

 

I wish you both well as you both start the recovery journey, make sure you look after yourself also, it`s a stressful time for you too.

 

Look forward to hearing how you are both doing,

Love

Michelle xx

 

  • Like 2
Posted

Amy I have been going to write a post on back pain, so apologies for jumping on your thread.

While in hospital I had numerous lumbar punctures which led to terrible back pain, I couldn't lean or bend forward as the pain was excruciating, when I mentioned it to the nurses they just said my pain meds will help with that,....

I am now almost 6months post SAH and my back pain is so bad at the moment. As you say Amy, it is pretty much on par with my headaches.
Nothing I do or take seems to ease it.

I suffered with sciatica for many years before my SAH and got quite used to the pain in lower back and leg, this seems much worse. I have the usual pain but also the sharpest stabbing pain in the bottom of my back. I don't know if this is the result of the lumbar punctures or just the sciatica has got worse.

I have literally given up on my GP. The ones I have seen have no knowledge of SAH's and no sympathy with back pain.

I guess i'll suffer in silence.

  • Like 2
Posted

Deb, I don't think you should just put up with it. As I mentioned above I had more than my fair share of LPs post SAH and also again later just before having my shunt placed and each time this played havoc with me causing considerable back pain. It seems inevitable to me that the spinal nerves are on occasion affected or at least irritated by these procedures, certainly the blood irritates as well. . 

 

Once I was able to , after leaving enough recovery time following the shunt surgery which including incision through the stomach muscles , I was able to start a very gentle exercise routine to regain some amount of the stomach and abdominal strength I had previously had and this I think more than anything has helped my back pain. As I said I couldnt walk unaided initially , I now do two long walks each day. 

 

Core strength gets wiped out I think by this kind of trauma and also the delicate ecosystem  of fluid around our brains and spines is disrupted which in turn can show up existing weaknesss so I think you just have to gently find a way to establish a new core balance at pace that suits you and as much as your pain during recovery allows.

 

BUT the other thing is it could be you are doing too much and this is where the signal is showing  up. Keep a diary, see if there is a trend But don't just suffer in silence. Never do that. X 

  • Like 2
Posted

I had real bad back pains and Doc gave me injections for Sciatica which helped the bad pains but I have ongoing pains when I walk over 200 yards and it is stopping me walking,   Did not help that a new OT came in and bent my legs until they cracked.  I felt every bone in my hips crack. 

 

She was one young girl who didn't know what she was doing, she came 4 days and 1 of those days she never turned up and 1 day she had kids with her and had to rush.  So in 2 days she told our Doc I was up and walking.

 

Good when you get a miracle worker ..not !!

 

Good luck All xxxxx  Misery Win xxxxx lol

  • Like 2
Posted

I too had lower back pain, it started in the hospital and I thought due to the way I was lying, I never mentioned it to the doctors in hospital. It got worse when I was home and found even trying to sit was "a pain in the bum". I phoned the GP surgery to get a telephone appointment with the doctor to ask if this was normal after a haemorrhage.

 

My doctor called me but she didn't think it was due to the haemorrhage, but to be honest she didn't,t know a lot about  my haemorrhage and asked me about that. She did ask if I needed stronger pain killers and said give it another week. I did and yes by two weeks it was going. I would try to have a walk outside but even to step down from the curb it was painful. 

 

When I see so many people mentioning the same thing I think it surely must have something to do with the bleed and the affect it has on the nerves. 

 

I was was very fortunate with my bleed being a Perimesencephalic haemorrhage and didn't need surgery, I was able to cope with paracetamol and the odd codeine, but even codeine sends me strange so I took the regular prescription for that and tried to keep breakthrough pain away. Didn't always work I have to say. 

 

I hope all starts to correct itself soon and no lingering problems remain.

 

Irene 

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Posted

I don't actually remember having my SAH, but I do remember the back pain. I can recall memories from around 3 weeks after my SAH and around that time I started to experience excruciating back pain.

 

I was told by the hospital that this was the blood draining down my spinal column from the bleed. I think it lasted a couple of weeks and then started to ease up. I didn't find any real way to deal with it beyond resting and taking a mix of pain-killers.

 

In terms of the longer term - around 6 months after my SAH my walking started to deteriorate and I also started to get pins and needles in my torso and other symptoms. I was still in rehab at this time and seeing a physio who said that this was different to what I had originally presented like.

 

I went back to the hospital where I was treated for further tests and a spinal MRI revealed I had archnoiditis and arachnoid cysts. The archnoiditis is an inflammation of the arachnoid space in the spine and causes pain. The arachnoid cysts are fluid filled sacs that push on your spinal cord - these are what cause my issues with walking.

 

I believe that most of the time the blood dissipates without causing any lasting issues - it is just a matter of getting through the pain at the time. If you are still having issues Deb I agree with Daffodil - I think you should push to try and see someone at the hospital and get checked out.

 

Gemma

  • Like 2
Posted

Although it was, now, over three years ago that I suffered my SAH I do remember having horrendous back/hip and leg pain.  It was so bad that during the second angiogram I had spasms (almost like seizures) and it was dreadful.  I had assumed it was because the bed I was in was an air bed - and I have always had hard/firm mattresses, so hearing this brought back some memories and understanding.

 

I found great relief from my sciatic pain by seeing a chiropractor, however, I wasn't allowed anything to do with neck adjustments for about a year after my SAH.  Massage was also helpful, but not as much...

 

Rotation between heat and cold helped me a lot once I returned home.

 

Thank you for sharing.

  • Like 1
Posted

Do you think it could be to do with the lumber injections we had ?  Base of spine and so on ??

 

We all have had some pains and I still get them 7 years on nearly hmm !! just a thought.

 

Be well all

 

Win and hands a smile around to all with back aches

  • Like 1
Posted

Thank you to everyone who took the time to answer this question, it has been hugely helpful. 

My husband didn't have a lumbar puncture so I don't think it's (only) that. 

 

Today is day 13 and last night was the worst night yet with the shooting nerve pain and muscle spasm. He's on a muscle relaxer but they may change it or up the dose. 

 

They tried neurontin (gabapentin) but my husband felt it made his headache worse. Did anyone else have a similar problem with it?

 

Thank you again,

Amy

  • 2 weeks later...
Posted

I too experienced a PMSAH a month and a half ago, this is my first post. I would say around day 4 or 5 of my hospital stay I experienced lower back pain/ spasms and severe leg cramps. These lasted for about two weeks after I was discharged.

 

While in the hospital I was only taking acetaminophen and occasionally oxycodone for the pain. The meds didn't help much with the leg and back pain. I stopped taking the oxy all together by day 6 and was only taking acetaminophen ( plus nimodipine and getting heparin shots in the stomach).

 

Every time a nurse would come in I would tell them about it,  but they just looked at me cluelessly and didn't offer much advice. Some just assumed it was from laying for so long with limited movement.

 

I drank plenty of water everyday and all things considered was moving quite a bit. I thought if I could get up and walk around that would help with the cramping and pain. So I would walk several laps around the floor each day .

 

Even walking my legs would spasm and cramp up. Especially when I would first get up my legs and back would spasm almost making my legs buckle. It got too much to tolerate so I asked if there was something else they could prescribe.

 

Then they gave me a muscle relaxer, that didn't help either only made me loopy. So I didn't take that again . The heat packs seem to work the best.

 

I'm sorry I wish I had a better answer for easing the pain . Eventually it got better, took about two and a half weeks from the initial pmsah for the spasms to completely go away.

 

Tell your husband to hang in there and hope he is feeling better. 

 

Gayle

 

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  • 1 month later...
Posted

Hi everyone

 

I haven't been on for a while. I'm having severe mobility problems, I had my perimesencephalic sah 3/11/16. I'm also slightly annoyed and not sure what to do. My gp sent me to a stroke unit who I must admit are doing things, I've already had a full MRI of lumber to thoratic spine, just awaiting results. I am struggling with severe memory loss but the consultant told me a brain angiogram was done whilst I was in hospital. I'm sure I didn't have this as I only had brain MRI as bleed didn't show on ct scan and 3 attempts at lumbar puncture was unsuccessful ( I have damaged discs already).

 

To my knowledge they have to go through the groin for this procedure and although my memory is bad now I would have known at the time if they would have done this. I remember going into MRI scanner etc. Question is, should I query this with consultant or is brain MRI clear enough to spot any abnormalities. Would really appreciate your advice. Mine was a perimesencephalic sah and I was in a general hospital it didn't have a neurology department so they had to liaise with the neurology hospital. 

 

Wendy.

Posted

Hi Wendy,

 

This is really one for your consultant.  I had three lumbar punctures (fortunately the last one was successful).  They also went in at my groin to coil me and the resulting pain was awful for weeks afterwards, but over time it got less and less.

 

You say your doctor sent you to a stroke unit.  Well, that is the right thing to have done because a SAH is classed as a kind of stroke.  Most people seem to associate strokes with the heart and see it as a heart attack.  Ordinarily, it isn't.

 

A stroke is more associated with the brain.

 

If you watch the advert on TV about watching out for signs of stroke, (FAST) Face [does it drop on one side?], Arms [can you lift them?], Speech [is it slurred?], Time [get help as fast as you can], then you will see that it is the brain that controls those first three functions, not your heart.

 

Yes, they can go through the groin to coil, but they can also clip, where they operate on you in more conventional fashion.

 

You really need to ask your consultant about this one, not us. We can't give medical advice, because we're not doctors, but he/she can and it will be a darned sight better than any we could offer. Memory loss is common amongst SAH sufferers, so that is not unusual, but you will develop coping mechanisms over time, like noting things down, repeating things and so on.

 

Get to your consultant Wendy, that's what he's there for, so don't be shy, get in there and ask as many questions as you can in the time given.  Write them down before you go so you don't forget any of them.

 

Let us know how you get on and what he says in return.

 

Good luck, I wish you well,

 

Macca

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