Backpain following NASAH

[Samswife]

Hi all🌺

 

Thank you for sharing all your stories- you have NO Idea what a help And comfort It has been the past few Weeks.

 

2 weeks ago my husband- Sam-had a bleed. He is 56, fit and  bit of a “health freak”.
He was at the gym, early morning session, feeling great, when he felt a “pop” in the back of his head (while doing chest press ) followed by intense discomfort. It was quickly followed by dizzyness and nausea. He did not pass out. 

He managed to get a hold of me, telling me he had probably pulled a muscle badly in neck, and could I drive him home. As I got I him, the nausea, pain and dizziness  was bad. 
But we drove home! Can’t really believe we didn’t go straight to hospital. 

At home this LOUD convulsive vomiting started. It Was different from normal

vomiting. It went on and on. With so much neck pain every time he vomited. 
 

We were talking about what to do. Sam wanted me to examine his neck (I am

a physio). I didn’t want to. Thought perhaps he had a badly herniated disc. Or meningitis.

or even a broken vertebrae.

 

I never thought he had a bleed. There was no neurological sign. No loss of strength. 
The GP came to our house. Pretty much took one look at him, and called an ambulance. 
At the local hospital they did a scan- and SO MUCH to our shock and surprise- it showed a subarachnoid bleed in the brainstem. 

Quickly he was airlifted to Much larger hospital. More Scans. And also an operation- which showed there was no aneurysm. After that everyone seemed a lot calmer. He stayed in intensive care till the next day-and in the hospital for a further 4 days. 

His early symptoms In the first days was nausea, still some  vomiting , headache, neck pain, tearful,  and pain in his buttocks. Over the next days he was given pain medication, fluids, rest and monitoring. Hospital was great. And it quickly became clear- that he was so so Lucky. He can think, and talk and move freely. For that we are gratefull. 

It has been a crazy ride. The first scare, supporting our sons, comforting my husband in this scary time. He was just SO brave and strong though. 

Back home he is still on painkillers. In the first days mainly for headache. But that is so much better. He forgets a few Things.. misses a word occasionally. .. struggles with too much noise or screentime. But.. we know it could have been so much worse. 

His absolutely biggest struggle right now is an INTENSE pain in his lower spine / sacrum Area. It takes his breath away. Makes him cry out in pain. Makes him uneasy in standing and walking. 

 

He is very anxious to find out what it is- but doctors don’t seem to agree. One doctor thought it was residue from the bleed in the spinal fluid. Another totally dismissed this, said it was the lying down/ inactivity. He DOES move around - Sits in chair, goes for short walks.

Has any of you experienced this?? How long did it last? What did you do ? 
Hope someone can share their experiences and advice. 
 

Much Iove

Tanja 

[ClareM]

Hi Tanja

 

I experienced this pain post by bleed in 2015. I was still in hospital but the pain in my lower body and legs was excruciating. I was told it was the blood dissipating down my spinal cord. I was on regular painkiller while in hospital and for a time after for both the headaches and the leg pain. Make sure your husband is taking regular prescribed or recommended pain killers. The pain did stop after a week or so.

 

It sounds like he has done really well only being in hospital for 5 days, however his recovery journey is at an early stage. Noise will be a big issue in the first few weeks, try and protect him from that. I couldn't have the volume very high on the TV. If your kids are young try and impress on them the importance of being quieter around daddy. His memory may not be as sharp as it was before and he may not be able to be as physically active as before. But keep faith time is a great healer.

 

I am fitter than I was before my bleed which shows that you can regain physical fitness after a bleed. My thoughts are with you and your family. I hope you continue to find some reassurance from the site, feel free to post any other questions you may have.

 

Take good care

 

Clare xx

[Tina]

Hi Tania

 

A very warm welcome to BTG.

 

I can relate like Clare, to all that your husband Sam is going through. I also had bleed in the brainstem, mine was a ruptured aneurysm. I was clipped. Like Sam i had terrible headaches, neck and back pain. The lower back pains for me lasted for about  2 months, but did ease. My balance was also affected and had double vision. 

 

I came home from being in  hospital just over a month with  Paracetamol and Ibuprofen which i was told to take together every 4 /6 hours. This did take the edge off a bit. As Clare has mentioned its important to take the pain meds regularly because boy do you notice the pain come back with a vengeance if you dont.

 

It is very very early days in his recovery, he is doing really well. Things will get better & better with time. Clare's post above should give you that reassurance  Just make sure Sam paces himself and does not push too hard too quickly. His body will let him know if he does. Rest rest rest and drink plenty of water, it really does help.

 

You take care too Tania as it is such a worrying stressful, emotional, scary time for you all xx

 

As Clare has said, feel free to ask any other questions you may have. 

 

Wishing you all well,

 

Take care

Love Tina xx 

 

 

 

 

 

 

 

 

[Swishy]

Hi Tanja,

 

I too had terrible pain at the bottom of my spine and was told it was residual blood ...  It was very painful, I couldn't rest my bottom on the bed without pain. The neuro team at the hospital told me about it and told me it would happen but it didn't happen until I was in rehab and they seemed a bit skeptical about it.  I was glad my neuro team had prepared me and it came and went in a week or so as they said.

 

I hope this pain passes for him soon. This is all a lot for him and you to go through.  I know it is scary and things don't seem to get better as quickly as we would like.  

 

Jean

[Rory]

I'm surprised a doctor dismissed that this was blood reabsorption along the spinal cord, which I was told by the doctors who cared for me was common and to be expected after a NASAH.

That part--the pain along the back, hips, and legs--lasted about 2 weeks for me, then gradually went away.
As you heard from others, other symptoms can last longer, months even, which varies from person to person. But for me, 13 months later, things are largely improved so occasionally I still get a bad headache.

 

Everyone's different, but this does get better, especially for folks who are in general good health. Mine happened while cycling up a a pretty steep hill--seems exercise-induced NASAHs are pretty common.

[Esedlock]

I also had pain and discomfort in my pelvis/ back when I had my bleed five months ago. Plus, I was very fit and strong AND then, boom, I was in the ICU for almost two weeks and in/out of bed for a month after that recovering. I had muscle pain from atrophy, I think, and that made the discomfort worse. My hips would ache like crazy but it has subsided, thankfully, so it might be blood reabsorption combined with muscle confusion. I hope he is feeling better. 

[jenc]

Hi. I hope Sam is continuing to mend.
I had a NASAH on 24/2/22 doing a very stretchy neck yoga move (and was very emotionally stressed so think my BP was high anyway!)

 

Discharged from Kings hosp on 28th, but back to my local hosp in Kent just 24 hours later with extreme cramping hamstrings /restless legs. They said it was blood in CSF aggravating the nerves at the base of the spine. Oromorph helped.

 

1 month on, 1 still get weird numb sensation around bum (they didn’t think it was Cauda Equina Syndrome) and very sharp pain off to the side of tailbone. Hamstrings still very tight and uncomfortable ( and shortened) but I’m coping with just paracetamol now. Xxx
 

[Mike2023]

Hi all, my name is Mike. Having read your very informative discussion I am posting here in the hope that someone can help me better understand my condition.

 

In June I experienced a NASAH. and was in a high dependency ward for around 3 weeks. I also had compications with Hydrosephalus so needed a Lumbar puncture and Lumbar drain. I was in bed without being able to sit upright for maybe 10 days.

 

I was on Morphine for much of the time but around two weeks into the stay I started to notice back pain. It is very different to the accounts above in that it was (and still is) in the centre of my back, my shoulders, and my right upper arm. Nothing low down as described by others. Having had a few I would describe it as feeling like a rib injury. Pain when lying down, coughing, sneezing etc.

 

My back has  also been very itchy in recent weeks. The more I have tried to do the more it hurts. Initially I could not lift a cup of coffee without supporting my right elbow with my other hand. I am a fit 58yr old Builder and have trained in martial arts for some years so not being able to so much as lift a hammer never mind hit a nail in is incredibly frustrating.

 

Initially in hospital my consultant suggested blood re absorption, though this has subsequently been dismissed by my post hospital care nurse. My GP has checked me over and suggested possible atrophy and/or that I may have injured myself while I was out of it  in hospital.  

 

Believing this to be muscular I will confess to having tried to do some work around the house and it Is clear to me I have pushed myself too far some days and paid the price for the next few - so I guess I may just have myself to blame

 

Finally, over the last week my partner noticed what she thought was a red rash all over my upper chest and back, also under my armpit.  I intended to go to the GP but this has vanished as quickly as it appeared. I have wondered if this may be a sign of blood re absorption but until now I have stayed away from any research into my condition so that is a shot in the dark.

 

So after around three and a half months since my haemorrhage I still have back pain and struggle to use my right arm

 

As this is different to those highlighted above I wondered if anyone else could shed some light on it.

 

Many thanks for any help in advance,

 

Mike

 

 

[Super Mario]

Mike, welcome to BTG.

 

As we are not medically qualified, we are unable to give medical advice.

Have you ever thought that the problem with your right arm could be an effect of your NASAH, after all it is a type of stroke. It would be well worth a visit to your GP as physio could possibly help with you regaining the strength in that arm.

 

The sooner you get treatment, the better the chance of regaining full use of that arm.

Have you a follow up appointment with your neurologist? You should have, it may be wise to discuss your issues with him/her as they are the experts. GPs are fine but SAH of any type are pretty rare and it is likely that your GP has never had a patient who has suffered one.

 

In fact, despite the rash not being there anymore, you should talk to your GP about it. It may have nothing at all to do with the NASAH but just coincidence. It is so easy to blame the NASAH for other things especially when they appear quite soon after a bleed.

 

We wish you well and would appreciate it if you come back to us with any answers you may get as they could help others

 

 

[Tina]

Hi Mike a very warm welcome to BTG.

 

Sorry to read you are suffering with constant back pain. Horrible for you.

As Super Mario has suggested i would definitely go back to your GP or Neuro Consultant and get them to look into it more. If the rash comes back try and remember to take pictures.

 

It is very easy to put things down to your NASAH  and everyone is different with their on going recovery.

I really hope you get some answers and peace of mind, as it is very worrying when you have gone through a major trauma as you have. Go steady. Well done on doing so well.

 

We look forward to hearing how you are getting on.

Wishing you well.

Take care

Tina  

[Mike2023]

Hi both, thank you so much for your replies.

 

SuperMario, Tina,

 

I did  have a follow up phone consultation with the specialist Neuro Nurse from the ward who told me that they categorically cannot associate my back/arm pain with the bleed so I should go to my GP and hope to get maybe x-rays. I've also had a phone consultation with the Community brain team regarding follow up support and that is ongoing

 

It's this (adamant) difference in diagnosis  which mystifies me as my Consultant in hospital original said that the pain was likely the blood moving down my body with gravity and that I could get pain as low as my thighs for months.  

 

I think they did every blood test known to man as well as two Angiograms and over an hour MRI scan of head and spine.  So It's this difference in diagnosis which has prompted my query here really I just wondered I guess if someone else had experienced upper back symptoms. Nevertheless I really can't thank the whole team enough they are all amazing and probably saved my life more than once

 

I'd also had a perforated eardrum very soon after the bleed on the right side and could hear nothing out of that ear for maybe  two months - that is almost fully healed , not sure if this is of any relevance.

 

So after speaking with the Nurse I immediately went to the GP who examined me thoroughly and could find no cause either.  This was maybe a month ago.

 

I've also had comprehensive eye tests - none of these have revealed anything untoward thankfully. 

 

My follow up appointment with the Neurologist isn't until January but I have the Community brain team coming to my house Monday. They have suggested Physio may be an option. 

 

In terms of my recovery the back/arm pain has actually starting to improve significantly in recent weeks/ days -  so coincidental with the rash. I will definitely take photos and visit GP again if it returns. 

 

Hopefully sharing my experience can also help others. 

 

Thank you both so much again for your help.

 

Mike

 

. 

[Tina]

Thank you for sharing your experience Mike. 

 

Hope all  goes well on Monday with the visit from the Community brain team and also your follow up in January.

Great they have have mentioned physio may be an option.

 

Please keep us updated.

Take care

Tina  

 

[JimK]

Hi Sam’s Wife,

Did Sam’s back pain resolve?  I am going through the same issue after a NASAH two weeks ago. I know everyone’s recovery is different but I’m just looking for some hope. Thanks. 

[Mike2023]

Hi again all. I have an update.. so having gone back to the GP again he suggested going back to basics with an X-ray of my back and right arm. Also a referral to CMATS. (Muscularskeletal) Turns out I have a wedge fracture to T6 of my spine! No idea how it happened as I have no recollection of any fall either before or during hospital stay. So now it's another MRI and blood tests to rule out other nasties. Apart from that I continue to improve, albeit slowly.

[Super Mario]

Mike, at least you have a sensible GP. You now have a diagnosis that is being acted upon. Please keep us updated of the outcome.

[Tina]

Hi Mike  

 

That's great you now know what the problem is.  Hope all goes well with MRI etc, wishing you well with your ongoing recovery.

As Mario says, please let us know how you get on.

 

Take care 

Tina xx

[Gary]

Hi All 

 

I was wondering if Mike2023 had anymore follow up?

 

I have back pain from around the same time as the first thunderclap headache. Middle of spine has a sharp pain, although no loss in arm function. The more I do and position I sit the worse it becomes. 

 

MRI this week hopefully, but I was wondering if the fracture you had potentially brought on the bleed?

 

Did you get to the bottom of it?

 

Best wishes 

 

Gary 

[Mike2023]

Hi Gary,

 

Sorry to hear of your experience. 

 

I continue to slowly get better and do indeed have more to share.

 

It turns out that  I had not one, but two wedge fractures T4 and T5. A further MRI showing that they occurred at different times. I have no recollection of any falls at all, either at the time of,  or after my NASAH.  My medical notes however note my complaints of back pain on hospital admission so at least one of them occurred during the three days I was at home immediately following the haemorrhage. 

 

Since then I have read that the area around T4 and T5 have extensive nerves linked to the chest, ribs and limbs. This could explain the extensive back, chest, shoulder and arm pain I have experienced. 

 

With regard to the arm I have had a further X-ray recently and am waiting on an appointment to discuss with my physio.  

 

So, in my case it seems the pain is not linked directly to the haemorrhage. Though I did have a lumber puncture in hospital and a fluid drain due to Encephalitis. So its possible that some of the back pain was due to that - and still may be as the back pain itself was always more central, rather than in the Thorasic (higher) region.

 

I'm assuming they've checked but Is it possible that you fell at some point? and have fractures? ( I had to push to get scans even X-rays as they were more concerned with keeping me alive at the time) No gripes regarding that  

Also, did you have a lumber puncture etc?

 

My main problem is ongoing memory issues so I apologise for any inaccuracies in the technical terminology used here. I find myself constantly checking what I have said or thought previously and that is very frustrating, so in this case I haven't. There's only so much I can write at a given time. Though I am very pleased to contribute as it is  so important to hear others' perspectives and experiences. 

 

Regarding this do you have a local Community Brain Injury Team? Their help and online meetings are verrry  helpful. 

 

Anyway , I hope this helps and as others have said things do improve. Keep thinking positive  

 

Mike

[Gary]

Hi Mike 

 

Many thanks for the update and I’m sorry to hear you are still suffering from the memory issues. 
 

I don’t remember falling, however I do remember stepping off a curb and jarring my back around then. My thunderclap headache first happened in the gym and over 5 days had 4 more but all on exertion. 
 

The back pain was a dull ache before I went into hospital and while in for 3 days. Had a lumbar puncture which was positive but CT and MRI showed no aneurism. back pain now is more acute and I was  told back pain was blood dissipating, but now told probably not so waiting for a full spinal MRI. 
 

My guess is a fracture of some sort as seem to have lost height in a recent health check (days after the first thunderclap headache). Unfortunately I waited 10 days for a gp to call me back and during that time I went to the doctors for the health check, mentioned everything and he just sent me on my merry way telling me my bmi was a tad high. 
 

Hopefully my mri will shed light on the situation.

 

Thanks for replying and I hope you keep recovering well. 
 

Best wishes 

 

Gary