another cervical stenosis update!

[Doraflora]

going onwards from my last post re my husbands stenosis, we finally got a copy of the neurosurgeons letter to our GP at the weekend.

It’s filled me with horror tbh. I know these professionals have to put things bluntly, but he really spelled out a negative picture. Officially classed it as “Chronic Degenerative Spinal Disease “.

He said he was “concerned” about the amount of bad wear to the discs, and if things are left as they are, things will get worse, and should my hubby have a bad fall then it could be fatal as there is nowhere for the spinal cord to go!

Now, they couldn’t guarantee surgery to be successful, if he had it, probably the opposite, & yet if left alone it’s not a great scenario either. Damned if we do, damned if we don’t!

Currently my husband does not have pain, and is pretty mobile for his 78 years. In fact no one would suspect anything wrong with him if they saw him.

I feel like I’m living with a time bomb tbh, but am trying to remain upbeat and so many people have so much more to deal with.

I feel better now I’ve put this down on here as hubby doesn’t ask questions, doesn’t want to talk about it much, and does bury his head in the sand. It’s the way he is!

Thanks for reading this saga….

[piglette]

I am so sorry. I suppose if you break it down Chronic means that it is a long term problem, Degenerative means it will not improve, but might get worse and Spinal Disease means it refers to the spine. It is a concise way of explaining the problem in medical speke. I am not sure doctors are taught to make things sound ‘softer’.

[Doraflora in reply to piglette]

Thanks, Piglette.

[PMRpro Ambassador]

So sorry you got such a clear assessment - can't help feeling it is the sort of thing that would have been better delivered F2F/ Hugs - I had a husband like that too.

[Doraflora in reply to PMRpro]

Tbh, at the last appointment the neurosurgeon did explain things in detail, but when you read things in black & white, and in more detail, it brings it home to you a bit more.

I’m remaining positive, as at our ages we all live at risk of developing something….

[PMRpro Ambassador in reply to Doraflora]

And at those appointments you DON'T take it in, that is well known. Even my husband didn't and he was a healthcare professional himself.

[Maxgate2 in reply to Doraflora]

Is there anything that can be done to slow down the degeneration of the discs? Might a soft collar protect his neck or could specialist physiotherapy help? My spine condition is degenerative and I am tactfully reminded of the fact by regular questionnaires I receive from the British Spinal Registry as I am on the Degenerative Pathway! My advice to your husband would be to enjoy the moment, absorb himself in what ever interests him and to be thankful that he has you!

[Doraflora in reply to Maxgate2]

Hi Maxgate. No, the NS didn’t mention being able to slow things down. Don’t think that’s possible tbh.

He’s not in any pain apart from some pins & needles in one arm. We’re aware of what to look out for.

So it’s just a case of living life, enjoying things and going with the flow.

He knows he’s lucky to have me! I keep reminding him🤣

Thank you for your lovely encouraging words.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this… and it should have been discussed F2F … it wouldn’t have made the news any better, but at least it would have been delivered in a more sensitive way.

[Doraflora in reply to DorsetLady]

Hi DL. You’ve probably read my reply to PMRpro above.

Life is tough for so many : we’re just one of those having something to deal with. We’re certainly going to enjoy our lives as much as poss now…

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

Very true -nobody knows what tomorrow holds. Best wishes 😊

[S4ndy]

I have considerable degenerative disc disease. When I saw my neurosurgeon I could hardly walk because of the pain.

MRI showed that I had 3 prolapsed/bulging discs along with lots of osteophytes growing on my vertebrae. I also had symptoms involving my bladder. This is where things get tricky as the nerve being compressed was the cauda equina which can end up being an emergency. My GP referred me to the local NHS hospital. Unfortunately the wait to see a neurosurgeon was over 2 years unless it became a dire emergency! I still haven't received that appointment!

I opted to use my medical insurance and see a private consultant. I am so glad I did. Referred me for nerve conduction tests to ascertain which areas of my spine were causing the problem. Turns out that 4 areas were contributing. I had surgery last April on 2 of the areas and it's made a huge difference to my pain level and taken the pressure off the nerves. My bladder issues all resolved too.

From what you say your hubby is not experiencing symptoms at the moment and you have seen a neurosurgeon. I would therefore just be keeping an eye out for any changes in pain levels, numbness or bowel and bladder changes which would warrant a visit to the Emergency Dept. I am afraid to say that many people are walking around with undiagnosed back problems but at least your hubby has been forewarned. I think doctors set out the worst case scenario when talking to other doctors and don't always explain things properly to the patient.

My advice to you would be to carry on enjoying life but just keep an eye out for the warning signs. If your hubby develops severe pain then don't hesitate to go back to see if anything can be done to help. It can be very scary though!

[Doraflora in reply to S4ndy]

Thanks so much for your support, S4ndy.

My husband had nerve conduction tests about a month ago, which showed he has carpel tunnel syndrome. He says the pins & needles he gets is much better since doing the exercises the physio gave him.

The spine issue doesn’t appear to be giving him any pain atm. It doesn’t affect his walking.

The NS did spell out the signs to look out for so, as you say, we are fortunate that we know about that. [if he hadn’t gone to his GP about the pins & needles & subsequently get a referral to the neurosurgeon, we wouldn’t be aware of his spine condition].

So we’re just going to get on with life and enjoy it.

Thanks for your support. I don’t know what I’d do without all the lovely people who have posted replies back to me.

[Doraflora in reply to S4ndy]

Hi S4ndy.

A bit of an update on hubby. For about the last few weeks we have both been suffering with back pain, but hubby’s hasn’t got any better! Tbh at first we thought (&still do) that it is our mattress (it’s completely lost the guts in it now: not helped by a 6-year-old granddaughter bouncing on it. New bed on order!!).

However: hubby’s lower back pain is only eased by paracetamol. I’m wondering if it is the crap bed mattress or any issue with the spinal stenosis?

I keep suggesting phoning the neurosurgeons key nurse & having a word, but hubby doesn’t want to atm. I’ve also suggested a chiropractor to see if they can help, but it’s like banging my head on a brick wall.

I’m worried! But I worry about the slightest thing anyway.

I just felt like I wanted to offload (again).

[PMRpro Ambassador in reply to Doraflora]

He's a big boy - he has to take some responsibility, The Key Nurse is there for a reason - and I think there is some reason!

[Doraflora in reply to PMRpro]

He does accept that & has said if his back doesn’t improve then he will contact the GP.

The frustrating thing is, our new bed won’t be here for about another 5 weeks and all the other beds in the house are too soft for him. He’s been like Goldilocks trying them all🤣

[PMRpro Ambassador in reply to Doraflora]

Is it too expensive to get a mattress topper to improve one of the beds? But even blaming the bed is a get-out. I think it needs looking at, it might be something else. Lots of people pin their hopes on the new bed only to discover they have spent a lot of money for nothing,

[Doraflora in reply to PMRpro]

No, they’re all well past it tbh. It’s only the little single bed which is pretty new, but that was just bought as a new one for the spare room as a back-up.

It’s alright my husband taking paracetamol every 4 hours for the pain, but I’ve told him it’s only masking the cause.

I’ll keep wittering at him until he does something

[Doraflora in reply to S4ndy]

Hi S4andy. Just a bit of an update:

After relentless nagging by me, hubby relented yesterday [just to shut me up🤣]and we phoned the neurosurgeons nursing specialist.

She was extremely encouraging and said she’s not worried as hubby is not presenting any of the warning symptoms that we had been warned about. She said that it’s usual for bad back pain to have flares from time-to-time (sounds familiar to those of us with PMR) and to carry on with the paracetamol.

She also recommended getting a referral to a physio for exercises to strengthen the lower back.

I’ve just 4re-read your original post and, like you, he did have nerve conduction tests some time ago. Carpel tunnel syndrome was diagnosed but the tingling in his arm has more or less gone now and nothing else was mentioned.

She was going to let the neurosurgeon know about the chat we had yesterday.

Sorry for this long saga!

[S4ndy in reply to Doraflora]

That all sounds promising. If he's asymptomatic then that is really good and yes flares are inevitable. I usually find my back flares when I do anything different like going out for the day or cutting out fabric for sewing etc. I need to factor that in and make sure and take rest breaks and painkillers and pace myself.

I think referral to a physio is a great idea. It's the core muscles that need to be strong for back problems. A physio will give good advice on that. I am a qualified exercise teacher and so do understand how everything needs to be kept working. If your hubby is up for it a gentle Pilates class might help with those core muscles. See what the physio says. You could go together perhaps. Swimming is another great activity for building core strength and I swam 2 x a week following my back surgery. Not like Olympic swimming just a gentle few lengths to build up gradually. It all helps x

[Doraflora in reply to S4ndy]

Well, I belong an only exercise group (since Covid - and she’s so good I’ve never stopped). Think she does Pilates, so I’ll check it out.

You sound remarkable, S4andy. You’ve gone through so much by the sounds of it. Hope you continue to strengthen yourself and enjoy doing the things you love.

Omwards and upwards!x

[PMRpro Ambassador in reply to Doraflora]

An "only exercise group" - only what?

[Doraflora in reply to PMRpro]

Oops! Predicted text and, yes, I didn’t check it.

I meant ‘online’ exercise group 🤣

[PMRpro Ambassador in reply to Doraflora]

I suspected as much but my brain wasn't aligned with predictive text!

[Doraflora in reply to PMRpro]

It’s a pain at Times, predicted text, but useful a lot of the time

[Hidden]

When i read this post it seemed to reflect your feelings after your husbands first consultation.( esp the the bit about the consequences if he fell and hit his head) As I recall you were much happier after a second one. Is it possible this latest letter relates to the first not the second consultation???

[Doraflora in reply to Hidden]

Hi sillydogsmum. Well, after the second consultation and the NS explaining everything, we both felt confident hubby had made the right choice.

However, the letter that came this weekend more or less reiterated what we’d been told, but it stated in no uncertain terms that as hubby gets older, and at more risk of falls, he seemed to paint an even blacker picture, also mentioning the immortal words “end of life”, which hasn’t done us much good, even though we know the consequences of bad falls.

I know doctors have to say the worst possible scenario, but if only they could just think how they’re wording something.

Hope I’ve explained this okay. I’m weary after doing a 5 mile walk today to clear my head…

[Hidden]

Walks always help. In reality if neck starts to bother you can get back to them and review your options depending how troublesome the symptoms. A catastrophic neck event, as you fear , and as the NS evokes, is possibly less likely than any other major life event.

[Doraflora in reply to Hidden]

Very true. It’s a bit like saying “I’d better not cross the road, I might get run over”. Sometimes we just have to get on with things and carry on as normal.

[Whippetygirl]

could your husband wear a gentle neck brace during the day and remove it at night just to give him a little support and maybe some support should he have a fall.x

[Doraflora in reply to Whippetygirl]

It’ll be worth considering if things change.

[Hidden]

''Grant me the serenity to accept the things I cannot change,the courage to change the things I can,and the wisdom to know the difference. ''

[S4ndy]

Hi DorafloraIt can be a worrying time when you see know your back pain can turn into something serious.

In my experience, men make dreadful patients. Firstly they think they are infallible and then when diagnosed they are in denial. A whole year of nagging my late husband to see a doctor as he was getting out of breath and had terrible leg pain. By the time he saw the GP and got sent to hospital it was too late

When I found out what was wrong with my back I did try to carry on as normally as I could but very careful not to do things that would possibly make my condition worse.

A year after my operation I am ready to get my electric bike serviced and start to use this instead of my mobility scooter. It's in the car ready to go to bike engineer tomorrow. It's been 3 years since I cycled so I've got to start from scratch again.

I am still living each day as it comes and coping with whatever my various health problems throw at me. Life is short, enjoy everyday as if it's your last xxx

[Doraflora in reply to S4ndy]

Thank you so much, S4andy. You’re always so reassuring.

My husband is usually positive, and today he’s been working in the garden, with me periodically keeping a careful eye on him!

But after much nagging from me he says he will see the GP if his back doesn’t improve. He has no other new symptoms other than the back ache, which we still think could be attributed by our mattress.

I’m sorry you’ve had such a torrid time, but the bike sounds a positive step forward.

You too take care and enjoy these gorgeous sunny days😎