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….
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Doraflora
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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’.
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.
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….
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!
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.
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!
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.
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???
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…
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.
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.
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
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spinal stenosis
Update re Sensible GP, Rheumatologist not so much…
SPINAL STENOSIS and prednisolone
