Lived Experience Forum

[BlueBay]

I'm sorry @Emelia8  i just saw tiur post 

I hate when I read you're in so much pain 

and I'm sorry you're struggling 

wish I could be there for you 

to help you 

clean your house and look after you 

I pray 🙏 today will be a bit easier for you 

big love and hugs xxxxooo

[Emelia8]

@BlueBay 😊💖🙏🌷

[Anastasia]

Gosh we'd be a pair together. No sleep between us. Party girls without the party @Emelia8.

Love you more and I hate you suffering like you are. I am so sorry Em 😔❤️

[NatureLover]

@Emelia8  so very sorry the terrible pain won't let you sleep...I too am wondering if you can have another injection for the pain?

Sending 💜 and wishes...

[Emelia8]

Thanks @NatureLover @Anastasia 

The orthopaedic specialist I saw last week, did suggest I give the spinal nerve root injections another go. Even though it provided minimal and very short lived relief last time. It could be more effective second time around. 

@HenryX I dont recall exactly which operations you have had on your back. The specialist I saw last week said I need a three level lumbar spinal fusion. As I am not keen to do that, he said a spinal decompression surgery would be next best. But warned that the fusion could still be needed in time. I have another apt with him next time he is up here, which is one day each month or two.

Would welcome a chance to pick your brain at some stage. Its all pretty scary. I am on my own, surgery would need to be done in Sydney, I would require between 2 and 5 nights in hospital (depending which option I go for), recovery is between 6 wks and 6 mths (depending which option I go for) and there are significant risks.

Emelia

[Anastasia]

Thank goodness he's suggested it again @Emelia8. I assume he's provided you with the means (paperwork) etc to make the appointment and get it done asap? I recall that it's difficult to get an appointment, I am wishing that this is not to be the case this time around for you Em 🙏

[Anastasia]

Oh I see that @HenryX is around. I am looking forward to one of "Henry's little books" in response to you request to pick his brain @Emelia8 😃 

I hope that it will provide you with some thoughts to ponder and in turn an informed choice 🙏

Hello gorgeous @Clawde how are you today? What treats lay in store for you this weekend? 

[HenryX]

Hello @Emelia8 

Your observation about risks is, I believe, correct. However, what I have been told, I imagine, is exactly what you have been told by the specialist. And what they have said, I believe, is pretty much standard for any operation, where they actually provide the percentage success rate. Not to minimise any negative outcomes, but we are given percentage chances of everything from being run over by a bus to catching the covid virus.

I would think that the possible risks have diminished considerably, even since I first had my surgery, about ~20 years ago. Certainly, from my perspective the benefits far outweigh the risks. I am still independently mobile, with limitations, which I do not believe I would now be, had it not been for the spinal fusion and laminectomy {S.F. & L.} surgery and treatment that I was provided.

What has been recommended for you sounds to be the same or similar to what I initially had. That was S.F. & L. of Lumbar 4, 5, & Sacrum(1).

Depending on developments the operation may require, as has been the case for me, to go up the spine in increments of one vertebral joint at a time. I have had two such further operations.

From my own perspective, the risks and the recovery time in terms of weeks has been a relatively small investment compared to the benefits, particularly of the first two operations, that have given me nearly 20 years of useful function, during which I have remained independently mobile, which I do not believe would have been the case without those operations.

I think that I have mentioned that I walk with a staff now, at over 70 yrs of age, that is not entirely unusual, for anyone of my age. The staff keeps my back straighter and more upright, and my gait more natural.

Before I had the first operation, I had reached a stage where I could barely walk a hundred metres and the pain in my back was very similar to what you have and are describing.

The first two operations were done at Royal Perth Hospital, the third at another major hospital.

I have lived on my own for most of the last 20 years or more and cared for my Mum, on my own, for seven years of her last ten years. Even during the last three years, while Mum was in residential care, I contributed to her care also. All that was up until July two years ago.

Needless to say, I would be pleased to answer any questions, from my own experience, that may assist you in making decisions regarding any future treatment that you may consider.

With My Very Best Wishes

@HenryX 

[Emelia8]

Thank you @HenryX , its nice to hear a positive story about spinal fusion. 

A friend of my husbands had spinal surgery some 20 odd years ago too.  And a number of further surgeries since then.  Like you, gradually working their way up the spine.  Unfortunately none of the surgeries provided much relief for him.  This year however, he had another major surgery to basically undo all his previous surgeries and start again from scratch.  He is now the best he's been for many years.  But it has been a dreadful road for him to travel over a long period of time.

For me, the back pain is more bearable for me than the nerve pain down the legs.  Thats because I can take strong pain killers and opiates which do help with the severe back pain, when I have it.  But unfortunately nothing helps the nerve pain.  So although I have managed the (at times) severe back pain for over 20 years, it is when the nerve pain becomes severe that I fall in a heap.  Which is what has happened this time.  I usually find that when nerve pain is particularly bad, that the back pain is less.  But perhaps thats just my perception, a relative thing?  The surgeon said that he would prefer to do both the laminectomy and the fusion at the same time.  And also that post laminectomy a fusion is often needed later anyway.  I think the laminectomy can cause a destabilising effect on the discs.

I have discussed the options with my physio yesterday, and she is anti-fusion.  I will also discuss it with my GP once he receives the specialists report.  I have some time to think about it and to make an informed decision.  Even if I said yes to surgery today, I would not get in for at least a couple of months I think.  Especially with catch up from covid and Christmas approaching.

Anyway thanks heaps @HenryX for taking the time and effort to explain all that.  I will digest over time.

Emelia 

[HenryX]

Hello @Emelia8

All that I write is not to persuade you one way or another, but rather to give you the foundational information that you will be able to use in discussions with people who are qualified to give you advice.

You refer to nerve pain and back pain as though they are separate. I have limited sensation in my feet and lower legs, that I believe can also have been attributed to the compromising of the nerves as they exit from the spinal column out between the vertebra with which they are associated. This was first pointed out to me by a podiatrist when she explained the route of the nerves from the spinal column and down the legs. The experience of nerve pain is the pain that I understand we are endeavouring to address with the surgery. It is likely that the back pain may be caused by the overuse of muscles in the back as we try to counter and compensate for the nerve pain. As was said to me by the surgeon;

"We don't operate because a person has back pain."

I believe, as I have been informed, that the lack of sensation in my feet and lower legs is the result of the irreversible damage done to the nerves before the operations that I had. Consequently, it is possible that not having the operations could continue to compromise and further damage those nerves. They are what connects all our peripheral functions to the brain. It is the reason that I use a staff because I no longer have the nerve responses between my feet, legs and brain through which balance is maintained.

Obviously, my concern for you is the potential for continuing damage to occur to the nerves in their pathways, by already existing and possibly increasing compromise of those nerves and nerve pathways.

With, as always, My Very Best Wishes

@HenryX