Sorry to hear you are in pain, if it is any help, I have had many fusions/bone grafting and decompresions over the years and although it is all lumped together under the same label of "failed back surgery syndrome" by pain management, I really do hate that term as each operation has, in my mind, been a raging success.

The very first getting me off crutches, the second out of a wheelchair and the third off of crutches again, all with a 60% or above reduction in pain.

So I personally have quite a poisitive view of surgery due to my own experiences, but then again I guess it is a little easier for me as since my accident as a kid I have always had pain and don't know any different... Also pain is eased by lack of stress due to zero cost to myself due to the UK NHS.

Sorry I,m not really helping am I

Really hope you find a good solution and get those pain levels down.

Wingy x

Hi Pam, sorry I didn't reply to your outreach email a few months ago. I'm sorry to hear that your in such pain again. We had a reunion in February from the Input course and all of us who have implants are in more pain than before. It messes with your head.
I too have been told that I have failed back surgery syndrome, but like Wiggy, I don't consider that to be the case. I've had 8 operations in my c spine, and a fracture in my t spine. I am not paralyzed, so to me, my surgeon has always been someone I trust wholeheartedly.
My pm however, they have to label our pain. I would doubt any of them have chronic pain. With the NEVRO senza, we don't know whether the pain is coming naturally, or being caused by the machine. Those on older systems can feel when the machine is too high or too low. I said to one of my friends who has the old implant, that we are all passengers in our lives at the moment, as the system is so new, it's always trial and error. I've had my implant since August 2013, and they've only just managed to help my arm pain. Now will it take them the same time to find the right settings for my back. I'm on more slow release morphine than before trial, twice as much. At the moment, I'm trying to come off my top up morphine. It's a journey of which we have no control, and I know I feel helpless at it all. All of the people who were with me at input at St Thomas' in London, feel the same.
Take care, and gentle
Barbs

Dear friend
I thrills me to hear of successes
So very few posted
As only those in pain look for answers
and stumble upon this beautiful site that
has helped me in soooo many ways
And to hear someone is not having to
go through as others
You MUST celebrate
One of few we hear of
You go

Hi Wingy, I do miss my time in the UK, that said, I only once did the merry go round of the NHS 1991 through to 1996. 1991 saw me hospitalised in the London clinic, all costs then covered by my travel insurance. I was in there for a month and discharged myself in order to start a job (which helped me establish my career).

Anyhow that time saw the beginning of the merry go round from the national orthopaedic hospital just up from Baker Street station to being put in full plaster in 1992 from the armpits to my waist (2 days after getting married) to a 2nd lumbar fusion at St Mary's in 1994(1st fusion in 1977). I had a fall in the hospital and spent the next 2 years trying to convince them something was wrong, finally X-rays taken in 1996 established broken hardware so I was told I needed a fusion re-do and hardware removal. That same year I had achieved management status in employment and one of the perks was BUPA medical cover. I spoke to my surgeon & learned he operated on a private basis in addition to his NHS commitments. We were fortunate to schedule the surgery for 6 weeks later at Princess Grace hospital in Marylebone. The NHS schedule had me down for 1997. We lived and worked in Marble Arch so it was easy for my husband to continue to run the pub and visit me, to this day I laugh at the astonished reaction when a friend (and since passed on celebrity) greeted me in my room the following day with a bottle of champagne which the nurses then allowed me to drink. 3 champagne glasses were quickly bought in along with pens and paper for autographs.

The 5 year NHS merry go round could have been so much better if they had listened to me in the first instance and taken X-rays but sadly they worked hard on insisting it was all in my mind. Never mind, it's all history now. My BUPA management medical cover got a thorough workout and cost them thousands and thousands of pounds from 1996 through to 2004 when after the car accident I regretfully made the decision to come home.

My husband still talks of if we lived in Wales I would get it all for free. But I do recall those 5 NHS years well and was reminded only last year when we visited Wales and my husband had an accident resulting in a head injury requiring an ambulance and hospitalisation. The had him in the CDU and he just wanted to go home to his dads house. He had suffered a severe blow to his temple and to this day still no memory of how it occurred. I recall Sunday morning wandering the many halls and wards just looking for staff to ask questions yet all the nurses stations were just abandoned. The staffing shortages were so very evident and those working looked thoroughly harassed. I still believe it was the shortage of staff that prompted them to release him. I know if we were home here he would have been kept in for at least 24 hours observation.

I'm like you Wingy, I have had 4 fusions and 2 bone grafts, I don't call them failures, they have seen me live a full and active life and I'm so very grateful to them. The bone grafts hurt like hell don't they? Well mine do, the one from the left hip hurt for years and years.

I also dislike the failed back surgery syndrome terminology, I feel each of my fusions have been a success and I think people need to have a better understanding of what a spinal fusion can and probably will result in. Pain and ongoing pain, but nowhere near the pain you were initially in before the fusion. A bone break will heal but the pain of where it was can weep for years later and depending on how active you are often dictates how much pain you will feel in later life. I say active because being active can often take your mind off the pain and it's only when you rest it becomes more troublesome. Yes the pain restricts my activities considerably but to give an example, I will decide to clean the house and once going I will do all the dusting, vacuuming, scrub bathrooms and toilets and feel joy at seeing the effort made has resulted in a thoroughly clean and gleaming home. Then I will sit down because the pain that's been singing really starts to howl and I regret the 2 to 3 hours flurry of activity. So much so that it may take me another 3 or sometimes to my horror 4 weeks before I can get the gumption to do it all over again. We should sell the house and move to something smaller, but I don't have the energy to get all the small and some not so small things that need fixing, painting, wall finishings and gardening done to achieve the full price we need in order to move somewhere smaller and make the effort of selling and moving worthwhile. I hope that makes sense. Meanwhile, my beloved husband is falling apart and I have real fears for his sanity.

I also know after this next fusion I will have to return to the workforce. My husband is really struggling to hold it together and my superannuation payments minor as they have been for these last 20 months have been enough to pay the bills. Come September it will be the last payment and we cannot financially hold on here on just his wage. My medical and pharmacy bills are horrendous and that's in addition to the money we fork out annually for private health insurance. Ironically here in Aus if you don't have private health cover they will slug you up to $900 in your year end taxes & that is in addition to the % already forked out in your regular pay packet.

All in all it's a worry, I just want this L3 fusion done so I can be on the road to recovery and ready to go back to work come October. And now a dark unbidden part of me rises and I cry for me too. My mind is not yet broken, my soul is in a constant shiver and my body, well, it's just not being or doing what I wish it to do. My darkest fears are exposed nightly in my dreams. Every night I dream of being at work, or going for interviews, or simply doing work, and every night in each of those dreams I fight terrible feelings of anxiety as I experience the inability to do some part of the job. People I used to work with years ago feature regularly and while it's nice to see some of them I so wish each dream could end pleasantly.

I'm so sorry, but I'm sure many can relate, I so want and pray for the time I may return to work and my dreams expose my deepest fear. I will return to work and find I cannot do it. In my line of work a 2 year absence is a large hurdle to overcome, my last job saw me working my last 12 months with an undiagnosed thoracic compression fracture T5. I spent most of that year in severe pain and underwent 3 rhyzotomies to my lumbar & cervical regions as I had been doing since 2008, my requests they look at my middle upper back fell on deaf ears, far easier to treat the already acknowledged problem area. So with 2 years out of work and 1 year of what will undoubtedly be a poor reference I am in a quandary as to what to do.

I put forward the suggestion of returning to bar work like I did some 20 odd years ago, I used to work and run the pub so my husband could have 2 days off. My energetic NHS days so filled with pain but I was so much younger and with being active I just had to push the pain thought aside, if I didn't do my own job (desk job in a hotel around the corner) as well as run the pub in the evenings so he could have time off I felt guilty. Anyway I wondered aloud if I could do that again and he just laughed at me and said I'm too old & miserable to be behind a bar. Nothing like a good slap in the face eh to make you feel good about yourself!! Oh well I will just have to start looking and thinking about things I could maybe do. And that of course is on top of me even getting a job, unemployment is beginning to rise, I'm on the other side of 50 and, well you get the picture. Much to think about....

Hope you are doing well if you have read this far. Hugs to you all

Pam,

I could feel the stress you are going thru just thinking of trying to get back into the workforce with all the pain that is a major part in your life. The added stress of your husband's issues as well. I just pray this stress will be lifted. Believe miracles can happen.


Gerry

Saw my PM and I'm no closer to an outcome. My PM didn't remember who I was and could offer nothing other than to refer me back to the neurosurgeon.

He did in discussion say he has a colleague who is very adept at putting the percutaneous leads in and I wondered aloud if it was worthwhile him trying to put the second lead in seeing as I only have the one. PM asked how come I only have 1 lead and I had to tell him I'm the patient he had where he spent 3 hours trying to thread it in. "Oh yes, sorry bout that" he then went on to say yes his colleague could probably do that.

Anyway I left there and I confess I would much rather a 2nd lead attempt than another fusion. I have to make an appointment to see the NS to find out what he thinks should be done, that will take maybe 2 to 3 months. So if he agrees and refers me to the new PM I can see that taking me up to the end of the year with more procedures needed in the new year.

Thanks for the update. I remembered you saying this week was supposed to be decision week, but it didn't look like it turned out that way. You would think they would look at your records before a visit, at least to familiarise themselves with the case. I can understand your thoughts on the fusion option. Can your GP give you a referral to a new PM? Might be quicker.

Phil

Just what I was thinking late last night as I struggled to find a position I could rest in for longer than 10 minutes so I could fall off to sleep. Fortunately he told me the name of the other PM. Making an appt with GP on Monday to do just that!

Didn't see my usual GP, she us on A/L saw another nice bloke and got a referral to the new PM. Along with it accompanying correspondence from my NS and also PM which I have not seen before. NS letter states patient requires further fusion but as it is such a big undertaking considered thought must be given. The PM letter says morphology inconsistent, L2 on X-ray shows significant degeneration and should be the apparent cause of severe discomfort but when injected shows little improvement, L3 on the other hand on X-ray appears relatively healthy yet when injected gives considered relief. So confusing and I'm just flummoxed.

Medication wise, I am taking back the reins; I am again on just 20mg oxy slow release a day, I struggle with the pain but stomach wise and brain wise I feel more in control. I had titrated down on the serequel from 25mg nightly to 7.5mg and took the plunge and ditched the serequel for good 3 weeks ago and have taken only 1x5mg Valium in the past 2 weeks. Remained on 50 mg pristiq instead of increasing to 100 as directed by GP and will begin to titrate down on it as well at the end of this month. I know my source of depression is my back pain and I have become quite adept at reading medical practitioners body language as they read I take serequel, Valium or Xanax along with anti depressants. These meds were prescribed to me to deal with my severe anxiety following the car accident and subsequent 6 year long court case. Doctors read I'm on those meds and the "it's in your mind" statement inevitably follows. My back pain has nothing to do with my mind, my spine is crumbling but doctors don't read that far I've learned, they look first at what medication you are on and begin to draw conclusions from that. I want to see this new PM with being on just pain relief.

The pain from my lower back is felt across and through both hips and is now down to the bottom right side of my coccyx, it feels as though it's splitting in half (like doing breastroke frog kicks) when I walk. I had that feeling before the last fusion and haven't felt it for 12 months or more. I have a vague idea that's to do with the sacrum? I had S1 fused so I wonder if the S1 fusion is not taking. My upper back is a constant ache with I think maybe a new compression fracture forming.

Anyway it's been a tough few weeks with pain and withdrawal symptoms from oxy and serequel. Gosh it is horrid what the body goes through when you stop these meds. I felt as though I couldn't breathe, my body weighed a ton and I truly thought I was having a nervous breakdown. My mum thought I was having a stroke or heart attack. I am on the other side of it now and beginning to feel stronger.

You be careful
Taking care of yourself
Be careful
Love
Me