Pavlovthecat finally has surgery booked! Woohoo!

[PavlovtheCat]

No don't think for a moment that I want surgery. I don't. But more than not wanting to have surgery is me not wanting to be in horrendous pain any more.

Discectomy for sure. Possibly fusion as one of my vertebrae is out of alignment, not the full details, as DD is bugging me for dinner so will come back in a bit with details.

But fucking yey! Only had to wait 18 fucking months to be heard.

[denialandpanic]

finally, that's good news and hopefully a big step forward! week for for persisting at that horrid gp wonder what he will say now

[OhYouBadBadKitten]

That is really good news :)

[Madsometimes]

Bloody hell, finally someone has listened to you.

May your surgery be a total success, so you can get back in the kayak.

In the mean time, have some while you wait.

[PavlovtheCat]

denial Funnily, since I burst into tears on numerous occasions on him and insisted he refer me (literally stomping, crying, demanding how he can let me leave the surgery in that physical state and do nothing) he has changed his tune, and now on my side! He was encouraging me last week to insist that I had surgery if the neurosurgeon felt he would waiver. He said I must have it as he has seen my condition deteriorate and it is clear there is no other option now. A complete sea change! He has seen the latest MRI you see, and the letters from physio (which I read some of while waiting for an x-ray today, as they gave me my entire hospital notes - 'mrs pavlovthecat is now clearly in a bad way, and her physical examination correlates with the results of the MRI. I have spoken with Mr xxx who agrees she needs to be seen in his clinic. Mrs Pavlovthecat comes across as a proactive woman who has has clearly had enough...' and things such as 'mrspavlovthecat has shown willingness to try different therapies and has continued to try working throughout this last episode, for which I have given high praise' along those lines in my notes! that last bit from my own GP!). How about that eh?!

[PavlovtheCat]

so, now I am able to give details, the kids are almost asleep and I am done with work for 30 mins, I can update.

Neurosurgeon has said that the vertebrae of L5? (the top one of the L5/S1 section is out of aligment, it's sort of hanging forward and this is probably why the disc prolapsed. He doesn't know why this happened - could be injury, could just be the way my spine developed/a joint stopped working so well. The disc is now bulging into the nerve space, and there is a tear there (which may well have been the shower curtain hitting my back, but the disc would probably have already been bulging at that point).

He said he would not normally enter into the idea of spinal fusion and right at this moment he is not doing so. He does not believe the success of fusion generally is good enough to put someone my age through that trauma, and that back pain itself can be caused by many many things and so fusing is too random. However, he said that this vertebrae that is not in the right place, along with the fact that the entire rest of my spine is in perfect condition (he said that if my lower half were not visible on the MRi he would not be able to age my spine as it is as well as it would have been when it first finished growing) that indicates that there is a large enough coincidence between me having severe localised back pain, my back 'going' regularly and the potential instability of the vertebrae due to the misalignment. For that reason he is considering fusion. So I have had some x-rays on my spine with me moving around in different positions (ouch!) to see if the segment is moving at all. If it is, he will review his decision and consider/discuss with my fusing the vertebrae, if no movement, he will wait and try the discectomy first. He said there is around 15% chance that will help the back pain, but it's not huge - it will only fix the leg pain and even than is 80-90% chance of an 80-90 improvement. That's enough for me to live a better life so I am ok with that. If the back keeps going after the op and recovery (a good amount of time) he will fuse the spine. (he will put two rods downwards and then one across between the hips into a t-shape )

Anyway, recovery for this is like a month so not huge. And if all goes well, I could be bodyboarding within 8-10 weeks! YEY!!! Maybe even this summer! (maybe as I got to wait 2-4 months)

[ovenchips]

That's great news! I am mainly a lurker and have read some of your posts about what a very difficult time you've been having.

Goodbye pain and hello bodyboarding!

[Treelander]

Good for you! Another lurker here - I usually notice the posts about bad backs having had one for years. I had a fusion last year and for me, it was definitely the right decision.

The emotional stress of coping with a bad back is huuuuuge so sounds like it's onwards and upwards for you .

[fengirl1]

Pavlov - about time! Spondylolytic spondylolethiosis by any chance? Sorry if spelling is wrong, it's a long time since I've written it - or tried to say it!

[Ubermumsy]

Yay!! Not got time to respond more fully just now, but....yay!!

[Ubermumsy]

(PS fishandjam as was)

[PavlovtheCat]

thank you everyone. Sounds daft, but it's good to feel listened to, and i know there IS something wrong. I mean, of course I always knew it, I cant possibly be in so much pain and there not be, but, no-one seemed to do much, give me any hope, suggest anything that actually worked. It was like 'yeah, shit happens, oh dear, have some drugs' I actually felt like the medical teams thought I should buck up and get on with it, it's just one of those things, you know, like a wart or grey hair 'it's just what happens when you grow older' (heard that so many times).

But now, there is a proper real problem that is causing all this and no it might not be fixable completely in on go, and possibly I will have some pain/discomfort forever, but, it's being dealt with by someone who has actually said 'yes, we can do something'.

And, also sound daft, but I now feel it's ok to take some fucking strong pain meds which I have been trying to avoid. Why is that? Almost like it's ok to give in a bit now, for a day or to, and just be in pain and take the meds.

[PavlovtheCat]

fen he didn't give it a name - I'm going to google that though, see if it matches what he said I had! It is literally one vertebrae that is not in the right place. The rest of my spine is as it should be.

[PavlovtheCat]

fen yes that is pretty much exactly it, including symptoms (the slipping of the spine included!) But the low grade, not the high grade.

how mad is that! i wonder why he didn't give it the name it has? I guess 1) it's a huge mouthful and 2) it's probably irrelevant. But I love knowing all that shit!

[BreastmilkCrucifiesAFabLatte]

I'm so pleased for you. You've been in so much pain for so long now. Did you get any idea of waiting lists etc?

[PavlovtheCat]

bm thankyou! 2-4 months, which is what I expected, but he did say its not a long procedure, an hour, two at most, so he may well be able to fit me in around another surgery, unlike full fusion which takes hours (waiting list is maxed out for that - wow there are a lot of people with back problems in this neck of the woods). I'm ok with that, there is light at the end of this tunnel now, I've waited this long, I can do a few more months now I have some hope.

[gallifrey]

wow that is fantastic news xx

[gallifrey]

quite jealous now, I want a pain free back too!!

[Ohwooisme]

Oh great news - am sooo pleased to hear its finally ) (posted under previous name on your old threads !)

I had a discectomy earlier this year - happy to give you the low down if you want any info:)

[Ohwooisme]

Finally going to get sorted that should say!!

[DowntonTrout]

Hi Pavlov, we have spoken on here before.

I too have a date for my discectomy, in about three weeks. I am still debating whether to go for it or put it off (again). I have 2 prolapsed discs at L5/S1 and L4/5, although the L4 one is broad based and they say they will not touch that for the time being. Although I was approved for surgery in December, but was told i could safely wait until the summer with ongoing physio, I moved, and had to start the whole process of getting referred again, which has been fraught with problems but I finally got to see the neuro here 2 weeks ago.

I was in with his registrar, who was not being very positive, when the consultant, Mr M, popped his head around the door, glanced at the scan on the screen from across the room and said "you need surgery! I can fit you in in May." he then took over the consultation and I was so relieved that I had FINALLY got back to the position I was in 5 months ago, before I moved. I am still angry that the different health authorities don't share information and that this has gone on all this time, with me in so much pain, and having to fight every step of the way.

Even so, I am scared, I never wanted surgery, I have tried everything else and the physio was helping but of course that stopped when I moved here and what I was fighting for was a new physio referral, so I could keep the surgery at bay as long as possible. However, with no information being shared, so no scan to look at, no physio would touch me. So I needed a new scan and a new consultant opinion. That is what has taken the time. Those months with no physio mean my condition has worsened, the sensation loss and reflex loss may now be long term or permanent, and physio now will not help. I have to move again in July, hence not knowing whether to have the surgery at the end of the month alone in London with my DD to care for, or wait til I move back and have family support, but no guarantee that I won't have to go through the whole process a third time. I'm tired and fed up of the pain but circumstances have made it almost impossible to make a decision. Sorry for rambling on, it really is very complicated and just trying to explain even confuses me!

Glad you are on the right path now, hope you get sorted and the result you want.

[DowntonTrout]

ohwooisme realistically what is the recovery period like? I mean, how soon can you comfortably walk about- do normal day to day things? I am wondering how long I would need someone else here with me afterwards to get to the point where I could manage with DD alone?

[Madsometimes]

Downtown, I know nothing about this op, or backs or anything really! But I do know about waiting. If you feel that your condition has deteriorated because of moving hospitals, then I really do feel that you should go for the operation. Given that the consultant glanced at your scan and immediately pencilled you in for surgery, then I think that speaks for itself.

You are almost certainly not going to be able to care for your dd, but you mentioned family. Can someone come and stay with you for a few weeks, or can you and dd stay with someone? You have time to plan this, and don't be afraid to call in favours. When you are better you can help others out.

I understand that you are scared though. But don't let fear prevent you from getting the treatment you need. Realistically, if you cancel you will go right back to the end of the waiting list for both physio and surgery. I'm sure that if family were willing to help if you were being treated locally, they will still help. You do need to explain to them the impact that cancelling this op will have on your long term health.

[DowntonTrout]

Thanks mad. Believe me when I say I know all that. It's just been a cock up really, from start to finish and it is a very complicated situation.i have been at the point where I was admitted to the surgical ward only to be told the neuro consultant was on leave for a month and that I would have to be transferred to another hospital trust, who promptly lost my notes and referral letter and had no knowledge of me. I had to be re-referred by my GP and even then it was only by me complaining to PALS that I got this appointment.

That was from an urgent (two week) referral back in January. It has been like swimming through thick mud. I just need to know if I will be ok after a week to be moving about, otherwise, unless it becomes an emergency, I have an appointment with my previous consultant at home in July and he will arrange it fairly quickly, as he understands the situation. It's been a nightmare though.

[PavlovtheCat]

downton my expectation from paperwork/leaflets, discussion with neurosurgeon and being on here and other forums is that I will not be in a position to lift anything heavier than a kettle for about 4 weeks. I can expect to return to 'normal' activities with caution from 4-6 weeks, but not heavy lifting, twisting, bending etc, sitting for 15 mins max, standing for 15 mins max etc. So, I would say that you will definitely need some help for the first few weeks - how old are your children? There is no way I would entertain this op if I was sole carer for my 3 and 6yr old. It's going to be tough enough with my DH and friends to support me, but doable with that help.

I have just done my final session of the Expert Patients Programme and one of the biggest barriers to successful health care provision that came up from pretty much all participants was lack of communication between healthcare professionals. This has been my personal issue too, although it has been failure to share info quickly because each person involved seemed to think they knew how to manage my problem the best so seemed to refuse/take their time to move me onwards.

I am not scared yet. I am oddly excited, as despite preferring no surgery, I would prefer surgery over what I have now. I have been told this won't 'fix' it all completely, but I am not ready to accept long term pain as my fate, I am not ready to do that at all, so if I need surgery to give me a chance of being half of what I used to be, I will do that happily.

[PavlovtheCat]

downton but, also in terms of being on my feet - I have been told I will be walking out of the hospital the day following surgery, and will be moving slowly and increasing that in the coming days/weeks, so not immobile, but leading up to being back at work by 4-6wks (providing no complications arise).