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I got so angry, but cried instead!!! Any comments?

SueDSSueD Posts: 545
edited 06/11/2012 - 8:44 AM in Lower Back Pain
I posted a short time ago about going to see a new consultant on Wednesday 19 May as he could fit my surgery in sooner (than the first consultant). I just thought I'd write an up-date.....

I went with an open mind. I was keen to get the surgery over and done with (and they had confirmed my surgery date as 22 June) and that I would benefit from the school's 6 weeks Summer holiday to recuperate etc. etc.

Well, I didn't see the consultant, I saw one of his 'registrars' I think. What he proposed sounded fine, at first. He said that two different teams don't always do the same procedures (which I understood). He also said that my discs look fine! What!??? Not only could I tell him about the pain I was experiencing DAILY in my lower back, but how I get pain down my right leg, starting in my cheek, going in front of my thigh and then behind my knee and into my calf (and sometimes at night into my foot). I told him about my medication in order to try and sleep (which doesn't work most of the time), my morphine patches & liquid etc. and how I am just living to work - and that's it - no quality of life, no making decisions of MY choice, in case I'm left unable to work (like a couple of weeks ago for 4 days). Also, that the discogram showed that both L5-S1 & L4-L5 were confirmed as being pain generators. I gave him my whole history for the last 5 years! Still, I thought to myself "calm down" and find out what he proposes first.

He showed me my MRI and started to digitally draw lines on the screen to show me where the screws & rods would go. He would fuse L5-S1 and take the disc out. OK, that sorts that one out thought I. Then he said he would leave disc L4-L5 in situ, but just put in screws above and connect them with rods to the fused level below. By this stage, I was having a few doubts about his recommendations, and this is why...

He then said that having a 2-level fusion could probably put more stress on the L3-L4 disc above, which may probably cause pain later on. At this point, I said I totally understood this, but with all due respect, the L5-S1 disc was the only one which caused pain 5 years ago, and now, without any surgery, the L4-L5 disc is also causing me pain - so his theory was not 100 per cent conclusive, in my opinion. It has shown that my second disc is giving me problems which could be a natural degenerative change or age related. So there was no definitive proof that having a 2-level fusion would consequently cause the others to be problematic - it could happen anyway, without surgery.

He then, abruptly told me that I did NOT UNDERSTAND - and proceeded to clear his digital drawings, and start drawing them all over again! How rude! I do blimming understand. I've done loads of research over the last 6 months and know what possible options could have been suggested. I am also very well aware that there are no guarantees with ANY surgery and know exactly what I'd be letting myself in for if I had a 2-level fusion, I'm not stupid! He said this surgery wouldn't give me much flexibility in my spine - and I replied that I don't have much anyway because I'm ALWAYS worried about moving the wrong way in case it hurts my back and leaves me unable to work. I cannot afford to be off work at any time, so perhaps I'm overly protective of my back. Mind you, through all this, I had to laugh to myself because I explained that I'd been made redundant from my last job, which they said was due to lack of work. But I had my doubts because I was the only one affected and nobody has been made redundant since (last September). I felt it was more because of a student who had complained that my 'signing' had been too wooden and not natural. He looked puzzled and said [while holding a pen and a piece of paper] I can't see what problem that would cause, you can still sign your name can't you? Ha! Even the nurse knew what I was talking about because I had explained my job beforehand - I use British Sign Language and, e.g. to sign 'row' I would have to actually do the action of rowing in a boat (which really hurt my back when I leaned forward).

He said he would not offer me a 2-level fusion and that if I had his surgery, and if after 3-4-5 years my L4-L5 proved to be getting worse, then I could have another operation at that time to have it fused. Well, I lost it. But instead of getting angry, I'm so annoyed with myself for getting upset!

Not only did I feel he was undermining the recommendation of the first surgeon, who had told me on our first meeting that "He could fix me", but he was prepared for me to undergo one round of surgery with the good possibility of having to endure another one some years later (on a disc that is causing me pain NOW). Through my tears, I managed to say that at my age (53) I feel better able physically and mentally to go through invasive surgery now, with a better chance of getting over it successfully than to have to do it again in say, 5 years time, when I might not be so healthy (apart from my back) then.

He said if I didn't having surgery with him, then it would not be as quick as 22 June. Ha! Does my face look bothered? I said I was more than prepared to wait - I wanted surgery with the consultant who said he could "FIX ME", not with someone who said I may need another procedure later on.

He asked me if I wanted to be referred back to the original consultant - err.... OF COURSE!!!!

So there you have it. Sorry to go on so, but it's so good to get it off my chest. I wonder if anyone else has had conflicting recommendations for surgery before? How did you choose which one to go for? Did you make the right decision in the end do you think? I know I have - I have said before that I had 100 per cent faith in my first consultant and now that has been reinforced after seeing this new man. Any misgivings I had about the 2-level fusion have now been eradicated. Bring it on! I want my life back!!!!

In an ideal world, I would have liked to have been offered surgery before our school Summer holiday started so I could use the 6 weeks to recuperate, but it doesn't matter now. I'll wait 6 months if I have to - it'll be worth it in the end.

I'd be interested to hear your views.

Phew! I feel so much better now, thanks!!!
2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!


  • Hi Sue,

    I'm sorry you went through that. It's hard not to get flustered in appointments sometimes. I think we've all had tearful times.

    It sounds like you are making logical decisions- much better to put the surgery off and be comfortable with the surgeon than to rush it and be unsure of the doctor. I think the fact that you're able to reason through that is good because when facing surgery I think we all have the tendency to want it ASAP because of the promises of pain relief.

    As far as deciding what the best route is for surgery it comes down to trusting your doctor (which clearly it sounds like the guy you consulted was not the right one), getting multiple opinions, and doing as much research as possible before hand. We're not doctors, but with the internet we have access to a lot of information, and I think it is incredibly important for all of us to have a thorough understanding of their condition and the surgical options. It sounds like you've done your homework on this, so that should be helpful in the decision making process.

    I was warned before my SI fusion, which was a controversial procedure, that I was putting the surrounding structures at risk for accelerated degeneration, but my attitude was that it didn't matter what "might" happen down the road because I *did* have an unstable SI joint so failing to fix it out of fear of what might happen was leaving me just as disabled as the degenerative changes that may or may not come. I think a good question for your doctor is whether you could expect realistic pain relief without fusing both levels?

    As I mentioned, my surgery was controversial and I had doctors telling me to do it and others telling me not to. It just came down to the fact that I was the one that had to either 1) Live in my current state or 2) Live with the consequences of surgery. For me, I was more afraid of not having the surgery and staying as I was than to have the surgery. It has not been perfect, and my surgical results were not as great as I had hoped, but I am some better and I do not regret my decision. It was important to me to feel like I had done everything I could to get my life back, and the fusion did offer that promise and I am some better from having it.

    One thing about your post that send up a red flag with me is the idea of fixing. I'm not super familiar with your story and how long this has been going on, but I do think that with spine surgeries it is majorly important to go over your expectations with your surgeon to make sure you are being realistic about the expected outcome of the surgery. I think expecting a 100% return to normal or pain free existence is often times unrealistic, so I would really encourage you to talk to your doctor about what he thinks your pain levels and functional levels will be post-op. My own experience was that I went into my surgery knowing it was most likely not going to leave me pain free, and I think knowing that going in makes a huge difference. So, I would strongly encourage you to cover expectations at your next consult.

    Good luck and let us know how the next one goes!

  • Hi Sue,

    Sounds like the appointment opened more questions and frustration than it helped. That's always upsetting for sure. It's also upsetting that they told you they could operate sooner than the other doctor but in reality couldn't.

    Are you able to get another opinion while you wait for the surgery date from the doctor you originally planned to go with?

    I am not sure where you are but if you are in the US, it would be worth seeing someone else. I think doctors aren't trying to undermine other doctors on purpose but rather they have various experience and approaches to the back.

    I know in my own situation, I was the other way. My original surgeon wanted to do a revision microdiscectomy (2nd surgery on same level but not fusion) and 2 other doctors said "Absolutely that would not work, I need a fusion". My reaction was "Wow, my current surgeon must be an idiot". Until I started asking the "fusion" doctors what other options were. Then I went back to my original surgeon and point blank asked him "Why would these other doctors say I need a fusion?"

    I learned that it's just a difference of opinions. He explained why he felt his approach was the right course and other explained theirs.

    I met 7 doctors before my 2nd surgery (I'm crazy).
    I got 50% saying one thing and 50% saying the other.

    My current surgeon said
    - you can do nothing until it gets worse (or better)
    - you can do the revision but you aren't urgent other than the time of compression on the nerve is increasing
    - you can fuse

    Then we talked about the pros/cons of each.
    I picked this doctor. Why? Because he wasn't telling me the answer, he was offering all the information so we could "jointly" make the decision. He knew I was switching doctors so we spent time talking about the future too and what that meant and how he would approach my future decisions based on the above choices.

    It is so frustrating because there is no clear answer. And, while you are learning, it stinks because you are in pain and trying to time the surgery so that you don't have to be out of work at the wrong time. It stinks and trust me...I've been so angry I've cried too. Whether it's because a doctor was "talking down to me" or "telling me something I didn't expect to hear" or because setting a surgery date was not as quick as I had hoped for.

    I am not that familiar with your background but it does seem like you are considering all the right factors - age, history, future. You are right about "possible domino" effect of the discs above/below the point of fusion. I know that depends on how your disc is now.
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  • Thanks "Lala320" and DNice for your comments - it's always good to get the views of someone else - that's why I like this forum so much.

    I've had back/leg pain for 5 years (well, if I'm honest, it all goes back to when I had my second daughter 22 years ago actually). I have had 2 discectomies on L5-S1, five years ago and within one month of each other.

    This second opinion I got was from a surgeon in the same team as the first (if you see what I mean). The first surgeon and his 'Fellow' surgeon have seen me since late last year. The surgery offered (2-level fusion) addressed all 3 problems that I currently have. His team took the trouble to explain everything, all the dangers of surgery and what could go wrong (all the way to 'death'). It was the conviction he had in his own abilities, and the fact that he's well respected for it. People travel from abroad to see him here in the UK. His reputation is good (as I've done my research on both surgeons!) and he runs a Spinal Support Group, which I've attended twice so far. About 50-60 people attend. About 10 people give their experience of back/neck surgery and the rest are people who have ongoing problems and nobody to speak to about them. I was very reassured when I first went and came away feeling positive about my future for the first time in years.

    He did say he could 'Fix me' - but this statement was honestly put in context with all the pro's and con's of surgery.

    I think it basically boils down to quality of life. When I said that I "only live to work", that is no exaggeration. Another huge factor in all this is my eldest daughter (27). She's been promoted at work and is moving to Pittsburg, Pensylvania (wherever that is???) in 2 months time. My aim is to eventually be able to fly long-haul in less pain (hopefully) than I have now.

    I'm realistic enough to know that I won't be a marathon runner (I never was!) - but I have tried so many things in an effort to help myself (a few examples: Swimming, Cycling, buying a rowing machine, Wii Fit, 4 pairs of MBT shoes, joining a gym, walking, losing 5 and a half stones in weight).

    I've had conservative treatment for five years now, but my back is getting worse. I was told years ago that it would get worse with age (something to do with hormonal changes whilst going through the menopause or something - it can affect the bones) and this has proved to be the case.

    I've now seen 8 different consultants (4 orthopaedic/spinal surgeons and 4 consultant pain specialists) and obviously, I understand they all have different approaches.

    I was going to go along with the last consultant's recommendation, until he mentioned that if my L4-L5 disc caused pain, then I could go back for a fusion in 3-4-5 years time. The big factor here is that the disc is already causing pain and, if I'm offered a fusion of both painful discs NOW - why would I want to go back (when I'm that much older) and go through it all again? Would you?

    One last thing that I think sums it all up is the copy letter I have received from my appointment on Wednesday - it states at the end "Despite my attempts at explaining to her she gave me the impression that she has immense trust in Mr K's decision, hence would like to go back to him". Obviously he doesn't state exactly why, as it would perhaps put him in a bad light, but he has picked up on my feelings about Mr K (without me even telling him).

    It's all good - I'm thinking positively now (I have Pittsburg in sight, YAY!!!). I'm more than prepared to wait for however long it takes as I know Mr K's waiting list is quite lengthy, but bring it on!!!

    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • But SueD, you also need to look at the success rate of multi level vs. single level fusions and the risks of each one.

    Did the first or second doctor explain the risks of a multi-level over a single level fusion? It's my understanding that there are additional risks. Considering that single level fusions only have, what, 80%-90% success rates, a multi-level likely has what, about 75%? That's hardly a guarantee of fixing you, if there's a 25% chance of going through major surgery with little improvement. These are the kinds of numbers you should ask a doctor for.

    You should trust a doctor who is honest with you, not one who gives you empty promises :(

  • SueD...thanks for giving more history. My apologies for not having followed your background.

    Sounds like the first doctor you are most comfortable with. Oddly, in the US, my experience with a group practice for spine stuff is really in case there's an emergency or they share a PA. The 1st surgeon I wanted was going out on vacation so I used his partner for the surgery. Hindsight, I would have waited for the surgeon I wanted to come back from vacation b/c I didn't care for his partner and didn't realize that as a result, I really couldn't switch back. I'm surprised you even got a different opinion from the same group b/c usually they talk to eachother.

    Anyhow, it sounds like you are happy with the original surgeon and you trust him and like his interpersonal skills as well which is very important.

    p.s. Pittsburgh, PA is a pretty "well known" city in Pennsylvania. PA is considered, I guess to be an East Coast state so you may even be able to do direct to Pittsburgh (though Pittsburgh is on the west side of the state....too bad she wasn't moving to Philiadelphia b/c that's on the east side of the state).
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  • The first consultant gave me all the info (warts and all). He did not make any promises, but gave me all the odds. He said he and his team have had 80% success rate and he's been a spinal surgeon for 14 years now, so I'm sure he has extensive practice/skill. The second surgeon did not talk about percentages at all.

    I believe that, because of the unit's reputation, they perform PLIF's more than any other type of fusions, so I'm sure he's had lots of practice and acquired more technical skills as he and his team have progressed. I have read newspaper articles (where I first heard about Mr K), medical journal reports, Internet documentation etc. etc. and have spoken to some patients who have had 1 and 2 level PLIFS as well as other procedures.

    Over the years I have now seen 7 consultants about my back, had two previous surgeries, loads of conservative treatment/medication and this time around, I've done more research than ever before because I want to be absolutely sure about it this time. And after my recent consultation with the Associate Specialist (I did not even see the consultant), this has reinforced my belief that going with the first consultant, Mr K, is the right thing to do in my case.

    When I first had a discectomy many years ago, I was told then that it would be 80% successful - unfortunately I was one of the 5% where it didn't work and had to have it done again one month later - so I have learnt to look at all the odds. Nobody believes they will be in the 'failed' category, otherwise this kind of surgery would never get done - you only have hope, and trust in your surgeon's ability and your own determination/positive thinking to help you through the recovery process (which I, and my family, know will be very difficult at first).

    Ultimately we totally put ourselves in their hands - the alternative is to carry on, probably get worse as we get older (which unfortunately has been the case with me) and have no quality of life to look forward to. I've got tons of living to do yet and, when I eventually retire from work, perhaps in 12 years (perish the thought!), I would like to make choices for myself and not to be restricted because of back/leg pain etc. etc.

    It's terrifying enough thinking about the surgery and what could go wrong, but there has to be 100 per cent faith in the people that perform it - and I totally understand there are no guarantees.

    I'm sorry for waffling on - please don't think I'm going into this lightly. I have looked at all the choices available on the NHS here in the UK and this option is the 'gold standard' of surgeries and, if I have the choice, I would prefer to have the best (which is considered so by the professionals).

    If anyone has any further comments, I'd welcome them. Thanks alot
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • The reason I mention risk is because I recently read a news release about a research paper comparing multi-level fusions to single level fusions. The paper indicated that the risks were much higher, the success rates lower, and that single level fusions in many cases worked just as well. It might be something to ask your doctor about, and it occurs to me that it could be why a doctor might offer to do a single level only rather than the multi level (and why some people might choose that option).

  • You aren't waffling, you are just like many of the rest of us. It's a tough decision SueD.

    I am a bit similar in that I had a MicroD and I was a failure (I often wonder if the 5% rate is accurate or not anymore). I suspected I was a failure b/c I never got better and in fact found I was worse. I kept pressing my original doctor and he kept saying I was just progressing slowly. Well, at 3 months I talked him into sending me for another MRI and I had rehernited. I had a revision surgery back in February (about 6 months after the 1st one..I waited b/c I wanted to find a different surgeon that would listen to my concerns). When I was deciding on the surgery for the revision...I felt as if I was waffling or grasping at straws. I had 3 choices too - do nothing, revision MicroD, or fuse.

    It's not an easy decision. Keep us posted on what you decide.
  • You'll have to excuse me, DNice, but I'm not sure what decision you made in the end? Was it nothing, revision MicroD or fusion? You mention not being happy with the first surgeon so I presume you had an operation, but what procedure did you have? Also, were you given a choice and how did you make your decision in the end?

    We are very fortunate in the UK to have the national health service and, when it works, it's brilliant! We now have the choice of going to any consultant in any district - but alot depends on the support of our local GP's, as they are the only people who can make the referrals. If I was relying on private medical insurance things could be very different of course.

    It is scary stuff - I don't think anyone can be 100 per cent sure of undergoing spinal surgery, it must be more a quality of life decision and hopefully to come out of it with less pain/symptoms than you started with. I don't relish the recovery time because basically I'm a chicken - but I am a positive thinking individual, with a good family network and will be pro-active in following doctors orders to the letter to give myself a fighting chance of achieving a successful outcome.

    It's not as if my surgery will happen tomorrow. From what I'm told, I'll go back on the first consultant's waiting list (where I was before this last appointment) so I've got at least two months to continue investigating it all. Thanks 'happyHBmom' for your comments, I really appreciate all the posts on this forum as they are all informative and written by people who have had different surgery.

    I know the risks increase the more levels that are fused, but ultimately, providing all goes well and I don't do anything stupid, the only downside I can see is the lack of movement I'll have in the fused area and possibly more risk of the adjacent discs being affected later on (this has indeed happened anyway without me having a fusion, so it may be the natural progression of DDD etc. that will happen if I have surgery or not - I'll have to take my chances on that one). At least I won't get pain from the discs anymore and my spine should be more stable after it's fused.

    I do have to remember though, that when I read posts on this forum, some are written by people who have not had such successful surgery and, for those who have, they are out living their lives and perhaps don't frequent the forum so much any more. That's why I am inspired when I meet people who have come through surgery and are very fortunate to be given their lives back. Am I wrong to want the same?

    I find everyone's comments very interesting and sincerely thank you for them. It's good to get different perspectives on a situation/dilemma that can sometimes be difficult to come to terms with.

    Thanks guys!
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • No, the other downside is the 20% chance that you will have an unsuccessful surgery. That means you go through major surgery and do not get better, or (and go to the chronic pain boards to talk to many people who have experienced this) get worse.

    Why not make an appointment with the first doctor and go over what the second one said? Maybe ask about the increased risks of the mult-level fusions, and listen to his reasoning for his difference of opinion from his colleague? Mention that his colleague thought a single level would work, and ask why he thinks a multi-level is required?

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