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I'm even more confused after a third opinion......

Amanda S YanisAAmanda S Yanis Posts: 124
edited 06/11/2012 - 8:39 AM in Degenerative Disc Disease
So I went for a third opinion today after the first neuro said I needed a three level fusion but he didn't want to do it, and the second ortho said no way. So the third opinion is to get another type of shot which I of course forgot the name of. So that leads me to question #1............He said that it would be differant from my epidural because he would go in from the side. He also told me I needed to be in pain the day off, so as he does the procedure he will be able to know whithin 5-10 minutes if it helped. I'm pretty sure it was some type of nerve block and he did say it would be bilateral, so that sound familar to anyone?? And if so can you tell me how it went? i'm assuming this means that I won't be geting any anesethia or pain meds during the procedure since they also told me not to take any pain meds for atleast four hours befor the procedure.

Second question is, he told me that my problem is the DDD and that pretty much my discs are drying up, and as they are, my body is fighting it by developing the bone spurs. He also said that it's just a process and when my discs do finally completely collapse the pain should go away, so that is why I should just "ride it out". Does this sound right to anyone?

Third. My husband told me that the reason I dont' qualify for surgery is because my back really isn't that bad. I say it is because it's so bad that the surgery it would take is a major surgery with too many risks with a very low chance of even working! Anyone care to settle that fight ?? LOL

Fourth, I have filed for SSdI and got denied. Is it even worth my time to appeal it now. I'm off work until the first of the year, but my doc refuses to take me off any longer after that.

And Lastly, I'm on a fentayl patch which I will need to wean off of in two weeks. Any suggestions for that because the new doc was no help since my family doctor put me on it. And i really just can't afford another dr. visit right now, since I was just in there last week. Or do you think she would help me over the phone? Or should I ask my pharmaicist??

Whew, sorry i have so many question. I hate that I always clam up and forget the important stuff when I pay some doc over $300/visit!!


  • Hi Amanda,

    I empathise with your situation as I also have multilevel DDD and am facing similar problems re: the question of fusion.

    The nerve block sounds like a spinal nerve root block and yes, they do 'go in from the side'. It's actually partially diagnostic, so they can tell if the pain's coming from a trapped nerve. They inject steroids mixed in with anaesthetic and it could provide months of relief. It doesn't hurt, but is uncomfortable for a few days after the anaesthetic wears off (eight days in my case).

    The answer to the multilevel fusion is that spinal surgeons don't like to perform it, because it's tricky and more often than not, supposedly it doesn't provide relief. My n-s has also expressed reluctance to carry it out. There's an excellent article on this site which helps to explain the pitfalls of this:-


    I have no experience of the others; fentanyl patches didn't touch my pain, so I refused them. However they've worked brilliantly for others on this site.

    I hope you find answers to your other questions.


  • It sounds like what you are describing is a transforaminal nerve block. When the doctor says it is a procedure that goes in from the side, it is not what I think you are imaging. For you, the patient, you will not notice any difference. You will be lying on the stomach. It is the needle that is threaded in at an angle and the tip will be placed as close to the spinal nerve root as possible. It will have a numbing agent mixed with a steroid medication. The procedure should be done using fluoroscopy so the doctor can see exactly where the medicine is being injected.

    Your leg should be numb almost immediately. Instead of going home and resting like you'd do after a steroid injection, you may be asked to carry out normal activities and perhaps even stress the level of activity. If you can still feel your "usual" pain, it is an indication that the problem is NOT with the nerve that was injected. You should be able to do tasks/movements that would normally cause you pain for the first couple hours, IF the nerve that is injected is the PAIN GENERATOR. If when doing the tasks/movements that normally cause you pain, you are still feeling the same pain as usual, it meas that the nerve that was injected is NOT the source of your pain. Often the patient is asked to keep a pain journal during the time the numbing is in effect so you can report back to the doctor how it affected you.

    The numbing agent usually lasts anywhere from about 3 to 7 hours and will gradually wear off. Then you will be left with what feels like a usual steroid injection. Eventually you may or may not get some relief from the steroid beginning to take effect. This can happen fairly soon or take several days, even up to a weak to have some effect.

    I have had these both without sedation and with a "conscious sedation." My current pain management guy wants to know how a patient reacts to the placement of the injection, so he never uses sedation except for the topical numbing stuff. It can be a bit of a thrill but it doesn't last long and you know for sure he got the right spot. @) I've just had three of these and after resting about 15 minutes I was able to walk out and drive myself home. It really isn't too bad.

  • I think you might want to get a third opinion from another spinal specialist. Please remember that you owe it to yourself to try every possible option before going for a multi-level fusion.

    Obviously I am not a trained radiologist, but from what you copied from the MRI report, nothing jumps out that makes me immediately think "three level fusion." Did the surgeon explain why he recommends a multi-level fusion?

    This link will explain what the 2nd doctor was telling you about DDD:

  • Amanda S Yanis said:

    He told me that my problem is the DDD and that pretty much my discs are drying up, and as they are, my body is fighting it by developing the bone spurs. He also said that it's just a process and when my discs do finally completely collapse the pain should go away, so that is why I should just "ride it out". Does this sound right to anyone?
    ABSOLUTELY NOT. I'm a kitchen designer, not a medical professional, but hooey is hooey no matter what your profession. I'm not dependent on common sense for that answer, though. My mom has not had any surgery, but she has really severe (way more than me, and mine is bad) DDD, especially at the lumbar level, to the degree that L3-4, 4-5 and L5-S1 are completely gone. She is in constant pain and on a huge narcotic cocktail. If that was going to happen, then none of us DDD's would have any procedures. In reality, those discs are there for a reason, and if you don't have them then what you do have is trouble. You need the cushion and the space to keep any nerves from being trapped between the vertebrae. I'm shocked that anyone suggested that to you.
    Amanda S Yanis said:

    Third. My husband told me that the reason I dont' qualify for surgery is because my back really isn't that bad. I say it is because it's so bad that the surgery it would take is a major surgery with too many risks with a very low chance of even working! Anyone care to settle that fight ?? LOL
    You may be on the losing side of this for the time being. Any one of the three problems might be repaired endoscopically, I think (kitchen designer, not doctor), but probably not all three together. It sounad as though any of the three are, in and of themselves, serious enough to warrant a fusion or replacement, but not all three at the same time. A triple fusion or replacement is a major undertaking that comes with the risk of the "domino effect" which you are at risk for anyway just based on the DDD. All that said, NO ONE has the right to gauge your pain level but you. Not being a surgical candidate YET doesn't mean that your pain isn't incapacitating ALREADY. As far as I know there is no correlation between pain level and surgery need. Pain is subjective and relative. This, as I've always said, is why men to not have the babies. My own experience is that men do not have the tolerance for pain that women do, so take some weird comfort in the fact that he couldn't handle what you do every day. Hmmmph.
    Amanda S Yanis said:
    Fourth, I have filed for SSdI and got denied. Is it even worth my time to appeal it now. I'm off work until the first of the year, but my doc refuses to take me off any longer after that.
    Much as this goes against my natural grain, my suggestion is that you find an attorney who specializes in this area and try again. And you've seen multiple doctors; talk to a different one who is more sympathetic to your plight.
    Amanda S Yanis said:
    And Lastly, I'm on a fentayl patch which I will need to wean off of in two weeks. Any suggestions for that because the new doc was no help since my family doctor put me on it. And i really just can't afford another dr. visit right now, since I was just in there last week. Or do you think she would help me over the phone? Or should I ask my pharmaicist??
    The new doctor should still have known how to tell you how to get off the fentanyl, whether he prescribed it or not. I suggest you talk to your pharmacist, as I do find that doctors can't keep up with the pharmacological side of their responsibility as much as pharmacists.
    Amanda S Yanis said:
    Whew, sorry i have so many question. I hate that I always clam up and forget the important stuff when I pay some doc over $300/visit!!
    I have to go with a list. ;)

  • I have a totally collapsed disc that is bone on bone and can tell you that the pain did NOT go away. Have you considered writing down questions for the doc as you think of them? That way you will have your list for the next appt and are not likely to forget the questions. That is what I do and it works out well.

    Absolutely appeal the SSD denial. These things can take years. If you are better and able to return to work you may cancel the application. It will be much better than starting all over again in the event that you are not able to return to work. Fusions do not have a very high success rate. I understand how desperate that you are for some relief but it seems that more and more docs are steering clear of fusions. I read an article a few weeks back that said that a study was conducted of people that had back surgery. It found that after a 5 year period the folks that had surgery were in as much and sometimes more pain than the floks that never had any back surgery at all.

    My doc told me last week that he will bet that fusions and ADR will be a thing of the past in the next 4 years. His belief is that the only time a fusion should ever be considered is if your back is broken.

    All of this is just my own personal opinion but I hope that I was able to help you in some way. Good luck and please let us know how you make out.
  • I would say that it is worth your try to appeal for disability. I know a couple people who have been denied, and I wonder if for some reason, the government has found this as a way to make cut-backs when people are trying and DO qualify for disability. Just be honest and be sure to have your primary behind you. If your primary thinks you do not need to be on disabiliry, then you may be denied for that reason. If he or she feels there are valid grounds and enough disabling issues, then you may win your fight for disability. I have heard too, that sometimes you have to go through the State disability first. And even with valid reasons, the State you live in may deny disability. I don't know what you do from there, besides fight it. On the State level, it is possible to have phone interview if you can't go there.

    Pain levels - yes, they truly exist for each person! And, I feel bad that your husband does not understand. Maybe you need a better doctor, who will do the surgery well and help correct the cause of the pain! Belive it or not, in time, one gains a high pain tolerance and that can be better than all the pain meds. However, nerve pain is different, and that nerve pain is the worst and I have not yet gained a high pain tolerance for that! You may think I am crazy, but one can reach a high pain tolerance level! The bottom line is, they have to find the cause of the pain. And all to often, too many male doctors do not understand or they are not considerate when women are in pain!!! But then again, there are many kind, considerate and understanding male doctors. My back surgeon is one of them! I would not want to make a broad statement that leaves good doctors out.

    Best of luck and prayers for ya, too!

    I don't have any answers about your back issues. I am too much of a newbie myself!
  • Well I called my doctor to get a refill on my patch and see if she could give me a 25 mg instead of the 50 I've been on. She gave me the 50 mg and told me to cut them in half! So last Wed. I put on my first "half dose". I really didn't feel any differant except for being tired and maybe some more pain than before. So yesterday around noon I took the patch completely off. I slept almmost all day yesterday and when I woke up around 11 am this morning, I felt awful. I kept getting hot, then freezing, I was crying for no reason, acted like a complete witch, and just felt all achy and sore. I took two Lortabs within an hour, and now I feel fine. I'm actually really hungry, which is odd since I haven't been able to eat much since I went on the patch. I'm hoping the worst is over with.

    I go on Tues. to get my shot, and I really hope this works. I'm to the point now where I just want to get on with my life, whether I'm in pain or not.

    Just thought I would update on the patch.
  • fusion..... The only thing I can think of as to why he would do a 3 level is because if you have multiple degenerating disks and you have a fusion on one level, it often advances the collapsing of the other levels, ultimately leading to perhaps another fusion on those levels. So, he may just want to fuse them all at one time, instead of waiting for the ball to drop on the others.

    I had a surgeon (I moved out of state so I no longer see him) that said if the MRI confirmed that all levels were weak with mild bulges, that he would fuse all 5 levels in my lumbar area. My bad disk is L5 S1.

    Just my input. :) Sooo not a doctor, just giving you my experience. :)

  • Amanda

    Do not cut the patch. Transdermal fentynal patches are not meant to be cut or torn or modified. Using a cut or damaged patch may lead to a rapid release of medicine and serious, even fatal, side effects.

    I would seriously question any doc who suggests using a transdermal patch cut in half!

    Your box of patches should include the information on the medication along with all warnings and proper handling. PLEASE take that out and read it!

  • dilaurodilauro ConnecticutPosts: 9,859
    Big Red Flag

    Do Not Cut your Fentanyl Patch

    It is the same thing as if you crushed an Extended Release medication. What happens if you alter the the way the drug is to be administered, you will get a
    HUGE dose all at once. In the case of the Extended Release pills, that can result in Respiratory failure and even death.

    There will never been a Doctor or a Pharmacist that would even suggest cutting a patch in half.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • well my doctor did tell me to cut it in half, and this is not the first time she has told me that. They even repeated it to my husband when he went to pick up my prescription.

    And yes, I did read the insert in my package, and have spent HOURS reading online about cutting the patch. That is why I decided after two days, to just take it off completely because it does scare me. I have read though, that the Mylan patch, which I am on, can be cut because there is not a resevoir of medicine.
  • well I got my shots. I hurt really bad. I was good for maybe 2 minutes afterwards. the doctor told me to wait it out 1-3 days and hopefully I will feel better. I hope so because I'm pretty much bedridden as it hurts to do anything. The 1 1/2 hour car ride home was horrendous. Plus I'm still sick to my stomach with stomach cramps. I just want to be better. I just want to be able to take care of my family again. We don't even have any food here to eat because I can't get to the store. I'm barely able to get my kids up and ready for school. I can't walk my 3 year all the way to his bus because there is no way I could get up and down the three steps to the sidewalk. I just hate this.
  • That is odd that you didn't have relief for the time the numbing agent was active. I assume the injections were done under fluoroscopy, right? Did you have any conscious sedation or did they just numb the skin? Did he ask you to tell him when you felt the type of pain that is typical of your particular pain??

    At least with the nerve blocks I have had, which were transforaminal, they were done without sedation so I could tell him precisely when I felt the pain. After, they had me get up onto my feet and tell him if it hurt, or not. Then I was supposed to do all the activities that normally would cause pain, to see if I was pain-free. Usually the numbing agent lasts around four hours or longer...then the pain starts to return. The steroid may or may not kick in providing some relief again...

    I think you must have had some other type of injection. I can remember the very first injection I had, I was laid up in bad pain for five days, or so. I never had that severe a reaction again, although each time has been different!

    Hope you feel somewhat better tomorrow. You can use ice for the pain and then, after 24 hours, you can use ice or heat, or alternate...whatever feels best.
  • To Amanda:-

    I know you want to feel better straight away, take care of your kids, return to normal life etc. In case it takes a little longer than you'd hoped, have you considered ordering your food online and whatever else you can, to save you from dragging round the supermarket and carrying heavy bags? I've had to do it for almost 6 months now and actually it's not so bad once you've set up your initial 'usual groceries' and the charge for doing it (UK) is comparatively small.

    To CaityC: I was wondering whether you ended up having this done (all levels fused) or did you refuse (no pun intended!).

  • Unfortunately I have not had any surgery. :( We moved out of state in March. My new surgeon here said I'm inoperable, at least for now. With all the problems I have (you can see it on my signature), it's still not enough to risk doing a fusion. I don't have any numbness or paralysis yet. I hope I'm making sense. :)

    I'm not sure what the future holds for me. But I would imagine that with all my lumbar levels in poor shape, I'm probably looking at a multi-level fusion in the future.

  • To Caity
    I don't want to hijack this thread, so please see PM
  • Yes it was done under fluoroscopy, he just numbed the skin, and yes it hurt like heck!! Although honestly I don't know if it actually mimicked the pain because I was in so much pain going in, I don't think it could have gotten any worse! I hope that makes sense! He didn't have me move around afterwards, in fact i went straight to a wheel chair becuase my feet where numb. He came in about five munutes later and asked how I was and I told him I was still in pain. He looked really confused at that point. Then when I told him that it was really hurting on the front of my thigh, he kinda acted like I was making it up. However I have told all the doctors from the beginning that it hurts there too. The pain starts in my lower left side, and goes down to my entire thigh, down to my feet. It's the same pain I felt all three times i was in labor with my kids.

    I know he did a Nerve Root Injection on both sides. I would think he knows what he is doing because from reading about him, he has written many papers, and given lectures on this stuff. He works out of Indianapolis so its not like a small time doctor. but I guess sometimes that stuff doesn't reallly matter.

    I just dont' know what to do, I'm taking my Lortabs round the clock, and I've even been taking naproxen again. All I've done since I got home yesterday is lay in bed with the heating pad on my back.

    Oh and the doctor made me an appt. for Jan 4 and told me if I felt better by then, to just cancel.
  • Wow, I am shocked at some of the things your doctor told you. Are you able to get a 2nd opinion, or find a new doctor altogether? I wouldn't let that doctor touch me with a 10 foot pole, especially after they told you to cut the Fentanyl patch. I'm so sorry you're dealing with so much runaround. :(
  • Whoa Amanda........ I also had the nerve block under fluoroscopy and local anaesthetic (ie superficial numbing), and can honestly say that I barely felt it!

    I agree with nosovertail; if he's the same chap who advised you to cut the fentanyl patch, I wouldn't let him touch me either, not with a 10-foot or even a 50-foot bargepole and would 'drop him like he's hot' (you know what I mean!).
  • It was my family dr who told me to cut the patch, not the dr. who gave me the shot. I am thinking about switching to a diff. dr though. She's been really flaky lately forgettng things that shes already told me. Last visit I was told she would take me off work until the end of the year. When my husband piccked up my paperwork yesterday she tried to say that she onlly said until Dec. 15. Anyways she will not take me off any longer. This crap gets old.
  • Your family doctor should have her license reevaluated. Seriously, what is she thinking?!

    You should address these issues with her, and honestly if I were you I'd be looking for a review website or something where you can warn others about her. She is potentially putting you in danger, there is no way of knowing how you'd react to that patch being cut. You could have DIED!!
  • No disrespect intended to anyone reading this who has a great family doctor, but our older males ones here (UK) are so behind the times, it's appalling.

    Perhaps it's due to their age, but many don't know how to use computers or the internet, so have fallen behind when it comes to important things, like side-effects causing newer drugs to interact, newly-discovered research ie stem cells and even conditions, like Restless Legs Syndrome. My family doctor had never even heard of RLS, so I printed off one of the many articles about it. He asked if he could keep it because he'd never heard of it before!

    If your family doctor's anything like that and it sounds as if she is, drop her and move to someone with a good reputation. It's a new world out there, but it's part of their job to keep up with it.

  • Hi, just wanted to throw in also that you never cut a Fentanyl patch! It is dangerous!
    I was on them after I was in an accident, for 1 1/2 years. They made me feel sick all of the time, so I wanted to go off them. My doc had me decrease doses down to the lowest-12.5mg, and then I went completely off. I don't mean to freak you out or anything, but you will go through withdrawl. They gave me hydrocodone to help wean off, but I still went through the sweats/burning skin, shaking, sick feeling for about four days. The worst was the second and third day. It was about a week before I started to feel more "normal". I never want to go through that again, but it was worth it to get off the Fentanyl! I wish you good luck, and you may not go through near what I did, I am sure it is different with everyone.
  • I also meant to advise you to make a list of questions to ask your doctor the next time you ring or visit. If you're anything like me, as soon as the 'interview' begins, you tend to forget half of what you went for.

    I make a list now, whether it's the local family doctor or the spinal neurosurgeon. Having said that, the last time I saw the neurosurgeon, I was in so much pain, I forgot I had my list waiting in my pocket and therefore forgot all my relevant questions! So the question remains, how do you remember you've actually got a list in the first place if you're in pain?

    Seriously though, on balance it helps to do this prior to your visit.

  • That is so true Val. I wrote to my surgeon afterwards asking my most improtant questions (the list was too long to ask them all), and luckily he answered.

    I write my lists in double line spacing, then write the answers I am given in the gaps.
  • The trouble with consecutive or accumulative medical opinion is that as you say, you then have three individual opinions with an alternative approach and strategy for each one. Ideally a second opinion would be to confirm the initial opinion and this is not the case and one of the difficulties of trying to align an appropriate strategy from all three.

    It is always a leap of faith and patients still continue to see those best placed to help them and leave either more perplexed confused or just angry.

    Some years ago I and my wife went to a consultation he recorded the whole process and gave us a copy so that once reality had returned we could make that all important decision, it is an underutilised resource.

    The objective for a concise decision is to get he right one for you based on evidence and clinical need, we as lay people we should question its suitability to provided improvement, we are not doctors and need some faith and courage to accept the best possible option for the future.

    Chronic pain does have this diversity and range of suggested improvement and each process with have some merit and associated risk. I always write my questions down before the emotion and reality of each event and it shows that you have given time and thought to what is important and managing your own plight. A good doctor would understand that you are apprehensive and tentative about the future; it is too late to ask those questions once the surgery has been performed.

    Analysing the range of probabilities and outcomes is never easy or simple when our time comes, it is hard. My own professor told me my spine would never be improved from my own failed fusion and although those are not the words anyone wants to hear it was the truth, he was not asking me to like it, it took some guts for him to look me between the eyes and just tell me the reality.

    Sometimes one decision influences another and all the deciding process comes at once, the key is too focus on what is important and urgent, review and evaluate what the outcome may be and make the best decision possible at this time with known facts, have no regrets and keep moving forward however slowly that seems at times.

    Let the doctor do his job, would we allow others to tell us how to perform in our own employment, we do put that trust expectation and future in others hand, it is not easy.

    Take care and good luck.


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