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Vent and Advice Please as doc confused me...

jsirabellajjsirabella Posts: 311
I went back to my doctor today as I had given enough thought, had done enough research and got enough advice to think I should just ask a few questions and than schedule the Targeted Disc Decompression.

The weather was horrendous here in NYC today and should have saw that as a sign. My right was acting up a bit as if I do not do my stretches at min I will get some pain. So I did a few quick stretches before appt and was ready for questions.

The doctor enters the room and suddenly I feel like I am starting all over again! We go through the how you feels and I explain getting much stronger but the discomfort is always there in one form or another. He explains that my small centrally located herniation is one of the toughest to deal with as they are like pimples that will not go away. I thought at this point we talk about the procedures.

He than starts asking about my epidurals. He explains how the epidurals I had while quite effective are not the one you should have according to our research. I do not know the terms but I was having ones that would be on left and right side (trans??) but I should have a center one (col??). We have found in my case that this is the way to go.

I than said doctor you gave me script and we were ready to schedule the TDD. He says well I read your notes more and would like to do this first. Also I am not sure where your pain is really coming from as you do have some issues at L4-L5 but also some small issues in L5-S1 so I do not want to be wrong and would like to do discography before we would do it anyway. But the last time you were positive of L4-L5 and no need. His eyes light up and says well you can participate in a study where we will take plasma and collagen and you have a 2 in 3 chance of getting the study. We have found that patients are responding well to it. I was again like huh?

Than we can do the TDD he explained. At this point my mouth was wide open and I had nothing to say. As all my preparation was a waste of time...

I have had this happen to me twice now with two different docs...why? Do they just forget me? Are they in a different mood that day? I am lost for words and honestly feel like I should just continue with my PT and say screw it to all of them until I can not get out of bed!

Have you folks had this experience and can you give me some advice? I schedule the appointment for epidural later than sooner as I want to think about it.



  • Wow you poor thing. Is there any way to get into a different doctor? Your doc seems a little flaky. Maybe he just had a visit with an industry sales person and was offered bonus's for signing up patients for the study?

    I know how terrible we feel, we just want to get in and get "fixed". I hope the epideral helps. Are you going to have the discography? My NS has never suggested that I have one- let alone two.

    What is TDD? Sorry it doesn't sounds familiar to me.


  • I know it is discouraging that you were all prepared to have surgery and the surgeon feels something else may help you. But it seems as though he/she is being honest saying they are confused as to what is causing the pain. You should be happy they don't want to jump in surgery that could not take away your pain but also make it worse. It sounds as if you had reservations about the procedure initially and may have caused them to take a closer look at your case. Keep in mind one of the risk of surgery is the need for future surgeries, so while today didn't work out perhaps the way you wanted. It may pay heavy dividends in your future. Try to stay positive and possible this new procedure could keep you out of surgery. But then again if surgery is deemed necessary they will have all the information they need. Take care and keep us posted.
  • I would not have surgery and the only reason I was kind of excited of this possible solution called Targeted Disc Decompression was the fact it is not a surgery but involves a needle and while more intense than an epidural not as if they are cutting anything.

    Do not get me wrong you do traumatize the disc and you do need some recovery time similar to surgery.

    I just do not get all the changing of tune? I mean if during my checkout the first time I would have said.. ok schedule me for the TDD than I would have already had it. Now you are doing a 180 on most of what you said.

    I have had two docs set me up for something in 1 appt and than do a change of mind in the other. I mean I went through alot of mental thought and preparation just to deal with getting this procedure done.

  • Is this doctor fairly new to you? I can't quite tell from what you wrote in the first post, but I got the feeling he was looking at notes from a previous surgeon or what you told him.

    I have found, from having numerous consultations, that unless you have a long-going relationship with the doctor, you get the diagnosis that is the most obvious, or the procedure that first pops into his head. You don't necessarily find them examining all the options on that first or second visit.

    What the doctor told you makes sense. There must have been something that popped up on your chart that he hadn't noticed before, or whatever...but it was enough that it made him question what had been his first impression...to do the decompression. Or he noticed something that made him feel that procedure might not take care of your problem.

    If everything else seems OK with this doctor, I would go ahead with the ESI. If your herniation is that small, it might be just what you need to be able to get it to heal on its own without having any further procedure. I'm not a big fan of discography, but I know it does have its place in determining the pain generator.

    It may be that your problem is such that there is no clear-cut way of dealing with it.

    I think when doctors practice medicine, there is no one way to approach a patient's problems...so from month to month when they see the patient, there is wiggle room for them to decide another way might be a better way to proceed.

    I've had the same feelings from time to time with my current surgeon. A couple times he tells me something that seems to be in direct contradiction to what he said the time before. I've been going in almost monthly for a year to figure out the next step in trying to resolve my radiculopathy. It is frustrating but I just keep plugging away.

    If you like this doctor otherwise and would want him to do your surgery if you were to have any, then I would go ahead and have the injection. If not, I would try to let the disc heal on its own, or seek a third opinion. If you have been going to neurosurgeons, I would switch to an orthopedic spine surgeon, or vice versa. That's what I would do, if I were in your position.

    Let us know what you decide!!
  • Honestly maybe part of it is my fault as I have switched around quite a bit with doctors but it is mainly because I have felt that doctor has reached a dead end.

    Doc 1 -> pirformis syndrome, bad diagnosis, switch doc

    Doc 2, physiatrist (sp?)-> L4-L5, good diagnosis, can not operate too small, PT and epidurals, did them and still discomfort coming on year. He just keep recommending meds and PT.

    Doc 3 (NS) -> Real small, yeah can operate but should not have too. OK cya later. Lets wait.

    Doc 4 (spinal othopedist) -> Could be hips, not hips, too small to operate. More PT but we can operate but we really should not. OK...cya later. More meds?

    Doc 5 -> TDD, the high cost doc in one of the best in NYC, HSS in Manhattan. OK let me give it some thought. Come back, ready to go... new plan of action. What happen?

    This has been my life for the last year. Doc 5 and Doc 2 are my favs and trust them both the most. I really thought since Doc 2 agreed with Doc 5..lets go. Now change of plan.

    Do you know the difference he speaks of with these epidural types? Also I really do not want a discography...it seems I can be putting myself in much more pain longer term based upon stories. He said he could give me a sedative.

    OH well...the beat goes on. I will do this third epidural as the first 2 were ok...no 1 being better than no 2. I am not sure from that point.

  • Man, spine problems can be so frustrating, especially with all of the procedures there are for all the different problems that can take place.

    I personally find it reassuring that your doc has been reading your file in between your visits to see what noninvasive methods might be done to help you. He's probably also not making this decision alone, but with a physio doc who specializes in these noninvasive measures.

    I know you've been going through this for a year and you've been told repeatedly that your disc problem is currently too small for surgery. I realize that you were completely psychologically ready for the TDD treatment, but if your doc has your best interest at heart, is researching your situation and realizes after more studying that this could be the thing for you, then maybe it is.

    I've seen that sometime the worst part of our spine problems is the psychological side because we just want it fixed. But I'm really hoping that this new treatment is indeed something that can stave off more invasive measures and that you feel better after it's done.

    I feel for you, I really do. This is all so hard. I remember going into my surgeon psychologically ready for another injection and told a TLIF is the only treatment that they (the surgeon and physio) decided would help my situation. We're constantly being thrown for loops and it truly sucks. But hopefully this hoop is the right one for you and if not, then it'll be time to once again prepare yourself mentally for the TDD.

    Good luck with everything. I'm thinking of you.
  • I would feel alot better if I walked into the room and he had his file in hand and told me his new plan without reading the folder but instead it is much closer to how gweenie17 described it.

    It seems he is talking to me, reading the folder and than giving me his diagnosis of the day. Maybe he did do all this research but I am not feeling it. If I did I probably would not need to rant.

    My spine/ortho first believed it was the L4/L5 but as time went on just did not want to believe it and I can sense his frustration. This doctor on the other hand seems to understand it but because he rates it on the herniation scale of 2 out of 10 that he can try new things.

    Also HSS and him really seem to love new procedures and studies. The first time I went there, I was asked to participate in a study where they can publish and track my progress. I was ok with it. At that time he was real excited about the TDD but today his eye lit up with this collagen/blood plasma transfusion thing.

    Makes me wonder if I am more of a test rat than a patient.

  • Well, if it's not enough to have to deal with pain, we have to deal with lots of frustration! ~X( When things get crazy, I think of a line from Seinfeld -- "Serenity Now!" :D

    I have was diagnosed with a bulging disk at L4/L5 -- After 3 epidurals and still no pain resolution, my ortho wanted to try Plasma Disc Decompression, which sounds a lot like the procedure you described. I was all ready to go with the procedure last year when I went for a second opinion and was told by that doctor that no way would he cut on me - he sent me off with a brack brace and a suggestion to get an inversion table. Also gave me a referral to PM if I wanted to go.

    This all stared in October of 08 and it's taken about a year for the sciatica to resolve -- Whether it was time passing or the Lyrica I'm taking -- I couldn't tell you.

    I guess I'm just posting to offer you support and to commiserate with you on how frustrating the whole getting a diagnosis and protocol for treatment can be. There's a parallel to gambling in Vegas and what we all go through -- it's all about the odds!

    No one ever talks about the financial aspects of co-payments and deductibles as we move through this maze of orthopedics and neurosurgeons, MRI's, Epidurals, Discograms, surgeries. The time it takes to get comfortable with a surgeon or a treatment protocol -- well, it can get very expensive -- so more stress!

    So hang in there with the rest of us -- go with your gut on the doctor with whom you feel most comfortable. I do hope that you resolve your pain issues in the very near future.

    Take care,

  • It just occurred to me when taking a shower, did the surgeon mention having a caudal injection?
  • I know it started with a "C". He explained to me that there are several types of epidural injections and I had the one where they do the right and left side of the nerve. He used a wird that started with "trans.." He explained that they are effective but in my case where my herniation is central they are less effective. He explained the "C" (maybe caudal injection) is done in a central location. He showed me on a model as it was right in the middle of the spine but a bit low.

    He said my small herniation cause it is central is one of the most stubborn as it is protected by a "sac" he mentioned and like a stubborn pimple will not go away easy.

    What is a caudal injection?

  • Maybe it is the same type of procedure but he made it sound like new and in a testing phase. They would take blood/collagen from one place and during the discography instead of shooting all dye at the end, they would shoot in the blood/collagen. The reason discs do not heal is cause of loack of blood flow in that area so this should help in that process he explained.

    Are you at a point now where you can pretty much do as you did before or are you still married to your ice pack like me? Can you drive or sit for long periods?

  • Hi there,

    I'm new to the site, but in reading your post, i feel really bad for you and i know how frustrated you are. My situation has been much different than yours, but i too have had run ins with docs, that change their minds and just plain won't do their jobs. The 1st dr i saw for my back, after 2 weeks of seeing his N.P., just simply punched me in the back 4-5 times and said i had a muscle injury, and it would be fine... this was a work comp dr. My first Dr, got me x-rays and an MRI of thoracic and Lumbar and then, after promising me P.T. and other treatments, quit returning my calls, so i couldn't set appt's or anything. The Dr. that i have now is a spine and orthopedic specialist and i couldn't ask for a better Dr., other than he is rediculously busy and usually running way behind on appt's. I know you're going through hell with this, but i wonder if a change in Dr's is not maybe the best option. It seems that you are just having some really bad luck, but i know that there is a doc out there, especially in the metropolis you are in or near, who will take care of you the way you desearve.

    God bless you and good luck,
  • A caudal injection goes in through the sacral notch. The needle itself is not longer, but (this is a very non-medical way to describe this!!)a catheter type thing is threaded up to where they want the medicine, and then it is injected. Instead of laying it right next to the nerve root as they might do with an ESI, the caudal allows the medication to "float" in, bathing the entire segment or area.

    Then, probably no one told you this, but it is important to go home and hang out on the couch or your bed for the next 72 hours...48 if you absolutely can't make the time for 72. This will allow the medication to have the best chance of working.

    When you immediately go back to your activities the following morning, as you move around, the heart pumps more, the blood circulates more and the medication dissipates more quickly. The medication is not injected into a finite spot, but is placed in the vicinity of something...so the longer it can stay in the immediate area, the better. Many doctors tell you it's OK to go about your business the following morning...but you will get the maximum results if you take it easy. My current PM is very strict about this, but I had a chiropractor give me the tip about five years ago.
  • Thanks for the details and the advice. I really want this one to work at its best so I will try and take it easy for a bit of time as you advise.

    I wonder why he feels this type will work better in my case. But I am willing to give it a shot.

  • Yes, I'm doing much better and to answer your question I just did the big test - I drove from Orlando to New Orleans and then from New Orleans to Housto after Thanksgiving and drove back after Christmas. If that didn't kick up my sciatica, I'm hoping nothing will.

    I'm still on Lyrica and tramadol as I'm pretty stiff and sore in the mornings and it's taken a long time to get my energy back but I see improvement every week.

    I also work out in my yard -- I wear my back brace if I'm doing anything that might wrench my back.

    I'm trying to start walking -- the only thing keeping me from that was a foot infections which has taken forever to heal but now that's it's a little better I will start a walking program.

    Stretches -- I do every day. Use my heating pad each morning but haven't had to keep my boyfriend, MR. ICE PACK (LOL!), around lately.

    Take care JS and hope you get answers and feel better soon,


  • I literally feel your pain....

    The doctors have been playing around with me like that for the past 2 years. In my case, it is mostly because of my age (I am 30). I don't know if this is the case with you but I get the impression that they can be hesitant to do surgery on younger people or those that have unusual problems.

    I kind of fall into both categories. In addition to my supposed "youth" (what a joke - feels like I'm 90 years old some days) I have been told that I should not be in as much pain as I am in. I have herniations at L4-L5 and L5-S1. The one at L4-L5 is the worst. The pain is constant in my back with leg pain about 40% of the time. At one point, after waiting 6 months to see a surgeon that would actually talk to me, I had the surgeon's assistant telling me how they were going to remove some of the herniation and drill to take some pressure off of a conjoined nerve root. He spent more than half an hour answering questions and telling me how the surgery would help me. He said the surgeon would be in shortly to explain in greater detail. So, the surgeon finally comes in and tells me......no go. Since leg pain is not my primary complaint then the surgery won't work for me. Then he tells me that he is sending me back to a physiatrist (my 4th). I burst into tears when I left his office. It was one of the worst days of my life. I almost didn't make it to work that day.

    Now I am doing intensive therapy without drugs (horrible so far) but I have another surgeon that says if this doesn't work he will definitely look into surgery for me. I have to hope he isn't just yanking my chain as well.

    So, my only advice is to try and be patient. I know how much it s*cks but some of these doctors seem to move like snails while we continue to suffer. I guess it is better than having a surgeon who rushes you into the OR but it is still aggravating.
  • I certainly understand why you feel so overwhelmed. By the time they are done with you, you won't know which way is up :/ Just kidding. O:)

    I had a medium central herniated disc on L4-5 and I read online that it is the most difficult to treat because of its anatomical position. After conservative treatments failed (3 transforaminal ESI's), PT, etc) my surgeon first considered a microdiscectomy AND fusion, but then changed his mind about doing the fusion. I also have severe DDD in L4-5 and L5-S1. The following year I had a 2 level TLIF and laminectomy done by another surgeon.

    You have to feel comfortable with your doctor and what he recommends. If the trust isn't there then it's time to move on. I think that you should stick to one doctor so that you have better continuity of care and also that he will know you and your case very well. Just give the caudal injection a try if you feel right about going through with it. Maybe it will do you some good. Take care
  • I think the reason may be because the caudal goes in more centrally. ESIs go in more at an angle, I believe. I know when I had the caudal, it was to distribute the medication over a larger area than could be reached with the usual ESI.

    Rather than placing it up next to a nerve root, he wanted to bathe the whole L5 segment in steroids to try to get surgical inflammation to go down.

  • I will give it a shot (forgive the pun). I do trust this doctor cause he keeps explaining it to me in a way that even makes sense to me. He is the only doctor to talk about its location and the difficulty involved in these stubborn type.

    Honestly at this point I do not want to even consider surgery any longer. If I could go for a year this way I am pretty sure I could go a lifetime. I would give the other type of procedures a try like the TDD but not as crazy about the discography with plasma.

    I just really want to be normal more for the people around me than for me. I do not want my family not to be able to go on long trips cause of me or other things. It makes me feel like I am letting them down. That is very hard for me to accept. I think I am closer to the end than the beginning.

    I am not sure why some surgeons are quick to the trigger while others are not. It seems NS are faster to the trigger. I just worry about the aftermath so I am still of the mind set unless bed ridden to ride it out. But if I could take conservative steps to quicken the pace I will do it.

  • If I may politely point out one mistake in your thinking: that your situation will remain the same....Chances are very good that things will not remain status quo, and I would dare to venture, in all likelihood, the situation will degenerate and your condition will worsen.

    However, if your problem is only the herniated disc, it is possible that it will heal on its own. As I've told you before, I know it happens having watched my husband with a ruptured disc at L5-S1.

    And I speak from experience, having put off surgery as long as I possibly could...having gotten to the point where I would make plans and then cancel out when I would think realistically, and realize I couldn't walk that far, or, at a concert, I wouldn't be able to walk to the restroom if that need came up, or not traveling any more because it was just too strenuous...then you know it is time to do something!

    You still have a long ways to go before you are there....
  • Thanks for telling me the truth.

    According to the doctor my herniation is on a scale of 2/10 on the L4-L5 and I believe the L5-S1 is about the same as the L4-L5 is definitely bigger on the MRI.

    They could not find anything else wrong in the lumbar area as far as DDD.

    While things are in the right direction, they are definitely not ideal. As you said I have a long ways to go as far as running out of options. Lets see what happens with the shot and than I will consider the discography with the plasma/collagen injection.


    Maybe I am being hopeful but I have a better feeling about this shot coming up. Lets see how it goes...
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