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Where do you go when you have no happy place?

jsirabellajjsirabella Posts: 311
edited 06/11/2012 - 8:43 AM in Lower Back Pain
Well I finally had the discogram today and I rather not describe the procedure to scare anyone here but if you are scheduled for one please be prepared. Please make sure you have a car ready with someone to help you to take you home and try not pick a place too far away from your house as you do not want to take a long drive home.

But to the more important part of the procedure, the results. I knew they would find L4-L5 positive but I did not think they would find L5-S1 also to be positive as on the MRI L5-S1 was so small. He explained that it took less fluid to get L5-S1 to produce the pain. That blew my mind and has now thrown me into a deep state of depression.

Now that I have done so much reading on this subject I do not believe an IDET would be an option as it is on two levels. Also I asked him about the IDET and he said that the L5-S1 is so small and it was hard to get in there meaning doing an IDET may not be possible on that level. I will not do a fusion unless I can not walk and that seems the only next option.

The funny thing this week I took no meds and started doing swimming. It really was making me feel good. I also was wearing a lumbar support strap and now sitting really does not bother me. I am not sure why the discogram seemed so bad but it is obviously worse than I feel.

The funny things about the procedure is the pain never reached my legs really. It was really right in my lower back. There was no sciatica sensations.

The other important thing was that they did take my blood which I have plenty of and while a blind test they shot it into my disc instead of the dye. In 8 weeks I will really know if they used my blood. After reading Mike86 thread I am doing the same thing as he did only without the stem cels. Cause as I read his blog they were shooting into the disc.

I guess like the other thread states my destiny was written 1 1/2 years ago. I do not wish to be a burden to my family. Like my wife said I am coming to a conclusion without even talking to the doctor. I will remain hopeful about the study.

My tag line is quite poignant cause the people involved actually did care and one of the doctors held my hand as the pain levels were almost intolerable and kept saying go to your happy place and all I could keep thinking was where do you go when you have no happy place.

-js
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13

Comments

  • have sedation during your procedure?
    STRAKER
  • No...as he really wanted me to feel it and use the least amount of fluid (5ml) to produce the pain. He said at one teaspoon I was able to reproduce it which he thought was quite low even though initially he said he was going to start with 1 ml steps.

    They immediately game me two percocets on the stretcher before the CT scan. I never had them but it took 20 minutes to kick in and make me feel a bit woozy. I believe they are already wearing off.

    To be honest the pain right now does not mean much to me. It is what they found that I find quite disheartening.

    In your case they obviously need to do it straker but unless you are going to have surgery no one should do this and in this day and age the fact that is the only test that works is to me almost impossible to comprehend.

    -js

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  • i will be having sedation and the surgeon that is doing my operation will also be doing the discography .i need a very invasive operation and 3 surgeons have already turned me away but this one guy is an expert for ADR AND FUSIONS and he is where you end up when all else fails,he has told me that it will be a tough operation and i will be out for around 7/9 hours and in hospital for 10.17 days and that's a long time for a fusion but in my case its a very difficult operation to do as i have had 2 other operations and they have left me with hardly and support in my spine and i have extensive arthritis
    tony
  • Hi,

    I'm so sorry both discs were symptomatic. Hopefully the CT results will help clarify things. I had IDET with great results, and from what I understand they can do it on 2 levels. I think 2 is the max, but the little brochure thing they gave me before mine said they usually treat 1-2 levels. Also, I'm a petite female with *tiny* discs and while my PM doc commented on how small the disc was for the IDET it did not pose a problem. The catheter is tiny, but hopefully the CT will tell them whether the anatomy of the disc will allow for it.

    And perhaps best of all maybe the blood treatment will work? I think that is really cool that you could be part of that (and hopefully you got the real stuff). Please let us know how that goes.

    Lastly, you may not have a happy place, but just know that you have supportive friends here on spine health. It's always hard waiting and trying to make decisions about how to proceed, but hopefully things will be clear with the CT and they'll have some options for you. Hang in there and let us know what you find out.
  • Thank you for your post it means alot. I know things are not easy for you either. I hope if needed I can approach my situation with the maturity that you have.
    Currently very hard...lol

    Honestly I was very proud about being part of that study. It was one of the reasons I was a bit gung ho about the whole thing. I have to be honest though as I am not sure if I would have done it again...

    He tells me if next time I will get another injection that I can be knocked out.

    Well in the next two weeks I am suppose to have a follow up so I will have a better idea of my options.

    -js
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  • I think something is wrong with my mouse. When I think I am clicking once, I am getting double posts....sorry.
  • I have been reading your story closely as I come to these boards not always to post but atleast to lurk. I was also using the same doctor as the one who would be doing any procedure on me.

    Given all I have read from your posts I am sure you will be able to handle the discogram. In many ways I believe the people on these boards are much stronger than most out there. When I tell people about some stories on this board and explain my procedures I have had they almost faint. I know you will be strong no matter the outcome.

    As you can see in my case it was important as no one would believe that the L5-S1 could have been producing pain. It is as they say a necessary evil.

    Just be prepared for leaving the hospital. Also once you are able to turn over the pain will continue to reduce and as of know I have not taken any more percocet and not so bad. I will stay on my couch and bed for the next four days though...lol.

    -js

    Maybe you will get lucky also and have a pretty lady doctor hold your hand and say "go to your happy place". Maybe you can think of a better happy place than I did...
  • This probably won't make you feel any better, but my current surgeon does not order discograms. He finds other ways to determine which disc is the pain generator if he can't figure it out the usual ways. My doctor would agree with you that there is no reason why it should be done if the patient is not going to proceed with surgery.

    I'm sorry you are devastated by this news. Perhaps some good will come out of it....I don't know what that might be, but your surgeon may have something in mind.

    There is an orthopedic surgeon near me that is drawing blood from a patient and spinning it out to separate the platelets. Then he injects this back into the spine similar to the way you'd do an ESI. Since the spinal area has few blood vessels running through it, this is a way to get the most nourishing part of the blood to the affected site, hoping that it will promote healing. I don't know what type of results he is getting. Had my surgery not been approved, I was going to give it a try. The doctor is using this procedure on damaged discs as well as some other issues.

    Try not to be discouraged. You've had a rough experience and it will take a little time to bounce back.

    About that happy place...have you never been some place on earth that is beautiful?? All you have to do is close your eyes and visualize that locale, or that feeling you had when you saw it. It also helps to focus on your breathing, taking long, slow breathes, no more than about 7 breathes per minute. Focus all your concentration on that breath. Following it out your nose and focus on how it feels...is it warm? Then when you breathe in, follow the breath and picture it filling up your lungs, rising from your belly, through the diaphagm, up into your chest...filling up the lungs...It may take a little practice, but it really does slow down the heart rate and make one feel more calm....

    We're here for you.

    Gwennie
  • As always thank you for the post. A discogram is a test that honestly makes a bit of no sense to me on several levels.

    1) Mine was 3 levels, L3-L4, L4-L5 and L5-S1. Now first they have to get the needles through your muscles and reach the discs. Just this part alone puts you into quite a bit of pain as they keep adjusting the needles to go deeper and deeper. They do use some pain killer during this part but this already puts you in quite a bit of pain.

    2) Now they break through the disc. Honestly at this point now you are really beat up and pain is already pretty bad.

    3) Finally they start the injection, I mean I am in so much pain already how can you tell the difference? This is the thing that gets to me!! You are in so much pain already how do I even tell the difference.

    This is why as I keep thinking about the test unless the images tell the pictures I can not see how they believe my constant complaining of pain and for the first time in my life I asked "please stop" really tell you anything. I cursed quite a bit towards the end in my pillow. In addition by the time you reach the 3rd level (L5-S1) I am in so much pain I will tell you anything to stop. This is why I hope he is not going my emotions but instead something more scientific. I mean I can take pain but this was insane so how can you read anything from it. Everyone has a different threshold for pain also.

    Now they remove the needles are you are still in so much pain and they are taking their time filling out forms!! What pain level do you think it was?, he said while I am dying on the table thinking this may never stop.

    As for my future, all I know if it involves a fusion I will wait till life is not even worth living meaning I can not do the basic of walking. And ironically I have been doing pretty well with work and swimming. I have not missed a day of work since this whole thing started. I will definitely go the 5 years before even thinking about it.

    As far as the study goes I have no idea what they did with my blood after they took it. They could have done as you stated before giving it to me. Honestly even now the worst is over and I will probably not use the percocets and have not taken even one advil in weeks.

    My future may be bleak but I will approach with pride and self respect. I also see no other options but fusion or no fusion...lets hope this new study does something.

    -js



  • I had my fusion when I was driving to the end of our driveway to get the mail and I could not stand for more than a minute or two, certainly not long enough to brush my teeth. Even though it didn't take care of my pain, I am no worse than I was previously!

    How long have you been seeing this doc at HSS? Has he recommended fusion? Are there other options other than "living with the pain?"
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