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Where do you go when you have no happy place?

jsirabellajjsirabella Posts: 300
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

  • The user and all related content has been deleted.
  • 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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  • The user and all related content has been deleted.
  • 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 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...
  • 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 have been seeing the doc at HSS for about 6 mos or so. A year before that I went through several different doctors including a head of the dept at Mt. Sinai.

    Based on the MRI he gave me the recommendation that an IDET would be the next step but he first hoped the epidural could last a year or so. Since I came back after the second epidural and continued to complain he said why not get involved with the study as you will need it to have the IDET.

    I thought it sounded great to be part of the study and was a needed step. At that time the L5-S1 was not considered to be serious cause the MRI showed little. Before the discogram he told me here is your options

    1) Get the discogram and study and hope it helps out. If 50% reduction in pain that get another injection.

    2) Get the IDET if (1) does not work out.

    3) If no IDET the only option left is fusion but he says the changes for pain levels to go down are not very good at all. So does not advise it at all.

    4) Wait for up to 5 years and 30% of the folks who do not heal in the first year will heal.

    Otherwise just continue with epidurals and PT...

    That is it and I pretty much feel that the only way to have a fusion is like you when I just can not stand for more than a few minutes.

    The other doctor at Mt. Sinai said pretty much the same thing but in a different way. No IDET as a waste of time according to him and definitely no discogram as too invasive and only if will do surgery. I would have not done is not thinking the IDET and blood infusion study.

    In some ways better to know than not know.

    -js
  • Every procedure is different for different people. I've never had a discogram, but my doctor told me that the RFTC is often quite difficult for people to tolerate. Especially people (like Straker) who have been living with a fairly high pain level for a length of time just kind of tune out (this makes total sense- if you're living every day with a 6 or 7 out of 10, after a while bumping it up to an 8 or a 9 is just no big deal).

    Which might also tell you where we go when there's no happy place ;) Although, personally, I go to the barn, even if I can't go physically.

  • I have no idea what you mean...but as I look back at the discogram...I am a bit embarrassed. I could imagine what I looked like from the perspective of all the people in that room. I was squirming in pain while people were looking down recording data. I am sure I was the story of the day. I usually take pride in the amount I can take.

    I only thank God that I have my daughter and wife to give me a reason to keep going and at the same time I ask God why.

    I hope one day to have a happy place...but it sounds like you do have one. My happy place was destroyed 1 1/2 years ago...

    -js
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