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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.



  • have sedation during your procedure?
  • 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.


  • 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
  • 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.

  • 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.


    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.

  • 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.


  • 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?"
  • 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.

  • 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...

  • I think the squirming in pain is normal. I don't think the people sitting there hanging out or falling asleep are the normal people. I can't imagine why you'd having anything to be embarrassed about.

    I am not sure which part was hard to understand, maybe all of it (not uncommon!), but I have horses and the barn is my happy place, so when I need to escape in my mind that's where I am.

    I don't think I "endure." I just don't think I sense pain the way others do anymore, honestly. It's not like a strength thing. My brain is just always being bombarded with signals from so many nerves in my back, and I think it just has turned down the volume altogether.
  • I mean if there is one thing I notice alot here is the number of people with back issues and riding a horse. But yet your happy place is back there again.

    Honestly for me I did luv my cycling and the gym and would luv to one day go back there. My wife today said where do you want to go once the blood heals the back. I laughed but she said you have to be positive.

    Well enough of these pity party posts of mine. Today is almost over and I let myself feel sorry for myself today. I need to get back to making sure my family is taken care of and my companyis doing what it is suppose to. Cause honestly no one cares about my back, they just care about me paying my bills.

    Last call...pity party over. You don't have to leave but you can't stay here.

  • Well, it's because horseback riding is not a safe sport, but it's a pretty addicting one. We who do it are fairly fanatical, or we wouldn't to it at all, because perching yourself on a 1500 lb prey animal and imagining you're never going to get hurt is rather a fantasy. Yet, those big dark eyes suck you in...

    The crazy thing is to see how many people do it without a helmet!
  • I too, had a pity party the other day, complete with decorations, invitations and food! LOL :)

    It's okay to acknowledge there difficulty of the test! I have yelped involuntarily in pain many times. I waited way too long to have my fusion! At the end I had bone on bone and the nerves were getting caught on the jagged edges of the bone! The pain was unbelievable!

    I had to giggle at your statement re the strength of the people on this site. I am small/petite also, yet the amount of pain I have been through in the past 5 years is undescribeable! You have to move forward right! :)

    Hang in there! We are here for you! And if a fusion is needed, you will know when the time is right! And if you don't recognise it, your doctor or family will!

    Hope today is a better day and I love your wife's positive attitude!
  • Wish I had my wife's hope...

    Hey for you jayhawk...one more round before we close this pity party.

    How did the fusion go?

  • Heya js! I seem to be having my own pity party today....just frustrated at the length of the journey and the inability to speed it up!

    Got an eye opener today at PT with new exercises in which I realized how weak my muscles are. It doesn't seem that way until I try to isolate one.

    The fusion seems to be successful. I had a rocky start but seem to be making progress.

    Terrified at the thought to returning to work. Gonna give it a try mid June.

    We're having a problem with our pump to the pool. Keep getting put off by the repair man, so I've temp. lost that stress reliever.

    Everyone tells ya it's a long recovery, man are they right!

    Hope you're doing well. How are you feeling now? any better?
  • I have to admit the doc was right that I should be fine by Monday. My Anniversary was yesterday and was going to put off the discogram but my wife insisted. I was able to go out for a brunch so it was nice.

    Today though is totally different story as pretty damn good and I think I made a discovery in the process. Ice seems actually to stop working like it did before seems now aggravating the nerve instead of helping. Today no ice and while the left leg was acting up a liitle, no biggie. It could also mean my lower back is just too sensitive. But no real need for meds.

    Talking about pools, a week ago my gym opened its pool and tomorrow I get to go back. All the doctors kept pushing my to do more exercises including weights but they never gave me exact instructions. Just the exercises to do including weight lifitng. I was a pretty good weight lifter and I believe now when they meant weight lifting, they meant like small weights. If you look at my facebook page you can tell that is not my style. I think if I would have just did swimming and some light lifting I would be in a different situation now. So trying that.

    I hear a fusion is a long recovery but you are closer to the end than the beginning. I kind of look at it that way for even myself. Discogram, past that step, now what. Muscle will get real weak quick if you do not use them and I guess is why the docs push for all the PT when you are pre-surgery. You will be fine as being a weight lifter there is an old term called muscle memory. You be surprised how fast that will come back. I think we appreciate it more after we go through an experience like this and will cherish it more afterwards and not take it for granted.

    I have to go back to work sooner than later usually in my case cause my wife just gets sick of having me around the house. She did show me mercy this time but I remember when I broke my ankle years ago she just couldn't wait for me to get out of the house!!


  • Js,
    A happy place is what you make it and that in itself is difficult when all our hopes and dreams are thwarted in the onset of pain. You have to learn to love and be kind to yourself, enduring constant pain and an unknown future is a new entity for us all and those most able to cope are those who develop some form of additional plan.

    Vocalising our angst is therapeutic and not “making it a career” as Sternbach called it more relevant over time. Many here are now stronger through adversity than they ever imagined, they see things with new eyes and appreciate all those little things we all once missed.

    Pain teaches us about ourselves, as never before and even seasoned patients with experience learn something about themselves everyday. We all had some happy events prior to pain and the key is to transpose and develop new accomplishments over our daily challenges. We are living our own “wonderful life” some good things are with us and we need to search more effectively with help support and encouragement.

    Perhaps others should say where that happy place is for them.

    Take care. John
  • Great post as always John...

    Honestly it was amazing timing also. I am kind of tired thinking about my pain and my business which is also giving me pain.

    I need something positive to do that does not involve anything too physical. I really want to make a short movie but not sure if I can do that now. I have to think about it.

    But I wonder am I just running away from the pain in my life, in the hopes I could outrun it?

  • I don't think that setting new goals and working towards them is in anyway running away from pain.

    Part of the amazing powers of the human body is to allow the brain to over-ride the messages the body is trying to send.

    Very similar to how my daughter can be unable to hear me ask her to help around the house yet hear the faintest hint of her cell phone ringing!

    I think your making a movie is an excellant idea and although I can't stand in one place for long~I'd stand in line to buy a ticket to it! :)

  • Maybe you said it best "...it's all about learning to dance in the rain."

    Thank you for the kind words. I always have to produce such whacky movies maybe I can finally do a romantic comedy.

    I will personally hand deliver the ticket myself..

  • Why not run away from the pain? Some monsters do not need to be faced.
  • My lower back pain began to manifest in 1991.
    I'd had arthritis in my left knee, ankle and wrist, and hand for many years.
    It was assumed, therefore, that the pain in my back was an extension of arthritis and for two years, I was taking anti-inflammatory drugs (Brufen, mainly).
    I developed gastro-intestinal problems and had to stop taking the Brufen.
    In 1997, when the back pain became debilitating, I was referred to the local hospital for X-rays.

    They showed that I had Spondylolisthesis - mild at that juncture. I was prescribed paracetamol.

    Over the next few years, the pain ranged from minor to severe: I'd have periods of major pain, that could last from a few hours to a few weeks, but they didn't seriously impact on my life.

    Beginning of 2008, the pain was crippling me, causing mbility problems in my left leg and foot and not responding to the paracetamol.

    My GP decided to refer me to a consultant spinal surgeon.

    She declared that the vertebral displacement had reached, 'critical,' point and I should have surgery.
    A simple microdiscectomy, she said, should solve my problem - but she referred me for an MRI, just to be sure.

    That was a truly HORRIBLE experience that left me in agony for days.
    The results, sent to my GP, showed that the microdiscectomy wouldn't have the desired effect- that what I, 'needed,' was fusion surgery.

    I was given three months in which to think about it -during which period, I researched the procedure and spoke to my GP. He recommended NOT having the operation.

    Co-incidentally, a friend's brother underwent fusion shortly afterward - and, all this time later, is STILL in agony, unable to walk without crutches and STILL having to take morphine derivitives.

    I decided NOT to have the surgery.

    In this forum, I've been villified for declining surgery and called ignorant for not knowing which number vertebra is causing the problem.

    Well, in the UK, we have no automatic right to view our MRI films. Indeed, they aren't sent to our GPs. All they receive is a written report from the consultant.

    To be honest, I can't see what good would it DO me to know which number vetebra is out of place......

    I live with constant, chronic pain, have very limited mobility and sleep very little.

    I'm addicted to the Co-codamol - despite them not bringing much relief.

    There are days when I cry because of the pain and my inability to function.

    Does that make me, 'stupid,' for having declined fusion surgery.....?

    I think not, but certain people within this forum have dismissed me as such.

    I don't ask for miracles, I don't ask to patted on the back.

    I made my decision and I must live with it.

    All I ask of this forum is that SOMEONE will try to understand why I declined surgery and won't judge me lacking in intelligence for that decision.

  • I can not see why anyone would call you stupid for not deciding to have a fusion. There are many here as your friend's brother where a fusion actually made the situation worse. The people judging you are stupid. I nor anyone else here really knows the amount of pain you are in.

    You have been down a very long and dark road and I am sorry you have still found no relief. In the end the decision is yours to have the fusion. I do believe though you have to continue to try ways to make your life have value, importance and some moments of joy however brief they are.

    I recently had a discogram as the op post indicates cause I want answers. I believe if you are destined to not get the relief you need than you should get answers. The answers in themselves will provide relief. The procedure was a torture but they have now given me answers and some options. As many here you will now when it is time to reconsider your options. I commend you though on not just jumping into any procedure. Early on in my process I was offered a micro-d and now I look back and glad I did not do it as it definitely would not have worked given what I know right now.

    You need to find something other than pain to think about when you get up in the morning. Since the discogram I still waking up in the middle of the night with a couple muscle spasms. I just turn over, go to the fridge, get my ice pack and go back to sleep. I will not let the bad experience ruin my day. I refuse...to me now it is kind of routine.

    I now also feel bad about my opening line here as I do produce horror movies and unfortunately can get a bit dark. Someone I care about wrote me an email and at the end she said that part really bothered her. I am sorry to all who found it a bit too dark.


    I believe straker may be a better candidate to respond to this post as he is from the UK and seems to be closer to your situation.
  • LOL, horror movies. My son saw the trailer for Nightmare on Elm Street and had nightmares for a week. "How do you wake up from a dream with Freddy Kruger in it?" he asks? "You don't worry about it, because he's just in a movie meant to scare little boys" I answer.

    But a couple of nights ago when he had a nightmare about impaled babies, I told him that I think babies represent something innocent he wants to protect, and I think the symbolism is that he wants to protect me and is worried about my health. He had no trouble agreeing with that. I'll get his permission to use impaled babies in a movie, if you like ;) He'll airbrush up a concept sketch even.
  • LizLiz Posts: 7,832
    In chat we were asking you where your spine issues were, this is a normal question so at least one of us can identify with what you are experiencing, we can then support you. One of the things we always say is surgery as last resort, you explained fusion was out and we all respected that. I personally don't know of any other procedure used for Spondylolisthesis, that doesn't mean we expect you go down that route when it was offered.
    I myself have declined knee surgery, also an ESI, choices are with the individual.

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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