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  • Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

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    Old 07-02-2007, 09:06 AM   #1
    denacline88
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    Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Help !!! Anyone have any advice for me?

    I had Upper Thoracic Spinal Fusion at the T/ 8-9 level January of 2007. It has almost been 6 months and I am a total wreck. My pain levels continue to worsen every day. There are days that it gets so bad that I just want to go to the ER. The pain keeps me from sleeping and functioning a normal day to day life.

    I do still have another bad disc at the T/5-6 level that was not fixed. Should I talked to the Dr. about having that other disc fixed? What are the chances that the other bad disc is causing my pain.

    Also the Dr did mention that my hardware could be rubbing on scar tissue. Should I consider having the hardware removed from my fusion surgery? Are there any tests to prove that the hardware is causing the problems? Has anyone has this done before? What was it like and did it help with your pain levels?

    Has anyone had any severe-unbearable pain problems after having Spinal Fusion? I would appreciate any advice anyone has for me, because I am at my last straw here.

     
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    Old 07-02-2007, 09:58 AM   #2
    Johnathansmomma
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    Wink Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Hi there,

    I just wanted you to know you are not alone. I had L5/S1 fusion done in June of 2006, so just over a year ago. I have had severe continuing pain since. Add to that new nerve pain and well there you have it.

    I would suggest contacting your doc and getting an MRI done to make sure it is not the other disc, and start getting to the bottom of it. I was finally referred to Pain managment because my GP felt he could no longer safely control my pain, I had my MRI done last week, and am now waiting to see what the verdict is.

    I hope the best for you.

    Jaime

     
    Old 07-02-2007, 10:07 AM   #3
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Denac,
    wellcome on board!!
    First of all - very sorry you are having such a problem. I would certainly discuss with my Doctor my options.
    I had my 2level fusion 17 month ago and i am still on disability. 6 month after my surgery i practically could not walk or move much - that how much pain i was in. I am still in pain, but i get a normal days now also, although some days i can't get up from bed.
    I also have anoter level broke on top of my surgery and the lowest also. But my Doctor at *** told me that if we can buy some time - we will do it since more spinal surgeries we have - weaker our spines become.
    YOu can read a lot of material if you go through all the treads about second surgeries; removal of hardware is very "hot" topic; i was told my hardware would be removed only if i have anoter 3 level surgery they don't do it just to remove hardware.
    All depends what exactly is wrong in your case - they have to find out. Just want to tell you that recovery after spinal surgeries are very tough and we all get ups and downs way long after the surgery. 6 month is still a short time. But i definatelly would discuss this matter with my Doctor and if you need - you can go for second opinion.
    Best wishes on your recovery.

     
    Old 07-02-2007, 10:14 AM   #4
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Jaime,
    Thanks for the info. I am going to the Doctor's office today. I will be asking him many questions. I will let you know what I find out.

    Dena

     
    Old 07-02-2007, 10:16 AM   #5
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Moldova,

    Thanks for all of your insight. I see my Dr. this afternoon. I will definetely be asking a lot of questions, including my pain management. I firmly believe I should not have to be suffering the way I am. I will let you know how things go.

    Dena

     
    Old 07-02-2007, 05:45 PM   #6
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    denacline88,
    sorry to hear that you are in pain. I know how painfull the thoracic disc can be. I have disc herniation at T5-T6 for 5 years.
    I just got back from New York where a doctor there do laser procedure in thoracic disc. I don't think i want to have it done.
    who/what kind of surgery have you done on your thoracic? did the doctor went inside from the front ? how bad was your dis?

     
    Old 07-02-2007, 08:02 PM   #7
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Hi there,

    I had Spinal Fusion at the T/8-9 level. It was a minimally invasive fusion done through my back with 3 small incisions. My disc was compressing on my spinal cord. I also have a bad disc at the T/5-6 level like you, and at L5-S1 in my lower lumbar but did not have them fixed. I really don't recommend surgery unless you absoultely have to have it, because there are no guarantees that it will be successful. I personally am very sorry that I had the surgery. I really regret it now.

    Fusion surgery takes about 1 year for full recovery, and complications with the plates and screws can happen afterwards, which means more surgery. Hopefully I won't have to go down that road. But it is always a possibility.

    As far as my surgeon goes, he actually is one of the top surgeons in the USA, people come from all over to have him perform surgery. I am located in San Diego, CA. He is trained in Minimally Invasive ways of performing fusion surgeries. I do believe he has my best interest at heart, and really does care about his patients.

    I met with him today and he switched me to a long acting pain medication to see if that would help better, because short acting pain meds. just don't work well. I was on Norco, which is short acting. His theory is that I need to get off all the meds eventually so that he can thouroughly re-evaluate my pain correctly. Right now he feels that I have been on pain meds for over a year and that my brain has been tricked into causing pain. Apparently this happens more often than not. Sounds like a crazy thery...I know and I think it sounds crazy too, but I have had several Dr.'s all tell me the same thing.

    The pain medication he has me on is a low dose of Oxycodone to be taken twice a day. I have to be careful with this medication, because I was on it right after my surgery and ended up in the hospital for 11 days due to complications from the medication. My body reacted very badly to high doses of it. So he is just trying a very low dose. Enough to hopefully help with my pain, but not enough to make me sick again. I am watching myself very carefully as I try taking it again.

    Although I am not 100% convinced of this theory, I am willing to try it. They are trying to get me a referral to a pain specialist Dr. as well, but you know how those HMO's take forever in approving stuff. I will probably be off all the meds by the time I get approval to see the Dr. Part of the problem is that my surgeon was an out of network surgeon, because there wasn't anyone in my medical group who worked on thoracic areas. So my surgeon has to get approval for everything including a pin *****...if you know what I mean. Just a whole part of the insurance company processes.

    Once I am totally off all pain meds. if I still have severe pain, then he will look at other causes and have to run tests etc... to find out the cause of my pain. I don't really think the pain meds. are the cause, but then again I am not a Dr.

    Anyways, I am looking on the positive side that the new medication he started me on today will help alleviate some of my pain. On a scale of 1 to 10 my pain most days is a 10, but I would be happy to get down to a 7. I will give the new pain medication a few days and then see how it is working for me.

    Good luck and let me know if you have any other questions or concerns.

    Dena

     
    Old 07-03-2007, 12:52 PM   #8
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Hi, Dena. I had VATS discectomy and fusion going in my right side/back on t6-7 in Feb. 07 by Dr. Taylor at UCSD. Is that who you saw? I'm having some pain issues - I won't go into the whole thing, but - I'm going to have some steroid injections to get off the pain meds, too. I just moved to San Francisco and I'm in the process of switching dr's. I'm hoping the injections get me through until some real healing happens. My understanding is that sugical swelling and such has gone down, but the nerves and the un-fused joint are still quite grumpy. (um, I think I know that - I live with them!) My dr. here seems to think it will take another 6-12 months for real healting to occur. I'd love to hear more about your surgery and recovery as thoracic people are so hard to find! It's been pretty lonely!
    - Margaret

     
    Old 07-03-2007, 05:26 PM   #9
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Hi Margaret,

    I had a Minimally Invasive Disectomy with Interbody Fusion at t 8-9 level January 30, 2007. My disc was compressing on my spine. Prior to surgery I had 3 epidural spinal injections, and a positive discogram. Along with various pain medications.

    I have Sharp Rees Stealy for my medical group, but they did not have a surgeon who could do thoracic work. So I was sent to UCSD, mine was done by Dr. Choll Kim...awesome surgeon. He really cares about his patients.



    Well the plan is to get me completely off all pain meds and then re-evaluate my back and determine what the cause of the pain is. Could be a number of things, including problems with my hardware. I also have Degenerative Disc Disease and bad discs at t5-6 and L5-S1.

    I am working on getting in to see a pain specialist Dr., but waiting on the approval. Which will take time as we all know how slow HMO's can be.

    My lower lumbar pain I can live with, but the upper is just killing me. I also take Neurontin for my back pain which really help my lower back. Neurontin is an anti-seizure drug that is used to treat nerve pain. I am on a pretty high dose, and it helps quite a bit, with no apparent side effects. I have been taking it for a year now. It never really helped my upper thoracic, but for my lower back it does help.

    On top of dealing with all of the back issues, I got up one night in the middle of the night to go to the bathroom and fell and broke my foot. So I am in a leg cast right now. Was suppose to heal in 4 to 6 weeks, but it has been 8 weeks and it is still broken. I am supposed to have my 3rd lower lumbar epidural injection, but they had to put it on hold, because they won't do it until my broken foot has healed and I am out of the cast. But I got about 30% relief f rom my last lower lumbar injection.

    Anyways, back to the back issues...what would you say on a scale of 1 to 10 is your pain levels most days?

    Mine seems to still be a 9 or a 10 right now. I just can't get my pain under control. As far as going off my pain meds, it scares me to death, because I fear that I will still have the pain and then for a month or so while I am off them, will just be suffering. I know I am looking way ahead at things, but I am that type of person.

    Right now my pain is just crippling me. I don't leave the house except for necessary Dr.'s appointments, because I physically can't do it. I cannot walk, sit, or stand for more than 15 to 20 minutes at a tine without seriously aggravating my back pain.

    It seems as though my pain just continues to get worse each day. I am trying to be patient, but sometimes it is tough. Luckily I have a laptop for my computer, so I can stay flat and still work on my computer, which helps me out a lot.

    I am not sure if it is okay to share e-mail addresses on here or not? Could you let me know. Because if it is, I will give you mine. I am so new to these message boards, that I don't know all the rules, and etiquette.

    Keep in touch.

    Your Upper Thoracic Buddy
    Dena

     
    Old 07-03-2007, 06:42 PM   #10
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Hi Dena,
    Thank you for answering my questions. I believe that you will get thought this pain and recover completely. Also your broken leg will heal faster. I can imaging how bad is your pain. One thing you could do to take your mind off the pain is by keeping your self busy. Done sit around make your self active. I seems when I’m active I forget my pain.
    We all appreciate what you are doing by answering questions to people like us in pain.
    One final question. Does your pain comes and goes or do you have it constantly?
    Mine some days constantly, some days don't have it at all. If I lift any thing beyond 10 lb I will be in hell.
    My thoracic pain gives me heart palpitation and my left arm some days goes numb. Do you get this?
    Have you experience any chocking and tightness in your throat or neck area?
    I have that but many doctors who I have seen saying that the pan can not be from the thoracic
    I'm fortunate to live in Los Angeles. I will check out your doctor in San Diego.
    This past week I was in New York .I saw Dr. Daniel Choy. H He does the minimal invasive surgery with a laser. He seems very popular. He has been on TV and news. I just wonder have you heard anything about him. He does thoracic with out cutting you up.
    Thank You
    P.S keep us update

    Last edited by moderator2; 07-03-2007 at 06:53 PM. Reason: please do not post doctor's websites - as per the posting rules

     
    Old 07-04-2007, 09:55 AM   #11
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    Smile Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Hi Juneroy,


    Thank you for replying back to me. I try my best to keep my mind off of my pain. But it is difficult, beccause I am very limited to what I can do still. I am not able to sit, stand, or walk for more than 15- to 20 minutes at a time otherwise my pain levels are aggravated. I really feel best when I lie flat and rest my back.

    Now to answer your questions: My pain never goes away, I have it 24/7, now the intensity changes depending on what I am doing. Like for instance if I do any prolonged sitting, standing, or walking, then I can barely move. I am not able to lift anything unless it is very light.

    My thoracic pain causes severe chest pain that never goes away. I feel the chest pain when I breathe normally or take a deep breath. It also wraps around my rib cage areas.

    As for the arms, I get pain occassionally in my arms. In my right arm I get numbness and tingling. But do not have it all the time.



    I have been told that people come from all over the US just to see him for surgery, because he is experienced and trained in Minimally Invasive Surgery. He apparently is one of the few in San Diego that does it.

    Although mine was not done by a laser I still have incisions in my back. Typically he does them through your side for most paitents, but because I have very severe Asthma mine was done through my back.

    Sorry I have never heard anything about Dr. Daniel Choy. I didn't even knw they could do it by Laser...that is amazing.

    Feel free to ask me anthing else you may want to know. I will let you know how the foot is next week after I get it re-x-rayed and check again. Hopefully it will be healed, as I am tired of wearing this cast.

    Dena

    Last edited by HBMod07; 07-08-2007 at 08:22 PM. Reason: directing seaches is not permitted

     
    Old 07-05-2007, 01:11 PM   #12
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Dena - Argh! I am so sorry to hear about your pain (I can very well relate) and now your foot! My pain is not as bad as yours everyday, but it gets like that for a week or two, then goes down to treatable with pain meds. Yes, I went through injections, radiofrequency ablation, therapy, acupuncture, chiropractic, yoga, etc. before surgery. I took neurontin, too. It helped for a while and then it really didn't. Sadly, it left me with 20 lbs to deal with! I'm going to have an injection soon to help with the radicular pain. I'm a little anxious about that because my fusion is far from complete. My understanding is that steroids and bone growth don't go well together - much like your foot situation. I take ultram, percocet and baclofen prn. I try to make it through the day and medicate at night to get some sleep. I just started on Cymbalta for pain and the depression that comes with feeling isolated and useless to society. It makes me horribly tired (like napping 4 hours during the day) so I'm going to try switching to taking it at night. Have you considered Cymbalta? I know it helps some people with chronic pain.

    So, these days, I'm not supposed to lift, bend, twist or anything that would stress the fusion site. I just joined a neighborhood gym and I do the stairmaster on a really low level. I'm hoping that by getting my blood flowing, I'll have more energy and maybe I'll get stronger overall to help beat this situation. I've gone only 4 times and the pain increases only by 25% for the rest of the day. I'm hoping it's worth it!

    My new spine doc here suggested a high protein diet as it seems to help stimulate bone growth. Also, I've read that high protein is good for your metabolism and mood. i could use a boost in all three! So, hard boiled eggs, cottage cheese and edamame for me!

    I hope you don't mind my long ramble. I'm so happy to find someone who can relate! Please stay in touch with what is going on with you. I really hope you get some pain relief ASAP!
    -Margaret

     
    Old 07-05-2007, 04:44 PM   #13
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Another resource available is Dr. John Regan in Beverly Hills.
    He specializes in upper and mid back.

     
    Old 07-05-2007, 06:38 PM   #14
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    Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Thanks for the information I will look into it. I appreciate your response.

    Dena
    in San Diego

     
    Old 07-06-2007, 07:04 AM   #15
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    Smile Re: Upper Thoracic Spinal Fusion and Now My Pain is Worse Than Ever !

    Hey Margaret,

    So what part of San Diego did you live in? I live in the Clairemont area. Do you like San Francisco, and whatís the weather like up there right now?

    You mentioned taking baclofen, what kind of medication is that? I think when I see the Pain Specialist, I am going to also ask him about the Ultram, because that might be an option for me once I am off all the pain medications until they figure out whatís wrong and causing my pain.

    So right now I am taking Neurontin, Norco, Wellbutrin, and Oxycodone. Oh I do occasionally take a low dose of Valium for back spasms, after my surgery I had them quite often, now I only have the occasionally.

    I am like you, I found that initially the Neurontin did help me with my upper thoracic pain, but now I donít see it helping much, but I still take it because it really helps with my lower lumbar pain, and since there are no side effects for me, I donít mind taking it, I just have to remember to take it every 6 hours. I am on 2400mg a day, I take 600mg every 6 hours. How much were you taking a day?

    Yes, you are right, steroids do slow the bone growth, which is why they wonít do my last lower lumbar injection until the break has completely healed. Wouldnít you know my stupid foot has decided to take itís sweet ole time in healing. Ugh !!! Very frustrating, besides the fact that I am tired of hobbling in a walking cast especially now that itís getting hotter each day.

    They have me on a low dose of Wellbutrin right now, which works very well. I ask the Dr. who prescribes my Wellbutrin about any other drugs that might help with pain, and she did mention a low dose of Cymbalta, but she was a little concerned, since I just started the Oxycodone, and also because I am on so many other medications, I have quite a long list. So we are holding off for now, and I told her I would think about it. But I really donít need anything else for Depression issues at this point, what I need is pain control. So if it would help with my pain, then I might be willing to try it. I will research it and talk to her again about it.

    What do you do for sleep? I donít sleep more than about 3 to 4 hours a night, and most nights I am woken up because of my pain. Then I canít get back to sleep until I take some pain medication and it has had time to kick in and work. I know that it is a known fact that sleep is very important in the healing process, so I know that it is not helping my back recovery or the healing of my foot.

    I am like you also, in that I am not suppose to twist, lift, no prolonged sitting standing or walking. I am allowed to bend occasionally if I bend down at the knees, but with my cast right now I canít do that. I use a reacher/grabber thing to pick most things up off of the floor, or to reach things from cupboards. I normally have trouble reaching most things anyways, because I am only 4í 11Ē tall, so I am quite short.

    I am eager to get my pain under better control, so that they will allow me to start some physical therapy. I would like to try it to see if it helps or not. But I am not sure if they are going to let me start it first or if they will first do tests to see what is causing my pain.

    I realized today that ever since I fell and broke my foot, that is when my pain has started increasing. I also realized I have not had any recent x-rayís done since my fall. I will be having some taken in 2 weeks, so hopefully I didnít do anything when I fell. I will have to remind my Dr. about my fall. When I fell I was not wearing my back brace and I did land on my back. But since I had not initial increase in pain, they werenít too concerned about it.

    As for the bone growth and fusion of the bone. My Dr. has me wearing a bone stimulator. Did you wear or are you wearing one of those? Some Dr.ís think they really work well, and otherís donít think thin they work at all. I have to wear it for at least 6 months or until my bone has healed.

    As for my pain, I put a call into my Doctor yesterday on his cell phone (he gives it out to some of his patients.) to talk him about the new medication not working at all and find out if he wanst to increase it, take me off of it and change it or what he wants to do for me. So I will let you know what I find out, I am hoping he calls today. He is usually pretty good about calling back unless he is out of the country or something like that. I would just like to be pain free enough that I could sit up for short periods of time and not have to be flat all the time.

    Are you able to work in San Francisco yet, or are you still off from work?

    Well I think that is all for my book todayÖkeep in touch.

    Dena

     
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