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running out of hope

mlcourt25mmlcourt25 Posts: 8
edited 06/11/2012 - 8:52 AM in Back Surgery and Neck Surgery
well, let's start with my story..
I did gymnastics very competitively for 16 years and pole vault for 6 years, and 6 years ago I fell on my head while performing a floor routine. That summer started all of my back pain, I was told I had a herniated L4-L5, but as long as I wore a soft brace I could continue all activity. The pain was in my lower back and all down my right leg. I continued gymnastics and pole vault the rest of h.s. with the brace, and went to a pt place, where they referred me to an amazing neurosurgeon. He is very conservative, and therefore did not want to consider surgery. I continued pole vault freshman year of college, and this is when the pain got even worse, with weakness in my right leg, awful sciatic pain, and constant throbbing pain in my back.

This is when we tried my first epidural steroid injection, which only made me feel worse. My pain got so bad that I could not even put my own socks and shoes on. In December of '08 I had a microdiscectomy w/partial hemilaminectomy for the L4-L5. Recovery was amazing, I was back to pole vaulting in three months, with full release of my neurosurgeon. I continued pt to keep up strength and get adjusted when needed.

Then, in March of '10 the back pain came back again with pain down the left leg this time. We did another MRI, probably my 4th MRI of my back in 3 years,and eventually a miligram that showed a herniation of L5-S1, which I was told was a possibility when going back to sports. I stopped doing pole vault, and well, working out all together because of pain. This is when we tried the epidural steroid injection again, and again it made me feel worse. I had a microdiscetomy on L5-S1 June of '10. The pain right after surgery was horrible, and I ended up staying a night in the hospital. Recovery was rough this time around. Both calves were numb, and my left hamstring felt like somebody was digging a knife into it all the way down my thigh. After three weeks the pain went away, but my left calf has been numb since. I have gone in and out of being slightly active, and as soon as I try to jog the pain comes back.

I had another MRI in October, but the results came back "normal". We tried a new pt place, which definitely helped for a good 2 months, but again, as soon as we went back to jogging or elliptical the pain down my left leg came back. Now the pain goes down both legs, only to mid-thigh, and my left calf is like pins and needles. My lower back gets so stiff at times that I can't focus on anything else. I just went back to the ns today and again, he is making me try another injection, even though I told him they do not help. All he keeps saying is that I am too young for another surgery, but we have tried all other options. I just don't know what to do anymore, I can't workout, which was my life for so long, and sitting through college classes is so tough some days. I don't want another surgery, but I want to finally feel better.

BTW, I am 21 years old now. Has anyone else experienced this exhausting, never ending cycle of pain, and slight improvement, just to go back to pain? What helped you get through the rough patches?

Sorry this is so long..


  • Hey there...sorry you are having such troubles at a young age. I can understand why the doctors want to spare you another surgery. The next surgeries are either revision MicroD or fusion. At your age, you want to be even more cautious on lower back surgery because you are so young.

    Honestly, you will need to assess your goals in life. No one will tell you to stop doing things but you'll need to decide what risks you are willing to take. For me, I dealt with back issues for 17 years when finally had to go for surgery at 40. I had been a fitness freak (well, lover) and had been running long distances in addition to other things. I had all intentions and 'ok' from doctor that after my MicroD, I could get back to running after 3 months. The only advice I was given was to keep my runs to 6 miles or less (I was running marathons and halfs). What happened? The first surgery failed. I had to have another surgery.

    I was never told not to run but had made the decision at that point that I wanted to enjoy exercising so if giving up running would keep my risks of re-injury down, I would give it up. It kills me that I can't run BUT I can walk, bike, swim, and hike.

    So, I'm sorry my reply is long. My point is that there is hope. You may have to adjust your activities but there is hope.

    I have not had injections but those people I know personally that have, told me that it was until the 3rd or 4th injection that they felt relief. And that they had to follow the other rules of not sitting too long, walking during the day, etc. I'd say give the injections a chance and ask your doctor how many he is willing to try before he agrees they are not working.

    As for another surgery. What are your options? Revision MicroD? Fusion? ADR? I suspect ADR is not an option because you are too young. If a fusion is the only option, really do your research. Fusion of the lumbar is tough and comes with its own risks. Revision MicroD could free the nerve but then you run the risk of more scar tissue.

    Has the doctor spoken to you about options to help with the pain? That is the most frustrating thing for me but I'm not at a point where I want to take Lyrica/Neurontin. I take advil, tylenol, adjust my daily activities to make sure I can stand if I have a meeting, walk around 10 mins every 1-2 hours, stay fit.

    It seems your MicroD's are at 2 different levels. If the MRI shows "normal", it means the doctors need more tests before they can offer you a surgical option. A good surgeon will not do exploratory surgery. So perhaps, ask them what other tests are there (mylegram, EMG, etc) that they can do to find the source of your pain.

    Big hugs. I know I posted a lot but hopefully there is something in there that will resonate with you to help with your next conversation with your doctor.

    Others will offer advice too.
  • One other thing, yes, the cycle of pain is Exhausting! And the tough part is that those that never experienced it, cannot fully appreciate how much you are going through.

    What has help?
    - enjoy the good hours, days, or weeks. Don't let those "feel good days" have you dreading the pain days.
    - Try to stay social. Having friends and living 'normal' keeps your spirits up.
    - I have found a balance between wallowing in my chronic pain vs. trying to forget about it. So some days I really take the position that I will not let others know I'm in pain. Other days, I say...it's ok to let folks know I'm in pain. Find the balance.
    - Drink lots of water and walk. Walking just 20 mins/day makes a difference
    - Keep a journal. I don't do this as much anymore but doing it early helped me understand what factors impacted my pain levels. For example, as a female a week before my period creates more pain for my back. Another example, if I don't drink 5-6 glasses of water a day, I get severe leg/foot cramps and am achy. I don't know if it is the water OR if the water forces me to get up an walk to head to the bathroom but there's a correlation. The weather.
    This helps because now I don't panic if I'm having a bad day. I take a step back and think...what could be causing this? What can I do to help get back on track and how many days will I wait before calling the doctor. So far, I haven't had to call the doctor.

  • dilaurodilauro ConnecticutPosts: 9,856
    Once you do that, it is such a difficult downward spiral to recovery from.
    Read many of the member's posts here and you will see what they have had to go through, young and old.

    Its never easy, its a difficult task just getting through day by day. Many folks here have dealt with that daily routine for 25 plus years.

    Now, that doesnt make it any easier for you.
    What has been the overall recommendation from your doctors?
    Considering the MRI's have come back normal and not indicating a problem, what do they suggest?

    It not easy, but it is so very important to maintain a positive attitude when approaching these types of problems.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I have had one mylegram before, which indicated the need for second surgery. I am getting the injection in two weeks, and am starting the medrol dose pack now, so hopefully the mix of these two things helps. If not, my physical therapists want me to get another mylegram that can hopefully show something more than an MRI would. My ns definitely would not do an exploratory surgery unless he felt there was no other option, he is known as one of the best doctors in the area, I am from Chicago, and he tells me every time I see him that he refuses to do another surgery until we absolutely have to.

    The ns hasn't really said what my options are yet, I think he doesn't want to discuss any surgical options unless it has to be another surgery. I have decided that I am just going to take things day by day and try not to worry about anything in the future, otherwise the thoughts will consume me.

    I have great roommates at college who are very understanding of my situation and let me vent when the time is needed, but I also try not to talk too much about it because I don't want to annoy them. They definitely help me keep a balance. They also help me keep up a social life as much as possible, but also understand the days that I just can't go out. I also walk around campus every day, which is basically my only form of activity for now. So at the moment, I am doing my best to stay normal, and I think I am doing an ok job, which is why I am also all for holding off on any surgeries. I just hope we can figure out some form of pain management in the mean time.

    Dilauro, the ns hasn't suggested any other options, but my physical therapists suggest that it could possibly be scar tissue wrapped around a nerve, or something other than a disc hitting a nerve. I have decided to try and forget about the previous failures of the injection and pray for the best. Looking at other posts I do find myself lucky that I can still go to class and hang out with friends for the most part. This site is definitely helping me with a more positive outlook.

    Thank you for the feedback!
  • Sounds like you have a good surgeon!
    The lower back is a slippery slope so he is a good person to be seeking other options. He has your best interest in mind.

    My surgeon is the same way. I actually chose him for a new surgeon because he was conservative. He spent time with me to explain why he was hesitant to do the revision so quickly after the first surgery. He spent a lot of time with me to discuss the future because he wanted me to pick a doctor that could help me the rest of my life and not just for my immediate issue. Your surgeon sounds the same.

    Technology is changing so much. Even if you can avoid another surgery for 5 years, you may have many more options available to you.

    I did have a revision and will tell you that I'm not as far as I'd like to be but far better than I was before. I'm over a year out of the 2nd surgery and find I continue to progress. I still have some pain but it is no where near where it used to be. I have become much stronger too!

    I really hope you do not need another surgery. Stay on here...read around. At least you'll be making an educated decision if you ever are presented surgery as an option.
  • well, the medrol dose pack steroids did nothing. I am getting the epidural steroid injection tomorrow morning. I really hope it works this time.

    Also, has anyone heard of lumbar radiofrequency neurotomy? My physical therapists said they had another patient who had this done and had great success with it. They gave me some information on it to talk to my ns and see if I would even be a candidate and if it could possibly help. Obviously they aren't telling me to go and get the procedure right away, but that it could be another option besides surgery. If you have heard of it/had it, what is the procedure like, and did it help at all?
  • Hi there,

    Good luck with the ESI.
    My neighbor got one a month ago and got about 2-3 weeks of relief. She is headed for another one (they have to wait a month before administering another) and is hopeful to get even more relief.

    Let us know how it goes.
  • Well,
    I think the ESI might actually be working this time. I am not nearly as sore as I was the three other times I got the injection, so I think I might be headed in the right direction. Now let's hope I can get some lasting relief from this.
  • I am sorry to hear of your battle. I am in no way wanting to minimize what you are going through but I want to tell you about my son.
    He was a jock. His whole life was sports and by 15 he had pared it down to football. The coaches were getting him ready during the summer. They called to see if he had eaten his 5000 calories each day. They came and picked him up and took him to the weight room.
    One day he and I were driving to Galveston for a weekend retreat. We were half way there and he looked at me and said, "Mama I need to go to the emergency room."
    I was in a panic. This was a kid had broken bones skateboarding and not even told me for days. I pulled in to the nearest ER. He said two days before why he was lifting weights he felt something pop. He finished the workout.
    From there we went to paralysis, wheel chair, walking, to school for a short time, relapse and a conservative top NS who had him lay on his stomach in pain for three months to try to avoid cutting and still no improvement.
    Finally, in March surgery was done. It was like a miracle. He was back at school in two weeks. It has been a year and I know he still aches but he wont tell.
    Here is my point. The injury, as many of us here have discovered ourselves was life changing. To us never playing football or sports may seem trivial. To him it rocked his world. The jocks and coaches still have not talked to him. His whole peer group changed. His personality changed. He became mean and angry. He has moved out of my home because he can't stand me. He lost hope and has not found it again.
    There are times life changing events occur. Obviously many of them are wonderful. Things like finding people to love, having children, traveling, graduating from college, starting a career and finding a spiritual path.
    Some of them are negative. Certainly a serious injury to an athlete is near the top of the list. You have incurred a loss. You will grieve and have ups and downs but as you go you will have many wonderful changes as well.
    I wish you the very best. I can tell you are a bright,determined,mature young woman. Sometimes you may start to lose hope but find a place, here, church, friend, family, therapist, nature,somewhere to get it back.
    I know you will.
  • Thank you dollface, that story meant a lot to me. Everyone here has lost a part of their life, that is what this awful problem does to us, but being on this website has been inspirational. It makes me realize how lucky I truly am, that I can still lead a mostly normal life. I still go to school, have friends, and when I can, I still go out with my friends on the weekends. That is a lot more than many people can say. On the days where I want to give up, I come on this website for some hope. I know I have a fusion in my future, but I will go down with a fight before they can stick me in an OR again. It is stories like that of your son's that remind me to never give up hope, no matter how bad the worst of days can seem. I will continue to explore my options and find ways to cope with the pain until there are no more options available.

    Thank you again for sharing your story.
  • So the injection didn't really do anything again this time. I got about two days of relief and now the pain is back. It is down my right leg again and the aching in my lower back is horrible. I go back to the ns on Monday, so hopefully he has a new plan, cause I am not ready for another surgery at this point.
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