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Lumar Fusion and Scared

NiaorganaNNiaorgana Posts: 2
edited 06/11/2012 - 7:42 AM in Back Surgery and Neck Surgery
Hi,
I have had ongoing spinal problems for the last year, I have DDD through my whole lumbar spine, several large prolapses compressing nerve roots and two slighty compressing my spinal cord. I have several tears in the discs and signs of arthitis in my spine.
I have suffered greatly the last year, seeing many specialits, all giving me a bleak outcome. I have allsorts of tests and proceedures done to help with the chronic pain, nothing has helped, i have been getting worse every day. My symptoms included: chronic back pain, chronic leg pain down my right leg, intermitant loss of feeling to my right foot and leg, and general numbness and a lot of weakness in the right leg. I can walk very short distances on crutches, other than that, i am in my wheel chair.
Over the last 3 weeks i have experienced a great increase in pain and now all the symptoms I had in my right leg, are exactly the same in my left leg and the pain is that bad i can not walk, sleep, eat nothing! I am on very high doses of pain killers and my morphine is being increase daily just so i can think straight through the pain.
I went to see another neuro surgeon yesterday, he was very nice and one of the best in the country. He is booking me in for an emergency MRI and when he has the results he is going to call me straight in, he said they HAVE to operate now, he thinks the MRI is going to show that the discs have deteriated and that one of the discs is pressing on my spinal cord even more for me to have severe pain in both legs and now bladder problems.
I have got to have got to have the MRI next tuesday and they have said it can take a week for the results to come through.
He said that the only option they really have looking at my older MRI, is a fusion from L3 - S1, and he said that the newer MRI will confirm that.
I am really at my ends wit, not only do i think i can cope long enough to even get the results of the scan, i dont know how I will cope after the operation. I cant deal with pain and imobility any more.
Anyone that can offer any advice I would be happy to hear from you. I am 24 and i have had 6 consultants in total all say they have never seen such damage in someone my age that had not been involved in an accident
please help, it feels like my life is over
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Comments

  • but please don't give up just yet. Hang in there, this surgeon sounds like he knows his stuff and he may be able to give you some light at the end of the tunnel.
    I understand that you are at your wits end, it can be very frustrating waiting for something that seems like an eternity. But look at it this way, you've held in there for a year, it's only a couple more weeks before things get rolling and I know you can do it.
    Please know you are not alone, there are many people in the same situation as you and whilst I don't want to diminish the pain you are feeling and have been for the past year, there are some people here who have been dealing with chronic pain for over 30 years.
    These people are no stronger than you, they have just found a way to learn to cope. Sometimes week to week, sometimes day to day, even minute to minute, you just keep going because there is no alternative.
    In the meantime you have found a fantastic place to talk to people who know how you are feeling and what you are going through, through this site, talking to people and reading the forums you will find the strength and courage to go on.
    Please stay with us and keep talking through your thoughts and feelings with us, we will keep you sane until you see the surgeon again.
    Sorry for the long post, it's just I can feel your desperation and I wanted you to know you are not alone.
    PM me any time you need to chat and please let us know how you go with the surgeon.
    Kylie
  • Sorry you have to join our group, and at such a young age. However, you came across a terrific place for support.

    Of course you are upset and down. I am no Doctor, but have been around enough to say that it sure sounds like Cauda Equina and you do need surgery very soon so there is no permanent nerve damage.

    The are many helpful articles here to help you understand what is happening, as well as an impressive group of people to help you on this journey.

    Good luck, please keep us posted and ask questions. Feel free to PM me if you want (I have 4 lumbar levels fused/fusing). Take care, Lisa
  • I can't say any more then what Kylie and Lisa said. But you will be suprise just how strong you are.
    Just remember we are here for you.

    (((((((((((((( >:D< ))))))))))))

    Jim
  • I understand your fear of lumbar fusion surgery and that you are trying to avoid it.
    I have been doing the same things for about 2 years. I couldn't face the thought of surgery, so have been trying everything anyone suggested to try to solve my problem.

    I saw 1 surgeon who said it was my decision and when I was ready, I should contact him and he would operate. Well, that just made me more determined to try to improve things by exercise, diet, drinking water, walking, chiropractic absolutely anything I heard of.

    Then I got a second opinion. That surgeon told me that all the things I was doing were not going to solve my back problem. I had severe compression on my cord and if I continued to try to avoid surgery, my legs would become so weak that I would end up in a wheelchair and eventually, if I still avoided surgery, my bowel and bladder function would be affected. Well that certainly helped me make the decision for surgery!!

    Although you are much younger than me (54), it sounds like you have moved on from the stage I am at.

    You say that you feel that your life is over. That is perfectly understandable, because you are in so much pain and your life is badly affected by your problem. There are lots of people who get their life back after surgery and go on to live an active and much improved life.
    Perhaps the severity of your problems makes your decision easier, just as it did mine.
    It could be that you will always have some level of back trouble and pain, but perhaps surgery is a way of improving things. Have you talked to your surgeon about how scared you are, and asked him how much he thinks surgery will help you.
    If you are having bladder problems, it sounds like cauda equina, which is a medical emergency and needs surgery to give a chance of proper function being restored. If it is left too long, the damage can be permanent.

    I am so sorry that you are having to face all this. Have you got family who can support you? You have found a great support network here.
    Stay with us and talk to us about how you are feeling. People here have shared a lot of what you are going through, and can empathise and offer their support and share their experiences.
  • I second everything that has been said before me. But may I risk sounding like an old aunt and tell you that you are young and do not have much perspective on how to deal with this? Perhaps a couple sessions with a psychologist who specializes in pain management would be of help to you, and provide some coping skills so you are able to move through this experience.

    To use a very old and tired expression: you have been given a bunch of lemons. Now it is up to you to make lemonade from them. You really do not have much choice as to how to move forward. Doing nothing will result in a life possibly spent in a wheelchair.

    Try to look at a slightly bright side. You are young and should heal more quickly than us old folks. There are many others out there who have had similar happen to them, have had fusion and are able to regain their mobility and their lives. You may never be able to become a professional sky diver or water skier, or spend all your time on a roller coaster, but you can live a productive, satisfying life just the same.

    You will find the strength to get through this. Keep in mind that your situation will only get worse if you choose to do nothing.

    This board can provide support to you. From time to time there are a number of people in their twenties who frequent the board and would be happy to share their experiences with spinal fusion.

    There are also hundreds of articles written by spinal specialists so you can learn more about what your doctor is proposing. Please do some reading. Things are far less scary when you have educated yourself and understand what might be happening to your body, during surgery and recovery, etc.

    Good luck...and do act quickly. If you have bladder or bowel involvement, it can develop into cauda equina syndrome which can turn into permanent damage if you do not do something quickly to resolve the spinal nerve compression.

    Take good care,
    Gwennie
  • Hi there

    I know how scary it is at your age to be facing surgery with such an uncertain future - I had a cervical rib removed to release a compressed nerve in my arm at 22 and now at 37 have had a spinal fusion from L4 to S1. The way I looked at it was I couldn't stand the pain and the disability any longer and yes maybe I wouldn't be "as good as new" afterwards, but there was that possibility of a good recovery.

    At 5 weeks out yes I am still in a bit of pain and my nerve is screaming when I have to do physio to stretch it out, but you know what I'm on lower pain meds than before the op and best of all I don't need my stick at all. I know it is very difficult to be positive when you're in pain.

    Two weeks may seem like a long time, but they may rush your results if they are concerned about cauda equina. Good luck. I hope things go well for you
  • SpineAZSpineAZ WiscPosts: 1,084
    I had an L3-S1 fusion done 2/3/10. While the first two weeks after were quite painful (I'm not going to hide any of that from you) I finally began feeling better at week 3 post-op. I am 43 and this was much harder than having surgery in my 20's (the last time I had back surgery I was in my 20's). I made sure to take all post-op medications on schedule for the first month, even if I felt decent, as I wanted to control the pain. Then I went to my Pain Management doctor and we worked on a plan for long term (through the healing) pain management and I learned what I can try to cut back on, etc.

    I had minor back symptoms (since my 1993 surgery) that didn't require much until last April. The pain I woke up with on April 15th of last year was horrendous. I went back to my neck surgeon and he basically blew me off. I was in tears telling him of the pain. I had not even cried to him about my neck pain so this had to be bad. He was disinterested. It took a bit of time to find a new surgeon and then he had to go about getting x-rays, CT, MRI, CT myelogram, and discogram. Finally in late November he told me he could do the surgery but it would have to be February 3rd (due to his schedule). I thought I'd not survive the wait. But I got lucky, in the meantime he got a new spine surgeon in his practice (just 2 in that practice) and both did my surgery on 2/3 so I had a unique approach (from the back and from my side). So waiting until February was a blessing in disguise.

    Now, at week 5 post-op it was SO worth it. There are still days where I can't get out of bed because I am so tired or nights when it hurts from trying to be active during the day. But everyday I realize it was worth it in the end. I can see the light at the end of the tunnel.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • I just read your post and my heart goes out to you. You are so young to have to experince pain like you are. I suffered with severe pain,numbness, tingling,etc. and couldn't walk very long/far for about 3 years. Then,like you described, for no reason at all,out of the blue the pain increased to excruciating. My dr. ordered an MRI and told me I would need surgery ASAP just like yours. It was a long week from my appt. to the MRI and then another week for results. I couldn't sit,stand, sleep, walk, or anything at all,even on meds. I don't know how we survive with that kind of pain but somehow we do. You will make it honey! As soon as the dr had my results he scheduled surgery right away for a fusion L2-4. So I'm sure your dr will do the same for you so you don't have to suffer much longer! Please know we understand and there is light at the end of the tunnel! Just hang in there honey! Most importantly, I want you to know I am better off now and would have a fusion/surgery again in a heartbeat! Yes, the recovery is tough, but honey, if you wake up w/o some of the unbearable pain you have now, isn't that worth it? You can't live in this unbearable pain so if you trust this dr let him help you. We are here to support you as you go through this difficult time. Good luck and I'm thinking of you!

    Kathy

  • I'm sorry that you're suffering so much when you're only 24.

    All I can say is ditto to all the wonderful advice that others have written.

    I had fusion surgery nearly 5 months ago, and it was the right decision for me because I don't have major pain any more and can get out and enjoy walking again. Recovery is slow and you need lots of patience.

    Hang in there and trust your doctor.

    Trish











    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • Hi

    Thank you for all your comments, it makes me feel so much better that there is such great support on here!
    I woke up this morning and stood up with my crutches, then I had the worse pain in my right leg i had ever had, i started crying instantly and got back into bed. Then the left leg went exactly the same, i took my meds, had a large dose of morphine and it took 4 hours for the pain to die down enuf to move, for the nexr few hours, the feeling to my inner thighs and between my legs kept intermittantly going. From what I read up on today, i think you may be right about the caudia equina.
    I am trying to hold out until the MRI, but if i get worse again, I am going to ring the hospital and see what they say, hopefully they might be able to fit me in sooner
    Once again thank you
  • I just wanted to wish you the best for your upcoming surgery. Please try to eat something also while taking your meds like yogurt and soup and toast. I know it's hard to do anything but take care of yourself and def go to the ER if the pain is unbearable. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thank goodness for this site!!!!! All the support here will help you get through this. This is the only place I've found where people listen to your problems and get back to you with solutions and ideas on how to cope with the pain and frustration. We've all cried a lot but as they say there is comfort in numbers. Don't give up...you don't have that long to go. Your surgeons seem like they know what to do for you.

    Keep strong...we'll all pray for you. :X
  • Hang in there Nia! Chances are that this surgery will give you at least some relief. You have been through hell (like most of us) and hope is a mainstay.

    If you are having significant numbness and/or bowel/bladder issues, they need to get in there and relieve that in some way.

    Keep us posted, we care! :)))
  • you have such courage,your unbelievable just hang in there day hr min. you have helped me so much with the courage you have shown. i been having a real hard time i,m having my 1st back surgery 3-15-10 i'm kinda of freaking out but i read your post and really puts thing in perspective,i know things will work out for you. i'll be thinking of you
    i cant tell you how much you have helped me.
    john
  • I agree with Charry ,if your pain gets worse and it's intoleable you really need to go to the ER hopefully admitting you, that will speed up the MRI. They can manage your level of pain, donot hesitate. You really need to eat,and I know it hard it's the last thing on your mind. Hang in there.
  • Just seeing this now.
    Everyone has said things I would have said.

    I just want you to know that we are here for you - on good days and not so good days.

    I hope you have a relatively pain controlled weekend. I am also glad your found a surgeon that you seem comfortable with and that is taking you seriously.
  • I agree with all. The only thing I would add is that if you are in excruciating pain, lying still for the MRI could be difficult. It was for me. Be sure to tell your doc/nurse how you are feeling. They are able to medicate you if necessary so that the MRI pictures are clear and accurate.

    Hang in there! You are so couragous and strong! I know this is difficult, we are all here to support you. Because this site is global, there are usually others on here at any given time, day or night!

    Sening you well wishes and prayers for strength and pain relief! Gentle hugs xxxxx Shari
  • Although we share some symptoms I did not progress to the point you are before I had my surgery. I joined the site after I had my surgery scheduled. You will gain a lot of knowledge and support from this site. This site has a lot to offer. I hope you use the other parts besides just the forum. As an example the spine clinic I go to is in a hospital ran by a university. In the lobby of the spine clinic they have a small library. I went in one day as I was waiting on my first post-op appointment, just to kill time. The attendant engaged me in conversation and used this site to show me my procedure and print off pictures for me. I thought that was quite an endorsement of the articles on this site. I have only started two topics and both were answered promptly and with much advice and support. I am 38 and I can relate with many of your feelings, but you are going to find relief and regain control of you life soon. I knew I had problems when professionals kept asking when or what kind of accident I had been involved in(sound familiar?). I had not been in an accident. You can do this, almost 20 positive, supportive replies in three days, should prove this to you. I always write novels instead of replies so i will try to finish soon. I hope you are prepared for post-op. You will need help and you should make the preparations now. If you need anything I think it is obvious there are many here eager to share and lend support, advice and understanding. Life is different after a spinal surgery. That last sentence hold so many meanings, but one of the best if you are realistic is hope.
  • Just checking up on you. I hope your having a good day,I know days are up and down. Hope I'm catching you on a good day,and keep the faith everything going to work out for you.
    Take Care
    John
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