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Looking for some friendly advice...

manaleriemmanalerie Posts: 549
edited 06/11/2012 - 8:19 AM in Back Surgery and Neck Surgery
After my MRI in June, (findings posted below) my PCP told me that I would need surgery. I brought my MRI results to a neurologist, and he says that I don't need surgery. I have an appointment with a neurosurgeon for next month to get his opinion, and I'm considering consulting with an orthopedic surgeon as well. Until then, I'd like to know If anyone has any opinions. My PCP told me I need surgery, and is very adamant I have it done, but he never told me what kind of surgery.

I have discussed this with friends and family, and the consensus seems to be: NO!! DON'T DO IT!!! and WAIT AS LONG AS POSSIBLE!!! If I have spoken to 20 people I know, who have had back surgery, only one said I should do it. I know every situation is different, and they all didn't have the same procedures done, must mostly they have all told me that surgery worsened the situation. I am also worried about the "wait as long as possible" idea, because of stories I've heard about permanent nerve damage, from putting off surgery.

*mind spin here*

Right now, I have REALLY GOOD insurance through my husbands union, backed up with state medical benefits. I don't know how long I will have such an opportunity with this insurance. Jobs change, unions negotiate, and there is even talk of changing insurance at his company... If I'm going to have it done... I feel I need to do it now, while the insurance is still good.

So my question to you:

In your opinion, surgery, or no surgery.
Also, any idea what kind of surgery would be done???

I understand that this is only a personal opinion, and that ultimately it is up to me and my doctors to decide what must be done.

Thanks, Amanda

MRI findings:

The vertebrae are normally aligned. The heights of the vertebral bodies are maintained. Disc desiccation and intervertebral disc space narrowing is present at L4-L5

The conus medullaris is in normal position and demonstrates normal morphology. The cauda equina has a normal appearance.

L3-L4: There is mild bilateral facet hypertrophic degenerative change. Subchondral cysts are seen adjacent to the left facet joint.

L4-L5: There is a diffuse disc bulge with an annular tear. This contacts the exiting right L5 nerve root and causes lateral displacement of the left L5 nerve root. There is mild bilateral foraminal narrowing.

L5-S1: There is a central disc herniation which contacts both exiting S1 nerve roots. There is minimal central canal stenosis.


  • Amanda, what are your symptoms and how is it affecting your life.
    That is what you have to look at more then what the MRI result reads.
    Are you in pain? living on pain meds? Can you go to work, look after yourself properly, clean your home etc. Are you able to walk and shop or are these things limited and painful.

    You need to take this list with you to the NS or OS when you see them. Obviously your PCP knows something that the Radiologist doesnt but either way unless you are in pain or debilitated then I wouldn't jump into surgery.
    Also have you tried other things such as PT or Aqua PT? There are a lot of different therapies available for people like us and I recommend that you at least investigate them.

    Blessings Sara
  • Ever watch a movie where they are playing the game of "chicken" and the star of the movie always says "the hard part about playing chicken, is knowing when to flinch"... Well basically they are saying that you and only you will really know if it is the right time to flinch.

    Of course if you have several doctors who are expressing to you that if you don't have surgery you risk permanent nerve damage or worse... maybe it's time to flinch.

    Go talk to these other doctors and get their take on your condition. Then as Sara was pointing out, look at how much it is effecting you at the moment.

    You can ask 50 people who have had back surgery what they think and all it will do is confuse the heck out of you. The ultimate decision comes down to being yours.

    I understand your concerns when it comes to insurance coverage, but talk to the docs first. You cannot undo spine surgery, there's no "do-overs".

  • Sara and "C" said it all.Now it's up to you and the doc's.
    Good luck with your decision.

  • My take only. My MRI after my first back operation read almost word for word. In my experience and like the other post said ask 50 people you will get close to that many answers.
    How long have you had this condition? I can say only from my experience, and my second and third operations were by one of the top surgeons in spinal reconstructive syrgery. Your problem is unfortunately multi-level and, affects the nerve roots. Your lower spine is and will become more unstable. the area where your problems are now ,affect the bowel and bladder control functions. Just FYI, I am by other peoples, and Doctors comments, a big tough guy with a high tolerance to pain. Coincidentally, I was a state employee with probably one of the best, if not the best insurance coverage in the state. I toughed out the leg pain, back pain ,groin pain, and ate hand fulls of pain meds during that time. When you start wetting yourself, you will seek surgery, it is scary. And, not to burst your bubble, the pain will win, whether it be now or later.
    Do yourself a big favor. Find the best spine specialist you can with your insurance, and I mean specialist. Take his advice. your condition is nothing to take lightly. Incontinence is more often than not irreversable. I was lucky, I was just getting loss of sensation and had no actual damage. Do you want to wear diapers or suffer more pain than you have now? Granted, you will sign a waiver that you understand that surgery entails risks of infection, increased pain/numbness and yes even death.. It is a fact. It is also a fact that you will not get better with non surgical intervention also. So the post about playing chicken is true also, better think about turning the steering wheel. And to reaffirm, I am not an expert by a long shot, just been on the chicken road you're on . Good Luck on your decision.
  • From the sounds of his post EJ has had a bad time of it.
    This does not mean that you will too, so please dont be scared into doing anything you are not ready for.

    Quote "It is also a fact that you will not get better with non surgical intervention also."

    This is not true at all! I have known of people who when they got to the problem early enough were able to improve their lifestyle by simply strenghening the core stability muscles and doing a lot of exercise. No surgery was needed so I think this comment is uncalled for and would scare a lot here.

    Listen to your Drs and get second opinions.

    Blessings to you both

  • Your comments have all been very helpful. Sara, yes I am in a lot of pain. I've been having symptoms, butt/hip/leg pain for quite some time, which became more frequent since last December, along with a "crushing" feeling in my spine whenever I stand up straight or walk. It has been pretty much a constant issue since December. The neurologist prescribed 60mg Kadian 2x a day which had worked wonders till about a week ago, when the pain worsened to where I could hardly move... Its been pretty severe since then. I cannot even do simple household chores any longer.

    I am still waiting for the advice of the neurosurgeon, and I think I may even try going back to PT. The therapists there however seem afraid to even touch me.

    Thanks for all of your advice guys!
  • dilaurodilauro ConnecticutPosts: 9,859

    That is always one of the toughest decisions that have to be made. MRI report findings are just one indication of what spinal disc problems are going on. I wont even attempt to evaluate your MRI report because that should only be left up to trained professionals. A good indicator is the amount of pain you are in and where and how this pain starts. When you have pain going down your leg, starting from the hip/buttock area and its tingling,stabbing/numbing, that is almost always the sign of sciatic problems. Now that generally stems from some inflammation of the spinal nerve root, which can generally be caused by a disc herniation pressing on the nerve root.
    (Which your MRI L5/S1 seems to indicate)
    I am a firm believe in that you try every possible conservative treatment before surgery is considered. But those type of decisions need to be made with your doctor and yourself. I always say hold off surgery until you know there is nothing else to try. The physical and aqua therapy, ultrasound, heat/ice therapy, massage therapy, acupuncture, spinal injections, etc can do a lot in helping control many disc problems.
    Again the most important thing here is discussing all of this with your doctor. When it comes to spinal disc/nerve problems, I tend to go with Neurologists and Neurosurgeons. Ortho's are fine for more of the bone related problems, but when it comes to the spinal column...
    And to me one of the MOST important things about your doctor is having one that you have faith in and trust. That is so important. Too many people seek the 'best' in the field, see them and many times they become just a number. Spinal surgery is NOT rocket science any more. I can't tell you about the number of people I know that went to the 'big' city to find that 'super' specialist, had surgery and were so disappointed that they became lost in the shuffle.
    Good luck and keep on asking questions. The best approach to this is having is much knowledge as possible.
    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
  • dilaurodilauro ConnecticutPosts: 9,859
    "C", always loved that quote. The US Submarine captain when they were aboard the "Red October" when the other Russian sub was heading towards them. (From The Hunt from The Red October")
    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
  • Everyone has given you so much good advice. I think you are doing the right thing by seeing some other NS and an ortho. I had a tear in my L4/L5 and bulge in L3/L4. There are those that think that herniations can heal themselves, but you don't want to risk permanent nerve damage. Sounds like your pain level is really high too.

    I was in your shoes and it is always your ultimate decision to have surgery or not no matter how many doctors say you need it or not. I have DDD and arthritis and I knew mine could not resolve itself, it would only get worse. I had right leg problems that were getting worse. I'd tried PT, shots, decompression, rest, meds, and nothing helped..my MRIs just showed progressive worsening.

    Now that I'm on the other side...1 week postop, my right leg is perfect, but I have left leg numbness that has stayed in the inner and outer thigh. I'm hoping that it's not permanent, but from irritation from the surgery. I have pain in my lower back but expect to while the fusion is taking place. Surgery is tough but if you believe there's no other option and you can't go on the way you are. Make sure you totally believe in your surgeon, when you find the one you stay with. He needs to tell you that he believes he can take care of your herniations and sounds confident. You sure don't want wishy-washy when you do this.

    Good luck with your decision.
  • Amanda,

    One thing that stuck out from your last post, was that up until a week ago your pain was being well controlled with the Kadian. Right now you can hardly move.

    Is it possible that you have done something to irritate your back causing acute pain that may with rest resolve back down to a manageable level again?

  • Ron,

    You win the trivia contest for the week! Very good.

  • One of my biggest fears, was "waiting too long" insurance aside, I worry of the idea of permanent damage.

    When I first came to this site, I had it in my head that I was going to hold off on surgery as long as possible. Guess I was just second guessing my decision.

    After listening to all of you, I now feel a bit more comfortable with my decision to wait it out, and try all other non-surgical options first.

    On one last note, I woke up this morning without excruciating pain, which is great!!! Only a slight pinch, and no trouble walking or standing.

    Thank you everyone, for your wonderful advise! We're getting ready for our day of fishing at the lake. Hope everyone has a wonderful, pain free day!!

  • I LOVE your name!!! Gosh you look awefully young for all of this!

    I think everything I would have said has been said already and in lieu of your decision to wait I would only add to keep yourself aware of symptoms that may be very serious and educate yourself on central disc herniations.

    The poster that was talking about wearing diapers is talking about Cauda Equina Syndrome which can be gradual so I would also google that just to be aware of small changes or even the slightest of changes that may happen NOT will happen.

    The PT will not touch you because they don't want to do anything strenuous that may make it worse. Maybe ask them about some stretching if ok for your problems. You probably don't want to lift anything to not aggrevate your situation.

    Please don't let insurance issues rush your decision it's not worth it especially a fusion, hopefully they can just go in clean up and decompress if your quality of life significantly deteriorates in the future. Hopefully your body will recover by itself but you'll know it if that day ever comes. Just again be aware I tried to be a "hero" so to speak and muck through but should not have waited so long(I'm not in diapers or anything like that though thank God), again that's just another story if I'm 1 of the 50 you were to ask. I had central disc herniation at L5-S1.

    However when the time came I knew it was time I could not do a thing!!! At which point the disc was gone at L5-S1. I've probably said that a 100 times on the old boards but anyways the best advice being in kind of the same boat is not to lift heavy things or do strenuous activities PERIOD.

    Good luck glad to hear it's gottten better!!!!!Have fun fishing. I love lakes!!!

  • I had another post about my pain becoming severe. It just happened progressively throughout the day. I noticed the pain around 5pm, and by the time I had finished cooking dinner, It was unbearable. I couldn't move the slightest without severe pain.

    I had done nothing out of ordinary. My son, who is 2 years old, has had a major role in a lot of my pain I believe. He is super tall for his age, and must weigh 34-40 thousand pounds lol!!! I have made all sorts of adjustments as to picking him up. I pretty much just don't anymore!! j/k

    I think my problem started (my original problem that is) mostly from me bending over to put him in his crib. He would throw a mini tantrum, right at the moment when I was bent over with him in my arms. I always felt that twinge, or pinch, or all of the above, right at that time. I have since adjusted to putting the side of the crib down, and instead of bending over and laying him down, I place him in the crib in a stand position, and he lays down himself.

    Now. My recent pain, seems to have been brought on by NOTHING. However, looking back now, I think this may also have been caused by my son. (poor little guy is taking a lot of blame here huh?) I don't know if it was that morning, or the night before (I'm thinking it was the night before) I was sitting on the couch, with my upper body turned to the left so I was facing him. When he figured out that it was bed time, he threw his body at me, or lunged, and fell into my left shoulder. I instantly felt some pain in my left hip (don't usually have pain in my left hip, mostly in the right) It wasn't a lot of pain, but there was also a twinge in my low back, that made me cringe and squeal out "OWWW". I remember telling him that he had to "be easy with mommy" I believe it was the following afternoon, all of this severe crap began.

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