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    Old 11-23-2014, 05:45 AM   #1
    littlebean
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    newbie here with some questions...

    hello all- thanks for this board! I've been reading for months.
    quick background.
    I have grade 2 spondylolithesis (sp?) at L5-S1, with severe foraminal narrowing on the right, and moderate on the left. I have spodylolisis bilaterally at that level as well. the spondylolithesis is unstable. I have tried managing this conservatively for the past year and a half with PT, injections, and tramadol as needed. my last injection failed. my PM dr. took a closer look at the MRI from 2/13 on Friday, and decided I needed another asap. he told me I have such a severe curve to my spine, that L5 and S1 are virtually bone on bone, trapping nerves. fusion was mentioned.
    current symptoms. excruciating back pain, radiating into legs, down to feet. weakness and tingling in legs and feet. Thursday night I had a new symptom - my legs felt weighted down to the point I was having difficulty moving. the pain was a 9/10.
    so, I have a 2 year old. I feel if I opt for fusion I will be robbing him of a normal childhood. however, I've been told this nerve damage could worsen and become permanent. advice please?

     
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    Old 11-23-2014, 10:25 PM   #2
    teteri66
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    Re: newbie here with some questions...

    Told you that you needed a new MRI ASAP or another injection?

    At this point in time, the only way western medicine can successfully deal with a spondylolisthesis that is active is through a fusion surgery. You can go for as long as you can stand the pain from the symptoms, but there will come a point where you will need to have surgery.

    If you have not seen a spine specialist, now is the time to find one. The last thing you would want is to end up in the ER and have to accept whoever is on call. With a condition like yours, you should have a surgeon lined up that you could get in to see quickly if you suddenly develop bowel or bladder issues, foot drop or similar things that would be considered an emergency.

    I would encourage you to take your time in finding the very best fellowship-trained orthopedic spine or neurosurgeon that is available to you. Don't let the first person you meet with rush you into surgery. It is very important to choose a surgeon that is experienced, well-trained and skilled and someone you feel you can trust. This selection will be the most important decision you will make after the decision to have the surgery.

    Only you know the extent your symptoms are having an impact on your day to day life. You do not want to rush into surgery, but you can also wait too long.

    Regarding your comment about your child: there is never a convenient time to have surgery, but you need to know that your chances of doing anything but getting worse and worse over time without surgery are very slim. Generally speaking, the longer nerves are left compressed, the greater the chance of some permanent nerve damage.

     
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    Old 11-24-2014, 03:48 AM   #3
    littlebean
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    Re: newbie here with some questions...

    thank you for your response. you've given me the same answer as my family members who are nurses. I guess I'm just in denial. this pm dr. told me I had plenty of options before I had to even talk about fusion. now it sounds like that's my only option.
    another MRI. He came back from viewing my old one, and said "I remember your back now" (yikes - do you want a PM dr. to say that to you?) he then explained how L5 and S1 are virtually bone on bone. then he really said something that made me so sad. "avoid picking up your son, as much as you can. you really shouldn't with the shape you're in.". I'm 110 lbs maybe, and my son is a giant - almost 40 lbs, and tall.
    I am being seen by a fellowship trained spinal surgeon. he's actually the head of the spine center at the sports medicine place I go to. he has a stellar resume, and from patient reviews he really is worth the wait. and excellent at what he does. I was most amazed at how personable he was in every encounter we've had. he's been voted best dr. since 2006.
    what's the timeline usually like? just trying to get an idea. once a dr. states fusion and a patient agrees, is the surgery usually booked months out, or like next week? (I know it probably depends upon schdduling and all that.)
    sorry to be all over the place. I never thought at 36 I'd have to consider something like this. I thought I'd be able to make it to my 50's at least.

    I guess I'm kind of depressed about all of this. thanks again.

     
    Old 11-24-2014, 06:10 AM   #4
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    Re: newbie here with some questions...

    I have had two lumbar fusions, the first time was in 2008 at L4-L5. I felt much as you do...that fusion sounded so drastic and I wasn't "that bad." I kept thinking there must be some other options..and so I went from doctor to doctor to doctor trying to find someone who could help me with a less invasive procedure. The first doctor I went to turned out to be right. He told me that I could decide the timing of the surgery...I could wait as long as I wanted, but, ultimately, I would need to have a fusion.

    I think I made it almost four years before I realized my life had become so small. I could barely leave the house because I could only stand to walk maybe 50 ft. before I would have to sit down. I kept a stool in the kitchen because I could not stand long enough to chop an onion...so I would do a little bit, then sit for a bit, then do a bit more. It took a long time at that rate to cook anything.

    When I finally had the surgery, everything went well, I fused quickly and it was considered a successful procedure, but it did not resolve my symptoms. My sciatic pain was just as bad as prior to surgery. Eventually I had the second fusion and it was discovered what had been the primary pain generator all along. So it was a long journey but I am doing well now.

    Regarding a timeline, there are so many variables...I have heard of people waiting several months to get an opening. My surgeon usually has about a 3-4 week wait.

    Even though you like this doctor, I would encourage you to get at least another opinion to make sure that fusion is really your only option.

     
    Old 11-29-2014, 07:00 AM   #5
    littlebean
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    Re: newbie here with some questions...

    well, I guess I'm to the point where I have to consider surgery. I have asked a friend of mine who is also my PT, for neurosurgeon recommendations. so I will be seeking a second opinion.
    I ended up back at my pcp yesterday. I probably should have gone to the er. pain is 9/10. it must've been all the holiday prep - cooking on my feet. two days of pain followed. he gave me some meds to get through the weekend ( I won't take narcotics due to being primary caregiver to my two year old). he was very frank with me and recommended I consider fusion due to the fact my quality of life has diminished so drastically. I listened. he was reviewing the notes from my PM dr., and kept asking about discs. no one has mentioned anything to me about discs. so now I have more questions for them.
    I can't believe how fast this has taken my life from me. I apologize for all the rambling. thank you for listening and all of your advice. (mri is scheduled for Sunday)

     
    Old 12-02-2014, 12:11 PM   #6
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    Re: newbie here with some questions...

    I wouldn't wait too long for the surgeon recommendation. If you are at the point where you are considering going to the ER because of the pain, that's pretty serious. I assume that the injections you're talking about were steroids to combat the inflammation and try to address the pain. If so, and those and other conservative measures have stopped working, and you refuse narcotic pain medication there isn't a lot more to be done other than surgery.

    If you go to the ER in the shape you're in they will likely suggest surgery with whomever is on-call. In my experience, surgeons generally all believe they are the best but of course that isn't true. There are several stories on this board of people who have had surgeries from the "on-call" surgeon and have had problems so I wouldn't recommend that.

    Having a fusion surgery won't necessarily alter your son's childhood at all outside of the recovery time. You may have to make accommodations after the surgery, and you may not. I always like to bring up Peyton Manning the quarterback for the Denver Broncos. He had a cervical fusion (which arguably has the potential to be more debilitating than the lumbar). 18 months after surgery he was back to playing at the same (or possibly even a higher) level than before the surgery. There are plenty of good reasons to have hope for a positive outcome after surgery. Also, I would argue that in the shape you're currently in, you won't be able to interact with your son the way you'd like either.

    As to the timing, there are many factors. Most surgeons I talked to are scheduled a couple of months in advance. They may have some wiggle room for people that are in bad shape however. The ones I talked to saved some spots for particularly debilitated patients so you'll just have to work that out with the surgeon you ultimately pick.

    Good luck and let us know how you get on...

     
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    Old 12-02-2014, 12:24 PM   #7
    littlebean
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    Re: newbie here with some questions...

    Thanks ChuckStr. I needed to hear what you stated. I have been back to PM today, and have another appointment on Monday. (with my PM dr.) The PM dr. I saw today gave me a short course of Prednisone, mild pain relievers, a prescription for PT with TENS (what's that?), and also a prescription for a brace.

    I feel like a fool for being so stubborn about surgery up until this point. I've read many success stories of people my age with similar issues, being up and moving 2 months post op. I guess I'm just too much of a control freak to give up total control.

    I have faced reality, and stayed away from the ER for the exact reason you mention. I just got off of the phone with my PCP who wants to refer me out to a neurosurgeon, with a recommendation for surgery. I requested we wait until after my appointment on Monday just to see how that goes.

    My life has gone from full throttle three weeks ago, to stopped. I need to do something and fast. I'm tired of the band aid approach. I have to be a better mom. This isn't working.

    The most recent MRI showed major swelling of the marrow at L5, compressing the thecal sac. That's what the prednisone is for. I think that means my spondylolisis is active?

    Thanks again everyone for your advice. you are a wonderful bunch to listen and offer advice and encouragement.

     
    Old 12-03-2014, 10:32 AM   #8
    teteri66
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    Re: newbie here with some questions...

    What happened at your appointment on Monday?

    I wrote a post earlier, spurred by some of Chuck's comments and your response, but I do not know what happened to it. Obviously isn't here!

    I just wanted to mention that you will do better with spine surgery if you adjust your thinking a bit. When I see someone use the word "fix" in the same paragraph as back surgery, it makes me nervous. For anyone contemplating spine surgery it is important to understand that spine surgery is primarily done for a few reasons: to decompress spinal nerves and create more space in the neuro foramen and central canal, and to stabilize the spine if it has become unstable due to degenerative disc disease, spondylolisthesis, arthritis, accident or injury, etc. it is never done because the patient cannot stand the pain any longer!

    Spine surgery is different from other surgeries in that it does not return the person to the previous state prior to injury or onset of pain. One is never "the same" after surgery...in other words, one does not come out feeling he/she has a "new back" or even the one they were born with.

    Certainly most people experience a reduction in pain, and are ultimately happy they proceeded with the surgery. But those that enter into it with unrealistic expectations can be disappointed. It is never a "quick fix." It will require a fairly lengthy recovery period, and to be successful, it helps to faithfully follow the doctor's instructions.

     
    Old 12-03-2014, 09:39 PM   #9
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    Re: newbie here with some questions...

    Yes, Teteri66 brings up a good point. Spine surgery isn't a quick fix and possibly won't be a "fix" at all, possibly more of a "don't get any worse". Even Manning's success story comes with a reduction in arm strength that leads to a bit of flutter in his passes that wasn't there before the surgery. Fortunately, he has learned to compensate for that... and that's what people do I think. They adjust to the new normal and as Teteri66 said, most people who undergo fusion surgery generally like that normal better than what they came from.

    TENS - Transcutaneous electrical nerve stimulation. Basically the idea is to provide electric stimulation to your nerves by applying a current to leads placed on your skin. The idea behind this is to interrupt the pain signals that are travelling down the nerves and thus reduce the pain. That sounds hokey, but I did seem to get some benefit from it. This is different than e-stim for stimulating muscles that are weak or atrophied due to disuse or whatever although the PT I had, used both modalities.

     
    Old 12-04-2014, 03:53 AM   #10
    littlebean
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    Re: newbie here with some questions...

    thank you both, again.
    I'm not looking at surgery as a quick fix by any means. my thinking is that this has been getting progressively worse since I first sought treatment in January of 2013. conservative treatment has failed me. I am now incapable of doing pretty much anything. I have a desk job and had to leave work yesterday after 3 hours. even with getting up and moving around, the pain medicine wasn't working.
    I'm tired of throwing bandaids on it. even if surgery reduces my ROM significantly, it has to be better than where I am right now. I'm terrified of my legs going out again.
    I know it's a long road to recovery, with no guarantees. right now is a good time for us as a family, as my husband is on winter layoff from his job until mid April. so he would be able to provide care for our son, and assist me. surgery has the potential, in the long run, to stop this course of nowhere fast I'm on, right?
    were you both eventually able to return to close to normal functioning?

    my appointment with MY PM dr. isn't until 12/8. he better be ready for me. I have a ton of questions.

    the PM doc who I saw in his practice confused me when he told me I have severe bone marrow swelling at the pars. he said if i didn't severely reduce my activities, than I was facing the potential of that bone breaking and my spondy (slip) moving more. I thought I already had spondylolisis. (fracture in the pars)

    I get so frustrated with myself at these appointments because every one of these doctors has thrown some new issue at me, and I'm never quick enough to ask the questions then and there. and we get what, all of 5 minutes with them?

    thanks for the advice on the tens. the pt office is right down the road. I'll be calling today to book.

     
    Old 12-04-2014, 06:30 AM   #11
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    Re: newbie here with some questions...

    Sounds like you are ready for surgery...and the timing is good for your family. When do you see the spine surgeon?

    I think I waited too long to have my first surgery for spondy at L4-L5. In hindsight, I wish I had done it at least a year earlier!

     
    Old 12-04-2014, 07:54 AM   #12
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    Re: newbie here with some questions...

    I don't have an appointment yet. the pain management doctor is managing my care right now at the sports medicine place I go to. he has to discharge me back to the ortho with a reccommended plan of care before I go back to him. (at least that's what the ortho told me last time I saw him). I did call and book an appointment with a neurosurgeon for 1/8 for a second opinion. I'm also on a cancellation list.
    things can't move fast enough for me at this point. thanks for all your advice and listening to me whine.

     
    Old 12-04-2014, 09:52 AM   #13
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    Re: newbie here with some questions...

    Offices are slow this time of year, what with all the holidays. I had two surgeries in Jan., the week after New Year's. It made walking outside almost impossible, what with all the ice and snow where I live. My third surgery in June was much better in that regard! But we do it when we need it, even though it is technically elective surgery.

    Insurance carriers are getting more picky about paying for fusions. This is something you may want to discuss with your doctor since I think you said you did not have any of the steroid injections, which are often a "first step."

    Also depending on how the neurosurgeon wants to do the surgery, you may want to get an opinion from an ortho spine surgeon as well.

     
    Old 12-04-2014, 10:19 AM   #14
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    Re: newbie here with some questions...

    I have had 3 sets of injections. April 2013 interlaminar (?) injection. October 2013 facet injection. and then I kept putting off the next one, and waited too long, until 10/29/14, when I had a medial branch block. after that set I was in terrible pain. fell twice - legs just gave out. once I was holding my son, thankfully my husband was there and caught us. it was then that I knew this couldn't go on. I've done two series of pt so far, and start back up again 12/19.

    I live in Massachusetts, and know what you mean about the snow and ice! we had our first couple of inches of snow the other day and I was scared to go out in it. I survived though

    do you know if doctors usually give copies of MRI reports? or do we have to request them?

     
    Old 12-04-2014, 02:31 PM   #15
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    Re: newbie here with some questions...

    You should get into the habit of requesting a copy of the MRI and the report at the time of service. You can get it later, but it is easier and saves time if you request it at the beginning of your exam.

    There is no hard and fast rule as to whether you ask for or are given the report. I have been in both situations. A few years ago, they never offered the report to a patient, but now it is becoming more common...but it still depends what part of the country you live in and the doctors you see.

    With a clear spondylolisthesis, there should not be an issue with getting coverage for a fusion.

     
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