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new to site... surgery in February... totally terrified!

Hello all, I'm new to the site and have tried to spend some time reading through some of the information, but even with a life time of back issues some of this is so over my head!

I'm a 30 y/o female with idiopathic scoliosis that was discovered freshman year of high school. My parents were advised not to do anything, because the curve wasn't significant enough to need attention.

In my early 20's I developed this left lower lumbar pain (near where your underwear line is). The pain was episodic, but when it was here it would last a few days and be awful! Then it would go away and its crazy how quickly I'd forget about it, until it came back. I dealt with this for years.

In January of 2013 two weeks before a trip to New York the pain came and I remember hoping it left before our trip. The trip was the worst experience! The pain was so bad. So all of 2013 I did all sorts of massages, stretches, injections (SI and facet) I had the nerve burned in my low back twice, I tried every opiate possible and nothing even made a slight difference in the pain.

In October I was diagnosed with an Autoimmune Disease and the Rheumatologist referred me to a Neurosurgeon for my back issues and thought it was odd that after all these years and many Ortho doctors I had never seen a Neurosurgeon. I had a CT Myelogram that showed "moderate Scoliosis" and some nerve issues/disc issues.

I saw the Neurosurgeon again (after the CT Myelogram and updated xrays) and he suggested a fusion. Which immediately terrified me and made me think about every horror story you've ever heard about back surgery. He explained that the left lower lumbar pain I was having was from my sacrum. That when I was a fetus my sacrum did not fuse entirely because it was attempting to create another space for a vertebrae and then realized it doesn't go there, but then never fused. So I have a complete "crack" line through my sacrum and the Scoliosis starts immediately coming out of my pelvis and his suggestion is that the curve is 25 degrees. The radiologist that read the films at one place labeled it a 38 degree curve.

Anyway, the Neurosurgeon said I needed to do a fusion. That I've exhausted all conservative treatment options and he thinks this is my last option (very, very nice not pushy doctor). He wants to fuse from the T10 through my pelvis. Which I was like WHAT??!! The curve doesn't even go that high, but apparently the T10 is a strong bone and used as an anchor bone for fusion to prevent breakdown on non-fused areas. Then they will go through my pelvis and fuse the separated sacrum.

My pain management doctor is completely against this. Which creates worry and frustration.

But at this point I live in constant pain everyday and it's a struggle as a young 30 y/o woman to do anything. So now this is set for February and I found this site hoping to hear encouraging stories or to find someone that really understands.

I've heard all the negative which doesn't help my anxiety and am just hoping to find some encouraging words or someone that can say I know how hard this is.

Thank you so much for reading this.
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Comments

  • My pain management doc was against me getting a fusion too. In his opinion my imaging didn't show a bad enough issue to warrant it. But I ended up making the right decision (and I feel awesome), as my surgeon said my discs were considerably worse than the imaging showed. That is a huge fusion your NS is recommending. I would probably get another opinion before making a decision.
    10/28/13 - ALIF, PSF, decompression at L4/L5 and L5/S1
  • texasgirlttexasgirl Posts: 21
    edited 01/14/2014 - 3:53 AM
    Thank you for the quick response Steve.

    My pain management doctor has been with me for over a year and has advised against it because he didn't think the testing warranted the surgery. But he also continues to try and tell me that I've had some relief from all his injections, which isn't true. And he's literally tried me on every opiate possible and nothing has worked. Which is frustrating and I don't really want to rely on pain medication (that doesn't work anyway) and destroy my organs.

    I'm going tomorrow for a second opinion, but have everything set up for the surgery in February. From everything I've read and heard the person doing it is highly recommended and on this date another Neurosurgeon in that practice will be operating with him. So two Neurosurgeons will be in there.

    And I know that the pain management doctor isn't a surgeon and it's putting him out of business if everyone where to run out and have surgery and be fixed. He'd then have no pain to manage, but I feel like after a year and he hasn't found one thing thats helped me I've kind of lost faith in him. And according to the images and the Neurosurgeon he doesn't understand why I'm getting SI injections and facet injections and the painful burning the nerve procedure when you can clearly see the non fused sacrum and I'm being injected in areas no where near that area.

    I did ask several questions about going so high and he spent some time explaining how when you stop the fusion at a lower level it can deteriorate levels above or below and put too much pressure on them. That makes sense, but freaks me out!

    At first I wasn't sure if a fusion was the best idea. Over the years several ortho's have suggested it and several pain management doctors have advised against it, but now it's too the point where nothing helps and I suffer every day so I feel like I don't have much to lose besides adding more pain if something goes wrong, but at this point I know the current pain won't go away.
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  • LizLiz Posts: 8,221
    Please take the time to read this post and refer to it when you have questions

    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and growing.
    Here are just some of the highlights that are available as tabs on the main Spine-Health menu bar

    Spine-Health Main Menu Tabs

    Conditions Detailed medical libraries of articles and videos that address almost every spinal condition.
    Treatment List of treatments to the conditions identified by Spine-Health.
    Wellness Section contains articles, tips and videos to help patients after surgery and also to help people avoid surgery.
    Spine-Health Forums These are the forums you will be using
    Find A Doctor This provides with a method to search for doctors in various locations.
    Doctor Advice Health Center The Resource tab, has many important features. You can browse various doctor advice on given spinal situations, you can browse clinical trials and view a comprehensive glossary..
    Health Videos Index to all Spine-Health Videos



    As a bonus, Spine-Health provides these patient forums. Here you can meet thousands of people who understand and can relate to your situation. You will soon become part of the Spiney family[/u] who provide comfort and the advantages of a support system. You are now part of this family that is approximately 27,00 international members and growing daily.

    IMPORTANT

    - It is very important to understand the Forum Rules to make sure all of your posts[u] do not violate any of the rules.[/u]

    - All new members must read our FAQ in order to understand the layout of the forums, how to navigate through the forums, helpful terms, how to make effective threads and posts, plus a link index to many of the important medical forums and key medical articles on Spine-Health Forum FAQ

    I am positive any member, new or old will find this Chroinc Pain - Step by Step thread very valuable.

    Here are some links that all new members need to review to create effective threads and more

    Read before you post
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    dilauro

    tamtam

    Liz

    Sandi

    JellyHall




    ********************************************************************************************

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • on my nervesoon my nerves Posts: 116
    edited 01/14/2014 - 4:11 AM
    Texasgirl, I understand your concern and frustration. My PM Dr that I saw for almost 18 months was totally against me seeing a surgeon but I was in the same boat as you. Nothing he did worked and it was getting more frustrating and the co pays were killing me.
    I'm scheduled for a ACDF in February and hopefully that will delay or even make things better in my legs/feet that I can forget about having a lumbar fusion as well.
    Please let us know what the Dr you are seeing tomorrow says. I have the utmost faith in my surgeon and I've decided to forgo a second opinion. Not only because I'm extremely comfortable with him and his reputation but I'm emotionally and physically spent and don't have it in me to tell yet someone else my story.
    Herniation of l5 S1 l4 , DDD , microdisectomy in June 2013 and re herniation in September
    Cervical herniation at C5-7 Jan 2014 with impingement of spinal cord. 2 level cervical fusion Feb. 2014 and 2 level lumbar fusion in April 2014
  • I totally understand! I met the current NS, explained my story, he spent 1.5 hours with me (which I'm sure delayed his schedule and he never seemed irritated or like he needed to hurry). After years of seeing every kind of doctor I left there (scared about the surgery), but comfortable and confident that he knew what he was talking about. Several people had high recommendations of him, his staff was considerate and understanding (I also work in the medical field and understand the difference it makes). He saw me a second time (this time my husband was able to attend) and again spent 1.5 hours with us and answered my same questions over and over. Answered my husbands questioned. Didn't seem pushy, said if you aren't ready or comfortable then wait. Very matter of factually said I believe this is the issue and I'm confident I can do my best to resolve it, but obviously nothing is 100% certain.

    I'm only going to this second opinion tomorrow at the request of my PM (also someone he suggested) which I've battled attending this appointment only b/c I'm already so anxious and nervous if he says anything contrasting I'll freak out. Or what if he agrees and he seems great? So many fears! And like you I don't want to tell my story again. And hear this persons opinion so close to the date and have yet another opinion running through me. That appointment is tomorrow and all I can think about today is if I should really go or not.

    Like I said in the beginning as much back pain and issues as I've dealt with I think I'd be an expert! But I'm not sure what an ACDF is? But I'm sorry for the pain you are experiencing and would like to know more about what you are facing in February?
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  • SteveTSSteveT Posts: 178
    edited 01/14/2014 - 5:15 AM
    Feeling comfortable with your surgeon really is so important. I went with an orthopedic spine surgeon and he was the 4th surgeon I saw. With me being only 24 some surgeons wanted nothing to do with me or flat out said surgery would be a mistake. The last surgeon I saw sounds similar to your experience - he spent a lot of time with me, answered all of my questions, and wasn't pushy at all. It always helps though to have another set of eyes look at things.
    10/28/13 - ALIF, PSF, decompression at L4/L5 and L5/S1
  • I know! It's so hard! You see so many people and hear so many opinions then have to decide which you feel most comfortable and sure of. It's so scary! And now I'm panicking hoping that I'm doing the right thing. Hoping I'm doing all the "fun" things I'd want to before surgery that I may never be able to do again. And work full time. It's just so much.

    But I did like that he wasn't pushy. He was like I think this is best, but your choice. And was nice when I started crying :/

    So hopefully having a second opinion tomorrow isn't a bad idea!
  • Hi! I also saw a Pain Managment doctor for a couple years who advised against surgery. But what I realized was that his job was to manage pain not to fix pain. They believe that all pain can be managed and well it can't...in my opinion if you have surgery to fix the pain then you will no longer (hopefully) need to go to pain management any longer and those pain management doctors lose a patient. So in their best interest they would advise against surgery to fix the pain. Just my thoughts! I really liked my PM doctor, but I just want a permanent fix, I will have ACDF surgery in April.
  • If you'd like, please read my cover page and you will see that I've been suffering with l5-s1 herniation for two years. I went to my surgeon for a pre op visit on 12/31 for a lumbar fusion and I told him that I was getting burning and tingling in my fingers and hands that had just started. To be certain he was operating on the correct problem he ordered an MRI of my brain and cervical spine. It come to be that I also have herniations at C5-7 that are severely impinging my spinal cord. He said that my spinal cord issue is more serious than my lumbar at this point because I am risking paralysis if I were to fall or have a car accident etc and that we should handle that first. He also said that it is possible that my lower body pains may be coming from my cervical area. I'm crossing my fingers that I can get by without the lumbar fusion but trying not to get my hopes up. It will be 6-8 after surgery until we will get an idea if it helped my legs.
    P.S.
    ACDF is anterior cervical discectomy fusion.


    Amy
    Herniation of l5 S1 l4 , DDD , microdisectomy in June 2013 and re herniation in September
    Cervical herniation at C5-7 Jan 2014 with impingement of spinal cord. 2 level cervical fusion Feb. 2014 and 2 level lumbar fusion in April 2014
  • I agree mjlindsley about PM. If we all go and find a permanent fix then they have no jobs to do. He's a great doctor and I know he feels bad that he's unable to find me a reasonable "fix" for my pain. His last suggestion was that sometimes you just have to learn to live w chronic pain and that they have behavioral health specialist that can help text coping methods for how to live life with chronic pain! Which I understand where he's coming from, but thats not what a young 30 y/o girl wants to hear! I can't even enjoy my time away from work with my husband even something as simple as walking the dogs or shopping because the pain is too much I'd prefer to lay in bed. And then thats hard on my spouse who's a "go getter" and wants to be moving around and again it's not the same as seeing a broken leg so its easy for someone that doesn't experience chronic pain to "forget" the burden it is. I just want my life back!

    on my nerves, thank you for sharing your story with me. I'm hoping to educate myself more on all of these concerns even though everything seems so overwhelming!
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