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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 - 2:53 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.
  • LizLiz Posts: 7,883
    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
    Tips for Newcomers
    Understanding the rules

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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 - 3:11 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?
  • SteveTSSteveT Posts: 178
    edited 01/14/2014 - 4:15 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!
  • It is hard, I'm also just 31 yrs old and people say "you are to young to be having spine surgery", well I feel that I'm to young to live in this pain everyday for the next 60 yrs so why wait for it to just get worse. I am in the same boat with my husband! While I know he feels bad, he forgets that I'm hurting! He has been a great help though, we have a 6 and 4 yr old and he does most the cooking and cleaning! I owe him lots after this is all said and done! I have a herniated disc C5-6, I went undiagnosedfor about 4 yrs, I think my husband, as well as others, thought I was making up or exaggerating the pain.
    I'm so glad I've found this site, I've come across all sorts of things for my preparation for surgery and I helps hearing other people's experiences. Keep us posted...
  • texasgirlttexasgirl Posts: 21
    edited 01/14/2014 - 10:50 AM
    Thank you! Not that I'm happy for your situation, but it's comforting to know I'm not alone! But I completely agree EVERYONE has an opinion, but doesn't understand what this pain is like. It's all I can do to drag myself from bed to come to work everyday. Then when I get home I have no energy to cook/clean. Then on the weekends when I should be out enjoying life I'd prefer to lay in bed and find some sort of comfortable position. If possible. I was so terrified to have this surgery, but now I feel like it may be my only option and I'm more terrified of how to cope if it didn't touch this pain!

    I will certainly let you know how the second opinion goes tomorrow... if I go... I'm still going back and forth about that. It's not the best time for me to miss work for that appointment tomorrow and then whatever his opinion is will create new anxieties in me.

    But I appreciate the support.
  • Thank you again for everyone that commented yesterday with kind words. Like I mentioned I went for a second opinion appointment today. Which knowing the type of highly anxious person I am I am still unsure why I'd do that.

    This NS knows the current NS I'm scheduled to have surgery with. He spoke highly of him (which is to be expected that he wouldn't talk poorly of another physician) however he said he noticed on my MRI report from 2010 that I had something called "fatty thallium"?? That all NS are trained to look for and that he generally notices it more than others (again I don't know if that was an attempt to compliment himself), but he specifically said he saw that on my 2010 MRI report because I remember comparable words on my 12/2013 Myelogram report (when I googled each thing!) and he said that CAN be indicative that it's a tethered spinal cord which isn't common, but could be the issue. He said generally patients w bladder issues likely have this issue. Which I don't have any bladder issues. So he said that if they do the fusion and it was a tethered spinal cord that that would not resolve the issue/pain.

    His suggestion to me if I was his patient (and not a second opinion) would be to have another MRI and some uro diagnostic testing (which he said was unpleasant) to try and more determine if it could be a tethered spinal cord. Then if it was they would do surgery to correct that which is the same down time as the fusion, but less pain for recovery. And if that wasn't the solution I'd likely then still be facing the fusion after that.

    So now I'm confused :( a tethered spinal cord wasn't even a thought on my radar and now I have to decide if I want to postpone all my set plans to entertain the idea that it could be a tethered spinal cord and do all these un fun (and expensive) tests to determine?


    Then if it was maybe that I'd have a big surgery, but if that didn't resolve it I'd have to have another big surgery (to then do the fusion) which I don't have that kind of time w a full time job.

    So now I'm just more confused :(
  • SteveTSSteveT Posts: 178
    edited 01/15/2014 - 10:55 AM
    I'd call the surgeon you have your fusion scheduled with and discuss with him. Most surgeons these days have no problem with their patients getting second opinions, so it would be worth discussing in my opinion.
    10/28/13 - ALIF, PSF, decompression at L4/L5 and L5/S1
  • Exactly what I was thinking! But by the time I got out of there (it took forever) my current NS office was closed. So I will call in the morning. But after reading online and looking up information on tethered spinal cords I meet none of the symptoms besides this "fatty thallium" thing that was noticed. Otherwise I have no other issues that would suggest it. So I'm not sure if this NS is just super conservative and wants to cover all his bases, but I'm like I don't like that you've tossed more on pile and that wasn't even on my radar :(
  • Hi
    You can always go for a third opinion as well.
    I did and when two of the three surgeons suggested the exact same surgical procedure I knew I was doing the right thing for my spinal problems.
    Take care and God bless
    Rose



  • SarahLindeauSarahLindeau Posts: 766
    edited 01/16/2014 - 2:54 AM
    Hi Texasgirl

    My sister's daughter had tethered cord surgery about a year and a half ago. Basically, her tethered cord was a mild form of spina bifida that was caused in utero when her spine did not close properly, and part of the spinal cord was trapped. She toe-walked when she was learning to walk, which is also a symptom. I would definitely advise you to do all the diagnostic testing to rule out tethered cord. If it is NOT determined to be your issue, then definitely go through with the fusion. But I would let them do the testing first. If tethered cord IS your issue, a very simple surgery can fix it. Especially since you seem to have a congenital sacrum issue - I would tell you to at least get it checked out. They'll do an MRI with dye, I think, and a bladder test, all of which would be pretty straightforward. My niece also did NOT have any bladder issues prior to her surgery, but was still diagnosed with TC. She recovered beautifully and now her and I have a special bond, each having had spinal surgery. We call her scar a 'caterpillar' and she is proud of it and asks to see my incisions to compare. Best of luck to you- whatever you choose.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • In my opinion I'd go through all the testing as well. In the end all the testing would be your best chance at one surgery vs two. Best of luck to you.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
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