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I've been told I'm inoperable....

caitycccaityc Posts: 268
edited 06/11/2012 - 8:33 AM in Back Surgery and Neck Surgery
I have been a member of this board for about a year and a half. I pop in and out occassionally as I need the love and support you all offer here.

I have been told in the past to lose weight for my fusion by one surgeon. After an insurance change, I was told by a new surgeon to try all conservative treatments first. I got an epidural that failed. Now a third surgeon (because we moved to AZ) has told me that because I have degenerative disk disease, surgery won't help me. At L5 S1 I am completely collapsed, and have a minimul bulge at L1 L2. I thot fusions were for people exactly like me that have collapsed disks, and live in daily pain. :''( :crying:

I am so discouraged! Do I see a fourth surgeon now, or just accept my fate?

When I walked out of his office yesterday I felt like I had been handed a death sentence. He explained to me that both prior surgeons must have also known I was inoperable, and thats why they didn't operate. They led me on with weight loss talk and concervative treatment talk. He said the bottom line is, as a surgeon, if you see something that can be fixed, you fix it. If it can't be fixed, you don't. He told me that I was not that big (bless his heart) and that he does surgery on patients my size and bigger all the time.

I just don't know what to do. Thank you all for listening. It is so appreciated.

Caity
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Comments

  • That is discouraging news, particularly since the surgeon sounds like he was really leveling with you.

    It may just be the way he was trained. If I were you, I would get a new opinion.

    The first surgeon I went to (the middle of Jan.) told me to lose 30 pounds and come back to see him April 1st. At that point I could barely move, so of course the only way that was going to happen was if he wired my jaw shut! I had consultations with seven specialists after him and no one else mentioned weight to me. Several times I brought it up and it was immediately dismissed. I had my pick of those seven surgeons. Any would have operated on me.

    And yes, they operate all the time on patients with DDD...at least from what I hear!

    from the Spine Health website under DDD:

    "While it is a major surgery, fusion surgery can be an effective option for patients to enhance their activity level and overall quality of life. This is particularly true now that minimally invasive techniques are available to decrease post-operative discomfort, preserve more of the normal anatomy of the low back, and result in higher rates of fusion than previous techniques."

    Was this guy a neurosurgeon or an ortho spinal surgeon? If I were you, I would get another opinion with an ortho.

    Please keep posting so we know how you're doing.

    xx Gwennie
  • Definately get a fourth opinion, every surgeon is different.

    Some will attack your weight instantly others will tell you to get it off if you want a normal life without more surgeries (spine surgeries, knee replacements).

    As far as the DDD I am not to sure, perhaps they are afraid fusion will only cause further instability with the discs above requiring further more invasive/radical surgeries.

    Most surgeons will tell you fusions can often lead to future spine surgery due to increased instability above the fusion site.
  • Do not give up! There is a right surgeon out there somewhere for you. Just gotta keep looking.
    Keep fighting!

    I went through 7 before I found mine.
    -----------------------------
    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • Been there but not with as many DR. Tell you what it is pretty hard to lose weight while living in pain let alone the physical disabilities. I regained weight that took alot of exercise to lose when I herniated my discs only now post op can I get back on track but it is still a huge mental and physical battle due to the effects of the whole process (injury - waiting - surgery - recovery - acceptance - disability)

    Best wishes to you and just remember even with surgery it is hard to get back to 'normal', it may never happen but I feel that you should be in less distress. I hope you can find a good DR. I also saw musculoskeletal specalists, PT, counceling and osteopaths to help with all the other areas of the body.
  • all very much. This surgeon has been a surgeon since the 80's. I'm just not sure what to do. This would be a 4th opinion. Maybe something is trying to tell me not to have this surgery. I just don't know.....

    I will keep you posted. Thanks again.

    Caity
  • I went to 8 different Drs , everything from nuero to orthos and it took 2 1/2 years before I could find someone who could find what was causing my pain. I had 3 torn discs. I thought I was going nuts cause they couldnt find it. I finally went to a Spine Clinic in Mpls MN which is 3 hours away. I suggest you find a spine clinic to be reffered to. They deal with this stuff day in and day out, hundreds of surgerys a year. If anything can be done, they should know it. Another avenue is a University Hospital Ortho Surgeon. It sounds to me that you really need to go on for help. I feel bad that you have problems finding someone to help you. But dont give up the fight. You want to feel better and live a somewhat normal life, and you just need to keep going. Thats the attitude I had and it kept me going until I found the right answers. Good Luck and if I can help in any way, feel free to PM me. Hang in there! I will be thinking of you. :?
  • My docs tell me I'm in-operable too (because they can't find what to operate on) and I just cannot accept that. I'm off to see yet another doctor next week. Probably around my 8th opinion. If I don't like and/or don't accept what this doc tells me I have more lined up. I know every doctor can see the same thing just a little differently, I'm just waiting for the one doc to see it the right way. Hang in there and don't give up. I know that's hard advice to follow, but I'm walking the same mile(s) in your shoes.

    I hope you have good luck in finding that right doctor!
    Spiney hugs :hug:
    Jay
  • I had a surgeon tell me there was nothing that could be done for me. I had all the conservative treatements done and I was running out of hope. I have DDD and he said I needed 3 lumbar levels fixed. I went home and felt defeated. I got on the internet and looked up a doctor that several people told me about and e-mailed him my diagnosis. He told me he could help me and he has. I am 3 months post op from a 2 level lumbar fusion. I am 90% pain free. Don't give up until you find someone to help you. I would recommend that you go to a Spine Center where that is all they do. I did not give up and I am glad it didn't. Hang in there
    Donna
  • People always say, if you look hard enough you will find someone to say what you want to hear. In your case, I think you found the one that is saying what you don't.

    You have had surgeons who think you are a surgical candidate and just one who doesn't. Get another opinion because I think the one you saw isn't the doc for you. If your disk is collapsed, your vertebrae are going to rub together and fuse themselves into a bad position as well as causing nerve compression. If anything, I would think you are an emergent surgical case.

    Good luck to you and may the pain angels stay near.
  • OMG I wish I could wave a magic wand when I read posts like these.

    I think if it was me, I'd try a fifth doctor and maybe a sixth. Surely there is one who's willing to TRY to help you.

    Do they offer alternatives or just send you off with your pain?
  • Caity - I know exactly how you feel. I had a surgery date all set up, pre-ops done, etc. Then they did my discogram and scan and told me I was in-operable! I started to cry, the tears would not stop, and when I got to the parking lot, I sat there and bawled uncontrollably! Get your fourth opinion. Get and fifth, sixth, seventh, and eighth if you need too. I have DDD, I had three levels that were blown and needed fixing, and I found someone to help me. Do NOT give up. Life's too damn short to suffer every day when you don't really need to.

    Linda

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • basically sent me on my way. JenG, I said to him "so my life is coping with this and taking pain pills for the rest of my life', and he said "yes". He was so arrogant about it. He told epidurals, nothing, will help me.

    I was referred to a place called ****** Spine Center here is AZ, so I think I will schedule an appt with them. The thing is I know they are probably going to want to try epidurals, physical therapy, etc, and I KNOW it will not work. I cannot lift anything heave, I cannot strengthen my core. It all hurts too much.

    To top it off, I am out of pills. I was seeing a PA, and since the surgeon said I'm inoperable, she now wants me to see the MD of the practice. I can honestly say I'm not addicted to the pills (yet), but I do need them to control my pain. There are days that I don't take them. Simple things such as washing a dish or cooking a light meal, or going to the grocery store (even with help) cause me so much pain. Now I can't do anything until I get those pills (Norco). I am taking over the counter xtra strength tylenol and Aleve, and it's barely touching the pain.

    My back is progressively getting worse. I am just so sick of living in pain. I will never be able to surf with my children, or ski, or pick them up and throw them around. I am only 35 years old. I'm saying this because I know you all can relate. I want to cry every time I have to ask my husband help me put my underwear and pants on. :(

    I can say (on the bright side) that I do have a very supporting family. It's funny and cute because any time I drop something, someone comes over to pick it up. It's like they don't even think about it. It just comes naturally to them. :)

    Thank you so much for letting me vent. I will probably get more opinions until I find the right one (like you said bwitht :) ).

    Lsteller, I am so sorry you had to go through that. I'm so happy for you that you found someone to help you!

    Thank you all again so much!!! This is the BEST place to come. I love how everyone "gets" it.

    xoxoxoxo,

    Caity
  • It sounds like you have a good attitude. They will most likely (sometime along the line) do a discogram, which is where the shoot dye and gas into your vertebral openings (where your discs should be) and determine which areas are the ones that need fixing. If you only need to have the L5/S1 fused, that won't be so bad. Well, all sugery is painful, but the fewer levels to be done the better you will feel afterward. Good luck and let us know what you're doing.

    Linda
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • Caity, I'm glad you have a supportive family and they help you almost without thinking. Fingers crossed, something helpful comes out of your appt. with the Spine Centre. Perhaps someone there will know someone special who may be able to give you some relief.

    I wish you could see my Dr. in Australia. I have so much faith in him.

    Good luck and please let us know how you get on in your search for help. I hope to hear some good news from you soon.
  • Hi Caity, I will share my story with you. Back in 2002 i started waking up with chronic stiff necks. I went to my md and with my neck tilted he prescribed meds. This went on and on. Finally he ordered a MRI. He then ordered the physical therapy. Then he Sent me to a neurosurgeon. My Mri said I had severe DDD, I had a herniated disks at C4,C5,C6. One of them was pressing on a Nerve so far in that my arm would go dead about 4 times every night. I have osteophytes through out my cervical spine also. My Neurosurgeon that I was sent too, (i didnt pick him) said it was all arthritis and my pain was all in my head but ordered these trigger point injections which were injected in the lowest part of my head. Needless to say that hurt so much I cried. I got a 2nd opinion and this guy said That no doctor in my town was qualified to operate on me to look for a doctor
    in a town about 120 miles away where they specialize in cases like mine. My family doctor agreed and I went. Its September 2005 by the time I get to this point. Over 3 years of pain was pathetic in my opinion. I met the guy he looked over everything and He is also the president of the spine institute I went too. He said I need a multilevel fusion with the metal plates and hardware. I agreed to it and set it all up. But then he wasn't available until Jan 2006 because he was booked until then. The point I am making is one doctor says it was nothing basically, the 2nd says Im too much of a risk, the 3rd is willing and capable. You'll find him or her, they are out there. Where there is a will there is a way. Hang in there. :)
    2005-ACDF with Corpectomy at C3-C-5.
    2006-L4-L5 diskectomy.
    2009-Cervical laminectomy at C3.
    Steroid injections series x 4.
  • Wow man, you have been through alot and the discouragement from the Drs can make you feel crazy sometimes. I don't know if this will help, but many surgeons I have seen do not do anything until you have serious neurological problems. Pain may not be a reason for doing a lumbar surgery in many cases. If you have loss of walking and other neuro problems, they will usually look further. If it is just pain, they will try to let pain management resolve it for you. If it is pain now and later you have more neuro problems, they will look further and may take action such as surgery. I have been on both sides of the fence here and have lived with some neuro problems for a year before Drs would take action. Let us know how you do. See yah.
  • I remember when my surgeon wanted to do my first surgery, he brought up the fact that I had neurological damages progressing. Thinking back now, I wondered if he and the insurance company needed that fact (numbness and not just pain) to proceed with my surgery.

    Hang in there. I know it sounds simple but I can sympathize being in pain and not able to even go through physical therapy to alleviate the pain.

    You are blessed to have a supportive family as I am. Being in pain can really do a "head job" on a person.

    Best luck to you!
  • So far there is nothing neurological. I guess it just depends on the surgeon when or whether they are going to operate or not.

    Pain is a definite issue. 6 years ago I was a woman who could throw 6 grocery bags on each arm after getting back from the grocery store, walk around the county fair all day long, go bowling, put on my own shoes and socks, dance my butt off on a girls night out.... The list goes on. And today I can't do any of those things. I just feel like I am not getting any help. :(

    I know you all know what I'm going through, and am so grateful I have a place to turn to. I do get a lot of compassion from friends and family, but it's so nice to talk to you all.

    I have an appointment with my primary tomorrow morning. Wish me luck!!!!! :)

    XOXOXOXOXO

    Caity
  • Just wanted to let you know I know all to well the frustration your going through. I have been dealing with w/c since Dec.08 I have an annular tear at L4-L5 and Herniation at L5-S1 w/ nerve compression. I've had 2 mri's,emg,pt twice now considering acupuncture. I've had 2 n/s's tell me I need a fusion BUT they think it will make the nerve damage in my legs worse!! I thought that is why they do surgery so the damage won't continue to get worse! I am to a point that I don't know what else to do any longer. They told me we could try ESI's but gave me little chance that they would do anything for me.
    At least you have an option that I don't have you can get more opinions with other surgeons. I have been told to live with it also. My PCP is at his wits end with w/c because he feels I am getting the run around also.
    I know how you feel about trying to do the smallest things around the house makes you miserable. I push myself everyday to keep going and try not to complain but some days I have to just sit and cry when no one is around because I never imagined my life like this at 40.
    The only comfort I have gotten out of this whole mess is that it only took me 3 months to be approved for SSDI thank god for that.
    Send me a pm some time would like to talk more it seems we have a lot in common!
    And remember take that option and find the right surgeon good luck!!

    Barb


  • Yes, I want to get back to the days of being tough again. That was two years ago, I was still running races, water skiing, snow skiing, biking, jogging every week, and lots more. But now, I can walk ok, but that is about it. The word "frustration" just doesn't tell the entire story, but yes, I can relate.
  • Isn't it just great! Not! At least you are getting SSDI. I just applied myself. Wish me luck! :o) I'm at such a crossroad right now. What if this last surgeon is right, and surgery won't fix me. And what if I let someone operate on me and it gets worse? I will probably ultimately get another opinion. I saw my MD today and she told me I might want to try a pain management clinic. She said it is totally up to me, but it is an option. What to do???? :)

    Caity
  • And I also got my meds refilled. :) She told me she had no problem giving me the pills. Bless her heart! She even gave me refills! (The PA I was seeing in her office was giving me 5 to 10 day supplies at a time, and it was never easy getting a new prescription). It is such a relief now knowing that if I am in pain I have pills to take. I also hate taking pills though. But whatever it takes to relieve my pain. :)

    Caity
  • You definately need a second opinion!
  • I know, and I will probably get one eventually. We might be moving again so I might wait until that happens.

    Thanks again to all of you for your support and advice. I really appreciate it!

    Caity
  • I think going to pain mgt would be a good thing for you. They can always refer you to a surgeon or whatever specialist they think can help you.

    This happened to me after my first surgery, and I was started on long acting meds as well as Norco and others. After a few months they referred me for a consult with a surgeon to see if something could be done for me. At the time I was suffering from a disc reherniation, nerve compression, vertebral slippage, and severe DDD on L4-S1. My surgeon thought it'd be best for me to have a 2 level TLIF with instrumentation.

    So, going to pain mgt isn't the end of the road. It can ultimately lead you to where you need to be. I am relieved that you found a pain specialist to help you out. It don't matter what your age is- if you have severe DDD and you're in your thirties, you still can be a surgical candidate...this was my case. Take care
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