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Please Help! New neuro appointment next week-possible 4th surgery

OverItAllOOverItAll Posts: 89
edited 03/21/2015 - 10:15 AM in Back Surgery and Neck Surgery
Hi everyone,
I am new here (this is my first post). I have had 3 back surgeries and fear another one is in my near future, but also fear it isn't. The first was a micro discectomy, after many years of on and off severe lower back pain/ sciatica followed with Pt and some failed epidural spinal injections! L5-S1 and L4-L5 in 2012, hit the 6 week mark and was recovering well when I experienced severe pain, after two weeks went to the emergency room and discovered a my disc burst and I was slowly leaking spinal fluid. Had emergency surgery the next morning for a repair and after a few days of laying flat in the hospital was sent home and back on the road to recovery.

Skip ahead to 2014, just as I was feeling normal again. Walking miles, getting out with the kids and friends, cleaning my house(ha, who knew I would be excited by being able to do this!?!) I begin to have numbness in my right foot, sciatic symptoms, muscle spasms, severe touch sensitivity(felt like chisel poking me when touching lower back). Again, tried epidural shots and PT. I had two glorious weeks of near pain free symptom free, and then back to the bak pain. It was determined that surgery would be needed with definite fusion at S1-L5 and possible fusion one layer up at L4-L5. Once the neurosurgeon got in there, they found a dime sized bone chip pressing on the nerve(explaining symptoms on opposite side of where compression was showing it should be). When the bone chip was removed they found a very angry looking purple nerve with yet another spinal fluid leak. Spent another few days laying flat, then back onto recovery. Started PT with aqua-therapy(LOVED this so so much) and was doing great, feeling optimistic, started working again and getting back to "normal" Woke up at 3am on my 40th in serve pain(almost went to ER, but decided to hold off for 24hours to see urgent care)So, now I am having all the same symptoms as last time with MRI showing "slight" herniation at L4-5 (when they found a bone chip) , epidural a not helping, exercise causes severe increase of spasms and nerve numbness, leg weakness, burning tailbone. GP passed me on to the pain management clinic who has now passed me to yet another neurosurgeon. We have moved, so this neuro was recommended by the last.

I am on gabapentin, flexeril and oxycodone, which make me very forgetful, tired, and now I have a belly which I have never had before, not to mention just the overall jelly-ness from lack of exercise (can only walk about a mile before both feet go numb)because the doctors are all afraid to have me do too much because of my symptoms. I can not sit for more than five minutes, I cast and for quite some time, but by 5pm I am in severe pain due to spasms, muscle cramps and numbness. Laying flat is the most comfortable position, so I spend a lot of time just staring at the tv since I can't read long with muscle relaxers and pain medication making the words swim around.

I am mentally preparing for another surgery, because the thought of living like this indefinitely is too much. I am a mom, a business owner, a wife and in a new town without a support system beyond my immediate family. My husband is amazing support and is in it for better or worse, even if that means he has to do all the laundry, dishes, lifting, vacuuming, and a lot of cooking-ha! But my strength is dwindling, emotionally and physically. I am so over it all. I am frustrated because the MRI and kinesthetic X-rays all show I should not be feeling like this, as they did last time when they DID find some very near permanent nerve damage. I am frustrated that they just didn't fuse both levels when they had me on the table. I am frustrated at the thought of going back to square one AGAIN with my fourth surgery in a span of about 2 1/2 years. I am frustrated at the thought of a doctor saying here's more medicine, zombies are in now anyway(cause that is how I feel on the medication). I am frustrated that the nerve which was just about fully recovered will not bounce back again.

I should add that I have a younger brother who has also had several back surgeries and a fusion as well. His nerve symptoms are not sciatic, but he is complicated with scarring and degenerative issues, which I have not had diagnosed.

So sorry for the long first post, but any advice or questions to help me make the most of this appointment are more than welcome.

Thank you so much for the "ear"


  • LizLiz Posts: 7,832
    Please take the time to read this post and refer to it when you have questions

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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I am still fearful of either the neurosurgeon saying, yup time for another surgery or saying, not a thing can be done , any help or insight is very much welcome as I anxiously make it through this week(and hope I can last the 3 plus hour drive, thankfully, as a passenger)
  • jlrfryejjlrfrye ohioPosts: 1,110
    Being a multi surgery person myself (8) so far I think the fear is the answer to what you feel you already know. Mentally you have been there already for the surgery, the anxiety, the fear all that goes with surgery. It is the answer from the surgeon that finalizes the unknown. Deep down speaking from experience I already knew the answers I was going to receive from my surgeon , just needed it validated. I hope all goes well at the surgeon and the answers you seek are good news. Keep us up dated and good luck
  • Thanks for the advice Susan, I definitely feel like I know what the answers will be. Last time I had to do a certain number of things before talking surgery to see if non invasive treatment would help, this time around I already tried all of that with my physiatrist and am going in with the knowledge that the bulging disc already had a micro discectomy and decompression, with the level down having a fusion. It was also an area they almost fused last time, so I know the answer, but I don't know for sure. This is going to be the longest five days....
  • clwinbecclwinbe Posts: 30
    edited 03/25/2015 - 11:34 AM
    I think you need to take an honest outlook. Backs don't heal, or get better. You have a new life now. What really put me back in business was an intrathecal morphine pump. I took hundreds of milligrams of pain killers and it does not work. The pump works.
  • Thank you clwinbe, I would embrace that thought except for the fact that all my symptoms from last surgery came back with an acute onset, I mean an exact moment of extreme pain that woke me out of a deep sleep when there was no pain when i went to bed, numbness that had previously gone away, etc. The symptoms before my fusion surgery did not coincide with the MRI findings either and they found a dime sized bone chip just hanging out, hidden from all the films. So I wonder it this has happened again. I am not opposed to long term pain management in the future if this persists. But I had recovered from the fusion surgery to where I didn't even need ibuprofen and my worst paint never got above a 4/5.

    I hope this doesn't sound like denial, but I was just as determined a year ago and there was reason for this. Had I accepted that pain and just treated it with medication, I very well may have done permanent nerve damage by leaving a piece of bone to slice into my nerve.
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