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Thread: Need an e-shoulder to cry on.

  1. #1
    Join Date
    May 2005
    Location
    Buffalo, NY
    Posts
    33

    Unhappy Need an e-shoulder to cry on.

    Hi again,
    I have posted on the "Revision" thread before for my daughter Kate (hence the name! ). Kate had spinal fusion in November 2003 T11-L3 (she was 16)with an anterior/posterior approach. Since then she has been in constant pain from the rod (you can actually feel the rod by touching her lower back). Dr. Ferrick did the original surgery and now Kate is scheduled to have all the hardware (except for the cages) removed on 7/15/05 in hopes of relieving her pain.
    I love Dr. Ferrick to pieces. I think he is a wonderful, caring, talented surgeon, but putting my daughter through this kind of pain again with no guarantees that it will "cure" her pain is just tearing me apart. I know she can't go on living with pain killers everyday for the rest of her life, either. I was just wondering if anyone else has ever dealt with or heard of Dr. Ferrick (and I guess some kind words of support wouldn't hurt either ). Anything to put my mind at ease I guess.
    Not that it has anything to do with it, but Kate was supposed to donate 2 pints of her own blood for the surgery. This morning was supposed to be her 2nd (and final) pint. They pricked her finger for the iron test, she asked if she could use the Ladies Room and promptly threw up. Knowing what she knows from the last surgery, she is just so scared and nervous. She is scheduled to start college on 8/22 and we both wonder if she will be able to. So many things in our minds (and I have such a small space to store them in! )
    Sorry about the rambling...it's either write or cry and I am running out of make-up to reapply!
    I am going to post this same message in the "Revision" section to see if anyone has any similar experiences.
    Thanks for letting me vent.
    Kathy (kates mom)

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Kathy...

    I know how traumatic this must be. You might want to do a search on the word REMOVAL. There have been a few discussions on the topic. The vast majority of people I know who have had their implants removed, say that the removal surgery was a piece of cake. Occasionally, the implants are really buried by bone growth, and I think that can be tougher. But, I don't think I've ever heard anyone say that the removal surgery was nearly as hard as the first surgery.

    Since you're concerned about the doctor, would it be possible to get a second opinion? Not that it's absolutely meaningful, but I notice that Dr. Ferrick is not a member of the Scoliosis Research Society. That could mean that he doesn't do a lot of scoliosis surgeries.

    Regards,
    Linda
    Last edited by LindaRacine; 06-29-2005 at 03:08 PM.

  3. #3
    Join Date
    May 2005
    Posts
    19
    Kathy,

    Have you gone to anyone for a second opinion? Even if you are happy with your surgeon, it is good to have someone confirm (or not) whether this is the best thing to do. It would also give you more peace of mind. Maybe someone else will have some suggestions about who could give you an opinion, even if you just mailed the records and received a letter.

    Hang in there! Your daughter is blessed to have a mom who is willing to find out as much as possible and be an advocate for her to receive the best!

  4. #4
    Join Date
    May 2005
    Posts
    19
    I guess Linda posted while I was distracted... At least we agreed!

  5. #5
    Join Date
    Jun 2005
    Posts
    9
    I agree that a second opinion is in order. I can say from my experience that i was in constant pain with muscle spasms underneath my shoulders and the muscles parallel to my spine for probably the first five years after surgery and i can feel mine also. My doctor told me to learn to deal with the pain....so i sort of have. I really dont know if this is normal or not. Whatever happens good luck.

  6. #6
    Join Date
    May 2005
    Location
    Buffalo, NY
    Posts
    33
    Quote Originally Posted by d_ann
    Kathy,

    Have you gone to anyone for a second opinion? Even if you are happy with your surgeon, it is good to have someone confirm (or not) whether this is the best thing to do. It would also give you more peace of mind. Maybe someone else will have some suggestions about who could give you an opinion, even if you just mailed the records and received a letter.

    Hang in there! Your daughter is blessed to have a mom who is willing to find out as much as possible and be an advocate for her to receive the best!
    I have looked into getting a second opinion. The group here in buffalo (that did Kate's 1st surgery) is the only group that my health insurance covers that does pediatric spinal surgery. Unfortunately, being a single parent, paying for visits out of pocket is pretty much impossible financially. Dr. Ferrick did tell us that he has consulted with other Dr.s about Kate and according to him, they all agree that the rod should come out. This is kinda nice tho (I think?! ) I was in a car accident on 6/6 and broke my shoulder blade. I was sent to an orthopaedist to have him look at the X-Rays. Well, long story short 10 minutes was spent on my shoulder and 30 minutes were spent discussing Kate and Dr. Ferrick . My orthopedist said that Dr. Ferrick is a great person and a extremely talented surgeon. Made me feel a little better!
    Thank you all for your support and well wishing! I'll keep you informed.

  7. #7
    Join Date
    Apr 2005
    Posts
    15

    Revision surgery

    Hi!

    I scanned your post and noticed that you guys are thinking about having Kate's rods removed?

    I would SO totally recommend that you do.

    I recently had my rod taken out on June 3rd, and the pain/recovery was NOTHING like the original surgery. For the first week I felt like crap, but after that I started getting more mobile and the pain started going away and it's just gotten better and better. Best of all, I have NO pain whatsoever from all that metal anymore. It's made my life so much easier. I still get tired easilly and I'm having some emotional problems as a result of the anaesthesia, but otherwise I completely maintain that my decision to have the revision was the best decision I ever made. Don't be nervous for Kate, she sounds like a strong kid, and you're obviously a supportive mother. Just be there for her and support her on whatever decision she makes. Just make sure she chooses what's right for her.

    If Kate needs anyone to talk to about the revision surgery, I'd be MORE than happy to go into further detail. My email is annersofoz[at]gmail.com, so have her drop me a line if she needs to

    ~Anna

  8. #8
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Exclamation removing rods?

    This is not a panacea.

    Some of us who had no rods put in with original fusions lost correction-me -and needed new surgery WITH rods. All along I was told my fusion was "solid". Some people who took rods out LOST correction.

    In my case my "solid" fusion gradually bent and I ended up with an 80 deg thoracic curve in middle age. No osteoporosis and never smoked. Active and athletic most of my life.

    It's not easy any way you look at it.

    Karen
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  9. #9
    Join Date
    Feb 2005
    Location
    Wales, UK
    Posts
    28
    I had my hardware removed on May 17th this year. I'm amazed at how good I feel now just a couple of months after. The recovery time was nothing like the first one. I was walking the day after surgery and things have only got better, I have no pain at all, at worst I am a bit achey after exercise. I have been swimming, walking and I've even rode a bike (not very far though). I couldn't do any of these things before my rod removal because of the pain.

    My surgeon was very happy with the surgery and said that my fusion was solid.

    I hope everything goes well for your daughter and she will be free from pain.

    Laura

  10. #10
    Join Date
    Jul 2005
    Location
    Illinois
    Posts
    18

    Survivor

    I had my first surgery at age 16 at Shriners Hospital for Crippled Children in St. Louis, Mo. I had spinal fusion T2 - L3 with a Harrinton rod placed along my spine. I was in a body cast that was from my chin to my thigh for 9 months. I was a junior in high school and it was very difficult for me not being involved with my friends for a year. I did fine for a long time after the cast came off. I was able to do what ever I wanted except for gymnastics which was my passion at the time. I had 2 children with very little problems, except a C-section was the way I had to deliver. When I was 39 I started having quite a bit of back pain and leg pain and was trying to finish my degree in surgical technology and going to clinicals daily. I was literally crawling every morning to the bathroom in order to get ready. I saw doctors in Illinois who sent me for spinal injections which didn't help at all and physical therapy, which made it worse. I was in clinicals one day with a lady who told me about a doctor at Barnes Jewish Hospital in St. Louis, Mo. named Dr. Lawrence Lenke. It took me four months to get an appointment, but well worth the wait. I was diagnosed with degenerative disc disease (DDD). Dr. Lenke suggested surgery again and I had anterior/posterior spinal fusion with cages and hardware replacement. I am now fused from T2 - S1 have 2 cages in L3 & L4 with 5 rods, plates, 2 cages and lots of screws. I also have about 2 - 3 inch screws in my pelvis to stabalize the fusion. 3 years later I am facing yet another surgery on August 15, 2005 to have the illiac screws removed due to lower back pain again. I still have no feeling in the upper part of my back and I have leg pain and severe right hip pain. My hip pain is idiopathic and I have been on pain medication now for 3 years for the back pain. I fell 5 weeks post op in the shower and fractured my elbow and messed up my hip or something in the area but Dr. Lenke could not find anything causing the pain. Through all of this I have had the loving support of my husband, children and extended family members. While in the hospital the some of the OR staff came to see me and check on my recovery status. I was treated so well and Dr. Lenke's staff has always been there for me for my crazy questions and concerns. Although I am not looking forward to yet another surgery, I do know I will be in good hands with Dr. Lenke. My suggestion to you is to rally around your daughter and make sure her concerns are immediately addressed and a second opinion wouldn't be a bad idea. I was told that I couldn't have the hardware removed ever so I don't understand how your daughter would be able to survive without it, I think it is a necessity. If I can be of further assistance or you need a shoulder to lean on please feel free to do so.

    Dawn

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