Page 1 of 7 123 ... LastLast
Results 1 to 15 of 98

Thread: Nicole's Surgery

  1. #1
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809

    Nicole's Surgery

    I just heard from Melissa. She said that Nicole's surgery went well - no complications or surprises. She is in a lot of pain and discomfort but that is to be expected. And, of course, as would be the case with any of us moms, it is difficult for Melissa to see her this way - but she knows it is temporary. As of now, they are hoping to be coming home either Sunday or Monday. She wanted me to let all of you know. I know how grateful she is for all the prayers and support.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  2. #2
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    I am so very glad to hear this. Even though I am new to the forum I have read some of Nicole's story and couldn't stop thinking about her having the surgery. I am relieved to hear all when well.

    Do you know what kind of pain meds are given to children having surgery? My daughter doesn't even like to take tylenol!!
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  3. #3
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Thank you Maria. Please send our love.
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  4. #4
    Join Date
    May 2005
    Posts
    776
    so pleased to hear, worse should be over now, send my best wishes

    gerbo

  5. #5
    Join Date
    Mar 2007
    Posts
    77
    I'm glad to hear everything went well. I've been following her story as it is somewhat similar to ours. My daughter is 12, and curves were 61T and 53L, risser 0. She was fused T2-T11, hoping that the lumbar curve was compensatory and will straighten itself out (I'm praying for that). The doctor felt the risk worth taking as she still has alot of growing to do.

    I know it was such a relief to be past the surgery itself and know that everything went as well as could be. The first few days are tough, and you hate to see them in so much pain. My daughter had surgery on Aug 22 (Wed), on Saturday they sat her up in bed for 15 min., it was very hard to see, it was all she could do--but, the next day she was walking down the hall. She was released the following Monday, and, by 1 week post op, she was not taking any strong pain meds (she chose this on her own, I kept trying to get her to take something stronger, but she insisted the pain wasn't that bad?!). I could not believe the change in just a few days, hopefully Nicole will be the same way.

    Rtremb - in the hospital, she was given dilaudid (on pain pump) and toradol for the first 2-3 days. With vicodin, valium and motrin orally as needed, by Saturday they were weaning her off the pain pump and by Sunday it was removed with everything given orally. I had to keep on some of the nurses to give her the oral meds regularly (as the order for them was as needed), some nurses didn't believe in using the valium (1 night I had told them to give it every 6 hours, and woke up the next day to find that they hadn't given it to her at all). Her biggest complaint was the pain in her right shoulder blade. We were sent home with vicodin, valium and motrin - and, like I said before by Wed (1 week post op) she was not taking anything stronger than tylenol and motrin. Now, she hasn't taken anything at all for the last 2 days - 3 weeks post op. We go back for follow-up next Thursday, and she's hoping to be released back to school.

  6. #6
    Join Date
    May 2005
    Posts
    672
    Thanks for updating us Maria. I'm so glad everything went well for Nicole. She's almost through the worst part, hope she makes steady progress everyday. I imagine Melissa must be exhausted but relieved to finally be on the other side of this!

    Best wishes,
    Renee

  7. #7
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Great news for Nicole and mom and dad. It's very hard to see them these first few days, but it does get better, I promise. This is a HUGE surgery. Lots of manipulation of the spine. The spine is the center of the body, so all of the body feels the affects of the manipulation. Great outcomes are often experienced. Hopefully Nicole's outcome is great too.

    I have to disagree with the use of Motrin/ibuprofen products (Toradol is an IV form of ibuprofen) for fusion patients. MANY hospitals/surgeons believe ibuprofen can interfere with the fusion process. The LAST thing you want to have happen is something interfering with the fusion process. A failed fusion area would mean major complications later. I strongly suggest you talk with the surgeon and the pain services people before taking Motrin/ibuprofen before and after surgery. Motrin/ibuprofen can also promote excess bleeding. My Braydon had leg surgery last week. They cut his tibia and rotated his foot to a more straight position. The bone bled for 36+ hours after surgery. He had not taken any motrin or aspirin products for more than a month before surgery. They did give him a dose of Toradol in the operating room. The surgeon did not allow the pain services docs to give him anymore Toradol or anything that would potentially complicate the bleeding. In fusion patients, it is very important to understand the pain management plan BEFORE the surgery happens.

    Quickly, scoliosis surgery patients need heavy duty meds because of how big this surgery is. In the hospital, they will try to control the pain using the IV so the patient doesn't have to swallow medication. Within the first 3-4 days, they will switch the patient to oral medication. Braydon does best alternating Lortab and Valium for his pain. Every patient is different, but most teenagers need narcotics for at least 1-2 weeks, sometimes more. I also think they do better if they have two to choose from. Not just one every 4-6 hours. Too much chance of breakthrough pain. When you can have medication on board to cover until the next dose, the healing actually goes faster and smoother. Alternating works best for Braydon.

    Another big issue most docs don't talk about (probably because they are only surgeons, not long term care givers) is constipation. Between the anesthesia and the strong narcotics, most people's GI system shuts down. If you have a problem with constipation while your back is trying to heal from surgery, it will be excrutiating. Make sure they give at least stool softner as soon as they are able to keep liquids down. Braydon has a slow GI system, so he MUST take a stimulant laxative AND stool softner twice a day starting the day of surgery. Otherwise, life is miserable and painful. Last week we didn't insist on laxatives like we should have. By Saturday (surgery was on Tuesday) he was sobbing in pain from constipation. Had to give him an enema. Not a pleasant thing to do when your back (or leg, in his case) doesn't bend or sit on the toilet well.

    Done rambling and lecturing... LOL Sorry for side-tracking on Nicole's post. I hope all goes well and you are happy with the surgery, one day.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  8. #8
    Join Date
    Mar 2007
    Posts
    77
    Well...I have seen conflicting views concerning the use of ibuprofen products. Our doctor believes that the pros of using those products outweigh the risks of affecting the fusion. I followed his advice. Time will tell us if her fusion doesn't heal, I pray that is not the case.

    My daughter has always had a high pain tolerance, and while I thought she should be taking the stronger meds, she insisted that she didn't need them. I don't believe this is the case in most instances, it seems that most need stronger meds for a longer time than she did. She's been up and moving, and we're now walking a good 45 min. day (3 weeks post op).

    Also, while I have read many reports of constipation, we luckily didn't have that problem either. She was given (once) stool softner in hospital, and lots of fruit and vegetables (that's really all she would eat of the hospital food), and has been fine. One other thing, she had never had a period and I had been told the surgery may cause it to start. Well, she was released from hospital without it starting, so, I thought we wouldn't have to deal with that, two days later...it came. So, another thing to deal with.

  9. #9
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Thanks to everyone who posted well wishes for Nicole and Melissa. I know that as soon as she has time, Melissa will be reading them and appreciating every single word!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  10. #10
    Join Date
    Sep 2007
    Posts
    2
    I am new to this forum but have been reading the posts by Nicole's mom. I am so glad Nicole's surgery went well and hope & pray for a speedy recovery. My heart always goes out to families facing this surgery. It is so emotionally and physically exhausting. I don't think I realized how tired I was until it was all over and we were back home. I think my recovery time was longer than my daughters!!!!
    Emma12 my daughter sounds so similar to yours. We had our surgery on June 18th. She was fused T2-T10 and we also didn't correct the lumbar curve hoping it would straighten on its own. I guess I worry about having to do a second surgery. She is 12 and still has a lot of growing left too. She started school and has done well except being tired at the end of the day. Her pain tolerance is really high and we stopped pain meds within a couple of weeks. Anyway, I guess it is always comforting to know other stories like ours.

  11. #11
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    ibuprofen after surgery

    Well...I have seen conflicting views concerning the use of ibuprofen products. Our doctor believes that the pros of using those products outweigh the risks of affecting the fusion. I followed his advice. Time will tell us if her fusion doesn't heal, I pray that is not the case.
    emma12

    At the time I had my surgery(2002)they were allowing ibuprofen after 4 months(I used Aleve because it was easier on my stomach and lasted ~12 hours). My fusion healed beautifully and I was 60 at the time.
    Try not to worry too much.
    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

  12. #12
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    I am so happy to hear that Nicole's surgery went well. It will be great to hear from Melissa when they are home from the hospital. I hope Nicole's pain is more under control by now but I know that for my son it wasn't until his second day home from the hospital that he really started to feel better.

    Alexander was on the morphine pump for 2-3 days along with valium as needed. After he was taken off the morphine, he was given oxycontin 2 times daily for 2 days along with tylenol & oxycodone every 4 hours & valium as needed. The day we left for home, he was taking just the tylenol & oxycodone (along with something for nausea as needed as well as a stool softener). He only used one pill (the first night home) of the valium I requested he be prescribed because he never seemed to need it. He was off all narcotics within a couple of weeks (I think - it's late). Now he rarely takes some tylenol. Usually taking a walk helps his back if it gets achy.

    Take care everyone & Congratulations Nicole & Melissa!
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  13. #13
    Join Date
    Sep 2005
    Posts
    877
    Hello Everyone,

    Thanks again for all of the prayers and good thoughts. We just got home a few hours ago and we are emotionally and physically exhausted. My husband and I were there at the hospital from the moment we brought her into surgery until we came home 6 days later. We never saw the outside for 6 days. One of us was there with her at all times and we ate and slept in shifts. There was only one bed and neither of us wanted to leave the room to sleep in one of the family rooms, so we both stayed there. It is a beautiful hospital with wonderful staff. But it was still such a horrible experience.

    Let me thank all of you for being so honest and telling us it would be some of the worst days. It was a nightmare. Thankfully the surgery was successful and there were no complications. Nicole's back looks beautiful and she looks so tall. But Nicole was in such excruciating pain and discomfort and needed us constantly. She was in intensive care for 3 days and then moved into a regular room. She had a lot of private care in the beginning, plus Ed and myself and we still couldn't make her happy. Also, she gets stressed very easily and in addition to the pain she was so scared. She was calling out to God, calling out to the nurses, saying she was going to die, etc. I know a lot of that was the medicine. But I have to say it was just awful. I think the nurses had a party when we left the Pediatric Intensive Care. She was much better by the time she got to the regular floor.

    By the time we left the hospital, it was hard to believe that it was the same Nicole. However, no matter how many times I keep promising her that this is all temporary, she is having a difficult time believing it. She keeps saying she wants her old life back. I keep reminding her about all of your wonderful children and how well they are all doing. But I guess she will just have to wait and see.

    I definitely over-packed for the hospital. I brought blankets, shampoo and stuff for me and my husband and they had all of that stuff. I was smart enough to bring a dvd player and Nicole's favorite show Full House really saved us. By the 3rd day or so she listened to it. By the last couple of days she sat up and watched it. Nicole had a private room. But the second room she had didn't have a controller for the dvd player so I am glad I came prepared. Ed forgot his charger for his cell phone, but I brought mine. Otherwise, we were very prepared. Chapstick is a must.

    My Parents watched over our teen and our one dog and our puppy was boarded because she needs a lot of attention. I thought I would have been finewith Ed leaving after a few days, but he actually handled Nicole much better than I did. He was also a lot better with the log rolling and such. So I am glad we were both there. She was a handful.

    Nicole has a clam shell brace that Dr. Dormans would like her to wear for comfort and protection for now while walking or sitting. Ed and I wore our special Team Nicole Let's Get it straight t-shirts and even Dr. Dormans commented about them. They were awesome.

    Mary Lou, I still can't believe your daughter felt well enough to greet you with an insult. Nicole was so out of it for the first 48 hours that we never had any normal conversation until a few days after the surgery.

    Her x-rays look good and he wants to see us back there next week for our first post op. Laurie, Nicole is on the same meds as Alexander.

    Pola, during the stay I kept reminding Nicole of Anastasia and how good she looks and how happy she is. I am so glad we got to meet you last year.

    Nicole is still very unhappy. But hopefully will become more like herself as the days go on.

    Thank you all once again for being there for me. Sherie, we should chat on the phone sometime. Remember too that every child handles things differently. Nicole has been a high strung kid since birth. But she also has great determination. When I told her she had to get off the pump to go home, she was all for it. When it was time to stand, walk, do the stairs, etc. with her physical therapist at the hospital, she was right on board.

    Talk to you real soon. Melissa
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  14. #14
    Join Date
    Mar 2004
    Posts
    1,140
    Hey Melissa,

    I'm sorry to hear Nicole regrets having the operation and wishes she had her old life back - I think this is common for the first few months? I'm sure once the pain level subsides she'll be feeling like her normal self. It sounds like you and Ed ran a marathon. Remember...take care of you! They say too much stress isn't a good thing for overall health and well being.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  15. #15
    Join Date
    Jan 2006
    Posts
    513
    Melissa,
    Once Nicole is over her pain, I'm sure she will get back to normal and it will all seem like a really bad dream. It will all be worth it soon.
    I am so grateful there were no complications. I read that CHOPS is No.1 in the US. That is one of the reasons. They must have great infection control. They rated the highest in nursing care, also. Very important!
    Can't wait to hear when things get better. Till then, I will pray for God's comfort and encouragement to lift you and sustain you. His loving arms are around you and His strength is ours. He wants you to feel the joy of His comfort and love in the midst of this.
    It always helps me, when I am in the midst of a very painful trial, to remember that when I hurt, He hurts. He wants to comfort us.
    ((((((HUGS!!!!!!))))))))))))))Wish I was close enought to bring you some chicken soup!
    Much love,
    Cheryl
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •