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celestin1170
01-11-2005, 05:02 PM
We went to our pre op appointment yesterday and I got all the stats on what is going on. Our last visit with our doctor had been in October and Keri's curve was at 53 degrees. Her doctor did more x-rays yesterday and her curve has progressed to 65 degrees. She will be having a Posterior Thoracal(spelling?) Lumbar Fusion from T3-L4. He will be using shavings from her right ribs for the bone graft. He closes the incision with dissolving stitches and covers them with steri strips. She will not have to wear and type of brace afterwards! She did have to go back today for an MRI. He wants to make sure there is nothing else going on in there because her curve has progressed so quickly. Now that all the pre op stuff is done, we only have to get through the surgery on the 25th. The surgery is scheduled for 7:30 AM. I will keep everyone posted.
Talk to you all soon.

Kim
Keri's mom

Mary Lou
01-11-2005, 05:49 PM
Kim,

I've been waiting to hear from you. Sounds like the appointment went okay. I'm sorry to hear that her curve has increased, but at least you know the surgery is soon and hopefully it won't progress any further.

I think a lot of doctors use dissolving stitches and steri-strips which I am glad they do. Could you imagine having staples? Ouch!

We'll all be thinking about you on the 25th.

Mary Lou

Littleone1016
01-11-2005, 06:58 PM
Haha I actually did have stables to stitch me up for at least one of my surgeries. My mom had to take out about half of them some time later after I got home and was recovering. The rest had to be taken out by the doctor. The good news is that it really didn't hurt that bad taking them out. Bad news is of course that my scar is not real pretty. I'm so glad that they are using the desolving stitches more and more. They are great. Sad but true but I've seen people who have had the same or close to the same surgery without stables and I am so jealous of how small and neat the scar is. So that's a good thing for your daughter! I hope everything goes well for you and your daughter. Let us know!

Alison
01-12-2005, 06:44 AM
Hi Kim

My very best wishes to you and your daughter. I hope everything goes really smoothly and well for for you. Dissolving stitches make the prettiest and neatest scar (well I think so) I've only ever seen staple scars and dissolving stitches scars, and I thought the staple scars look a little scary and not quite as pretty and I bet your daughter is pleased with not having to wear a brace afterwars.

Good Luck

Alison

blairf83
01-12-2005, 10:58 AM
I had staples for my abdominal surgery. It's coming up on 5 yrs old, and I can still count the number of staples I had... I have a funny little row of white dots on each side of my scar.
Mine weren't uncomfortable (either being in, or being removed... though I did turn a bit green at the gills when the Dr. took them out) but it seems like staples would be uncomfortable for this particular surgery... you lay right on them for most of your recovery.
Both me and my riding student had dissolving stitches and steri strips, and our scars turned out fabulous (exception being the top of my scar... but... that's not too common)

AC13
01-15-2005, 07:34 PM
Hi Kim:
My daughter is going in Feb. 15th for posterior surgery. Her doctor is planning to use the "donated" bone fragments - yuck and he started talking about rods and screws - but he lost me there. She had to have an MRI done also just as a precaution, I guess when it moves quickly there is the possibility of something pinching in there. Anyway it's rare but they do the MRI just in case. Her curve is at 67 degrees and she's been complaining more lately of back pain, etc. I don't remember him mentioning stitches, but I'm going to ask - the dissolving kind sound good to me. We have to be in at 6:00 AM so we're going to stay at a hotel near the hospital the night before (Valentine's!) and it has a shuttle to the hospital. I've heard from others the waiting is the worst of it and I'm beginning to see why! - How about you?
Did she have to donate blood?
Melinda

Mary Lou
01-16-2005, 07:19 AM
Melinda,

My daughter just had posterior spinal fusion December 7, 2004 and she had both an MRI and also a CAT scan before her surgery. I think it is pretty common to have an MRI done before surgery, just to make sure there aren't any problems with the spinal cord, etc. Jamie did donate blood. They wanted four units but she was only able to donate two units and they used both units during her surgery. As for the waiting before surgery, we got lucky--her surgery was just before Christmas so we were busy shopping, make arrangements for at home tutoring, etc. so we were really busy for the few weeks before surgery.

Melinda and Kim,

Have you contacted your daughters' schools yet? I would at least contact the guidance counselor and let them know of the upcoming surgery and get things going from the school's end. They should help you out with setting up homebound tutoring, books in the classroom when they return to school, etc. Best of luck.

Mary Lou

rita
01-16-2005, 07:44 PM
My daughter for her second surgery had staples (and the dissolving stitches) just because she had a staff infection and they did not want it opening up by any chance. They don't hurt but feel weird she said coming out. Her surgery was in 1/2003. She has little white dots along her back and one side seems more pronounced than the other but she is very fair and this may help hidding them more. She will be going for another surgery this year to put back the hardware they took out since she curved again. I hope they use the staples again even though they don't look so great just so she does not get another infection. She actually is okay with the scar. She even wore a semi-backless dress to a banquet last year. She is a pretty well centered teenager. There are some girls nowadays that won't go out of the house with a pimple on their face. Wishing everyone well.
Rita

AC13
01-17-2005, 02:01 PM
Mary Lou: Thanks for the advice. How did your daughter do with the blood draws? AC has never had anything like this done. I have contacted the school and we're meeting with her teachers next week or week after. We are planning to do a 504 Plan which is accommodations for medical reasons - not educational. This will put in place things like her leaving class a bit before everyone else so she's not bumped in halls, having an extra set of books at home, having help carrying her books at school, being excused from PE, etc. But they are saying we won't qualify for tutoring help unless she is out over 4 weeks. Our doctor is predicting it won't be that long but ??? (who knows). I'll contact a private tutor if I have to - especially for the "new" math they are teaching 'cause I sure can't help her with that! One of her teachers told her he would just "excuse her from the work she misses". I don't want that either though in case she misses something important. Thanks for your support!

Rita: Why did they remove the hardware? (If I might ask). I thought they usually left it in. I'm sorry that she has to have another surgery - or was that in the planning all along? You know, the best thing about this situation is that it's teaching our kids to not stress the little stuff!! :) Best wishes!
Melinda

rita
01-17-2005, 02:45 PM
Melinda,
They took the hardware out because the first surgery she received a staff infection from this and they said that it would not go away since the metal keeps the infection in her body since it attaches for some reason medically I can't remember at the moment. The doctor stated she was fused and would not curve anymore but here we are again having another operation. I even said she looked like she did curve and was told she didn't. I think I know my own childs body. I have an x-ray that we were given 11 months after her hardware was taken out and put it up against the new one we got recently and they look pretty much the same. I can't wait for the next doctors appointment to have it measured and to prove my daughter and I were right and the doctor was wrong. I just hate being lied to. I would have brought it to the local doctor here but it for some reason was in another envelope. What I have been seeing on these forums is that you can even curve after you have finished growing and are an adult. I just don't think they tried hard enough to get rid of the infection especially when I have seen on these boards that it can be accomplished. I guess no mother wants their child to go through this once but to have it done 3 times and two during her high school years is a shame. Any other questions, let me know.
Rita

Mary Lou
01-17-2005, 05:51 PM
Melinda,

How old is your daughter? Jamie is 13 (and in the 8th grade) and did just fine with the blood donation. If she is able to donate, great, but don't sweat it if she can't. Depending on your insurance, you, your husband or someone else could donate for her.

I'm glad you've talked to the school already. Jamie's school has been great. She had a note from the doctor for homebound tutoring for up to six weeks (district allows five hours per week)--she had a total of 2 1/2 hours! She returned to school 1/2 days one day shy of being four weeks post-op. The doctor said she could return full days this Wednesday, but I convinced them to let her start back next Monday as the marking periods ends this Friday and it would just be less hassle. One thing I suggest that you might not have thought about yet, talk to the school and find out how they will handle fire drills once she returns. The principal tells Jamie's teacher ahead of time and she leaves and goes to the office.

If you have any other questions, please ask. The more informed you are, the better off you and your daughter will be.

Rita,

My heart goes out to you and your daughter! I agree--it is hard enough to go through this once, let alone three times. I see you are from PA, may I ask the general area? We are about 15 minutes from Harrisburg and Jamie goes to the Children's Hospital in Hershey. Where is your daughter being treated?



Mary Lou

Littleone1016
01-17-2005, 06:08 PM
My rods were taken out out 13 months after they put them in for the same reason as your daughter (staph infection). I was told that when the infection doesnt show up right away that it slowly builds up to the point that pretty much nothing but taking out the rods will stop the infection. The way my doctor explained it to me was that my body rejected having the rods and the only way to stop further infection was to take out the bars. I too was about 13 at the time.
If I can put my two cents in about what your daughter has to go though for school and how I dealt with it. I had a terrible time in school, especially jr. high. The first thing I did was deal with the adults. If your daughter feel comfortable talking about it, have her sit down with all her teachers and tell them what SHE thinks she might need in class. Many times the teacher will go above and beyond what the district will do. I had to fight to get a second set of books, because that just wasnt done. Another really helpful thing for me, again if your daughter is comfortable with it, is to ask for some time from the teacher when school starts (or wherever she is in the school year) and take 15 or 20 mins to explain to the class what is wrong with her, show off her brace maybe even explain that she can't bend or pick things up well. This made a big difference in the kids in my class. They didn't have to like me but it took the bit out of making fun of someone when that person didn't care who knows whats wrong. I'd be more than happy to help her gather a few interesting facts (like how in midevil times they would put you on a stretch machine and stretch you for hours at a time thinking the back would un-curve itself) and the basics to tell her classes if you would like me too.
Kids can be so cruel and there were many days that I went home crying to my mom about what kids have said...it went far enough that I almost got a restraining order on a few kids who found out where I lived and tormented me. Most people don't have to deal that, but showing other's that you are comfortable with yourself takes alot of wind out of the sails of most bullies.

rita
01-17-2005, 07:15 PM
We live in Nazareth and we hope to get approved at the Shriners Children Hospital in Philadelphia. Dr. Betz is who we would see. The ortho doctor that we had to see in this area is not up on these types of surgeries. We actually had to change doctors so this one was recommended. We needed a recommendation from a ortho doctor and were given Shriners. We went to her old doctor in 2003 and then a foot doctor and a neurologist to see why her feet were numb and tingly. All these tests and nothing. I kept asking them if it could be that she curved and everyone of these doctors said no. The surgeon as I said before said no. Don't get me started on this again. Anyway who is your daughter seeing in Hershey? That is the next place we will go to after we see what happens to Shriners. We went to Dupont in Deleware and that is where her old doctor was. Let me know of any doctors you researched and how you like the one you have. Thanks.
Rita

rita
01-17-2005, 07:21 PM
Littleone,
We were told that the metal in the rods were what was keeping the infection in her body. Infections attach to the metal and are hard to get rid of. I also understood this infection to be that if the rods were not taken out it would not go away but have seen others on these forums that did take antibiotics and the infections went away. The only thing they tried was bioxin and this was given to her by the general doctor and nothing was even tried by the ortho doctor. Question: How old are you now and have you curved any after the rods were taken out? How long has it been since they were removed? Just curious. Thanks
Rita

AC13
01-17-2005, 10:45 PM
Rita: You are so right - Mom's just KNOW when something is wrong. Doctors need to start honoring that and listening to concerns. How frustrating to have to go through that and I hope you are proven right and the doctor has to apologize!! :)

Mary Lou: AC is 13 1/2 and in 8th grade too!! She is doing really well - not too scared or nervous yet. She is taking flute lessons and just talked to her teacher today who has been through surgery (I'm not sure what kind) but could relate and was able to ease her mind a little bit. 4 weeks wow! Oh, I hope she can go back that soon. Thanks for the idea on the fire drills - something that hadn't even entered my mind! We are meeting soon with teachers and school nurse to go over everything.
I think AC is most concerned about pain, IV/catheter, and privacy (bathroom). One thing I think is kind of strange is she has said she doesn't want us in there when she is out, watching her and waiting for her to wake up. I told her too bad, we will be there! :)

Littleone1016
01-18-2005, 12:31 AM
Rita-
I am 24 years old now. My last back surgery was the rods were taken out I was 13 or 14. They fused a few more vertabrae up after the rods were taken out so I am now fused from T-12 to T-2. Apparently the bars were in there long enough for the bone to fuse well so I am happy to report that in those areas I have had no further curve. Unfortunally I also have Kyphosis so they are slightly concerned that in time the spine will curve from the fusion up toward my neck, causing me to have problems keeping my neck and head up straight. They told me that the problems isn't bad enough to worry about now but that they were going to keep an eye on it to make sure.
Also, if it makes you feel any better about you having to prove your daughter's doctor wrong, my mom did the same thing. My doctor was one of the best pediatric orthopedic scoliosis doctors in my area (san diego california) but he had NO bedside mannor at all. We were lucky if he would explain much of anything to myself or my parents. He spoke like i was not even in the room and used me for guinea pig for all his interns to learn about my operation. One day he actually spent more than 5 mins with us explaining something and my mom grabed his hand before he left and gave him a heartfelt thanks (much of it sarcastic) for spending the time to make sure we understood what was going on. He did not like my mom, she was very opinionated and wanted to know and learn as much as possible. He didn't have time for it. BUT, from that day on he actually used my name when refering to me and always spent at least 15 mins with when we saw him. It pays sometimes to be in a doctor's face, and not just take what he says like it's carved in stone. Plus I know how much my parents cared and they wanted me to understand as much as i could about what was wrong with me and what needed to be done.

Mary Lou
01-18-2005, 05:36 AM
Melinda,

This is so weird--13, 8th grade and Jamie plays the flute as well! Tell your daughter you won't be allowed to "sit and watch her and wait for her to wake up." We were called at 5:00 p.m. and told Jamie was going to recovery and it was 6:00 p.m. until I could see her. She was so wide awake! Also, tell her for the first few days she won't care about privacy in the bathroom or anywhere else! lol Tell her Jamie's pain was well managed. You have to help her with this. If you think she is in pain, speak up! Keep track of what medications they give her and what time. Encourage her to use the pain pump which should give her Morphine and keep her comfortable. As for the fire drills, it was one of those stupid things I thought about for some reason and also discussed it with two other moms here whose daughters returned to school the same day as Jamie and they hadn't thought about it either. That's what we are here for--to help and encourage one another and to get as much info. as we can.

Take care. I have to run for now. Rita, I will respond to you later.

Mary Lou

Mary Lou
01-18-2005, 10:59 AM
Rita,

I think you will be very pleased with Dr. Betz. Jamie was seen by Dr. Betz in July 2004. I would have left him do Jamie's surgery in a heart beat. Everyone at Shriner's was wonderful to all of us. We personally went to Shriner's to be seen by Dr. Betz. However, his surgery schedule is crazy and we were told it could be up to a year before we could get into his surgery schedule and Jamie didn't want to wait that long. She wanted all of this behind her before entering high school. I've heard his associate, Dr. D'Andrea is wonderful as well. Jamie is seen by Dr. Lee Segal at Hershey. We've seen three of the doctors at Hershey. First two we weren't happy with at all. Dr. Segal, however is wonderful! Feel free to e-mail me if you want details. I am disappointed to hear of your problems with DuPont Clinic. That is where our family doctor recommended going if we weren't happy in Hershey.

Mary Lou

rita
01-18-2005, 02:01 PM
To AC13's mom.

Sorry if I got that wrong, name wise. Anyway hopital has a shared bathroom unless you get a private room. The first couple of days it is a bed pan anyway but they close the curtain. Also they did not let us in the recovery area until she did wake up. Just a thought. I did stay with her until they wheeled her into the operating room. When she comes out of surgery they will want you there. They are in pain and just to let you know if you did not, there face is very puffy. This is normal so don't get scared. Also a nurse is with them regulating their pain medication. My daughter did not even remember most of the time spent in the recovery rooom so you daughter will not know you are there anyway or atleast remember it if she is like my daughter. They will want you there, for just at least to whine a bit to you. They have every right to whine in that kind of pain. If you are staying in the hospital with her, you will get woken up many times since the pain medications after you are off the iv are given to them not so fast since they are usually busy at night. Any questions ask.
Rita

pat
01-18-2005, 06:46 PM
I'm repeating what Mary Lou said about keeping track of her pain meds in the hospital BECAUSE, one time they sent us down to x-rays, and her pain meds were due within the hour, and we barely got back in time, but couldn't find the nurse, and for that one hour (off the iv pump at that point), we waited for the oral meds to arrive and then for them to "kick in," it was awful; the worst pain she had. It should have never happened (and it won't with you), you just have to keep track of the next time the pain meds are due, and hunt down the nurse if you need to! Really! Pat

rita
01-18-2005, 09:12 PM
Littleone1016,

Thanks for the info. I emailed another forum person who is now 24 and she had a staph infection and they actually did not take her rods out. This is three I have seen so far. One was on antibiotics for a year. The other never said but this lady today told me she was reoperated on but the rods were not taken out. I have to email her back to find out that reason. I really think that it just depends on the doctor, knowledge, the doctors schedule or sometimes I think that the hospital or doctor just wants to make more money. Did they try anything to rid you of your infection at all? I do not necessarily like taking lots of medications but a year on antibiotics is better than another major surgery. The other lady also said to me that her mother worked for lawyers and they did not seem to think that the hospital could be sued since it is hard to prove if it was actually their fault. I can understand the infection but not the treatment. Then to be told she did not curve. As I said before, I can't wait for that measurement to be done on her xray. I truly think we were lied to when we asked if she curved so we would not think about coming back to him. Because of this infection, I think this doctor actually came and spent more time with us a couple of the days and even gave us a private room that was used for contagious patients. At first we thought my daughter got this room because a doctor from Infectious Disease came to see her a couple of times. We were actually scared. What the heck did she have that was contagious. We soon found out that they do this for any type of infections, the infectious disease doctor. The private room was to more or less say he is sorry he gave my daughter an infection and sorry she had to have another operation. A private room was cool but rather have an apology. Well now that it is a third one, and he will not be her doctor again, I plan on writing him to say how unhappy I am. I heard you can report doctors to some board. I doubt that I can get my daughter any compensation legally but just to let that doctor know what he did to my daughter could have been avoided or at least let him know he was very wrong. I have written many a letter being dissatisfied with products and such and one more letter will not be a problem for me. I need to center on my daughter and not worry about this for now. We are anxious to see if she is approved at Shriners. I hope to know in a week. As for the school, well she has been through it twice now and she has had no problems with kids or teachers or getting books. They let her leave class early and someone is assigned to carry her books and even get to take the elevator. She had her own key to it. Since she did not think she could sit in those hard chairs, the teachers found cushion chairs for her in all but one class. She had to sit at a table but she was fine with that. She also just brought her note in from the doctor about the books, chair and class dismissal time. The teachers all felt bad for her but they should and this worked out for many reasons. It is a shame you had to endure those bad kids. As for any facts like the medieval stretching would be nice if you sent it to me. Send it from here in an email. No need to post it here if you don't want to. She may need it. My daughter said she never had anyone make fun of her. But it would not hurt to be prepared in case. I thought they used those strecthing things for making you taller. I had not clue it was used for curves also. Interesting. Thanks.
Rita

AC13
01-18-2005, 09:22 PM
Thanks to all of you - you are my lifeline!!!
These are things I haven't even thought of, the only time (thank God) we've been in the hospital is with her and her sibs births. By the way, AC was born 1 mo. premature - anybody else have that happen - I always wondered if maybe that had something to do with scoliosis. Doctors didn't think so, but...? Okay, it sounds like we won't be there when she wakes up - too bad. That is a worry of mine - that she won't be taken care of if I'm not right there. (Am I being overprotective?) Will she have a catheter? She'll be on her tummy for a while right? And how long on pump? I want to ask the doctor if he can start IV after she is out - some will do that right? She goes for blood draws next Tuesday and the Tuesday after and then the Tuesday after that is her pre-op and the Tuesday after that surgery. Looks like we meet with teachers, principal and nurse on 2/3. What a schedule!
Thanks again!
Melinda

rita
01-18-2005, 09:59 PM
AC13,

You are welcome. I wish I had this forum the first time around. When I had my daughter, my water broke and she did not even give me any pain. They even gave me drugs to induce labor but it did not do the trick. A few cramps is all I felt. They had to take her C-section. She was on time also. Scoliosis can be heriditary. Don't you ever stop being overprotective. She is your blood and if someone feels that way, shame on them. We all want the best for our children. Actually come to think about it, they start waking up in the operating room. Then they are moved into recovery and are somewhat awake. The pain drugs make you sleep on and off. You will see her as soon as they get her into recovery. You can tell if she needs more pain meds. If you feel she is too uncomfortable they will just call the doctor and ask if they can up the dosage. I asked since my daughter looked far too uncomfortable. Another poster said to remember when the meds are given, iv or pills, I wrote them down. You are tired and will forget them. Believe it or not, my daughter remembered exactly what time she took everything, even when she was half asleep. Yes, she will have a catheter but I think for just two days. That depends on how clear it is, if I remember correctly. Actually she will not be on her tummy. My daughter was on her back first thing. They pack that incision so good you would think there was a river flowing down it. Both surgeries were different on the pump for my daughter. The first was more but she knew the meds made her sick to her stomach and she wanted to get off them as soon as she could. This will depend on your daughter. (I guess she did not want to throw up in her Aunts hands again. That was embarrasing) You have no choice for the IV. This she will get anyway. Blood draws - just a suggestion. My daughter and I went to Red Lobster after one and she got sick after lunch. It may have been the blood draw or just the food. Just not sure. Have a big ziploc in the car with you just in case. The other blood draws went fine though. Since it was the first she may have just worked herself up about it. Just not sure why. As for you being so busy, it will be a blessing in disguise. Less to think about and less time to worry also. Good luck.
Rita

Mary Lou
01-19-2005, 05:42 AM
Melinda,

Don't worry too much about the IV. The resident who tried to start Jamie's numbed her hand first (maybe you can ask for this) and said he would make one attempt. He failed. They actually started her's in the O.R. while awake, but only after asking her if she would prefer they try again or give her a gas mask. Is your daughter taking iron pills? If not, she will need to start taking them a.s.a.p. because she will need her iron count up in order to draw blood. Jamie was given iron pills in the hospital and continued for awhile at home.

Keep what Pat and I have said about pain meds in mind. The pain control is very important. We were told to expect Jamie to be in the hospital for about one week after surgery. She left the hospital two days before that. You will be amazed at how well most children do. As for infection, they started Jamie on antibiotic through her IV in the O.R. and continued them for two days afterwards. Rita, did you daughter receive antibiotics pre-op?

Jamie just started playing her flute recently. We joke with her and tell her she is going to get all the flute players in band in trouble for their bad posture.

Hi Pat! I hope things are still going well for you. Jamie is six weeks post-op now (wow, how time flies) and doing well.

Mary Lou

rita
01-19-2005, 06:32 AM
Mary Lou,

She did not get antibiotics prior to the day of surgery. I think I do recall that she did get them during the operation by IV. I think that is too late. Not sure who it was on this forum that said they got them a week or so before. I will definetly ask for this from the surgeon. I don't want to take anymore chances. My daughter had to take the iron also before her blood donations.
Rita

pat
01-19-2005, 10:40 AM
Hi Melinda!
Your daughter will not be on her tummy after surgery for a long long time (weeks/months); I thought the same as you, that she'd be on her stomach, but no!

Hi Mary Lou! All is well here; funny, they do have beautiful posture our girls, don't they!? My Jamie's tall too! Almost my height (I'm 5'8", and she's closing the gap now!) Your Jamie's doing well, yes?! Can't wait to hear how your next post-op appt. goes.
pat

celestin1170
01-20-2005, 08:01 AM
Hello everybody..sorry it takes me so long to respond on here. I don't get on here much these days.

Melinda:
Keri wasn't able to donate her own blood because she doesn't weigh enough. The Red Cross wouldn't allow it. We are going to go with the blood bank instead. It's very expensive to find a donor! If we wanted to go with a family member then it was going to cost us $65 for each person they had to test to find a match! And our insurance didn't cover any of that. At least the blood bank is free.
Everyone is right. The waiting is the worst part I think. We are coming down to the wire now and i'm getting more nervous by the day. Keri seems to be ok..she doesn't even talk about it. We have alot of family that is going to be there with us that day so they will at least be able to try to help me keep my sanity!

Mary Lou:
We have been in contact with the school since we found out that she would need to have surgery. They have already found a tutor for her and she will be all set when she comes home. We have to contact the school when she's home and then they'll set up a schedule for him to come. All her friends are excited for the tutor to come...he's a really cute teacher at school and they all drool over him...LOL Teenagers :rolleyes:

I will keep in contact with you through the next few days, and i'll let everyone know how we did as soon as I can after her surgery.

Kim
Keri's mom