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Jennilee
11-09-2012, 09:12 AM
Hello! I'm meeting with my scoliosis surgeon today for the first time. Well I have 2 surgeons doing the operation, a spine specialist and a scoli specialist. I've met with the spine surgeon(dr Robertson) twice and today is mostly for questions and to meet dr eberson and set the actual date for the first week of January. Does anyone have any suggestions on the kind of questions I should ask? I am so overwhelmed and anxious that I can't think straight lately on top of quitting smoking 3 weeks ago for surgery. My mind us spinning and I know I need to be as prepared as possible as I probably won't get another chance to really ask questions before surgery. The first surgeon mentioned thoracotomy for my rib hump but Linda Racine advised me that procedure isn't really preformed anymore bc of morbidity rates..I don't know...I feel like an air head but I just can't think straight so any suggestions would be greatly appreciated!!! Again, thank you all for welcoming me to the forum! I think I might have confused thoracotomy with thoracoplasty. There's one question!!

rohrer01
11-09-2012, 09:45 AM
You might ask about blood conservation techniques and the use of epogen and cell salvage, since that topic came up on another thread. You might also ask if he is planning on using BMP to help with the bone graft or is he planning on harvesting your own bone from your hip. I haven't had surgery, but those are questions I would ask when the time comes.

GOE
11-09-2012, 09:50 AM
Hello! I'm meeting with my scoliosis surgeon today for the first time. Well I have 2 surgeons doing the operation, a spine specialist and a scoli specialist. I've met with the spine surgeon(dr Robertson) twice and today is mostly for questions and to meet dr eberson and set the actual date for the first week of January. Does anyone have any suggestions on the kind of questions I should ask? I am so overwhelmed and anxious that I can't think straight lately on top of quitting smoking 3 weeks ago for surgery. My mind us spinning and I know I need to be as prepared as possible as I probably won't get another chance to really ask questions before surgery. The first surgeon mentioned thoracotomy for my rib hump but Linda Racine advised me that procedure isn't really preformed anymore bc of morbidity rates..I don't know...I feel like an air head but I just can't think straight so any suggestions would be greatly appreciated!!! Again, thank you all for welcoming me to the forum! I think I might have confused thoracotomy with thoracoplasty. There's one question!!

Hello Jennilee -

Just wanted to send you a quick note to encourage you. Please do not feel under too much pressure to get all your questions lined up before your visit. I know I had questions all along the way and still continue to have those even 17 months post op. One good question would be to ask your surgeon the best way to get your follow up questions answered. Some surgeons will respond to emails (mine did) and other will have you route it through their nurse. As suggested on this forum, go prepared with some key themes/concerns you want addressed and then based on that conversation, your follow up questions will come to you. Also I am not absolutely sure but I think a thoracotomy is thesame thing as a thoracoplasty. Plus feel free to discuss with your surgeon why thinks this might be necessary for you. I had some pretty larget curves, my surgeon mentioned a thoracoplasty and I had made peace with that going in. Intra operatively he however decided he did not need to do this as he got a decent correction so to Linda's point, I think they only do this when absolutely necessary given newer techniques that help them achieve good results without it. Take care and stay strong.

Jennilee
11-09-2012, 10:59 AM
Thank you both for your suggestions. I have a pad and pen now and wrote down what you thought we're good questions..I'm feeling less anxious already and just trying to sort out everything on paper. I think your question GOE, about how to get responses to other questions is the most important one of all and that's why I am so grateful to have you all on the forum. Going to get dressed and head on over to the appt. thanks again!

Jennilee
11-10-2012, 08:30 AM
I had an awesome appt with dr eberson yesterday! my mom and i were there with him for an hour and a half with a long list of questions and he took his time and answered every one very thoroughly. he never made me feel like he was in a rush or needed to be somewhere else, he was great. even though he is a pedi scoli dr, he will be doinjg the majority of my surgery along with dr robertson who is the adult spine dr but doesnt do alot of scoliosis but dr robertson will be handling the majority of my preop and postop bc dr eberson did say that both are different for adults and children. oh and Linda, NO thoracoplasty! he agreed with everything that u told me and really believes that after he gets a great correction, he will be able to get rid of the rib hump that way. he said if i am not satisfied with the cosmetics of the hump, i can always revisit the idea of thoracoplasty but he doesnt suggest it. my surgery date is Jan 3, and i will be getting a letter telling me dates for preop and blood donations. they will use my blood as well as cell saver. all in all, i feel so much less anxiety and am getting a game plan together now. cant wait to be on the other side

LindaRacine
11-10-2012, 11:27 AM
Hi Jennilee...

I'm happy that you're comfortable with your surgeons, and hope you have a perfect outcome.

By the way, I believe in your original post, your signature stated that you were having a possible thoracotomy. A thoracotomy is entirely different than a thoracoplasty. Thoracotomy is a large opening to expose the front of the spine. Thoracoplasty is the removal of parts of one or more ribs to reduce the rib hump.

Regards,
Linda

titaniumed
11-10-2012, 11:33 AM
Jennilee

Glad you are comfortable with your surgeons. Thatís important.

You have set your date....its something we think long and hard about and never forget. I remember going back down to work that day and just couldnít think at all. After all the years, I couldnít believe that I finally did it. Its all in the past now, and coming up on 5 years post. (smiley face)

You can plan, or not plan like me. Just wanted you to know that these things donít matter much as long as you are ready mentally....thatís the main thing. Positive attitude will get you where you want to go. This works with everything.

Think and dream about a successful recovery, and never ever look back. Know that its going to hurt, and think of it as just a tough chapter in a book, and that you will get through it. Things are always hard when you donít know, but after you will have that understanding. Major scoliosis surgery is never a piece of cake, but always think and make the best out of it in your mind. You are going to do this.

Keep reading and posting.

If you have any questions, let em rip.

Welcome to the forum

Ed

Jennilee
11-10-2012, 01:30 PM
ed, thank you so much for your encouraging words. aside from being really funny, you always seem to say the right thing!
you are right...setting the date is a huge step. i was dx'd @ 10, but the deformity and progression didnt get out of control until the last few years and since i have been considering surgery, this is all that i can think about.
this surgery is a life changing event for all of us, and i am suffering with horrible pain like so many of us not to mention cosmetically i hate the way i look but i also cant picture myself any other way. scoliosis has been such a huge part of my every day life for so long that its literally a part of me, of who i am. i dont know...i make no sense sometimes and my emotions are all over the place lately...i guess i am just going to give this to God and like you said ed, never look back. i am so grateful to have this space to vent or ask questions...whatever as afterwards i always feel more at peace. especially reading what all of you have gone and are going thru. this will mark a definite new chapter Ed, a painful but great one. and i am ready...time to stop letting this define who ii am.
Linda, thank you! and again, you are right, i learned that yesterday..

titaniumed
11-11-2012, 02:13 AM
As far as defining who we are, we will always be scoliís fused or not, with or without pain. Itís a life long club, and we are part of that club. We just all sit around a cyber table and gather our thoughts here.....Some are active posters, some are not, its really about understanding our issues and knowing what to expect. Attending your local scoliosis meetings is also a good thing, itís a face to face, meet and greet kind of interaction without having to type on a forum. Communication through typing misses the face to face interaction, which can make communication difficult sometimes.

Linda has a great website, I would check it out.
http://scoliosislinks.com/

Preparing for surgery
http://scoliosislinks.com/PreparingforSurgery.htm

I would say that the foam topper for the bed is most important. Most will agree. 2-4 inches thick, latex foam.

Posters usually start posting when pain is out of control or they are making a decision. All we really need to know is whatís going to happen? We can talk to each other and find out how others are doing with each others method. It can be as simple as doing nothing, to having a 10th revision surgery. Those are the heavy threads, those posters truly know about the pain that scoliosis provides. Revision surgery is a correction surgery after initial surgery.

We are truly fortunate that we have this forum, and all the people and surgeons that perform our surgeries. I know that I wouldnít be around without my surgeries, and waited for technology to improve since 1975. Medical technology has come a long way in the last century, at least we have the options that we have compared to all the people that really suffered through the centuries.

David Wolpert wrote a great book. He does a great job answering many questions. I would recommend a copy for the library. (smiley face)
http://www.scoliosis.org/store/books.php

Ed

Wish2bstraight
11-11-2012, 09:14 AM
Thanks Ed,

This list is something that I have been looking for. Wow, going to print this out. I also have a question (among many others), what does BMP stand for? I have noticed this in a number of posts, but am not able to figure out what it means.

Thanks to every one who posts. Iam petrified of having my surgery. I am not in a lot of pain, unless I do certain things like housekeeping, gardening or shopping, then the pain starts, but I noticed that my curve has gotten worse and dr. Glazer informed me that I could end up with so much leg pain, that I won't be able To walk and end up in bed for the rest of my life. Wow, I have two small granddaughters three and a half and three months. I want to enjoy them. So surgery, here income.

titaniumed
11-11-2012, 11:28 AM
Libby,

You should go through the whole site. There is a plethora of info there....

BMP in laymanís terms....? Miracle grow. It grows bone faster.
http://en.wikipedia.org/wiki/Bone_morphogenetic_protein

Unless your surgeon is mentioning that he will use BMP, I wouldnít worry about it. Did he say that he wanted to use it? Did he indicate what levels he would fuse or where he was going to cut?

Do you have a date, or are you in a holding pattern?

Ed

Wish2bstraight
11-11-2012, 03:49 PM
Ed,

The doctor's office is trying to schedule surgery for the week of January 7, just waiting for a date and the insurance to say yes. He mentioned three different surgeries. One is anterior for spacers, second is removing a rib for fusion and the third the big one. there was so much information that I can't remember it all. I have my xrays and mris, so I am going to compare the notes and then send questions to the doctor. my curve is 80 degrees, mostly lumbar, starts around T5. I also have a fracture in L5. I remember him saying that he is going to fuse L5 to sacrum. As far as the bone growth, he mentioned some electrical stimulation device.

Thanks for getting back to me. I'l definitely look up the sites you sent me. I just printed out the 11 page spreadsheet for preparing for Scoliosis to put in my every growing file folder.

Jennilee
11-11-2012, 06:17 PM
Ed, thank you so much, those links were incredibly helpful. I feel like I have so much to get ready in the next 6 weeks. Mostly my emotional well being as I feel like I'm going out of my mind! Question...should I buy a recliner for my bedroom? My room is upstairs and the recliners we have now are part of a sectional DOWN stairs and I don't want to get stranded down on the recliner as there will be a 2 hour window each day where I will be alone. I'm willing to buy one for upstairs to put next to my bed, I just don't know if I need to. Thanks in advance for any suggestions!

Jennilee
11-11-2012, 06:19 PM
Libby, it looks like you will be 4 days after me! I'll be praying for your insurance to go thru and hopefully we can compare notes!! Good luck!

leahdragonfly
11-11-2012, 06:45 PM
Hi Jenilee,

I would advise against buying anything just yet--it's too hard to say what will be comfortable and what won't be. I did best on a very firm, flat hospital bed for at least 5-6 weeks post-op. Anything that was too soft including my own Temperpedic bed felt unsupportive, and even today I am not comfortable on a big, soft couch or recliner.

Lots of soft, comfortable bed pillows are good, though. One for between your knees when you lay on your side, one long, soft one for behind your back, a perfectly comfortable pillow for under your head that supports your neck, etc.

One thing to definitely buy ahead of time are some laxatives to keep on hand. A bottle of Magnesium Citrate (~ $2.00 at any drug store), some Miralax, some Senokot pills or something similar. Most of us needed them all the first weeks while on heavy narcotics. Constipation and bloating can be worse than the actual surgical pain at times, if allowed to go untreated. There are several threads about this unpleasant topic if you need more info.

Best of luck,

Jennilee
11-11-2012, 07:24 PM
Gayle, thank you for the advice...and your right, it's too early to make a purchase like that without knowing how I will feel. As for the pillows, I've already started lol I have a long body pillow and tons of memory pillows and fluffy pillows. Tomorrow I'm going to go to CVS and stock up on the stool softeners, laxatives, etc. I'm terrified of getting backed up like that. My head is spinning from making so many prep lists but I Won't have any help postop really so I'm trying to prepare ahead of time as much as I can.

titaniumed
11-11-2012, 11:01 PM
Jennilee

Donít thank me, thank Linda Racine, its her site! (smiley face)

My site would simply say..... Donít plan at all, just go for it. LOL

(Hey, that was pretty funny....)

I have to admit that I donít agree with using step stools in recovery. Its best to just stay off and donít even think about using one. If fact, if you have one, throw it out! My mother in-laws step stool story with her titanium leg is not a story you want to hear. And all for a cob web. Itís a disaster. Falling is against the rules after spinal surgery. I was going to paint my house myself, but my brain overrode the decision and I hired a painter. A ladder fall is just not worth it.

I agree with Gayle, donít buy a whole lot of stuff. After your release from the hospital, the insurance company will supply the walker, grabber, etc.

Are you doing this solo? Do you live alone?
Ed

titaniumed
11-11-2012, 11:47 PM
Ed,

The doctor's office is trying to schedule surgery for the week of January 7, just waiting for a date and the insurance to say yes. He mentioned three different surgeries. One is anterior for spacers, second is removing a rib for fusion and the third the big one. there was so much information that I can't remember it all. I have my xrays and mris, so I am going to compare the notes and then send questions to the doctor. my curve is 80 degrees, mostly lumbar, starts around T5. I also have a fracture in L5. I remember him saying that he is going to fuse L5 to sacrum. As far as the bone growth, he mentioned some electrical stimulation device.




Libby, I sent you a PM
Ed

Jennilee
11-12-2012, 08:03 AM
ed,
i live with my mom, stepdad and incredible 14 yo daughter. my mom and i dont get along at all and my stepdad is afraid of my mother so he just follows her lead. i dont want to turn my daughter into a nurse although thats going to be hard because shes such a caring, nurturing kid already and we are extremely close. my parents are wonderful grandparents, they just dont care too much for me. i grew up in the state's custody and to make a long story short, never had my dad and my mom just wasnt interested.even though my mom did come to all 3 appts with my surgeons, i think she thinks im faking my pain or exxagerating. i do know she feels guilty because the surgeon asked why wasnt i braced or treated when i was diagnosed at 10. i have told my mom that even if i was braced back then, there isnt any absolute proof that i would never have progressed or needed surgery. ahhhh...its just complicated. but for the most part, i will be on my own after being discharged from the hospital. my mother asked my surgeon if i can go to rehab after the hospital and told me yesterday that she isnt taking any time off of work (my stepdad is the boss so she could take plenty of time off)not even the day of surgery and when i asked her to at least stay the first night with me in the hospital, she said no, thats what the nurses are there for. i will be fine, im sure, just alittle nervous and thats why im trying to prepare as much as i can

mabeckoff
11-12-2012, 10:43 AM
Glad to hear that you have a date for surgery.

kennedy
11-12-2012, 03:42 PM
Good luck with your surgery

loves to skate
11-12-2012, 08:07 PM
Jennilee,
You have received a lot of great advice from this great group of people who have been there and done that. I will be thinking of you.
Sally

titaniumed
11-12-2012, 11:03 PM
ed,
i live with my mom, stepdad and incredible 14 yo daughter. my mom and i dont get along at all and my stepdad is afraid of my mother so he just follows her lead. i dont want to turn my daughter into a nurse although thats going to be hard because shes such a caring, nurturing kid already and we are extremely close. my parents are wonderful grandparents, they just dont care too much for me. i grew up in the state's custody and to make a long story short, never had my dad and my mom just wasnt interested.even though my mom did come to all 3 appts with my surgeons, i think she thinks im faking my pain or exxagerating. i do know she feels guilty because the surgeon asked why wasnt i braced or treated when i was diagnosed at 10. i have told my mom that even if i was braced back then, there isnt any absolute proof that i would never have progressed or needed surgery. ahhhh...its just complicated. but for the most part, i will be on my own after being discharged from the hospital. my mother asked my surgeon if i can go to rehab after the hospital and told me yesterday that she isnt taking any time off of work (my stepdad is the boss so she could take plenty of time off)not even the day of surgery and when i asked her to at least stay the first night with me in the hospital, she said no, thats what the nurses are there for. i will be fine, im sure, just alittle nervous and thats why im trying to prepare as much as i can

I understand completely....There are times that we have to try to figure out why people think what they think, and do what they do, while suffering with our situation. I have also heard the ďoh, its not that badĒ comment before. It makes it harder when your own father has scoliosis and toughs it out.....I never got the sympathy even though I didnít really want it...but then its different being male. I had no one, and knew no one with scoliosis years ago. I thought I was the only one. Those really were the dark ages years ago. My scoliosis was hidden....no-one could tell I had this huge ďSĒ in my back, I was balanced quite well. The attitude was ďHe looks fine, and functions ok, its not that bad.Ē In the meanwhile, I have this overbearing ton of bricks on my shoulders and some day, I have to go in and do brutal deformity surgery. Itís a tough pill to swallow. I had to stay strong.

As a long term scoli with large curves, you know when its time. I was shot at the end, degeneration had run its course, and the pain was overbearing and was full time. When I was at the stage of capitulation, there was this inner feeling inside that drove me, the will to succeed was strong. Yes, I was extremely nervous, but I knew that it was really up to me. Nobody else would understand this or help much with my mindset. My surgeon wanted me ready mentally, this was going to be a rough one....it was more about the mind than anything else. Belief, faith, trust, and knowing that it was going to hurt. This is the important part....

I wouldnít worry much, your going to be in good hands. They wont release you from the hospital unless you can function ok. I was walking, climbing stairs, eating, and had no problems in the bathroom. That 1st shower is heaven....Pain is controlled by the meds, and I can attest that they have some strong stuff. If they inject you, they can knock you out in 4 seconds, and there is NO pain. I was begging for shots all the time. Dilaudid, Morphine, and especially the Lortab.....Ye-ha. When you are out, you are out, there is no feeling at all.

I did my recovery alone....I do like to lick my wounds alone.

Ed

Jennilee
11-13-2012, 07:59 AM
ed,
wow...everything that you said pretty much sums it all up with me. my uncle has scoliosis and his curves were pretty major but he never sought treatment and went into the military and fought in saudi arabia so my family is wondering how bad can scoliosis really be. even though my mother and i are not what you would call close, this is why i wanted her to come to meet both surgeons and get alittle educationon the subject...hoping she would understand and maybe soften just alttle.
you are right, i will be in great hands. i am so confident in both of my surgeons and even though im new to posting here, i have been reading and learning from all of you for several months now and am so grateful to everyone here.
mentally, i am beyond ready. the pain has beaten me down for 3 years now and i know i deserve a better quality of life...my daughter deserves a mom who isnt always hurting or tired from hurting. physically, i am also ready. i have quit smoking which i never thought i could do! by the time i go into surgery, i will be smoke free for 11 weeks and both surgeons said they wanted me to be smoke free for 6-8 weeks. i have been taking a multi vitamin for 6 months, eating right and doing light cardio every night. im ready!!
i am scared of the narcotics as addiction runs in my family but my surgeons are aware of that and i have a therapist who i have been going to forever and she is also aware so i have a foundation ready just in case...
i dont feel alone anymore...even if i dont personally know all of you or talk to you all every day, i now know that there are people who have been there, done that like sally said and understand every single emotion that i am going through. and that is one of the reasons that i know i can do this...with my family or without them.
sally, thank you for your kind words, knowing that i am being thought of is a great feeling, and makes me stronger.
this is definitely my time to heal

jrnyc
11-13-2012, 10:02 AM
Jennilee, congratulations on quitting smoking...
i quit years ago...hardest thing i ever did...
i didn't sleep for weeks, and when i did, i dreamed i was smoking!
i hope it wasn't as hard for you...i was a heavy smoker by the time
i stopped...

"family of origin" troubles can haunt people for years...i have my own...
many more people than one might suspect have such memories....
what can help is the family we create...whether blood, friends, whatever...
so perhaps people on forum are now part of your family of creation...
i am glad you can find help and comfort on this website...

hope your operation is smooth and recovery uneventful...
jess...& Sparky

Jennilee
11-13-2012, 07:01 PM
Jess, hi! I'm so sorry quitting was so hard for you. I did it with chantix which I took for 1 month. It was a HUGE help although right before taking chantix, I was getting pretty sick of smoking but couldn't just quit on my own. I'm not taking it anymore and I feel pretty solid and praying every day to keep it up. Surgery is a huge motivator because both of my surgeons said they would NOT operate if I continued to smoke. Not to mention the fusion might not heal.. I couldn't agree with you more...family is not always blood. In my case that is the way it is and I'm ok with that. Thank you so much for your well wishes! I already have found comfort here and it's a great feeling knowing that its sincere and it's so appreciated!!

golfnut
11-13-2012, 07:19 PM
Jennilee,
Congratulations on your willpower to quit smoking. I'm sure it wasn't easy. Although we can't physcially be there for you, you know we are here for you and will be cheering you on every step of the way before and after your surgery.

Jennilee
11-13-2012, 07:29 PM
Karen, you just brought tears to my eyes..Thank you so much, I can't tell you how much that means to me.