Pre-op with Dr. Lenke Wednesday...

[amae28]

Well I am leaving for St. Louis tommorrow night with my mom and meeting my dad there for all my pre-op appointments on Wednesday morning/afternoon. I am a bit nervous just to see what Dr. Lenke is going to say after all of my bending x-rays, etc... I don't even know why. When I went initially he recommended that I have surgery based on the combonation of my scoliiosis and kyphosis and the rotation I have. I think I'm just afraid he's going to change his mind even though he had a pretty confident recommendation... and starting all over again in this process would be a nightmare for me.

Dr. Lenke sent me a big packet in the mail with two different studies he wants me to be a part of- one is being conducted by his colleague on the genetics behind scoliosis and they will just be drawing blood from my iv line when i am there for surgery. I am rather excited about this one because my dad/sister/grandma all have mild-moderate kyphosis that hasn't been treated and I had a little brother who died at birth with severe spina bifida. I however am the only one with scoliosis. It would be cool to link these all together. The other one is just a self-image study that Dr. Lenke is doing. Did anyone else that sees/saw Dr. Lenke participate in these? ...just wondering...

Also, I think I will be donating blood while I am there. I am supposed to give two units, but my parents wanted to donate them. I told them that I wanted to donate one of my own, and I don't even know that I want to put one of them through donating the other one because my mom currently is on antibiotics for a double inner ear infection and is taking high blood pressure medication. My dad has never donated blood but if anyone maybe he'll be able to do it.

Any advice or good questions to ask would be really appreciated!!! Especially from those of you who go to Dr. Lenke!!

[Wishing]

Dear Abbie,

Good luck to you on your pre-op appointment on Wednesday. You will havea busy day with all the x-rays, MRI's etc. I know that this is an anxious time, but you'll do fine. Just ask Dr.Lenke about what your tests, MRI's etc. reveal and any questions you have about the surgery and your stay in the hospital. I am sure Dr.Lenke will recommend and do what is the best for you. I had my pre-op a few weeks ago. I am somewhat claustophobic, so I found closing my eyes before I was slid into the MRI and keeping them closed helped. I asked the technician to pull me out if I asked and also to let me know how long each segment of the test lasted. This helped me to relax. I told myself that if Dr.Lenke was going to be working hard performing a long surgery on me, then going through the MRI's was my job. I was tired at the end of the day and also afraid he would change his mind, that my brain was fairly blank during my visit. I also have some questionaires for some studies to fill out. My surgery is still scheduled as planned on June 16th. I am sure you visit will go well. Take care.

[Susie*Bee]

Abbie-- I'm thinking of you too! There was a thread awhile ago about what to expect at pre-ops, and it looked like everyone was different. Some have more tests than others. You'll at least get a basic run-through of what's going to happen, where you'll be, and that kind of stuff. Plus a lot of standard smaller (in my mind) tests and lab work. And I think they'll get your medical history and all that kind of stuff. It will probably be a long day, but an exciting step drawing you closer to your big surgery day!

That's pretty neat that you will be part of two studies. They both sound interesting!

Isn't that funny (as in peculiar) how so many of us think "what if my doctor changes his mind"!!!! I am sure that he wouldn't have brought you this far towards your surgery and then change... so don't worry about that. You are in excellent hands and it should all go well. And soon you can check one more thing off your "things to do leading up to surgery" list. Good luck with the blood donations too. I'm thinking of you! Susie

[loves to skate]

loves to skate

Hi Abbie,
The only info I can offer you is that having formerly drawn blood donors, your Mother will not be able to donate blood if she is on antibiotics. There could still be bacteria in her system and you only need one bacterium in a pint of blood for it to start to multiply even though the blood is refrigerated. Suzie is right. The Dr. needs all of thoses xrays, etc. to determine his course of action for your surgery. He is not going to change his mind.
Best wishes and try to relax. Sally

[Sherie]

Hi Abbie

Sheena also participated in 2 studies, the self image one and one pertaining to the use of blood during surgery. They're trying to determine if it's necessary to pre-donate atologous units. We haven't had to do anything on either study since surgery but I would imagine they would want to follow up at some point on the self image one. It was interesting to compare what I said vs what Sheena said, we had very different responses to the reasons for wanting surgery and I found out that she was more self-conscious than she let on.

If I had known what a difficult time we were going to encounter concerning meds in the hospital, I would have asked a lot more about that. The transition from morphine to orals wasn't easy. There's a seperate pain management team at the children's hospital and I don't think Dr. Lenke was very pleased with how things were being handled.

Best wishes to you!

[amae28]

Thank you all for your responses, they were really encouraging and helpful.

We are driving back to Kansas City right now actually, and it has been a really long day! We were in St. Louis last night and got up at 5:30 this morning to drive into the city for my early radiology appointment. The x-rays alone took about an hour as Lenke wanted about ten different angles, all in film rather than digital. My appointment to see Lenke was at 9:00 but we didn't get in to see him until about noon. Luckily though I went downstairs and knocked out the bloodwork and EKG while we were waiting. Lenke didn't change his mind, and I guess I'm going through with it. It was just weird signing all those forms with my parents there- they kept saying... "this is your decision!" and being 20 I just felt like they should be helping me but in reality it is my decision and my back that I am going to have to live with. We had a pulmonology appointment at 3 so we were out by about 3:30. (I didn't have to do MRI's there because I had them done about a year ago... Lenke said I have a beautiful spinal cord and he wanted to show it "to the kids" aka students, haha).

I will be fused T3-L1, but I don't have an L5 vertebrae so I'll have 4? disks to work with for flexibility. We didn't donate blood there because I guess we haven't quite hit the 5 week beforehand mark yet until the 27th. I think I am going to donate one and maybe I'll hit up my little brother for the other- poor guy!! I just think that my dad will pass out, he's never given blood and he was completely white in the office today just being around everything. Anyways, I'll be asking for more advice as the time gets closer.

Anyone stay at the hotel above applebees when they were there?

[Wishing]

Hi Abbie,

It sounds like you did really well today. Congratulations. I bet you are really tired though. Good luck on all your preparations and blood donations. My husband and step-son will probably be donating for me. My husband said, "This may turn you into a blood relative and I'm not sure I can be married to you anymore." Just kidding, of course. We also stay at the Parkway Hotel above Applebee's. It is so very convenient. Wishing you the best. You have been very encouraging to others on the forum.
Rita

[Sherie]

We had a room at the Parkway, it was very nice and clean. My husband slept there most nights while I stayed in the room with Sheena.

Also the staff at the children's hospital were amazing. I can't give them enough praise. I hope you'll have as good an experience at BJ.

I'm amazed at how quickly the time has passed. It's already been 6 months and it's all still very clear in my mind, guess you don't forget an experience like this. Sheena's doing well, I know you've heard this a thousand times, but it's such a relief to be on the other side of surgery.

By the way, did I ever show you her before and afters? Dr. Lenke's nurse put together a nice one page document of all her pre and post op photos and xrays. Let me know if you'd like to see them.

Take care.