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hasteffen
09-07-2012, 02:38 AM
Ok friends,
I thought I would start a new thread because I didn't want to take over someone else's thread! My surgery is less then a month away. It is coming up so fast! I thought 11 months would take forever to get here and now it is right around the corner. I guess I am starting to experience the what if's... sigh. Probably the reason I am up at 3 am. I think I might feel a little better after my pre op appointment on the 19th of this month. Not knowing the surgical plan is killing me! While I know, any surgery Dr. Lenke does is big stuff I am wondering if it will be T10- L4/5 or if it will be T4-L4/5 or to the sacrum or a combo of the above. I am making an educated guess that it can't be definitive until he sees my thoracic MRI (have no idea why this was not done at the same time as my consult... but anyway it wasn't) bending Xrays and so forth. I sure would like a one and done surgery...I would hate to fuse just the bottom curve and then need to go back and fuse the top. I am also worried about not fusing to the sacrum because of arthritus issues and degenerative issues that will most likely develop over time. Thank goodness, 12 more days until I have the answer to those questions.
I lie awake at night writing farewell letters in my head to my children. My logical brain tells me I will be fine and come through this surgery but man am I causing myself all sorts of stress. Has anyone else done this? I have run out of things to do to keep busy.Just this week I have packed for my surgery, wrote a poem, read 2 novels, and ordered our Christmas cards. What are some ways that you have all releived anxieties before your surgery?

susancook
09-07-2012, 03:02 AM
Hi Heidi! I haven't had surgery...yet...but I read the blog all of the time to help myself get psyched up in case I do. Someone on one of the threads gave a very powerful message that I keep with me. Something like: Once you have made your decision to have surgery and you have TRUST in that surgeon, let go of all of the "what ifs". Your job now is to trust and leave everything to the surgeon that you have trusted. I hear you saying hat you want control over the situation, but the only person that really has control is your doctor. Yes, it would be great to have all of the information, but you will in time. You have a GREAT surgeon...he will take care of you!

I agree with you that it is worrisome to think about the possibility of dying in surgery. First of all, it is EXTREMELY rare. The pain psychologist that I saw at OHSU said that people that "catastrophize" have worse outcomes than those that relax and have confidence/trust. By the way, I only scored average on catastrophizing which surprised me because I thought that I was ole doom and gloom. . So, I decided on that day and when I read the sage advice above, that that is exactly what I would do, just let go of the "what ifs" and go with it when/if I decide to go the surgery route. So, how am I going to do it? Probably call some of the folks that I have met on this blog that are positive and ask them to help me with reassurance. I have some relaxation tapes. It will be a struggle for me because I am afraid too.

So, I hope that this helps you and you may be one of the people that I call next year when I see the surgeon again. You will be OK. I'm pulling for you.
And there is no need to write letters....
HUGS to you, Susan

tae_tap
09-07-2012, 08:24 AM
Heidi,
I am right there with you! I have started writing letters to my children and husband just in case something goes wrong. I keep telling myself that I am excited (which I am in some ways) and keep trying to push the nerves down. At this point prayer is probably the only thing that brings me true peace. It is all in God's hands and His plan is already in place. Take comfort in that and in knowing that many of us are praying for you and your family. If you do find the trick of letting go of the "what if's" please do share.

Tamena

leahdragonfly
09-07-2012, 10:33 AM
Hi Heidi,

This time is the very worst part of the whole deal. The mental torment is just almost unbearable, even for those of us who have absolute confidence in our decision and our surgeon.

What I did that helped was I exercised like crazy every day. I swam super-human numbers of laps (about 3-3.5 miles per day, about double my "regular" workouts), I did the elliptical/cardio machines, and I lifted weights, and strangely I never felt any sore muscles from it. My husband thinks it was because I had so much excess cortisol/stress hormones to use up in my body! Probably true. I was in excellent cardiovascular condition going into surgery.

I asked my surgeon point blank what were my chances of dying during surgery, and he told me I would not die during surgery. He said the people with higher complications had pre-existing cardiac, lung, and other medical conditions. So I felt better about that. Of course I still worried some about it, but that did help.

Once you get your surgical plan I think you will feel a little more peace, too. Other than that, try to keep really busy, eat well, and take a prescription sleep-aid if necessary. I did for the last few weeks and it helped tremendously.

Hang in there, and please do keep us updated.

gardenia
09-07-2012, 02:22 PM
Heidi,
The MAIN thing to fear is yourself and how your brain wanders. If you have confidence in Dr Lenke (which there is no doubt of any top surgeon as he is), then trust him.

He has years of very great experience. He is associated with the top organizations in this field. He has the backing of Washington University which I have never heard of until my daughter was offered acceptance into a PhD program in research. She was flown to several top universities and chose WashU.

You and I must have gone up and down those elevators in CAM, visited several floors for all kind of tests. I had to go to Barnes-Jewish for other tests and got an apptm with a concierge to tour the hospital floor. Believe me, I have been so impressed with this campus and the doctors I've met. I thought that Stanford and UCSF were the best but they are famous, older institutions, and spread out.

Nothing will happen to you while surgery that is not easily detected and corrected without time passing. They are well equipped and Lenke has done so many of these surgeries that there would not be 'ooops' what next? How do I proceed now, let's search in the internet, get me a bandage etc.

I trust Dr Bridwell totally as the technical operator (pilot in an airplane). They do the surgery and then the next year is up to us to suffer the pain, recover, etc. But, the mind must be positive and in the right place. I can easily be persuaded into the dark side and I had gone there in the past 3 weeks because of my surgery date being on-hold (oct 16).

A friend who owns a restaurant is a great friend. I usually visit during off hours as she is not busy. In the past, I had been involved with helping her be more assertive, have more confidence and self esteem. So, 3 weeks ago she just sat down and ask how was my back (and do I want anything to eat or drink) and all I could do is tears down. Every question was answered with don't know... and tears.

She has talked about Reiki many years ago and had offered but I never was too interested. I had purchase chakras bells for another friend living in Buenos Aires 20 years ago and still had no knowledge or interest.

This time she insisted and I was so blah, my vision was that of a cloudy day, and a hard feeling in my chest = depression. She gave me a session of Reiki. That day I went home with my old self again. Next morning I was in tears again but it passes. A week later another session and did not feel any change but my attitude was pretty OK. Then, I felt better on the third quickie. But the 4th was amazing! She had another reiki master and they both worked on me. I am so myself again. Actually, I am not depressed/disappointed about my on-hold date. If it happens fine if not we will see. If Dr Bridwell insists in using BMP and my insurance does not approve the surgery... then, I will have to find someone else. But deep inside, I know it will be resolved.

Either Reiki worked or not, it gave me back old self. It could be religion, exercise, whatever. Take care of the mind first because it is destructive to us and those around us. I have caused so much chaos in my immediate family that I am sorry and will take back control.

Stop writing farewell letters. If you die, family and loved ones will remember how great and strong you were over the years and their lives. One letter is nothing.

You'll be fine. Gardenia

rajma
09-07-2012, 05:16 PM
Make a list of all the things that you want to do once you get well. This will keep you focussed during bad days post surgery
Prepare your home for your recovery including amenities, entertainment, music etc



Ok friends,
I thought I would start a new thread because I didn't want to take over someone else's thread! My surgery is less then a month away. It is coming up so fast! I thought 11 months would take forever to get here and now it is right around the corner. I guess I am starting to experience the what if's... sigh. Probably the reason I am up at 3 am. I think I might feel a little better after my pre op appointment on the 19th of this month. Not knowing the surgical plan is killing me! While I know, any surgery Dr. Lenke does is big stuff I am wondering if it will be T10- L4/5 or if it will be T4-L4/5 or to the sacrum or a combo of the above. I am making an educated guess that it can't be definitive until he sees my thoracic MRI (have no idea why this was not done at the same time as my consult... but anyway it wasn't) bending Xrays and so forth. I sure would like a one and done surgery...I would hate to fuse just the bottom curve and then need to go back and fuse the top. I am also worried about not fusing to the sacrum because of arthritus issues and degenerative issues that will most likely develop over time. Thank goodness, 12 more days until I have the answer to those questions.
I lie awake at night writing farewell letters in my head to my children. My logical brain tells me I will be fine and come through this surgery but man am I causing myself all sorts of stress. Has anyone else done this? I have run out of things to do to keep busy.Just this week I have packed for my surgery, wrote a poem, read 2 novels, and ordered our Christmas cards. What are some ways that you have all releived anxieties before your surgery?

golfnut
09-07-2012, 06:40 PM
Heidi,
I felt exactly as you prior to my surgery, BUT, felt so much better after talking to Dr. Lenke and Kelly the day of my pre-op tests. I started to become excited and focused on the fact that I was going to soon "be on the other side" and on the recovery road with a nice, straight back! You will do just fine.

hasteffen
09-07-2012, 06:41 PM
Thanks all. Today, has been a little better.
I am hoping for a full nights rest tonight!
Thanks for the words of encouragement, it seems like
time is going so slow for me right now.
@ Tamena- Will you keep the forum updated on my recovery?
You can get updates off my face book and paste them in here?
I went out last night with some friends and shopped a little. I bought a few comfy outfits to wear after surgery.
Meantally, I have been really calm and confident until my date got moved up. I am sure I will get there again soon. I am usually a very positive and optimistic person, which is why my sudden thoughts were so disturbing to me.
I scheduled a massage for Tuesday and a facial for Friday... so hopefully that will help me relax a bit! I also bought meals today to freeze for while I am in St. Louis for my family to bake/ heat up. Also a good friend set up a webpage for family and friends to bring us meals after my surgery.
I am also turning into a major germ phob! I feel like I need to wear a mask and gloves or be quarentined to my home. I am worried about getting sick between now and Oct.5th. I am seriously considering wearing a mask on my flights for my pre op! Has anyone done this? Were you worried about getting sick prior to your surgery and if so, what did you do to prevent from getting sick?
Best,
Heidi

Irina
09-07-2012, 06:45 PM
Hi Heidi,

I understand where you are coming from with letters especially since you mentioned that you wrote a poem. But how about writing a different type of letter -support letter to your family while youíre in surgery?

They will be waiting for many long and difficult hours, worrying about you, and waiting for updates. May be you can write a letter where you tell your loved ones not to worry, that youíll be OK, that youíre a fighter and will get thru it, that you caní t wait to wake up and see their faces. Just put a different spin on these lettersÖ

Best of luck with your surgery and please let us know how it went. Iíll be thinking about you.

Irina.

golfnut
09-07-2012, 07:12 PM
Heidi,
I felt exactly as you prior to my surgery, BUT, felt so much better after talking to Dr. Lenke and Kelly the day of my pre-op tests. I started to become excited and focused on the fact that I was going to soon "be on the other side" and on the recovery road with a nice, straight back! You will do just fine.

jane d
09-07-2012, 07:17 PM
Hi, Heidi. I know you will come through surgery really well and have a great recovery. I can honestly say I was at total peace the last couple of weeks before surgery with Dr. Lenke. As I have said before, many friends were praying for us and have continued to do so and I know you know God is in control and will carry you through all of this as He did me. I have had an amazing recovery ( and remember I am 30 years older than you) with much less pain than I thought I would have. I am off all pain meds as of five days ago and I drove for the first time this week. The chief problem I have had is trouble falling asleep as a result of coming off the Vicodin. I had cut it down to once a day, and then once every other day and then stopped Monday. Apparently trouble falling asleep is common when going off it. I know this will resolve in a week or two and I am determined to not take anything for sleep as I never have and don't want to start now. I am walking every day (almost 2 miles today!) I will be praying for you and hope to see you in St. Louis on the 19th.
Jane

hasteffen
09-07-2012, 07:31 PM
Irina- What a great idea! I think you may be on to something...
Karen and Jane Thanks for the words of encouragement! It is comforting.

For those that are interested, this is the poem I wrote the other day. I hope you enjoy
Heaven Bound

Nailed to the cross, I should be,
But thatís the price He paid for me!
A debt so high, no one can repay.
All He asks is to trust and obey.
I try with all my might
To say and do what is right.
To all the lost, I say,
Isnít it time to get on your knees and pray?
The amazing grace that I receive
Can be yours if you believe.
In a world that is dark and grey, with sin all around,
I smile because I know: I am heaven bound.
The shining rays of light I see,
It is the Holy Spirit engulfing me.
Thankful for His wondrous love that I have found,
So in love, I am heaven bound!


Anyways, thought I would share.

jane d
09-07-2012, 08:12 PM
What a blessing. You are gifted!
Jane

susancook
09-07-2012, 09:35 PM
I have had a bad day with lots of severe sciatic pain that radiates to my thigh. I hope to get an injection of Cortisone on Thursday. All of your comments have brought me to tears and I will keep all of your sage advice in my scoliosis notebook...yes, maybe a little bit anal but I keep everything about my appointemts as well as suggestions from the forum in a 3 ring notebook. Heidi, I love your poem and I know that you will find peace and reassurance in your belief. Just relax and turn your worry over to God.

Since Gayle and I have the same doctor, I shall ask him point blank about my concerns. like everyone's of not making it through the surgery. Hope that he doesn't say that I am a little old lady and good luck! Guess that i should get on Gayle's regime of exercise [no worry Gayle, I'll never match you!] and the suggestion about reiki was helpful.

This thread and the forum have helped me come to peace about my scoliosis and now I'm just going to go with what happens.

My gratitude to all that have shared their thoughts.

And Heidi, sounds like you are a very strong woman and you will do very well.

Susan

Irina
09-07-2012, 11:06 PM
Heidi,

What a lovely poem. Do you like to write?

My dad, who is retired now, writes a lot of poems (in Russian), prints them out and gives it to his friends and family. He has several books already. He was an engineer before and never wrote anything, but now he has a lot of free time on his hands and enjoys writing poems and articles for Russian language newspaper. Since you'd have a lot of free time in recovery, may be you can write more and make a book?

Irina.

hasteffen
09-08-2012, 07:13 AM
My writings come and go. Sometimes, I write many things and then years will pass before I write anything else. I usually write about major things happening in my life, like a new relationship (when I was younger)or about tragic things like when my sister almost died, to when my oldest daughter had heart surgery. I guess I write when I need an emotional outlet...didn't realize that until just now :) ! Usually, the words just come to me.
I should probably have a notebook nearby for the next year or so!
Thanks all!
Best,
Heidi

TwinmomTN
09-08-2012, 11:48 AM
Heidi,

You are a very talented writer! For post- op, you might make a list of movies for you to watch since at least
for me concentrating enough to read was out of the question. Those first few weeks I slept quite a bit. You are younger than most here so you have that on your side as well.

Pam

tae_tap
09-08-2012, 02:41 PM
Thanks all. Today, has been a little better.
I am hoping for a full nights rest tonight!
Thanks for the words of encouragement, it seems like
time is going so slow for me right now.
@ Tamena- Will you keep the forum updated on my recovery?
You can get updates off my face book and paste them in here?
I went out last night with some friends and shopped a little. I bought a few comfy outfits to wear after surgery.
Meantally, I have been really calm and confident until my date got moved up. I am sure I will get there again soon. I am usually a very positive and optimistic person, which is why my sudden thoughts were so disturbing to me.
I scheduled a massage for Tuesday and a facial for Friday... so hopefully that will help me relax a bit! I also bought meals today to freeze for while I am in St. Louis for my family to bake/ heat up. Also a good friend set up a webpage for family and friends to bring us meals after my surgery.
I am also turning into a major germ phob! I feel like I need to wear a mask and gloves or be quarentined to my home. I am worried about getting sick between now and Oct.5th. I am seriously considering wearing a mask on my flights for my pre op! Has anyone done this? Were you worried about getting sick prior to your surgery and if so, what did you do to prevent from getting sick?
Best,
Heidi
Heidi,

I will defiantly keep the post up to date. If you need anything let me know. I am only a few hours away from St. Louis.
Tamena

hasteffen
09-12-2012, 08:33 AM
Well, one more week until my pre op appt. I am so looking forward to meeting Evelyn and seeing Laurie and Jane again! Last night I spent about 5 hours in the Emergency room because my son fell and hit the side of his head. Everything turned out fine. My back hurt so bad by the time we were leaving that I was thinking I probably should have been the one seen by the Dr. I am also a little OCD about catching a cold right now and sitting in the ER last night didn't calm any fears about me getting sick before my surgery!
I love that we have this outlet to 'speak' our concerns and to share our stories. thanks to all!
Best,
Heidi

kennedy
09-12-2012, 09:40 AM
heidi im sorry about your son. good luck with your pre-op

susancook
09-12-2012, 11:07 PM
Wishing you a germ free week. So sorry about your son. Re: having back pain waiting around in a hospital: I have been known to lay down on the floor in a waiting room when the wait is too long. After 20 minutes in line at the Pharmacy at OHSU, I laid down on the floor in line. They got the hint that they were too slow. Do whatever you need to do to decrease pain.

Wishing you the best of luck! Susan

hasteffen
09-14-2012, 09:15 PM
Susan,
What a vivid picture you have painted in my mind! It has been a few days since the hospital and my back and neck are still hurting. It seems like no amount of vicodin or flexeril or advil is working. Praying that I am one of the patients that feels a significant reduction in pain.
Tomorrow is a big day for my family. We are celebrating my son's birthday! We decided to have his party 6 weeks early so that I may enjoy his day with him. His birthday is 3 weeks after my surgery. He is so excited to be turning 4.
I am sure my back will be begging and calling for my bed by early afternoon. I think I will be thankful that my surgery is not to far off...

djkinkead
09-14-2012, 09:57 PM
Hi Heidi,

Loved your poem, especially the last line: So in love, I am heaven bound!

Yes, I also went through the worrying--but as the Bible states, "worry about nothing, instead pray about everything".

I was very fortunate--and grateful my spinal surgeon prayed with me before the surgery.

In the end, you place yourself in God's hands--that he will guide the surgeon and the rest of the staff working on you.

Will be saying prayers for you.

BTW, just getting off a flight myself, the mask over your face won't really help you not catch any illnesses--using a hand sanitizer and washing your hands throughout the airport travel will be more effective.

Cherelli
09-15-2012, 10:01 AM
Hello, Heidi,

My pre-op with Dr. Lenke is also September 19 (sugery Oct. 19; fusion T-2--L-3) and I, too, am stressing and obsessing. I would love to connect with you and I would also like very much to make contact with anyone out there who is a few months post-op and would be willing to share experiences. I have huge faith in Dr. Lenke, but let's face it, this is a scary experience no matter what!

This is my first post and I'm hoping to find some comeraderie and support (my family is awesomely supportive but ....)

Thanks hugely!

Cheryl (Cherelli) in Charleston, SC

golfnut
09-15-2012, 02:12 PM
Cherelli,
I sent a reply to your PM. Did you get it?

hasteffen
09-15-2012, 02:26 PM
Thanks for the compliments!
Cheryl- I just sent you a PM. Would love to meet you as well

My son had a lovely birthday party and now I am off to take a nap...

hasteffen
09-17-2012, 02:57 PM
Well, we are packed and ready to go! We will leave in the morning and get to St. Louis early tomorrow evening. I will update everyone on Thursday or Friday as to what my surgical plan will be. I can't wait to see everyone. I've attached a pic so you all know what I look like! If you see me make sure to say "Hello!"

1358

mabeckoff
09-17-2012, 03:40 PM
Have a safe trip

hasteffen
09-20-2012, 08:53 PM
Hi all. I am back from St. Louis and I am so ready for bed but I wanted to write and give an update.
First, it was great seeing Laurie and Jane again. It was wonderful meeting Evelyn and Nancy. I missed Cheryl.
My trip was off to a rough start with our plane being delayed. We sat in the plane for a couple hours before we were allowed to take off. This made my back hurt so bad that I took vicodin and pretty much felt sick for the next two days. UGH. So while I enjoyed dinner with Laurie and her boyfriend I was feeling green and was not my usual self! Tuesday night I did not sleep well because I was afraid the alarm wouldn't go off.
So Wednesday morning I woke up and headed to get my MRI at 7:30. From there I went to get my xrays and then up to Dr. Lenke's new office on the 12th floor. My appointment is at 10 and I am there at about 9:45. I was actually suprised that I was on time considering. I finally saw Dr. Lenke a little after 12. It was decided that I would be operated on from T4- the sacrum/pelvis.
He then told me that since it was a larger surgery then he thought I needed, that he may have to reschedule me... well, let's just say that he could tell this upset me greatly and told me that he had plans for dinner in Chicago and plans to go to a game on Saturday... to make a long story short, I think he is willing to take a later flight out. I am half expecting a call to change my date again, but I hope NOT.
I also found out that I have shrunk another 1/2 inch since my Nov. appointment. Dr. Lenke said I should get my 2.5 inches back. I was secretly hoping for more but 2.5 would be nice. So, I was hungry and sent the hubby for food while waiting to see Kelly. While I was in with Kelly the DH tried to call and text to bring me food but wouldn't you know the is no cell phone reception after 2 hours of trying to find me he gave up and went back to the room.
So after Kelly I headed back down stairs to meet with anestesiology (sp?) and that took a couple hours. They did an EKG (I had heart surgery as a child so I guess they wanted to make sure I was ok) and drew some blood. They also listened to my heart, checked my vitals, looked in my mouth, and moved my head around.
As you can imagine I was so hungry by this time I begged the nurses for anything... eventually they brought me water and a couple saltine crackers.I finally used hospital phone to call the hubby and he comes and brings me food. I was so thankful! I thought I was done but the nurse sends me back upstairs for a chest xray.
By the time I was done there, it was after four.
I went to the room to rest for a bit and then headed back upstairs to hunt down Evelyn and Jane! It was worth the trek to see their smiling faces!
So my advice for anyone going to see Lenke for a pre op appointment? Make sure you bring snacks!

My best to all! I am going to bed now!
Heidi

JenniferG
09-21-2012, 04:06 AM
Sounds like it would have been a nightmare day but saved by meeting up with your scoli-sisters!

There are loads of us here fused T4 - Sacrum and speaking for myself, it's great!

Hoping there's no change in surgery date for you.

hasteffen
09-21-2012, 04:16 PM
Just got a call from pre op in St. Louis... they forgot to get a urine culture. So, now I am headed to my Dr.'s office Monday morning to do that and have them fax over the results. I was really trying to avoid germy places!!!!

KathK
09-21-2012, 04:18 PM
Heidi,

Wow, that brings back the memories of my pre-opt day. It is really a full day. Sounds like you did great! My flight was also impacted by the east coast weather Tuesday evening, so I know what you went through!

It's nice that your surgery will be on a Wednesday. That way you only have to have the central line in (prior to surgery) the one day instead of over the weekend. I hope you can keep your surgery date. I know it can be a near "military operation" to set up arrangements for young children!

I wish I could have met you, but I will follow your posts and I'll be praying for you as your big day draws near!

Kathy

hasteffen
09-21-2012, 04:23 PM
Hi Kathy,
My surgery is actuall on Friday the 5th! I arrive on Wednesday the 3rd, get my central line the morning of the 4th...
and yes, I was glad that was not the call to rescedule!

KathK
09-22-2012, 08:23 PM
Heidi,
Sorry about that! Da, I was looking at September not October. Friday will be good as well. You will do great!!!

I know how scary this pre-surgery time can be. It really was worse than the recovery for me. You are in great hands!

Kathy

hasteffen
09-23-2012, 07:01 AM
Good to know! I am anxious for sure. Time seems to be dragging now. I am going to be exercising a lot!
I think I am going to go get a pedicure today...

nanlo
09-23-2012, 02:54 PM
Heidi, It was so fun meeting you on Wednesday! All of us who have been through the process are really feeling for you right now with all the ANTICIPATION! Just try to keep your thoughts on the time after the surgery... you're going to wake up, it'll be a hard first week, and then better and better every day!
Nancy

TwinmomTN
09-23-2012, 04:34 PM
Well, if it makes any difference to you I don't remember any of the first week...which is probably a good thing. So maybe your meds will give you amnesia too!

hasteffen
09-23-2012, 06:38 PM
Thanks all!
Nancy, it was nice meeting you as well! You are such a tiny thing. I am glad that you are back on the forum. My mom and sister are going to be with me after surgery for the first week. So for those of you with kids, were you able to talk to your kids on the phone after surgery? Will I feel like getting my hair washed at the salon before coming home (10 days post op)?

golfnut
09-23-2012, 08:31 PM
Heidi,
I wasn't sure if I could believe them or not (just kidding), but Kathy and Nancy both told me that the presurgery time was the worst part of the whole deal, and for me it turned out to be absolutely true. I had a smooth recovery with very little pain (mainly abdomen pain from constipation). Be sure to keep us posted on recovery. I STILL hear compliments eveyday. A former boyfriend told me yesterday that I look 20 years younger.

hasteffen
09-24-2012, 06:28 AM
Awesome, Karen! I was with someone once who said, "I leaned to the left and it was freaky." I have never forgotten that and I guess deep down it really hurt me. I guess that was the begining to our end. So on the bright side, I hope to be straightened out by the time this is all over with!

golfnut
09-24-2012, 07:46 PM
Dr. Lenke can do amazing corrections. I'm sure you will be pleased. I am actually still estatic and it has almost been two years since my surgery. It's so nice not to have to wear all loose fitting clothing. I also feel that this surgery gave me a better prognosis for the next twenty or so years.

Confusedmom
09-24-2012, 10:31 PM
Heidi,

I talked to my kids, friends, in-laws, etc. from St. Louis. I even posted on the Forum. Guess what? I don't remember any of it! Every once in a while I come across something I posted from those early days and am amazed at my lack of recollection.

Not to be a downer, but just so you aren't disappointed if things are a little rough, for me recovery has not been easy and has actually been harder than I imagined. It's not the degree of pain, just the lingering nature of it and the constant wondering if it will ever go away. That said, it IS improving every week, and you have every reason to do very well with this. Also, I do agree that those days right before surgery are the hardest emotionally. When you wake up on the "other side" you will be so relieved. Then when you see your new back, you'll be thrilled!!!!!

Evelyn

nanlo
09-25-2012, 08:58 PM
Hi Heidi,
I got my hair washed at the hospital salon the day I was discharged from the hospital (and moved to the Parkway), so that was about 6 days after surgery. That was tricky, but do-able, and felt wonderful. I did it again before we flew home too. As for talking on the phone, I definitely did, but as the others say, don't remember anything other than my mouth was so dry it was hard to talk coherently... I'm sure you'll be able to talk to your kids on the phone.
Do any of you still find yourselves trying on clothes and feeling like they need to be baggy? I really have to talk myself into buying anything the least bit form fitting...!

Confusedmom
09-25-2012, 10:55 PM
Heidi,
I used those "waterless" shampoo kits every day at the hotel in St. Louis. My mom or husband would "wash" my hair while I was sitting or standing. I was sweating a lot, so I felt I needed it. (I guess from all the IV fluids they pump into you.) You can get them at Walgreens or CVS. Also, bring diaper wipes for cleaning in those days before you can shower. A squirt bottle is helpful, too. Good news is, all of that stuff passes quickly!

Evelyn

hasteffen
09-26-2012, 08:50 PM
I guess I will be taking a trip to the drug store tomorrow for dry shampoo and baby wipes! 7 more days until I fly to St. Louis.
I am definately having a rough time here with anxiety...

nanlo
09-26-2012, 09:23 PM
Heidi, just want to say that I feel for you so much! The anticipation was pretty awful... and my family was so worried and trying to act normal... as so many have said, the build up was worse for me than the surgery and recovery. Once you're done, it's a relief, and you can just focus on recovery. We are all thinking about you!
Nancy

hasteffen
09-28-2012, 08:51 AM
Thanks Nancy. I can't wait for the Day... time seems to be going by so slow. I am getting my teeth cleaned Monday. Yesterday I finished packing. I am so ready. I will be in St. Louis on wednesday. 7 MORE DAYS

Confusedmom
09-28-2012, 09:39 PM
Heidi,

Did you find the shampoo. It's not the dry spray stuff, which is basically baby powder, I think. It's something that's a liquid in a bag, but its no rinse. So your hair's wet When your done, but you didn't have to shower. I'm pretty sure they gave me the first two in the hospital.

Thinking of you!!!

Best,
Evelyn

hasteffen
09-29-2012, 07:32 AM
Lol. Crap Evelyn... i bought the spray kind !

tae_tap
09-29-2012, 11:30 AM
Heidi,
I got the spray kind too and even tried it out. I guess it's okay, but I am going to miss my hot showers! Then again, I will appreciate them when they return, lol.
Tamena

hasteffen
10-01-2012, 06:00 PM
Hi all,
2 more days until I leave for St. Louis and 4 more days until my surgery! I am ready to go. I have had a rough couple of days because one of my dearest friends has lost her boyfriend in a car accident. So, as you can imagine it has been an emotional couple of days. I am so thankful for dear friends and encouraging words! I will try to write you after I get my central line in on Thursday. Tamena will be updating the forum to let you all know how I am doing.
Thanks in advance for your prayers, encouragement and kind words.
Best,
Heidi

golfnut
10-01-2012, 07:26 PM
Heidi,
Just think that in less than a week you will have a nice straight back. For me, the recovery was much worse than the weeks before surgery. It wasn't a walk in the park, but it was much less painful than I had anticipated. Dr. Lenke is one of the best, so that was reassuring to me.

Confusedmom
10-01-2012, 08:47 PM
I think Karen meant much better, right?! If you are looking for things to distract you on Thursday, there is a movie theater in a hotel a couple of blocks from the hospital. Also, some good ethnic food restaurants along the way. I'll be cheering for you!

Evelyn

golfnut
10-01-2012, 09:40 PM
Yes, I meant the recovery was MUCH BETTER. Sorry, if I alarmed anyone.

Irina
10-01-2012, 11:07 PM
Heidi,

I will be thinking about you. Sending you warm and gentle hugs.

hasteffen
10-02-2012, 06:12 AM
The FIL comes today to look after the kids. Going out to breakfast with one of my friends. Then more waiting....

tae_tap
10-02-2012, 06:19 AM
The FIL comes today to look after the kids. Going out to breakfast with one of my friends. Then more waiting....

Don't think of it as waiting......think that you have been given a little extra time to say a true good bye to your body before the new one moves in. : )

Tamena

KathK
10-03-2012, 09:14 PM
Heidi,

Thinking of you! I know that you are going to do great! You are young. You have an excellent surgeon and a top jotch team who will be working on you. You are right where you need to be. Just let go and soon you will be on the other side telling us about your excellent progress.


BTW..the two male nurses who prepped me for my central line were like a comedy team. Hope you get them tomorrow!

Kathy

Confusedmom
10-03-2012, 09:21 PM
Don't forget to take "before" photos and then kiss that crooked back goodbye! When you wake up you will be nice and straight!!!

Best,
Evelyn

nanlo
10-04-2012, 07:05 PM
what Kathy said!! We are thinking about you tonight... and I also know that you will do great - you couldn't be in better hands. Can't wait to hear the good updates about your surgery and recovery.
Nancy

hasteffen
10-05-2012, 12:12 AM
Hi all. Thanks for the reassurring words. Ok, i did not expect to be so sore after getting the central line. Not sure why I didn't but anyway it is not pleasant! I am doing well and in good spirits. Thank you in advance for continued prayers! Surgery in About 7 more hours.

Much love,
Heidi

tae_tap
10-05-2012, 10:05 AM
Heidi went into surgery at 8:35 this morning. Her sister, Kim, and husband, Scott, are at the hospital. The nurse has called Kim to let her know that Heidi is doing fine. The surgery is scheduled for 9 hours. As soon as I know more, I will update this page for everyone.

Tamena

tae_tap
10-05-2012, 10:52 AM
Update on Heidi: the surgeon has started to put her new "hardware" in (steel rods and screws) and reports that things are going just fine.

Tamena

Confusedmom
10-05-2012, 11:09 AM
Thanks, Tamena. Keep us posted! I'll be checking in periodically throughout the day.

Prayers,
Evelyn

tae_tap
10-05-2012, 05:40 PM
Heidi is doing great, came through surgery like a champ, picture of her spine is amazing, so grateful for a successful day!!!! Yaaayyyy!!!
Prayers for a quick recovery!
Tamena

JenniferG
10-05-2012, 05:48 PM
Wonderful news!

king14
10-05-2012, 07:07 PM
I'm so happy to hear!!! Fantastic news. Keep us posted

maggie6
10-05-2012, 07:11 PM
I'm so glad to hear that your surgery went well.

Confusedmom
10-05-2012, 08:32 PM
Yay!!!!! Thanks, Tamena.

jane d
10-05-2012, 09:20 PM
So glad to get the good report that all went well and now it is all over! Will keep you in my prayers for a great recovery.
Jane

tae_tap
10-06-2012, 06:50 PM
Heidi is doing really good. She was moved to a room today. Her sister posted her X-ray on her Facebook page and she has joined the other side wt a beautiful straight spine! They had to break some of the vertebra's to straighten the spine straight. But keep praying for recovery!
Tamena

TwinmomTN
10-06-2012, 07:09 PM
Thanks for the update Tamena. Please tell her we are thinking of her and glad she is doing so well.

Pam

susancook
10-07-2012, 06:17 AM
So glad that everything went well. Breaking ribs in surgery must hurt afterwards!
My thoughts and prayers for a great recovery from FIJI.
Pls post xrays as I am not on her facebook.
HUGS, Susan

golfnut
10-07-2012, 06:23 PM
I am glad to hear Heidi is doing so well. We'll be anxious to see her x-rays of her new, straight back.

djkinkead
10-07-2012, 07:35 PM
Thank you Tamena for keeping up to speed on Heidi. Still saying prayers for her recovery. I remember my first day out of surgery. Please remind her that it gets better every day....it truly does.

Confusedmom
10-07-2012, 08:56 PM
Keep those prayers coming. I've been checking her Facebook page as well. Her friend said she had a brief fever last night, but it is gone. She has been restless, but got more sleep today. On a lot of pain meds, of course. She sat up this morning, was talking on the phone and was scheduled to walk this afternoon. I imagine she'll get more PT tomorrow, once the weekday staff is on. Sounds like she's doing well overall.

Evelyn

Irina
10-07-2012, 09:43 PM
Great news! Thank you, Tamena and Evelyn for keeping us posted.

tae_tap
10-08-2012, 06:21 AM
This was from Heidi's friend.


Hi everyone, it is almost 1 pm on Sunday. The roller coaster keeps going up and down for Heidi. Physical and occupational therapy started this morning, and she has had both already. She has had her hair washed and a sponge bath. Sister Kim Dayton and mom Carol Karels report that she is on a couple of different muscle relaxers and that one will help with the anxiety that is a natural part of this process. The family is very happy with the nurses and techs that have tended to Heidi today. Tracey

(this one is from the evening. ) Hi everyone, I just talked to Heidi for the first time! It was such a joy to hear her voice! Her sister Kim Dayton reports that she slept most of the day, lots of meds as you would expect. Her nurses were fine with both the meds and the sleep, due to the lack of sleep the last couple of days. Prayers for a good night of sleep (for her AND Kim!!) and a good night staff. Tracey


Keep praying for her.
Tamena

tae_tap
10-08-2012, 07:19 AM
Here is the picture of Heidi's spine that was uploaded to facebook.

Tamena

susancook
10-08-2012, 09:31 AM
Thanks for the xray. Loks straight to me! Tell Heidi that she is in everyone's thoughts and prayers, even as far as Fiji!
Susan

JenniferG
10-08-2012, 02:34 PM
Thanks for posting the xray. It looks amazing!

tae_tap
10-08-2012, 03:17 PM
Here is today's update from Tracey:

Heidi update for Monday afternoon at 4: Ok, Heidi is rockin'. Here is the report from Kim Dayton and Carol Karels: Decrease in pump meds, starting other meds (pill form). Walked 27 steps (!) in and out of bed multiple times. Kim says "Today she is working hard." Wow! Go Heidi. I am absolutely amazed that she can do this today. Tracey



Tamena

king14
10-08-2012, 04:56 PM
Your spine is beautiful!!!! Keep on trucking girl you're doing fantastically!!
Sending hugs and love!
Sara

golfnut
10-08-2012, 08:05 PM
I agree. Your spine looks great! Keep on working hard and you'll be home before you know it.

tae_tap
10-09-2012, 03:32 PM
Today's update via facebook:

Hi all, this is Tracey on Tuesday at 12:30pm. Heidi is hanging tough. Has had PT today and has started on (very poor tasting) solid food. Her sister Kim Dayton and mom Carol Karels continue on with her at the hospital. If you would like to send a card, it goes to:

Barnes Jewish Hospital Washington University
c/o Heidi Steffen, 7350 Barnes Jewish South
4921 Parkview Place
St. Louis, MO 63110


Tamena

Confusedmom
10-09-2012, 10:22 PM
I bet Heidi will be dismissed before she can receive any cards. You're doing great , Heidi! Keep up the good work.

Evelyn

tae_tap
10-11-2012, 06:35 AM
Hey guys! Heidi is having a tough time with pain lastnight and this morning. Hopefully today it will ease. She is taking pain med by mouth only now.

Tamena

Doodles
10-12-2012, 01:46 PM
Heidi--
I hope the pain is better today. There definitely are tough days to be sure. The x-ray looks fabulous. Hang in there. Janet

tae_tap
10-12-2012, 03:42 PM
I talked to Heidi this morning and she was in a great deal of pain. She feel out of her bed which did not help things much. She was released upon the check to make sure nothing was damaged and is in the hotel next to the hospital. She will fly home next week. I hope her pain eases prior to traveling the distance from MO to NC.

Tamena

tae_tap
10-15-2012, 06:08 AM
Heidi is doing a little better. She is walking more and using the wheelchair less. Heidi will be flying home on Tuesday. She has a friend flying with her. Prayers for safe travels.

Tamena

Doodles
10-15-2012, 04:22 PM
She fell out of bed?? That's awful. I can't begin to imagine that. I certainly hope things go more smoothly for her soon. Janet

maggie6
10-15-2012, 09:05 PM
Heidi glad you've made it through surgery. I appreciate you sharing your experience.

Confusedmom
10-24-2012, 10:30 PM
Tamena was posting for Heidi, but since she is in recovery, I will post. Heidi is back at home. Her mother in law is staying with her. She is walking every day, trying to reduce pain meds, and generally seems to be doing well. This is from her friend's post on Facebook. She is still having trouble focusing on email, so it might be a while before she posts here.

Irina
10-24-2012, 10:51 PM
This is so nice of you, Evelyn, to post for both Heidi and Tamena. Thank you and best wishes to both girls.

Confusedmom
10-30-2012, 01:48 PM
There is a photo of Heidi on Facebook today. She's up and about at home. She took her first car trip to pick her son up at school. Looks like she's doing well, but still having troubled focusing close up. In her photo, she appears taller and lean in the abdomen. Go Heidi!

Evelyn

hasteffen
10-30-2012, 07:04 PM
I am 3 1/2 weeks post op. Don't feel like typing yet but I wanted to let everyone know I am OK. As far as I know, the surgery has been successful and I've gained 2 1/2 inches in height. I don't remember much about the hospital stay....didn't think it was a very nice hospital......at least not compared to the hospitals around here. I didn't have a roommate and the room was adequate, but seemed old fashioned...not at all like Dr. Lenke's office.
I was T4 to the sacrum and my right leg hurts from my hip to my knee. It looks fine but feels bruised and is sensitive to the touch. Dr Kim told my sister that it was because I was lying on a board during surgery, which lasted 9 hours. Also, my right leg is weaker than the left. I am curious if anyone else had a similar problem or has any suggestions.
I'm definitely stronger in the mornings and I think I am weaning myself off a lot of the meds sooner than most. I am showering and dessing with just minimal help......but cooking and childcare are too difficult right now.
When I lay flat on my back, I feel like I am wearing the Boston brace I wore in childhood............ So I know I will feel at 100% once my recovery is complete.
One thing that surprised me......no steri strips were used to close my incision.......... they used glue.
That's all for now. I'll get back to the forum shortly. Just wanted to let you all know that things are going well for the most part.

hasteffen
10-30-2012, 07:05 PM
Thanks Evelyn for keeping the forum up to date.

golfnut
10-30-2012, 07:26 PM
Heidi,
I think you are doing really well. You are through the toughest part of the recovery and will start to feel better each week. Once I was weaned off of the pain meds and started getting out of the house (and hearing compliments about my new look) I improved by leaps and bounds.

nanlo
10-30-2012, 09:43 PM
Hi Heidi,
so nice to hear from you! Those first weeks are so tough (to put it mildly). I second what Karen said - at your stage, I really noticed a huge improvement almost day to day. Then weeks and months go by, and you eventually are back up to speed. Of course napping and resting will help a lot - I hope you have enough help at home.
Just thinking about you,
Nancy

Confusedmom
10-30-2012, 10:18 PM
Heidi,

If you are already weaning pain meds, you are rocking, girl!! Keep up the good work. (But take it easy on yourself, too.)

Best,
Evelyn

JenniferG
10-30-2012, 11:09 PM
I am 3 1/2 weeks post op. Don't feel like typing yet but I wanted to let everyone know I am OK. As far as I know, the surgery has been successful and I've gained 2 1/2 inches in height. I don't remember much about the hospital stay....didn't think it was a very nice hospital......at least not compared to the hospitals around here. I didn't have a roommate and the room was adequate, but seemed old fashioned...not at all like Dr. Lenke's office.
I was T4 to the sacrum and my right leg hurts from my hip to my knee. It looks fine but feels bruised and is sensitive to the touch. Dr Kim told my sister that it was because I was lying on a board during surgery, which lasted 9 hours. Also, my right leg is weaker than the left. I am curious if anyone else had a similar problem or has any suggestions.
I'm definitely stronger in the mornings and I think I am weaning myself off a lot of the meds sooner than most. I am showering and dessing with just minimal help......but cooking and childcare are too difficult right now.
When I lay flat on my back, I feel like I am wearing the Boston brace I wore in childhood............ So I know I will feel at 100% once my recovery is complete.
One thing that surprised me......no steri strips were used to close my incision.......... they used glue.
That's all for now. I'll get back to the forum shortly. Just wanted to let you all know that things are going well for the most part.

Thank you Leslie! Heidi, you sound good. I hope the hip to knee pain eases as time goes by and various areas of swelling reduce. I just wanted to say that I too, had glue closing my incision and I had no problems whatsoever. You can see a photo of my scar at 11 weeks in my signature. It's very pale now and barely noticeable - amazing really. I would definitely prefer the glue to stitches.

2.5 inches, that's amazing! You must feel like you're walking around on stilts!

Take it easy and don't cut out your pain meds too early, all your energy needs to go into healing, not dealing with pain right now. We look forward to hearing from you again soon.

hasteffen
11-01-2012, 06:58 PM
Hello all! Tomorrow I will be 4 weeks post op. I had a busy day... I started with a shower (which I can pretty much do on my own) I need a little help towel drying my hair but can blowdry it myself. I dressed myself. I had to use the sock tool and dressing stick but managed just fine. After breakfast, we headed to lazy boy in search of a comfortable chair for me for the next year or so. The car ride wasn't too bad a few bumps but nothing to make a big deal about. I had my first sneeze today... twice! It only hurt momentarily or maybe I had imagined it would hurt so much worse. I am down to taking 1/2 oxycotin at night. I did take 4 regular tylenol today. I'm not saying I don't have any pain but it is quite managable.
The one thing that bothers about this whole experience is the things I can't/don't remember. Some family members are telling me some funny stories! I bet Dr. Lenke and his team think I am a piece of work....not sure I want to face them again :) Drugs... they sure do make some people say/ do the darndest things.
Went for a walk with my oldest daughter this afternoon.
The drug withdrawls have been at a minimum today and my crying spells have been limited.
Overall, I feel fairly confident that I will have a successful outcome and will eventually be back to better then normal!
Thanks to everyone who has stuck by me and kept up with me. I will update you when or if anything happens!
Best,
Heidi

jrnyc
11-01-2012, 08:58 PM
Heidi...i believe oxycontin is time released...
which means it is not supposed to be cut in half...
maybe you should check with your doctor....????
also...did he OK how much tylenol you are taking...?

hope you feel better every day....

jess...& Sparky

hasteffen
11-01-2012, 10:04 PM
Jess,
My hubby is a dr and i have the privledge of a local spine doc as a neighbor who both ok it. As far as tylenol your liver can
Only handle 4000mg which i am way below that. I am feeling so much better since getting off the narcotics. Besifes the fact that i am no longer falling out of bed or off the toilet because i was so impaired. I really
Have minimal pain now and can only praise God for his protection while i was on all those drugs and thank Him for my healing. I have asked him to carry my pain and he has answered my prayers.

HannahCP
11-01-2012, 10:12 PM
Hello all! Tomorrow I will be 4 weeks post op. I had a busy day... I started with a shower (which I can pretty much do on my own) I need a little help towel drying my hair but can blowdry it myself. I dressed myself. I had to use the sock tool and dressing stick but managed just fine. After breakfast, we headed to lazy boy in search of a comfortable chair for me for the next year or so. The car ride wasn't too bad a few bumps but nothing to make a big deal about. I had my first sneeze today... twice! It only hurt momentarily or maybe I had imagined it would hurt so much worse. I am down to taking 1/2 oxycotin at night. I did take 4 regular tylenol today. I'm not saying I don't have any pain but it is quite managable.
The one thing that bothers about this whole experience is the things I can't/don't remember. Some family members are telling me some funny stories! I bet Dr. Lenke and his team think I am a piece of work....not sure I want to face them again :) Drugs... they sure do make some people say/ do the darndest things.
Went for a walk with my oldest daughter this afternoon.
The drug withdrawls have been at a minimum today and my crying spells have been limited.
Overall, I feel fairly confident that I will have a successful outcome and will eventually be back to better then normal! By the way I had my second sneeze tonight too. Ouch!!!!! Also recovering from a hick up in
Thanks to everyone who has stuck by me and happens!
Best,
Heidi

Heidi, your recovery sounds so similar to mine. I am too just a little over 4 weeks post-op and am doing most everything that you are. I can now shower and dry my hair on my own. I have definitely had many crying spells in the past week or so. Trying to wean off the Meds slowly and walking the neighborhood a few times a week. I split it up a few times a day but am up to about 1 miles throughout the day. Mostly muscle
Pain lately, some neck pain and stiffness. I'm currently on oxycodone, acetaminophen, valium, flexeril and some stool softeners. I feel like the Valium is going to be the most difficult to let go of since it really helps with muscle soreness. But well see how the weeks go! Sneezing does hurt! Tonight was my second and no fun! Hope we keep improving!!!!

Hannah

jrnyc
11-02-2012, 01:04 AM
heidi, that is great...
so glad both you and hannah are feeling so much better at 4 weeks...
hope each of you improve a little every day....

jess...& Sparky

hasteffen
11-02-2012, 04:37 PM
Thanks Jess. Talked with Angie today.. i am four weeks post op today. Cutting oit last of oxycotin tonight and cutting down on colace and senna. I am so happy to be off the narcotics. They truly made me crazy! Hannah.... dont know how i missed you on here. Everyday that goes by i get better and stronger. Its been tough though

hasteffen
11-06-2012, 09:02 AM
For those of you who have had surgery...
My right leg is much weaker then my left. For example, when I climb stairs I have to start with my left leg because it is hard to lift right leg. when getting in and out of car it is extremely difficult to lift right leg up and into car.
From my right hip to middle of thigh it feels bruised if I touch it. It looks normal. It also tingles. I am assuming it is nerve damage and will heal on it's own and maybe that is what is causing my leg to be so weak?
When I asked about the bruised/tingling feeling they said that it is probably nerves. Has anyone else had this and did it go away.
I am thinking that I will probably need Physical Therapy for this. I think it may be too early though.
thanks,
Heidi

tae_tap
11-06-2012, 05:20 PM
Heidi,
My left feels the same way. It feels weak and sensitive to touch along with the left side of my abdomen. I asked if I needed pt to regain strength yesterday and was assured it was from surgery and could take a while to build back up, but I guess everything in the spine is connected to every avenue of our body.
Tamena

Confusedmom
11-06-2012, 10:52 PM
Heidi,

They will probably tell you nerves may have been stretched or manipulated during surgery, and that can take a long time to heal (months). It's my understanding they won't even think about PT until after 3 months. (That's what Naomi told me.)

I did not have the weakness thing, but I know I've read about others who have, and I believe most people have seen improvement over time. If you're worried, though, I wouldn't hesitate to give Kelly a call.

Best,
Evelyn