PDA

View Full Version : i have a date...



patty22
12-14-2011, 10:06 AM
for surgery (i wish i just had a date with a hot guy instead (my husband, of course, hehe) :)

I will be going in the end of January. I got a second opinion back in October and I feel comfortable with this surgeon. Both surgeons agreed that my scoliosis is progressing and it's just a matter of when. both also said the younger you are, the better the correction, etc. etc. Also I want to start a family soon and don't want to have this surgery looming over me for years. Plus, I'd rather have a shorter fusion since it seems that it's slowly progressing into the lumbar.

I think rationally I'm making the right decision. However, I always second guess myself. Should I have gotten a third opinion? Should I wait? Shoulda, woulda, coulda...lol.

I just feel like this is the right time to do it. My job is flexible with the time, my husband is in between jobs and can take care of me, my mom is going to take time off and help us out.

My fusion would be T-5 to L-2.

I'll need alot of prayers, thoughts, support.

jeneemohler
12-14-2011, 12:22 PM
I agree about getting better correction when you are younger. It is tough balancing act, deciding when to do it. I put it off for 30 years, and actually waited 2-3 years too long. It progressed so quickly that last year, that the correction I gained only made up for the progression I had. I am 50, so I'm just not as flexible as you youngsters anymore! I would have been much straighter if I had done it a little sooner.

But with that being said, I am fine with where I am. We stopped the progression, the pain is gone, and life is going forward is even better than it was before surgery. And I have a long fusion with pelvic fixation. Life is good.

You sound in amazingly good spirits for the journey ahead. Good for you! Only you know when the time is right. It is totally normal to second guess. I shrunk almost 3" in 6 months, and I STILL thought about putting it off, even though I knew deep down that the time had come to take that leap.

There lots of us here to offer support, so lean on us whenever you need to!!

Jenee'

Marina63
12-14-2011, 12:53 PM
Congratulations on getting that date!
You will definitely second geuss yourself. I didn't even get a second opinion and it didn't even occur to me until well after my surgery.
Younger is better. You'll be glad you did it now versus waiting.

walkingmom
12-14-2011, 02:08 PM
Sounds like you have everything arranged. With you being very active, you will find that will be an immense plus for you during your recovery time. Plus you have your young age going for you. I wish that I had done a better job in monitoring my curve progression, because I thought that my curve was only limited to my thoracic area. But as the years past, my lumbar area was affected as well which resulted in a much longer fusion. You are definitely making a wise decision to take care of it now especially since your curve is indeed progressing.

Just reading posts of others has been reassuring to me as I continue with my own recovery. You came to the right place for prayers and support. Please let us know your exact surgery date as you get closer to it so that I can pray for you on that specific day.
Donna

rohrer01
12-14-2011, 10:36 PM
Well, good for your decision. I am in kind of the same boat in a way. Hubby and I wanted to start a family of our own in my mid 30's. We weren't successful but are still hopeful. I'm now 43 and people think I'm crazy and in reality it will probably never happen for us. But with that said, I asked my OB about whether I should have surgery for my back or try for kids first. Because of MY age, she suggested kids first, then back. My curves aren't as big as yours, but definitely within the margin of error, so maybe. But I have 13 years on you. I've heard of so many success stories about scoli moms having surgery and then going on to have normal, uneventful pregnancies. I know there are some threads on here about them. I wish you all the best and I agree, younger is better. We're thinking of you. Please keep us updated. Oh, and don't forget about us when that day arrives and you are holding your little dear one in your arms! We will want to hear about that for sure!

titaniumed
12-14-2011, 11:00 PM
I deleted my post as it was meant for another person. I’m such a dork sometimes!

I hope nobody read it! (chuckle, chuckle)

Anyway, I think you are doing the right thing. I waited, like many others and NOW feel that after hearing from surgeons”why did you wait” and reading Sharon’s Dr Hey threads, that having surgery earlier is a good thing. This statement has a lot of thought and pain behind it!

I just have to post to the right person.

Don’t worry, I’m still keeping it together. LOL
Ed

rohrer01
12-15-2011, 02:04 AM
I thought I was the only one who still used the word "dork"! LOL
You might be a dork sometimes, but be thankful that you aren't a dork ALL of the time!
We forgive you. LOL

patty22
12-15-2011, 09:45 AM
Thanks everybody. My date is January 23rd.

Jenee - i think i only sound like i'm in good spirits. truth is, i'm scared out of my wits! But I know that is normal. I'm trying to do daily relaxation, exercise, etc. and generally not think about it as much. wake up call for me is when they measured me at the dr.'s office. i too have shrunk since high school - 2". It was so gradual i didn't even notice (neither did my husband). I actually started buying in the petite section at ann taylors and thought that was a bit strange lol. My legs are so long and my torso just doesn't match as well!

Donna - you are so sweet. I almost cried when i read you were going to pray for me :) thank you so much!

Marina - your encouraging words before really helped me take the plunge so thank you ;)

Everyone else thank you again for your words of encouragement.

i think in the next upcoming days i'll start another thread about last minute preparations. I've read through about the pros/cons of flying/driving after surgery. there are no easy flights between the city i'm getting surgery and my hometown. all involve connections. i think the flight would be 3.5 hrs with the connections versus driving 5 hours. im leaning towards driving but sheesh...lol

foam topper, down pillows, silk sheets/pjs, bath robe....that'll be on my xmas wish list this season lol!

mariya
12-15-2011, 10:18 AM
Hi there,

I am also in the same boat as you are. I am 30 years old and deciding whether the time has come for me to have the surgery. I had children in my early 20s and then the progression really started. In 2004, I started watching the progression of the curves and they def increased by 2008. I didn't opt for surgery at the time which most doctors said I should have it done in order to prevent further progression. Mainly because I was not in alot of pain. Today, I am in pain almost every day. I limit my activities and mostly I do not feel like I have normal life anymore. I am scheduled to see Dr. Boachie on January 9th. I am looking forward to hearing what he has to say and what my curves are since last time I checked in 2008. I think now is the time to take care of it rather then sit and watch it get worse with time. I also would like to have more children, but, not sure whether to have it now or after the surgery. I hope to get the professionals opinion on this one. Its hard to imagine being pregnant now with the every day pain, spasms, sciatica that I have. Also, having children already I know how much they really need their mommy until approx age 4. There will have to be plenty of lifting and carrying them which I am not sure after surgery will be allowed for some time.

It's good to see others in my age group go through the same thing because most of the people on this forum are older and they do have great advice for those of us that are younger! I also am happy to be a part of this great forum and thankful to everyone that posts their stories, it really helps!

Sounds like you have great help which is important. Good luck and I too will be thinking of you :)

Mariya

patty22
01-09-2012, 10:52 AM
It's about 2 weeks until my surgery and my nerves are shot. I know I'm making the right decision and am peaceful with my dr., etc. but I'm just so scared about going through SURGERY. I got the Peggy Huddleston (sp?) book and am doing the relaxation tape (actually i am doing a relaxation tape from a Belleruth Naparstek which I recommend!) and it helps. I'm also exercising like a fiend so at least i'll have a hot body going into surgery ;)

i just need to vent because i feel like my friends and family, even though well meaning and caring, just don't know what i'm going through.

i went to get a massage yesterday and i mentioned to the lady that i was having scoliosis surgery in a couple of weeks. her immediately reaction was "well did you try a chiropractor first?". Even though i think she was well meaning, it got me angry. I told her that I have been going to a chiropractor since i was 14 and my spine has still be progressing. after all the heartache of being told there is nothing i can do about my spine and it will never progress, to going to chiropractors - who x-rayed me periodically and never told me i was progressing (probably not their fault cause they are not trained orthopedic drs. but then again don't pretend to be someone who can treat scoliosis!), making the decision for surgery was one of the hardest things i've had to do and having people question me just puts me over the edge right now with my nerves. she was a nice person and gave me an ok massage so i just tipped her the average ;)

the decision to have this surgery when you are a young adult and in not a great deal of pain is difficult. well, actually for everyone in any circumstances it's difficult!

I get restless thinking about the pain right after i get out of surgery but i keep reading threads that it's so variable depending on the person that there is no point in worrying about it.

i'm trying to keep busy preparing.

sorry just had to vent random thoughts in my mind. :)

good luck to everyone who is having surgery this month. we should have a virtual party after we have all recovered.

JenniferG
01-09-2012, 06:02 PM
This pre-op stage is very hard on the nerves. For me it was worse than surgery. You've prepared, you've asked the questions, you've got fit, you're doing everything you possibly can to stay in control, which helps so much. It's the part where you're not in control that's the scary bit.

I hope the next two weeks will go swiftly. Soon you'll join those of us on "the other side." All the very best!

mdtaffet
01-09-2012, 11:07 PM
I'm also scheduled for January 23rd, and hoping that my back and legs will make it these next two weeks.

I'll be working right up through January 20th on a very important project (i.e. very high stress level, hoping I can successfully finish my part of this contract by the end of next week). I work in a very large building where lots of walking is required to do just about anything, and it's 50 miles away from where I live, so I first have to drive an hour to even get there. For the last week, I've had to bring the company laptop with me (I am a contractor working at a customer site right now), and it's very heavy. Fortunately my access to the customer's internal network has now been restored, and I can once again work on their machines, saving me the need to lug that laptop with me.

Even though I currently have a temporary handicapped parking pass, it's still a longer walk from the parking lot to where I sit than I would like. There are certain times when I have to lean over a bit, and straightening back up from that is very difficult right now. Every time I do, my back crunches and snaps against the top of my right hip, which I assume is bone rubbing hard against bone, and temporarily getting stuck. Between that and my leg wanting to give out before I can make it all the way to my desk, while part of me is very apprehensive, another part of me wants to go ahead and get the surgery over with so I can start feeling better already.

The doctor's admin assistant told me to use 6 months as the starting point for how long I would be out of work, but I'm hoping I can get back to work before that point. The follow-on contract should start by March 1st, but I know I won't be ready by then. I just hope I can get back to work before August 1st. But I think I'll have to ask them for a more comfortable chair before I can go back there.

Though I had been told by a chiropractor's office that I had scoliosis back in 1994, I didn't really believe them. I had never seen such a strange-looking X-ray, perhaps in part because it was full body -- head to foot, so figured they had done something wrong. The first time I was told I had scoliosis and actually believed it was in January 2004. I don't really know what the curve measured at that point, but by 2007, someone else measured it at about 25 degrees. In March 2009, it was measured at somewhere around 26 or 27 degrees. In February 2011, it was measured at around 34 degrees. In September 2011, it was measured at between 38 and 40 degrees (different numbers given by doctor's nurse and doctor himself). I'm guessing that if they took another X-ray today, it would be bigger than 40 degrees. The surgeon told me my spine is "collapsing".

I just hope things get better after surgery....

Good luck to both of us that day!

patty22
01-12-2012, 12:06 PM
ugh. i reached out to my friends and family through facebook so i could tell them i'm going through this surgery in a couple of weeks. one of my friends (actually more of a friend of my husband) told me i could contact him to talk about it since we went through kyphosis surgery 15+ years ago. when i started talking to him he told me i might not like what he is going to say. i told him to go ahead anyways cause i'm sure i've already read all the scary stuff out there. well he's having a hard time now years after his surgery. he says he doesn't regret it one bit and he did get 15 good years of being pain free but now he's having horrible troubles with pain. he goes to a pain management doctor and some other neuro doctor about it. i asked him what his symptoms were and it really seems to me he might have flat-back syndrome, which he has never heard about. i don't think the drs he is seeing are trained scoliosis specialists. i told him he should go see one to see if there is anything he could do about his trouble. he sorta brushed it off and told me to go ahead and have the surgery since i'd be in pain "either way."

argggggggggggggghhh. why did i talk to him?? he was very defeatist and not necessarily negative since he is giving me his honest experience but it just got me all scared and freaked out at a time when i was peaceful about the whole thing. my number 1 fear is the long-term consequences of the spinal fusion - things that pop up 15+ years down the road.

I'm to call my dr. again and discuss with him all my fears :( i feel like he practically doubles as a psychotherapist lol.

walkingmom
01-12-2012, 01:28 PM
my number 1 fear is the long-term consequences of the spinal fusion - things that pop up 15+ years down the road.

Hi Patty22,

Remember that none of us definitely knows what the LT future will hold after having this surgery. However,the long-term consequences of doing nothing when you have a back with progressive curves is not that rosy. It's not uncommon to second guess yourself especially after hearing from others who feel compelled to share their experiences. Just keep reminding yourself that deciding to have this surgery was not a quickie decision that you made. The days leading up to the surgery date are simplyhorrendous. I will pray that the peacefulness will quickly return to you.
Donna

golfnut
01-12-2012, 02:17 PM
Hi, Patty,
I know exactly how you are feeling. I had well meaning friends and family members question my decision to have surgery, especially since I wasn't in much pain. It's not what you need at this time. None of these people had any knowledge of scolisosis or the benefits of surgery. I relied on this forum, scoliosis books, and Dr. Lenke's nurse to help calm me during my last month before surgery. I not only feared the surgery outcome, but the post-op pain that I might experience. My pain was well managed in the hospital and at home following surgery. I also used the relaxation tapes before surgery and when having trouble sleeping after coming home. I posted positive quotes from David Wolpert's book in our bedroom before my surgery so that if I started feeling a little discouraged post-op, I would adjust my attitude.
Best of luck with your surgery and your recovery.

rohrer01
01-12-2012, 04:32 PM
Hello, Patty.
You asked yourself, "Why did I do that?" I believe you wanted affirmation that you are doing the right thing. Your husbands friend did give you that, although he also said things that he really doesn't know, like what condition YOU will be in 15 years from now. You also have to remember that he had a different surgery than you are having AND he had it many years ago when the technology wasn't as advanced. Every person is different and every outcome is as unique as the individual. You actually gave him a bit of information that he wasn't aware of about flatback syndrome. So he might think about that even though he seemed to brush it off. You've made this decision for you. You seem to have a wonderful, caring doctor, who is very concerned with allaying your fears. I haven't had surgery, but I can only imagine how I would feel as I know it's looming out there in my future. I hope you get to talk to your doctor and can regain that sense of peace that you've momentarily lost. Best wishes and (((hugs)))!

LSKOCH5
01-13-2012, 02:58 PM
Hi Patty - it's amazing how many people have such skewed ideas of scoliosis surgery. You've probably done a ton of research, & have way too many people here on the forum who have gone thru such successful surgeries to dwell on other people's lack of knowledge on your situation. You will soon be on the other side and on the way to recovery. Noticed you have a long drive home after you're released from the hospital; ours was 3 hrs home. Don't know what type of vehicle you have, but memory foam topper for the car/truck is a great help; I ordered an extra & cut enough to go across & up the back seat of our truck; 5'8 son was able to sleep & be comfortable most of way home. Couldn't imagine the bumps in the road & turns, etc without it. Best of luck to you through the whole process.

patty22
01-19-2012, 10:14 AM
thank you everybody. i think i'm feeling better going into this. Tuesday is the big day. And thanks LSKOCH5; i do have a long drive but i think i might break it up into two days, depending on how i feel. will definitely use the foam though!

KathK
01-19-2012, 10:46 AM
patty22,

I will be thinking of you and jerseyOT on Monday morning! I will be picturing your surgical teams having a great morning and being on the top of their games! You will do fine!

For what it's worth, I think that you are making a good choice. You have significant and documented progression as a young adult. Your curve is large (but probably still quite flexible). Your fusion will stop at L2. You are quite young. I think all of those factors will add up to a VERY successfull outcome. Your restrictions will probably be much less as a young person with a primarily thoracic fusion, too.

All the best,
Kathy

djkinkead
01-20-2012, 07:29 PM
Best of luck to both Patty 22 and jersey0T....will say prayers for you both.

Yes, people outside of this forum really cannot relate to the surgery you are about to have. They haven't been there and do not understand at all. I am not sure what I would have done without this forum and its wonderful members giving me great advice.

Once you are past your surgery (and remember it gets better everyday), and a week or two have gone by, you might fine a memory foam pillow might be best in providing softness and support for the sitting position. I found a pillow like this at Kohls. I have one in each of our cars and am still using it at five months post surgery.

http://www.kohls.com/kohlsStore/landingpages/memoryfoam/pillows/PRD~456074/Perfect+Comfort+Memory+Foam+Side+Sleeper+Pillow.js p

There has been a lot of improvement in this surgery since fifteen years ago--so hopefully the long term life with this will be good.

Best wishes!!!