New here, surgery date Feb 23. Terrified.

[Elisa]

Lily, according to your signature, you're almost a year post-op, hehe.

[Lilysaidwhat]

Lily, according to your signature, you're almost a year post-op, hehe.

Oooooops. Thanks for the reminder!

[sarahcant]

feel your pain

I too am a terrified type A New Yorker who's surgery is scheduled for March 15 with Dr. Erricco at NYU. Can I ask why you picked your surgeon and hospital? Sometimes I feel that too much information is scary...maybe I'll put my head back in the sand for a while because I already cant sleep and feel so out of control. I also have a really hard time asking for help and have a teenager who is graduating HS in June and a senior in college graduating in May and I am going to be there come hell or high water!!! I guess staying positive is the only solution in this game. I pray that for both of us and everyone else on here waiting for surgery a speedy, easy recovery.

[jrnyc]

sarah...
how many surgeons did you see for consults...?

jess

[Karen Ocker]

Dr. Erricco

Dr. Errico is an excellent, experienced scoliosis surgeon-both with primary surgeries and revisions. I have heard many good reports on an older forum from his patients and I actually worked with one of his patients.

[jeneemohler]

Sarah, there is so much truth in the saying "fear of the unknown". However, no matter how much you know, how prepared you are, how positive you are, it is still a very scary thing for anyone to deal with. And there will always be a little fear. We all have had it, and it is totally normal. But my only fears at the end were the fears of the unknown, the things I couldn't know for sure, like how much correction I would get, and how the recovery would go. So you have to look at the odds. The huge majority of people who have had this surgery are very happy they did it. It will be tough at first, but we scoli people are tough cookies by nature. We already deal with so much! And down the road after recovery, almost everyone feels they are better off. Not always perfect, let's be realistic, but definitely better off than before surgery. And lots of them DO feel pretty perfect compared to the old days. I already do, only 3 weeks out. So hang in there!

Lily, how are you doing lately? Feeling any better? I also own a sweet little red Volvo convertible, and really hope I can drive it. It may take a little acrobatics to get in it. But I've already been mentally working on it in my head!!! Slide the seat all the way back, recline it a little, use the "oh sh**" handle to pull myself in, and then slide the seat forward. Of course, I hope to be able to go around topless for half the year so I don't have to worry about it! Hey boys! Topless as in no roof!!!

Hang in there ladies!!!!

[jrnyc]

Dr Errico was in NY Magazine's list of best orthopedic surgeons one year...he has an excellent rep...
but it is always good to see a few surgeons, to see if they agree as to the length of fusion, type of procedure, etc...
Manhattan has a list of top scoli surgeons..including, Dr Boachie, Dr. Lonner, Dr Neuwirth, and several others...
i do not know that all do minimally invasive procedure for lumbar...but then, not everyone wants that...

best of luck...
jess

[Lilysaidwhat]

I'm doing better, thanks - I'm 3 weeks out from today. I've increased my PT, been to my MRI which showed that my deterioration is only as far as L2/L3 (we looked at the report last night but my pre-op meeting is next tue so we'll see what he says) and the L4 is in really good shape.

I have received such an amazing outpouring of support from all over - my phys therapist is coming to my house the week I get home to check on me and do a little passive stretching; my massage therapist is going to work with my PT to see when she can come to massage my arms and legs and work lightly on my back muscles to prevent spasms; one of my friends is an esthetician and coming to give me a facial when I'm 1 month post-op; three friends are coming from Florida, Maine and VA to visit at different times; my hairdresser told me the other day, "Don't worry about anything. We'll take care of you. We're setting up days to bring over meals, and as soon as you're up for it, we'll bring wine and scrabble. We'll get you through this, so do not worry." Another friend knows one of the anesthesiologists there and put in a call. They said that they'll make sure I get "top notch care" and will assign their best team to my surgery. That is really huge as I have fears about the anesthesia.

I feel a bit like George Bailey and am completely gobsmacked by the generosity and kindness of people.

I went to Boachie first, but didn't like him and was also averse to paying out of pocket and hoping to be reimbursed by insurance. Then I went to Yale, and have researched Dr Grauer quite a bit. He has an excellent reputation and was described by at least two colleagues as "meticulous" and "anal about precision". That's the guy I want working on me. He did concur with Dr Boachie's assessment, but was more conservative than Boachie's recs.

In other good news I found out that I have secondary insurance, so I will be able to pay my deductible and most everything else should be covered. That is a huge load off my mind.

The reality is that this is coming for me whether I like it or not, so I need to get my game face on and go forward.

Every time I do anything related to the surgery, it becomes that much more real - the MRI was very stressful, not because of the MRI itself but because I fear the results. I must admit that xanax is a dear friend of mine now - I take it daily at 4 hour intervals and that seems to keep the panic/extreme fear at bay. I think this will suck for a few months but I am so driven to get it behind me and move on.

Sarah, I picked my surgeon and hospital for several reasons, including proximity to my home (logistics of doing this 2 hrs away were daunting), I didn't want to be far away from where I was treated in case of post-op difficulties, and my husband works at the hospital so I am hoping that gets me a little extra care.

[leannebr]

My experience hasnt been as good as the rest of the comments Ive read. So I'm not trying to scare you, but dont plan on 4 days in the hospital. It was more for most. For me it was 6 and I was on alot of narcotics when I left. The constipation is terrible and miralax was the only thing that helped at all for me. I am having complications still at 3 months post op and had a great surgeon but one who has no interest much AFTER the surgery. With great respect as well, dont do the surgery unless you are having alot of pain for along time and have tried all other avenues. The surgery for me was and has been a nightmare, and I regret it and wish I could turn back the clock. I would have never done this. I am taller and straight but it has been the worsed experience and challenge of my life. I was very very strong, very healthy and toned, didnt smoke, not at all over weight and power walked 2 miles a day. I was really proud of my health. For me it hasnt helped and I am not doing well after this surgery. I was also very very independent and have had someone helping me 24/7 since it now. I did not shower myself and still dont actually.
Think and pray alot about it. Its a very big decision. Many do well, and the younger usually heal much faster. I am 50. My Dr uses the body torso brace for the 1st 3 months OR until fusion has taken place which can take longer in older people. The brace is awful and I am praying Ive fused and will be allowed to go without it tomorrow at my 3 mo check.
My curves progressed from top or thorasic 38 degrees and bottom 26degrees, to 47 degrees on top and 38 degrees on bottom in 3 years time. So like you, I didnt want to end up with inablilities later and it helped my decision to do it. I also had pain. But it WAS appealing to think to of wearing clothes that werent accommodating and covering my deformity if I had the surgery too. Having said all this, again, I regret it. I'm only 3 months and I'm maybe too early to judge my outcome. I have suddenly had a crushing bout of Reumatoid Arthritis after the surgery. Suddenly elbows and knees and calves full of fluid and barely able to walk. Other issues but I will save you the worry because we are all different. I feel my body is rejecting the titanium. But I'm not a Dr. Whatever you decide I wish you the best and stay in touch with the people on here, they will save you and your sanity if things get tough.

[Lilysaidwhat]

Leanne I'm so sorry you've had so many problems.

One of the reasons I'm doing it now is because I'm already up to 68* (or 64 depending on who measures it) up top and my pain is steadily increasing. The longer I wait, the more deterioration and more that I'll have to fuse. I am a very "young" 38 and am hoping this gives me the best "bang for my buck" with the most optimal opportunity for a swift(ish) recovery. Also, we want to adopt kids. It is surely going to be better to do this BEFORE I have babies who need to be picked up - right now, pre-op, I can definitively say that I will only hold a baby when I am seated because I never know when my hips will give out. I want to be able to hold my children. Pick them up when they cry. Walk around the nursery, rocking them and shushing them back to sleep. Those are not a possibility for me now.

I am admittedly worried about constipation. I've never been constipated in my life and it sounds really awful. I have been under general anesthesia for minor surgeries, and have taken percocet, vicodin, etc before without issue.

My husband says the two big drivers for getting out of the hospital are fatigue and constipation (you have to be able to walk stairs and take a poo). Both of those can be remedied with a triple cappuccino, which I drink every morning and he promises to bring me as soon as I'm not nauseated. Maybe it will work, maybe not.

I think it's good that I have a goal of 4 days to get out. If it's 6, it's 6, but I will shoot for 4. The less time in the hospital, the lower the risk of infection, MRSA, staph, and bad sleep. And of course, the lower the bills.

If this is the beginning of one compounding issue after another then I'll deal with that when it comes. But for now, I have to believe that it's the best thing to do, and that time is a bitch. The longer I wait, the worse it will be on me.

I wish you all of the best and hope how soon you feel like - nay, better than - your old self. hugs to you.

[jeneemohler]

Wow Lily-
I am amazed at how different your tone is in this last post, as compared to the first "I'm terrified" post. You seem to be more accepting, and it looks like you have looked at the surgery realistically from all the angles. Yes, things can and do go wrong, but only in a minority of the cases. This may sound silly, but I'm really proud of you!!! It will ALWAYS be scary, but the more you know and stay on top of remaining positive, the easier it gets. I am also almost 50 (not a youngster but not TOO old!) and I did great. I'm no superhero, just an ordinary woman. You will do great! We are all here rooting for you while you are waiting this out!! Believe me, that was the hardest part for me.

[sarahcant]

thanks for the updates

I really need to learn how to read this forum! Here I am feeling sorry for myself that no one replied. waaa anyway thanks everyone for the support. So sorry leannebr for your troubles. I am totally sure that I need this surgery. I cant even walk a block with my dog or on a treadmill without terrible pain. My back muscles are very tired of holding up my spine. I also have numbness in my legs. My right side used to be the only one that bothered me and now my left is terrible. I'm also starting to not be able to stand straight at all. I have deteriorated terribly since hitting my late 40's. I am on vicodin now all day. I used to get away with one and a half at night but no more. I dont see that I really have much of a choice here. I too have a wonderful friends who have offered support. I'm so worried about my gray hair and I spoke to my hairdresser who said "dont worry I make housecalls!" and I have a friend who is a massage therapist who already said she would come over and massage what she can. And Jennee yes we all seem to be very tough cookies! I'm positive that my stubborness and toughness will come to my rescue when I need them. Jess I have seen everyone except Boachie they all say the same thing. I know a few people that have used Dr. Errico and they all love him and he takes my insurance so I'm taking that as the sign to go ahead and just get this over with. Thanks everyone for your support --- I'll definitely be needing it!

[leannebr]

I wish you all the very very best from the bottom of my heart. I pray you will have a wonderful outcome and everything goes really great. It's such a hard decision, I know, I didnt sleep for a long time trying to make the decision. We are all a TEAM here on this forum, in my eyes, and everyone knows how you are feeling and can help you, support you and comfort you. )) Most importantly look to God for answers and help. Even though I have had so much problems since my surgery, I still believe God directed me to do the surgery and the outcome is His plan for me as well.

[JenniferG]

Leanne, please keep us updated won't you. I'm sorry you're enduring this and I hope you get the proper treatment. I hope it's not long before you tell us that you're getting help and it's working.

[Lilysaidwhat]

Leanne, I really hope you get some better health soon. I can't imagine your frustration.

Jenee', I feel like I don't have a choice so I have to get my game face on.

Yesterday was blood donation #1 (second is Monday), final bloodwork, final Xrays, etc. Confirmed that I have God's smallest airway and get the pediatric sized #1 tube. Yay. I'm sure that won't be sore post-op....

Otherwise the big news is confirmed - I'll be fused T3 - L4. Definitely no lower than L4, but he may get in there and opt for T4 instead. Let's all cross fingers for that please.

Stainless steel rods, not titanium for me. He recommended autograft, I asked for allograft and he said no prob, plus it reduces surgery by 20 mins or so.

I don't go to Recovery at all. Directly from 5-6 hr surgery to SICU where I will stay overnight, up to 2 days depending on progress. Then we get the standing, and start food intake with ice chips.

I'm a puker by nature so the anesthesiologist - who was so amazing that I am going to send a letter to their group - gave me Zofran and told me to take that, Xanax, and my normal tramadol dosage before I leave for the hospital to help with the nausea.

My curve is pretty flexible which is good news. I told him I don't want to be much taller, he said I will get between 0.5" to an inch. That's fine, since that's what I lost. Otherwise no rib removal, and it should be fairly straightforward. They got a lot of correction doing traction for the xray - and I suspect it was more than normal (he seemed a bit impressed) due to the fact that I've been in PT and getting traction stretching weekly for almost a year. Big ups to David Mikos, the best PT ever.

I told him my concerns about shift, and he said he will be sure to avoid correction that would make me that way.

The next two weeks are going to be really hard - and I know the waiting is almost worse than whatever I'll encounter physically. It took 1.25 mgs of xanax to get through yesterday. That's 5 times what my normal dose is.

I spent the weekend with my family down south, and my niece (she's 8) has insisted that she come spend her spring break with me. She is such a caretaker by nature and wants to "help by bringing things, playing puzzles, and I'll even keep (my husband) company by playing Wii. Did you know you can play Mario Kart from your bed?" She was scared when I first explained a little about the rods, but when I said that it's like a cast for a broken bone but inside your body, she freaked that they will "be in there forever." I said, "Yeah, but it kinda makes me like a Transformer." She settled down and said, "Well, that's pretty cool, I guess."

So Aunt Transformer will have bedside service for a week in late March.

It's just the next two weeks that are killing me.

Thanks again for the support you guys.