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View Full Version : Terrified: Scheduled for Spinal Fusion in April with Dr Boachi at HSS



NotReadyYet
01-21-2009, 02:36 PM
I am a 55 year old woman who has been in significant pain for over 2 years now. I was never clearly diagnosed with scoliosis until 2002. I had an incident 2 years ago and since then I have seen many many doctors from local orthopedic surgeons to the Rothman Institute in Philadelphia who eventually sent me to Dr. Boachi. I have an S curve with a 49 degree curve at top and 41 degree at bottom. Everyone says I hide my curve well.

I am scheduled for Spinal Fusion T4 - S1 surgery with Dr Boachi at Hospital for Special Surgery NYC in April

I have heard nothing but wonderful things about HSS and Dr. Boachi but I am terrified and NotReadyYet because I don't know what to expect and could use some advise and information.

1. Do I need to be concerned about insurance coverage? Do I rely on the doctors office or contact my insurance myself?
2. What should I do now to prepare? During the last 2 years I have done little exercise and have gained weight.
3. What about blood donations? Do I have to do that now for April? How much and how often?
4. How much pain is it after the surgery?
5. What can I expect to be like once I get home? Do I need a bed downstairs? Do I need constant care or can I be alone?
6. Will I really be taller? :p
7. What else should I be asking?

I would love to hear about people's experience and will begin to search this site.

Thanks to all in advance.

debbei
01-21-2009, 02:42 PM
Hi Not Yet,

I answered your questions in Peachy's thread. I'll try to move them here. :)

Susie*Bee
01-21-2009, 06:28 PM
Hi NotReadyYet!
This is the best way to get ready-- asking questions, getting information, and getting support! You'll find if you do searches that you can glean a lot of information from people who have already taken this journey and shared what they know. There are a lot of great people who will be glad to help you from their own experiences. Best wishes as you get ready for April! You can do it! Just take a deep breath and take one step at a time. :)

1. Do I need to be concerned about insurance coverage? Do I rely on the doctors office or contact my insurance myself?
You can do a search to see what others who are Dr. Boachie's patients have done... plus I'm sure you'll hear from some.

2. What should I do now to prepare? During the last 2 years I have done little exercise and have gained weight.
My surgeon stressed to me the need for doing some exercise that will strengthen your heart for the surgery. I also will add about strengthening your legs for squatting and your arms for pushing you up from sitting, etc. As far as weight goes-- it never hurts to lose a few if you have extra, but again my surgeon said it is much more important to have been eating healthily going in to the surgery. So probably just cutting out some of the junk and expanding on the healthy stuff would be your best bet since surgery is fairly close.

3. What about blood donations? Do I have to do that now for April? How much and how often? Debbe's right in saying to ask Dr. B's office about that. If you donate, it will be during the last month and not during that last week prior to surgery, as blood doesn't store beyond that without freezing it, and that is very expensive. If you are going to donate, do a search on hints for building your iron, etc.

4. How much pain is it after the surgery?
Ahem. That is a tough one. It is hard work after your surgery for sure. You will feel like a truck hit you. Or at least I did! You will not feel like doing very much for awhile. Actually some of your feeling is deadened a bit by the surgery for awhile-- and the pain meds help keep pain under control. There are tons of us who have managed ok. It is not a walk in the park, but you can get through it. After all, there's the new you to work with! ;)

5. What can I expect to be like once I get home? Do I need a bed downstairs? Do I need constant care or can I be alone? It would certainly be easiest if everything were on one level rather than having to go up and down stairs. By the time I went home I was able to go up and down stairs, but it was with difficulty. I had to go up stairs to get into my house, but then it was on one level. That worked out well for me. You might want to move a bed downstairs... And I needed fairly constant care-- or at least checking on fairly often after I got home. It depends on so many factors and how you've prepared ahead of time. Some people are much more able to do things than others! I was 56, so close to your age, when I had my surgery and had a long fusion like you are going to have. Even so, everyone is soooo different. If you want to ask me more about how I did, I'll be glad to share.

6. Will I really be taller? It varies. I grew probably 1.5" or so.

7. What else should I be asking? If you do a search, you'll probably get some ideas. If you have time, there are two really helpful books and a website that is wonderful. I'll paste a link to another post I wrote once, where they can be found...
http://www.scoliosis.org/forum/showpost.php?p=60239&postcount=12

bsprings
01-21-2009, 06:42 PM
Hi NotReadyYet,
I also had surgery with Dr Boachie (T4-Sacrum as well) 2 years ago and I am doing great. (I am now 47). You are in great hands and should not worry-your curve is relatively small compared to what mine was! (Over 100!) Will you have just the posterior surgery? Feel free to PM me with any questions!
Cathie

Karen Ocker
01-21-2009, 06:52 PM
Not ready Yet:

I was older than you and got my life back.

I sent you a private message.
You can call/e-mail me.

JenniferG
01-21-2009, 07:26 PM
Welcome NotReadyYet!

I can't answer your questions because I'm still to have the surgery, but I'm scheduled to be fused T5 - S1 on March 3.

It took me months to come to terms with having to have this surgery but I'm currently at the stage, I'm tired of being fearful and just want it over. If he rang me today and said can you be at the hospital tomorrow, I'd find a way.

I'm looking forward to being straighter and more stretched out and, once over the recovery, not having to worry about my scoliosis ever again!

Susie's right, the more questions you get answered, the more you can come to terms with this surgery ("This Thing", I call it!);) All the very best!

Nancy Joy
01-22-2009, 12:17 AM
I see you did start another thread so I am repeating my thoughts here for you.

I would like to just add a couple of views. I too lost my abililty to do exercise (for a year ahead) and that was a big reason I wanted surgery- if I couldn't do aerobics or strength excercise, which I loved to do, how was I going to keep the rest of me healthy? I kept reading what others were doing for exercise to get ready and thinking- well, if I could do that, I wouldn't have surgery yet. I just had to go the way I was and I was fine.

Also, my bedroom is on the 2nd floor and you will have physical therapy at the hospital and be able to do stairs before you come home. I was relieved (and I asked ahead of time) as there really isn't room on our main floor for a bed. All worked out just fine.

I understand your apprehension but I was happy they could finally do something for me after years of suffering. Good luck and I am glad you joined us.

Singer
01-22-2009, 07:30 AM
Nobody could have been more terrified than I was, and I lived through it!! (I'm 53 now.) It is a challenging surgery but I'm doing very well and I got a fabulous correction. Dr. B really knows what he's doing. You've already received great advice but I would add: think about getting a private night nurse during your hospital stay at HSS. The nurses there are extremely busy and having someone with you at night makes a huge difference. You can arrange the private nurse through Lindy and your insurance will probaby reimburse you for at least part of the cost.
Good luck to you and feel free to PM me with questions as well.

NotReadyYet
01-22-2009, 11:42 AM
Thank you all so much. I look forward to more communication with you. I so appreciate your candor and willingness to share.

CHRIS WBS
01-22-2009, 04:42 PM
I can’t answer your questions re insurance but I believe that’s been covered by those who have also had surgery by Dr. Boachie. I had a posterior fusion from T4 to the sacrum seven months ago at age 59. I was in surgery for 12 hours. I was hospitalized for six days and then went to rehab for two weeks. My hospital stay was a nightmare. While I thought the world of my surgeon, the hospital was another story. The staff at the rehab was very attentive and I got great care during my stay. I actually hated to leave. Do you live alone? If so, you will definitely need help. I live alone in a two-story townhouse and initially my sister was going to stay with me for a few weeks during my recovery after my release from rehab. However, I left the rehab facility in a walker and I was not at all comfortable going up and down stairs, and my sister felt uneasy so my brother and sister-in-law who live 2½ hours away suggested I come and stay with them. Their house was much more accommodative for my situation. My bedroom and bath were on the same level and I had just a few steps to climb to get to the kitchen. As a precaution, my sister-in-law stood outside the bathroom door the first few times I showered. All my meals were prepared by my brother and his wife so I did not have to worry about doing any cooking. And my sister-in-law who works from home very kindly did my laundry. After two months I felt comfortable enough to return to my own place. And even though I was still using a cane, I felt secure enough to be alone and go for my daily walks, and friends and co-workers were just a phone call away. I started driving a week later and was able to get groceries for myself and pretty much manage on my own. I returned to work four months after my surgery. My big curve was corrected to about 35 degrees and once everything settled, I gained about 1½” in height. While I am much improved, I still have some deformity…all the more reason to have this surgery when you’re younger if possible. If you are having just posterior, you will probably have a faster and easier recovery. From reading the posts here, I think those who’ve had anterior and posterior have a tougher time and are on pain meds for a longer period. You have a great surgeon and I’m confident you will get through this successfully. All the best to you. Chris

lelc2002@yahoo
01-22-2009, 07:49 PM
Hi---I had surgery 21/2 yrs ago by Boachie and I am doing very well.
As a teenager, I had an S curve balancing & then by 40 after the birth of my son, the lower curve increased rapidly. It was 95 when I was operated on but brought down to 60. I would be happy to answer your questions. Feel free to PM me if needed...Lynne:)

Doodles
01-22-2009, 09:25 PM
Welcome! You've come to the right place. I finally joined on a few weeks ago after months of reading. I'm 57 and am scheduled for March 30 in St. Louis. I know exactly where you're coming from--that terrified part. Just when I'm sure I'm OK with all of this, I totally freak out & am convinced I'm crazy for doing it. I guess the more I find out though the better and this is a great place for this. I think most of your questions have been answered by those who have had surgery. Just thought I'd say hi! since we are both on "this side" for a couple more months. Janet

titaniumed
01-23-2009, 12:26 AM
Hi Not ready,

Us posties 'know" exactly how terrifying it is, not only to make the decision, but what its like after you commit, and set that date and wait it out. Its that "twilight zone" period where the reality check kicks in, and your thinking, Am I ready yet?

Sound familiar? Yes it does! But you made that commitment all by yourself. Or at least you should have, because its the most important, profound decision that we scoliotics make in our lifetime. Its that decision that's dictated by a host of factors, the main one being pain. You are thinking, I have made it this far,but I just cannot deal with the pain anymore, and I need to get this fixed.

Shock sets in and we turn into zombies. We walk around thinking "What the hell did I do ?" "What's going to happen?" "What can I expect?" and a thousand other questions. After all, its MAJOR surgery. We actually exist in a fog where our loved ones speak to us, and most of what they are saying really doesn't get through. Its a perfectly normal reaction.

It was so bad for me that I tore my rotator cuff, broke my shoulder, and never even made it to the hospital. I was such a zombie that the pain from the shoulder didn't even matter and I was working full time leading up to my surgeries.

Quite a few of us know "exactly" where you are at. Its part of the process.

Living your life in fear is not the way to live. You have already made the first step, now educate yourself as much as possible, so you know what to expect. Get strong, mentally and physically. Eat healthy, stay out of the center of the supermarket.

We are just so fortunate to have well trained surgeons and modern technology, to help us with our situation. I am absolutely amazed how well my surgery came out. I am completely pain free, and 4 inches taller. Being out of pain after all the years is incredible.

NSF has a few books you should read.
There are videos available online.
Also tons of websites on Adult scoliosis surgery.

Regards
Ed

NotReadyYet
01-23-2009, 03:10 PM
I am learning a lot and knowing what to expect is better than the unknown (even when what to expect doesn't sound so great).:mad:

I especially thank you for discussing "everything" . I go through my days and say to myself; as I twist or bend to do something..."Well I am not going to be able to do that after the surgery" I appreciate the suggestion about the toilet paper tool. That was one of the first things I thought about. I am going to make sure I have one! :)

I will be having a posterior and anterior. My husband will be with me but I can't expect him to be away from work the whole time I am recovering.

Over the next month, I hope to reach out to many of you and soon, I guess, I will be ready!

With Warmest Regards and Thanks for the support

JenniferG
01-23-2009, 03:54 PM
Sounds like you're on your way, NotReadyYet.

I found that as soon as I joined this forum, I started accepting the surgery. My questions were being answered, thoroughly and honestly, which was what I needed. As you say, the not knowing is the worst. It's still very scary for me but many on here have been able to be quite calm by the time their surgery date arrived. I doubt I will be one of them, but I am hoping!

It makes me wonder how awful it must have been for people facing major surgery, without their questions being answered. Isn't the internet amazing?!

theizzard
01-24-2009, 08:49 AM
Regarding your insurance question, if they let you book the surgery, then they have determined that your insurance will cover it or you have agreed to pay them a certain portion if they don't get what they are expecting from your insurance. Theresa told me that my insurance plan which is personal choice (i am from pa) was one of the worst personal choice plans and I would have to give them about $50k pre-surgery or i could not book surgery. Consequently, your insurance must be good or you would not be able to schedule surgery. Who did you see at the Rothman Institute? I had both of my hips replaced by them and they were wonderful but I wasn't comfortable with them for this extensive surgery. Since I don't have an extra 50k I am having surgery with Dr. Rand in Boston this coming Wednesday. Dr. Rand & Dr. Boachie were the only doctors out of 5 consultations that I felt confident with, to perform such an extensive and complicated surgery. Dr. Rand is part of my insurance network so that was a real bonus. It just cost me a small fortune going up to Boston for the needed pre-screening etc. I booked the Acela for the ride home so that I could be waited on in the train on the way home. My husband will be with me but he can be temperamental at times. Sorry I rambled so much. Good luck with your surgery. You have the best in the business operating on your back.
avis

JenniferG
01-24-2009, 04:05 PM
Next Wednesday, Avis? Wishing you all the very best!

I look forward to hearing how you are asap.

titaniumed
01-25-2009, 11:47 AM
Hi Not ready

I too was worried about the wiping thing. I never had any problems and I'm fused all the way up to T2. They ordered the "tool" at the hospital, but it never made it to my home. I wouldn't worry about that for now.

Right now, I think its most important to build your strength and your immune system. You need to be going into surgery as strong as possible. You know the procedure, drink lots of water to flush toxins, fruits, veggies, no fat, exercise, vitamins,etc

They wanted me to lose 15 lbs, as they have to cut through the fat. I lost 8 lbs and was in good shape. Your body goes into OVERTIME while healing, and needs to be in good condition for the shock of surgery. Put the sneakers on and start walking. Walk out your anxieties,it helps.

Its a small world you know, I went to Farragut in Pine Beach,NJ a million years ago, back when the Garden State pky was 10cents per toll. LOL I moved west for skiing in 1980.

Avis
You date is coming up almost on my one year anniversary. I wish you the best. Keep us posted.
Ed