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Mom of 4
09-16-2015, 06:34 PM
I'm new here and so very scared!

My scoliosis was diagnosed in my early 20's, by a dressmaker of all people! Over the years, the curve has progressed and so has the pain. I take some sort of pain reliever (acetaminophen or ibuprofen) every day and use a heating pad often. Now that I have a surgical date, I'm beginning to question if the pain is bad enough to go through with it.

While I don't have a specific surgical plan yet, I am scheduled for a 2 day procedure, Anterior Fusion L4 to S1 and Posterior Fusion T4 to Pelvis.

The last doctor I saw (not the one doing the surgery) told me it wasn't a matter of if I have surgery, but when. He said if I don't have it, my rib cage will end up on my hip.

According to my X-rays and MRI, I have a lumbar scoliosis with a rotary component convex left measuring 60 degrees and a compensatory lower thoracic curvature convex right measuring 24 degrees. I was also told that I have significant subluxation of L2 laterally to the left with respect to L3. Mild spinal stenosis. Encroachment of the neural foramina on the left specifically T7/T8-T10/T11. Large disc bulges involving the cervical spine. Kyphosis, not sure what degree.

I hate to say it, but I don't completely understand it all! I do know that, if possible, I avoid activities that I know will cause me discomfort/pain (standing, walking, etc). I've shrunk 2 inches. The curve is progressing. I now get a "sensation" down my left leg all the way to my toes. I had a CT Myelogram, but didn't get the results explained because I was referred to another surgeon.

I'm a 47 year old married mother of 4. I have a pretty good support network, and timing-wise, it seems like now is good. But I keep thinking, what if my surgeon isn't good enough? What if the hospital provides lousy care? Is the "potential" improvement worth the risk? Does the pain really warrant me having major surgery like this?

I've changed my mind a hundred times since I scheduled. I'm going back to see my surgeon on Monday to ask more questions. The week after that, I am scheduled to start donating blood.

Any thoughts would be GREATLY appreciated!!!

Thanks!
Nancy

mabeckoff
09-16-2015, 07:18 PM
Welcome Nancy

Who is your surgeon and what hospital are you using?

Melissa

Mom of 4
09-16-2015, 07:42 PM
Thanks, Melissa!

Dr. Daniel Gelb
University of Maryland Medical Center

titaniumed
09-16-2015, 09:03 PM
Welcome to the forum Nancy!

I see that Dr Gelb has a Washington University fellowship and a Cotrel fellowship....He is no doubt a scoliosis surgeon. Dr Cotrel is a 50 year French spine deformity genius and pioneer. He wrote a book called ďIn the sands of BerckĒ Itís a good book, but it seems that Iím the only one who appreciates this material. (smiley face)

http://www.amazon.com/In-Sands-Berck-Unexpected-Physician/dp/B003Y5BQ7O

Where do we start? I guess there comes that time when we ďheaviesĒ have to make our commitment......and yes, we are all very scared. I think I was lucky that my mind blowing pain helped in my decision. I also knew that the pain would only get worse......Degeneration is a hard thing...

Itís a 2 year recovery......The first 6 weeks are the hardest and I guess the easiest way to explain recovery would be to say figure roughly 10% improvement per month....(I know, the math doesnít work)

I was 90% after a year. It took another full year for the last 10%. I call my second year, my fine tuning year.

Being an informed patient is very important. Knowing that things can happen regardless of surgeon and knowing that we are very complicated needs to be understood. Having a positive attitude is the only way to handle scoliosis surgery.....Try not to think about negatives if you have made your commitment. You will learn patience to its extreme, and adapt with the best attitude you can.

I went outside and ran for anxiety......learn to breathe deep.....

Ed

PeggyS
09-17-2015, 08:44 PM
Welcome aboard, Nancy! It's a big decision, and a tough one!
Learn as much as you can about the surgery & the healing process.
Prepare your house, so things are within your limited reach. There are lots of lists on this board of things to do to get ready. Feeling prepared helped me a lot.
Also, have a picture of a fusion or your fusion to share with others. Everyone knows someone who has had back surgery - scoliosis fusions are so much bigger than the 'average' back surgery that comes to mind for most people. I took a photo of the skeletal model in my surgeon's office.
Sending prayers!

golfnut
09-18-2015, 07:29 AM
Nancy,
Welcome to the forum. I couldn't have made it through the pre-surgery time without this forum. While looking forward to getting a straight spine, I was petrified of the surgery. The knowledgable people on this forum helped me through it all-before surgery and during my recovery. Best of luck with your surgery.

Mom of 4
09-18-2015, 05:28 PM
Ed, Peg and Karen-I can't thank you enough for your kind words and suggestions! This forum is amazing. It's such a blessing to be able to connect with people that are or were in the same shoes as me!

Nancy

JenniferG
09-18-2015, 06:54 PM
Totally agree with previous posters.

My biggest anxiety was caused by not knowing... I wanted answers to my questions - the good, the bad and the ugly. I needed it all, so that I knew exactly what I was facing. Members here were very helpful. I got all my answers here and I felt more confident going into surgery.

I was lucky, I could walk without pain (but couldn't stand for more than 30 seconds without pain) and I was a kayaker, so I got very fit. This helped with my fears as well, because I went into surgery feeling like I could face anything - and win. And I did.

So, 1) knowledge, 2) fitness, 3) preparedness - i.e. house, family, help.

Very best of luck. You can do this!

jackieg412
09-19-2015, 07:56 AM
Nancy welcome to the forum. It is a scary ride for sure. If you have a good support staff that is gold. There is never a perfect time. Things get in the way. My only advice would be to choose a time of the year that you will be able to get outside. You do need to do a lot of walking at first and that is hard to do inside. Good luck. Getting ready will just grab you and take you along.

kennedy
09-20-2015, 06:40 AM
welcome to the from Nancy

fifa
09-20-2015, 11:56 AM
I'm new here and so very scared!

My scoliosis was diagnosed in my early 20's, by a dressmaker of all people! Over the years, the curve has progressed and so has the pain. I take some sort of pain reliever (acetaminophen or ibuprofen) every day and use a heating pad often. Now that I have a surgical date, I'm beginning to question if the pain is bad enough to go through with it.

While I don't have a specific surgical plan yet, I am scheduled for a 2 day procedure, Anterior Fusion L4 to S1 and Posterior Fusion T4 to Pelvis.

The last doctor I saw (not the one doing the surgery) told me it wasn't a matter of if I have surgery, but when. He said if I don't have it, my rib cage will end up on my hip.

According to my X-rays and MRI, I have a lumbar scoliosis with a rotary component convex left measuring 60 degrees and a compensatory lower thoracic curvature convex right measuring 24 degrees. I was also told that I have significant subluxation of L2 laterally to the left with respect to L3. Mild spinal stenosis. Encroachment of the neural foramina on the left specifically T7/T8-T10/T11. Large disc bulges involving the cervical spine. Kyphosis, not sure what degree.

I hate to say it, but I don't completely understand it all! I do know that, if possible, I avoid activities that I know will cause me discomfort/pain (standing, walking, etc). I've shrunk 2 inches. The curve is progressing. I now get a "sensation" down my left leg all the way to my toes. I had a CT Myelogram, but didn't get the results explained because I was referred to another surgeon.

I'm a 47 year old married mother of 4. I have a pretty good support network, and timing-wise, it seems like now is good. But I keep thinking, what if my surgeon isn't good enough? What if the hospital provides lousy care? Is the "potential" improvement worth the risk? Does the pain really warrant me having major surgery like this?

I've changed my mind a hundred times since I scheduled. I'm going back to see my surgeon on Monday to ask more questions. The week after that, I am scheduled to start donating blood.

Any thoughts would be GREATLY appreciated!!!

Thanks!
Nancy

Hi, Nancy -

I'm ten months out from surgery and can say now that I'm so happy I did it. I put it off for as long as I could, thinking that it was a choice and that someday, I would get around to it. (smiley) A year ago in August, I twisted in bed and broke a facet joint (I had broken one before years ago). All of a sudden, I realized that (for me) I wanted to get it taken care of before something worse happened. That day a year ago really scared me. So, even though the timing was not great for me, I went ahead.

The first few months were hard, but honestly, those are vague memories now thankfully. I have almost no low back pain and can walk and stand better and longer now than preop.

It sounds like you have a good surgeon and lots of family to support you, which is fantastic! You never know what kind of care you'll have at any hospital. I would suggest to you that you have family members at the bedside to advocate for you...people who know you who can tell if something is not right. You'll be on a lot of medications during your hospital stay. I barely remember the hospital now, at ten months out. Sometimes I still can't believe I'm on the other side...I lived with knowing I needed surgery for so long.

I found the forum here doing research a few years ago when I was trying to find surgical alternatives. The people here are a HUGE blessing. If this seems like a good time to go ahead, then I wouldn't hesitate. Your mental attitude and the support of your family and friends, in my opinion, will make all the difference in your outcome. You'll make the right decision! (smiley)

Good luck to you. Sending gentle hugs!
Fifa

Mom of 4
09-29-2015, 06:53 PM
Today was an eventful day! I got a call from Kathy at Dr. Lenke' s office. She said Dr. Lenke will see me. I can't believe it!!! I sent my CD's several weeks ago and never thought I had a chance. Someone is supposed to call me tomorrow to schedule the appointment. In the meantime, I am still scheduled for surgery in late October in Maryland. I just donated blood for the first time yesterday, with 3 more donations scheduled and pre-op testing on Monday, 10/5. I'm excited, but conflicted.

When I originally spoke with Kathy, she told me Dr. Lenke wouldn't do an anterior surgery on me because he can do everything needed posterior. One surgery sounds much better than two, but I'm wondering why the surgeon in Maryland can't?

golfnut
09-29-2015, 07:57 PM
Nancy,
I am so excited to read that you have an appointment with Dr. Lenke. He was my surgeon and is one of the best in the country. I could be wrong, but I think he actually teaches other surgeons the "reach around" method of fusing the spine so that there is only one incision and one day for the surgery. I know that's what he did with my spine. I am fused T4 to the sacrum and have returned to all of my former activities with some modifications. Everyone is different and not all have as good of results as I have and I feel extremely fortunate. I truly believe that having the best surgeon possible certainly increases your odds! Also, get in the best physical shape as you possibly can. I'm anxious to hear about your appointment with Dr. Lenke. Tell him that Karen, the golfer from St. Louis, said "Hi".

ksmom0611
09-30-2015, 01:02 PM
Hi Nancy,

You and I could be twins! Except I have 2 kids....but that's enough! Our levels are/were the same, as are many of the degrees and curvatures. I had the surgery in January and would be more than happy to talk to you. My surgeon was Dr. Lonner in NYC. Your description of your current status, including limitations and pain, sounds exactly like me before surgery. Also, your fears sound like mine!!! To quote my little kids, "you're copying me!" Definitely private message me if you'd like!

Hang in there! In my opinion, this is the toughest time!

K

titaniumed
09-30-2015, 11:43 PM
I'm excited, but conflicted.

When I originally spoke with Kathy, she told me Dr. Lenke wouldn't do an anterior surgery on me because he can do everything needed posterior. One surgery sounds much better than two, but I'm wondering why the surgeon in Maryland can't?

Each surgeon has to weigh the pros and cons to each method or surgical attack for each patient. My surgeon added the ALIF anterior procedure since he felt that it was necessary due to a high level of degeneration in the disc area or front part of my spine.....I donít think that just because all scoliosis surgeons donít do posterior only wrap around procedures means that they are not trained well or have lack of experience. Some of the procedures really do get quite involved, and many of the ďscoliosisĒ surgeons are trained to do these procedures.

I hope this makes sense.....

If you have a date set with your surgeon, and decide to switch to another surgeon, give him notice if you do pull the plug. These guys put an intense amount of thought into these surgeries.....My surgeon wanted a 30 day notice if I decided I was going to chicken out. I did do that once in the past, and its ok, but you shouldnít wait till the last minute. Getting a second opinion is also ok, and perfectly acceptable to mention. If the 1st surgeon has a problem with that, then move on....

You need to be comfortable with your surgeon.....

Ed

Mom of 4
10-02-2015, 08:08 PM
Karen, I will definitely say hi to Dr. Lenke for you! I agree about increasing my odds with the most experienced surgeon I can get.

K, sorry to be a copycat! I will pm you soon.

Ed, I appreciate and respect your opinion. I did cancel, so I guess I am scared and unscheduled for the time being. My (former) surgeon said he does 1-2 of these surgeries a month. As huge as this is, I'm not sure that's enough "practice". Maybe I'm wrong.

I will see Dr. Lenke November 4. I might have run into an insurance problem, though. Dr. Lenke wasn't listed as a preferred provider for BC/BS. The hospital is at least.

titaniumed
10-03-2015, 12:01 PM
Ahhh, Cup of Joe. (Where the heck did that come from?)

Ok on the cancellation......and probably a good idea to see Dr Lenke. I wrote another detailed post yesterday in defense of all the other scoliosis surgeons that are out there that are not in the ďtop tenĒ group. I did not select one of these and I came out as good as I can be considering my specific problems.....My surgeon is a genus, I have no doubt in saying that.....Every once in a while, all scoliosis surgeons will have a difficult outcome, it doesnít matter if they are the best, or publish, or are recommended. Scoliosis surgery is not something we take lightly, it can be serious and yes, initial selection of your surgeon weighs heavily.

I write many draft posts that donít make it here to the board, they get saved and then deleted. Maybe its proof that our thoughts about things can change slightly on a daily basis....and then someone else will post something that is brilliant. Itís the beauty of the forum.

It would be a really good idea for you to read David Wolpertís book. I forget the title, it has something to do with scoliosis surgery. (smiley face) Iím such a dork sometimes......You can order it here.
http://www.scoliosis.org/store/books.php

I was diagnosed 41 years ago with twin 50ís and was told I would eventually need surgery by every single doctor I ever saw.....(including my Chiropractors) I rejected the surgical idea due to my skiing. I believe that extreme skiing destroyed my spine, but it also helped delay the decision all these years and suffered with incredible alarming amounts of pain. As the pain increased, my surgical thoughts increased. I experienced incredible amounts of burning and electrical typeís of pain. My CNS was shot at the end, almost like a car battery with 1 volt. Lethargic and exhausted from the battle. I was dying. We have electricity in our bodies you know, it got to the point that I couldnít light up a light bulb like Uncle Fester anymore.....(smiley face)

We also didnít have a scoliosis surgeon here in Reno years ago so that helped with the waiting process. By the time Dr Menmuir came to town, I knew that I needed to start the talks. I knew that I wasnít going to make a decision right then and there, but we would go and talk about things. It was scoliosis psychotherapy which was something that had to happen. Knowing and accepting what would happen or what could happen. King Kong and Godzilla. What are you telling me? You have to be kidding? Accepting and learning all the medical jargon was a learning curve that for me became necessary. He wanted me to think, and learn, and join this forum.

I was a reader for many years here but didnít post and its funny how that works.....sitting on the sidelines listening. Its good that you decided to post your story, and no questions are dumb.

Its funny how we hear about all these insurance problems and I thought Obamacare was supposed to make these things easier? I know, its BS, but things will work out. See if the insurance people at Dr Lenke office can work these things out.....thatís their business.

Ed

mabeckoff
10-03-2015, 03:52 PM
I had a very bad case of scoliosis and did not had one of the top ten doctors and he is a genius.

Dr Bederman speak hours preparing for my surgery . He fixed what my surgeon in NC screwed up big time. My first surgery with him was 15 hours long . I have had several smaller surgeries with him after that.

I do not know where I would be without him .

Melissa

cathydrew
10-03-2015, 04:51 PM
I will see Dr. Lenke November 4. I might have run into an insurance problem, though. Dr. Lenke wasn't listed as a preferred provider for BC/BS. The hospital is at least.

Dr. Lonner was not a provider in my insurance plan, but accepted what my plan paid, which was I believe 80%. I made sure the anesthesiologist and thoracic surgeon accepted my insurance too. The girls in the office did everything possible to keep out of pocket minimal and it was definitely manageable. They're the ones who will know all the details.

Also, I'm almost 6 months out and just so happy I did it. I have some pain but it's easily controlled and I'm back to everything I was doing before my scoli got bad, including my job teaching 5th grade, and singing with two different bands, with lively performances and rehearsals. Today, I got socks on, and leggings and boots! I've kept off the weight I lost and then some...I love my new waistline and plan to keep it! My back itself never hurts (it's itchy as hell last few weeks but that's ok) what bothers me most are my pelvic bolts 😳 I'm hoping this goes completely away eventually. It's sooooooo much better already.

I'm thankful for my recovery and lack of surgical complications and hopeful for some years of peace...who knows what lies ahead for me, I'm enjoying the life I feel I just got back in April.

I hope your decision gives you peace as well.

green m&m
10-03-2015, 07:13 PM
Mom of 4,

You are seeing Dr. Lenke at Columbia correct? Since he recently switched hospitals itll take a while for him to renegotiate contracts with insurance companies.

I had to wait 6 months after one of my docs switched hospitals in town (one nyc hospital to another) to see him because it took that long for him to become in network at the new hospital.

You could call Lanke's office and see if they can tell you if he will be in network provider with your insurance (and when)?

Mom of 4
10-08-2015, 08:33 AM
green m&m, you were exactly correct! I called Dr. Lenke's office and was told that he just became a participating provider. Pfew!!!

Ed, I took your advice and am currently waiting patiently(not) for Amazon to deliver the book you suggested. Can't wait to read it!

I am so relieved that I am "not scheduled" right now, but on the other hand, I wish my surgical date was tomorrow so I could get it done!!! The reality is I AM going to proceed with surgery, I just need to figure out how to get there with a reasonably sound mind. I know exercise is a great stress reliever/distraction, but I am lacking the motivation to do something that is going to make me feel miserable physically. I'd really like to improve my cardiovascular health before surgery, but yoga is about all I can do.

ksmom0611
10-08-2015, 09:08 AM
Good news about your dr!

Improving your cardiovascular health is great, but I'd also work on strength training for your arms and legs. You end up using them A LOT after surgery. I wished I had done more of that (and lost weight beforehand). The quads and glutes (sp?) are the best things to strengthen in the legs.

You may not think you are progressing on this path because you aren't having the surgery yet, but the whole process of thinking about it, getting information, gearing up for it are all steps forward. You are taking care of yourself and that's great!

leahdragonfly
10-08-2015, 09:49 AM
Hi there,

Good luck as you proceed through all of the pre-surgical terror…it really is terrifying, we have all been there and are here to help you.

My one suggestion is to get your legs as strong as possible…do lots of squats so you can easily squat to pick things up and stand right back up, ideally without holding on to anything. That was a major frustration for me post-surgery, not being able to reach stuff, and having to squat a lot. As someone suggested above, get your quads and glutes into iron-strong shape! You will be glad you did.

Also, do you like walking? That would be a great exercise to try and do lots of before surgery, or swimming if you like it. You will need to do a lot of walking after surgery, as that will be your primary rehab for the first several months at least, so make sure now that you have some great-fitting walking shoes all ready to go. When you take your walks now, not only will it decrease your anxiety, but you can visualize yourself on the other side of surgery, walking tall with your new back.

Hang in there and keep the questions coming! We are here to walk with you.

titaniumed
10-10-2015, 10:14 AM
I just need to figure out how to get there with a reasonably sound mind.

This isnít an easy thing to do....I know I was bouncing off walls there for a long time with my decision.

If you can do your Yoga outdoors, I would recommend that for right now....

The walking thing is EXTREMELY important! Recovery includes pushing past pain, its something we need to learn how to do, and you might say its an acquired taste......

I want to wait till you at least read that book before I say anything.....Plan on re-reading a few chapters a few times.

Ed

green m&m
10-10-2015, 04:49 PM
Phew indeed Mom of 4!

In-network provider lowers chances of insurance issues which is a huge plus. Ive had those moments of panic - only to find out a doc group bills... (Which I guess could be a good way for a super indemand busy doc to 'hide')

If the office you see Dr. Lenke ends up being in the upper west side and you like desserts, HIGHLY recommend checking out Beard Papa's on 76th and Broadway. Fantastic fresh made daily cream puffs. I go out of my way to pick those up when Im visiting doctors uptown.

I love getting yummy treats and meals when I have to venture into NYC for doctors appts...

nybw51mr42
10-14-2015, 09:05 AM
Hey Mom of 4, did you happen to be there yesterday? :)

I went and saw Dr. Lenke yesterday to follow up from my first appointment in St. Louis. I felt very comfortable with him, and also was going to say he takes Blue Cross (what I have) but I see that you figured that out.

Keep us updated on what you decide, I'm in the same boat of trying to make these difficult decisions easier.

Also, Dr. Lenke said only through the back for me too, 3-4 hours, whereas other docs had said anywhere from 10 hours to 2 days.

Mom of 4
10-14-2015, 08:42 PM
I really LOVE this forum and all of the kind, encouraging people on it!!!

@green m&m, my husband and I are getting in town the night before my appointment. We are going to do dinner and hopefully check out Beard Papas. Sounds yummy!

@nybw51mr42, unfortunately, no, I wasn't there yesterday. It would have been so nice to meet you and compare notes! My appointment is November 4.

@titaniumed, my book finally arrived! I read it and I'm not sure why, but I feel more at ease. Questions were answered. I took notes and highlighted a bunch. I have a tendency to think "worst case scenario". The book seemed very matter of fact. Of course, my calm could also be due to the fact that I don't have a surgical date at the moment! :)

titaniumed
10-15-2015, 11:24 PM
Its hard to say if all of us think ďworst case scenarioĒ? I know I was prepared for some bad stuff, but it did work out ok.....

And in thinking about worst case scenario, one of the new kids at work showed me a huge anterior scar the size of mine today and I asked him what happened? He told me testicular cancer, and that really blew me away. It must have been a stage 2 or 3? and metastasized.(Up) Age 22.....He told me the docs told him its in remission. Sigh.....another survivor with a different twist.

The scoliosis book will help with some of the terminology, and understanding what the docs are saying......Maybe help with some of your questions for him when you do go in.

Iím wondering how Dr Lenke feels about the new stem cell impregnated hardware? .......Its one of the newer things in our world. (smiley face) I am into the hardware naturally, and asked what system was going to be used on me. It was truly his call, like I was going to debate scoliosis hardware systems with him....

Iím running Hooker headers and Monroe shocks. (smiley face) I think my shocks are a tad stiff.....

Ed

Mom of 4
10-16-2015, 07:48 PM
Ok Ed, I'm obviously going to need some more reading material! How and where did you learn about stem cell impregnated hardware? I'm in the dark...

titaniumed
10-16-2015, 11:01 PM
How and where did you learn about stem cell impregnated hardware?

Well.....I was probably reading material relating to Susanís situation.

Anyway, I will look for more material tomorrow for you since Iím exhausted tonight. It has nothing to do with scoliosis Iím sure. (smiley face)

Orthopedic Stem Cell use in the US is projected to rise....
http://www.prweb.com/releases/2015/05/prweb12712540.htm

Hardware selection and surgical procedure is up to your surgeon. Its not like you insist on Monroe shocks when they donít do Monroe....you have to rely on your surgeons expertise.

Ed

Mom of 4
10-20-2015, 08:35 AM
Hey nybw51mr42 I was wondering...
You said you felt comfortable with Dr. Lenke...your second visit I think. How much time did he spend with you? How long did you wait? Did you get additional X-rays taken? Do you know how far out he's scheduling surgery? I'm sorry for all the questions. I'm very excited to meet him and move forward with surgery, at least that's how I feel at the moment! Any info you could give would be most appreciated!

Ed, I read the link you shared about Orthopedic stem cell use...FASCINATING!!

nybw51mr42
10-21-2015, 07:03 PM
Hey nybw51mr42 I was wondering...
You said you felt comfortable with Dr. Lenke...your second visit I think. How much time did he spend with you? How long did you wait? Did you get additional X-rays taken? Do you know how far out he's scheduling surgery? I'm sorry for all the questions. I'm very excited to meet him and move forward with surgery, at least that's how I feel at the moment! Any info you could give would be most appreciated!

Ed, I read the link you shared about Orthopedic stem cell use...FASCINATING!!

No problem with the questions.

- He spent about 20-30 minutes with me, but would have gone longer if I had any more questions
- Mmmm maybe 20-30 minutes also? I wouldn't worry about these, because he has patients fly all over to see him so he takes his time with each person.
- Yes, additional xrays taken. Very quick though. He has some huge machine that does a full body xray in 5 seconds.
- He was scheduling surgeries out in January for when I saw him last week.

Any other questions just ask!

golfnut
10-21-2015, 07:21 PM
I never felt like Dr. Lenke rushed me, however, I always typed up all of my questions prior to the appointment to make the best use of my time with him and mainly so I didn't forget to ask him something. I had several appointments that were a longer wait than I would have tolerated for most doctors, but I always felt he was more than worth the wait!

Mom of 4
11-18-2015, 05:07 PM
I've stayed away from the forum for a bit, probably because I was trying to keep my head in the sand as long as possible...

On 11/4, I had my appointment with Dr. Lenke, along with his fellow and NUMEROUS med students! He agreed with my first doctor on the need for surgery and length of fusion. (Many years ago, my original surgeon was a fellow of Dr. Lenke's and he remembered him well!) Dr. Lenke can do everything necessary in a one-day posterior surgery as opposed to the two-day procedure originally planned. Great news! Can I just say how relieved I am that I cancelled the original surgeries!!!

Unfortunately, I also found out that I'm going to need neck surgery down the road. I can't say I'm surprised, but I'm not worried about it at this point.

I felt very comfortable with Dr. Lenke. He was very serious/professional, but also very kind. When I asked him how to best prepare for surgery, he told me to make it a point to exercise...to do whatever I could tolerate. I've been doing yoga regularly and I try to walk or ride a bike when I'm able. When I asked my last doctor, he said "don't start smoking". I didn't find that very helpful.

While I'm thrilled that I get to spend the holidays with my kids, anxiety/fear is returning. My husband and I will be heading back to NYC in a couple of weeks for pre-op testing and an appointment to discuss the surgery in more detail. I was looking forward to shopping and seeing the sights until I realized the first day would be spent at the hospital getting a total spine MRI and thoracic & lumbar CT. The next day will include flexibility X-rays, lab work, an EKG followed by the meeting with Dr. Lenke.

Dr. Lenke told me this surgery isn't for sissies. I don't know how you all got through it. I think I'm a sissy...

golfnut
11-18-2015, 06:22 PM
Nancy,
That's good news that you won't have to wait too long to have the surgery. I made myself about half crazy since I scheduled the surgery with Dr. Lenke a year in advance. I wasn't in a lot of pain, however, the stress of worrying about it was awful. I don't know if Dr. Lenke has changed his web page, but I found it helpful to read the testimonials of other patients of his. I also looked at their before and after pictures. While being scared to death, I also was a little bit excited about the possibility of having a straight back to not constantly worry about the curve progressing. I have been extremely happy with my outcome, but I know there are many on the forum that don't feel the same. I refused to go to the revision section of the forum until a year or more after my surgery. Best of luck! When I asked on the forum if I should get a second opinion after seeing Dr. Lenke, Linda, the moderator, assured me that I had one of the best surgeons and didn't recommend it.

JenniferG
11-20-2015, 03:49 AM
Mom of 4.

Please believe me when I say, we're all scared. Some of us less than others, but we're all scared. I thought I was the biggest sook ever. I'd never had surgery in my life and, at nearly 58, I hoped I never would. But I was faced with T4 to sacrum surgery and initially, I was so scared, I cancelled, and took my time coming to terms with the idea, because deep down I knew I needed to do it. Eventually, 9 months from the day I saw my surgeon, I arrived at hospital fit, feeling strong and knowing I was going to get through this.

I was very, very lucky, in that, although I could barely stand for 30 seconds without bad pain, I could walk forever. So that's what I did. Every day, getting faster and faster, going further and further. I also kayaked, which didn't seem to bother my back. By surgery day I was jumping out of my skin and no longer scared. I just wanted to get it over and done with.

If you, or anybody else facing this surgery, can manage to exercise, as Dr. Lenke said, do it! It will make a huge difference. Not just physically, but mentally. My super-fit partner pushed me from day 1. I didn't believe him when he said it will help with my fears as well as make me feel wonderful. But it was absolutely true.

I know not everyone can exercise, but for those who can, it's the best advice I can give.

Mom of 4
11-29-2015, 04:05 PM
Karen, I can't imagine waiting a year for surgery. I am indeed grateful that I don't have to wait that long! Tomorrow, I have a Pulmonary Function Test and then next Monday, I'm headed back to see Dr. Lenke for more testing and my pre-op appointment. Time is passing quickly, especially with the holidays upon us!

Jennifer, exercise has definitely become a daily occurrence for me. I'm using it as a stress-reducer now. Yoga has always been a favorite of mine. My balance is improving and I'm getting stronger and more flexible, too. I guess I should enjoy the flexibility while I still have it, lol!!!!

Thanks for the encouragement. It means a lot!!!

mabeckoff
11-30-2015, 12:22 AM
Good luck

Just keep on asking questions

Melissa

Doreen1
11-30-2015, 07:13 PM
Mom of 4, is Lenke planning to use BMP in your surgery? If so, have you had a conversation with BCBS about it? I experienced a hot mess with BCBS at the last possible moment as the hospital was closing early for Thanksgiving in 2011 and my surgery was on a Monday morning. Here is a link to my old blog (new one is in the works) http://thebionicachronicles.blogspot.com/2011/11/plot-thickens.html

Best!

Mom of 4
12-04-2015, 07:43 PM
Thanks Melissa!

Doreen, yes Dr. Lenke is planning on using BMP and no I haven't had a conversation with BCBS about it. I guess I'll be calling them first thing Monday morning. Thanks for the heads up!!!

LindaRacine
12-04-2015, 11:32 PM
Hi...

I would recommend that you work through Dr. Lenke's office instead of going directly to BCBS. If you talk to one of the billers in Dr. Lenke's office, they should be able to tell you if there might be an issue with BMP.

--Linda

Mom of 4
12-09-2015, 02:48 PM
Thanks, Linda! I was at Dr. Lenke's office yesterday and everything looks good. I'm moving forward...

LindaRacine
12-09-2015, 10:08 PM
Good news. Good luck!

Mom of 4
12-28-2015, 10:00 AM
So, this morning I was awakened by a call from my doctor's office, one week exactly from when my central line was to be inserted. They changed my surgical date!!! I am a total mess!!! I knew it was a possibility, given who my surgeon is, however I didn't expect it to happen to me. The surgery is now scheduled for the following week. Although it doesn't seem like a big deal, everything has changed. Trying to juggle the schedules of four very involved children, not to mention my husband's and mine is nearly impossible. Delaying the surgery one week means I won't have anyone with me in New York, as the daughter that was going to be with me has to go back to college. I am so mad, I just can't stop crying and wondering if this is a sign to just cancel the whole thing.

golfnut
12-28-2015, 11:28 AM
That really stinks! I know how much planning I had to do before my surgery and can't even imagine with four kids all that you had to arrange. Did Dr. Lenke's office tell you the reason?

susancook
12-28-2015, 12:21 PM
So sorry that all of your planning went down the drain. Are you OK? Can you call a friend to come over and be with you now?

With 4 active kids, you are no doubt very organized. Calling Dr. Lenke's office and asking why probably will not help you feel any better. There are so many reasons why a cancellation happens, almost all of which will seem trivial to you and me. I would call and ask if there is ANY way that you could be rescheduled the week that you were supposed to have the surgery.
If not, is there a better week for you, you could throw that out. Unfortunately, for most major surgeons doing a MAJOR case like yours is probably scheduled for all day.

My thoughts probably did not help much, but good luck and I am sorry that you need to have this added stress.

Susan

Mom of 4
12-28-2015, 02:25 PM
Karen, Angie told me that a patient who is losing leg function was given my appointment. I'm typically not a selfish person, but I can't understand how 6 days will make a difference to them, especially when for me it means I will be alone in the hospital. Angie said they will text updates to my husband and Dr. Lenke will call him when the surgery is complete. Who will scrub my back the night before surgery? Who will hug me or hold my hand before I go under? The 11th is my only option unless I want to go further out, which would require me going through all the pre-op testing again. So, it's either go through it alone or wait several months and hope the same thing doesn't happen again. I'm not waiting. It's either now, alone or not at all.

Susan, your kind words mean a lot!!! Thank you so much!

LindaRacine
12-28-2015, 10:04 PM
If I have one complaint about surgeons, it's that they don't have a clue about how much impact a date change has. I get that things happen, but I honestly think a little planning could resolve most of these problems. So sorry that this happened.

Carol56
12-29-2015, 09:09 AM
I wish you all the best. I will write more when I find out if I am sucessful at getting this post out to you. I am new to the forum.

Mom of 4
12-29-2015, 06:29 PM
If I have one complaint about surgeons, it's that they don't have a clue about how much impact a date change has. I get that things happen, but I honestly think a little planning could resolve most of these problems. So sorry that this happened.

Thank you for your kind words, Linda!!

susancook
12-31-2015, 04:03 AM
Mom x 4: this SUCKS big time! Are you OK? What are you going to do? Wish that I could help you but I am on crutches and waiting for surgery.
Susan

PeggyS
12-31-2015, 05:33 AM
Mom of 4,

I'm am so sorry to hear about the turmoil of having your surgery date changed! It DOES take a lot of planning, esp. when you're not close to home AND when you have children at home! I can't offer advice, but I'm sending a hug & prayers.

Mom of 4
12-31-2015, 02:14 PM
Peggy, I really appreciate the hug and prayers! I need it.

Susan, you are too kind! I'll keep you in my prayers!!

I'm still in limbo regarding the surgery. I haven't made alternate plans for a hotel following the hospital or arrangements for my kids because I don't have any options. I just don't see how it's going to work. My children obviously come first. It would be a whole different story if they were grown, but they're not. Maybe I should just wait until then. I've lived with the pain this long, what's a little more time??

jackieg412
12-31-2015, 11:28 PM
Mom of four, it is a real shame what happened. You really need peace of mind facing this huge surgery. Things do pop up and you need your support staff. You need to feel good going forward because it is tough those first few days. Hopefully it will work out for you but waiting till the pieces fit may be a good option.peace of mind is a must.

Mom of 4
01-01-2016, 07:26 PM
I've decided to stop feeling sorry for myself (finally) and do everything I can to try and make this new date work! My daughter is going to miss the first week of her classes so that I won't have to go into surgery alone. I hate for her to do that, but have agreed to it. I didn't really have a choice. For those of you who have been through this, do you think once I'm discharged and in a hotel room (estimation one week), I can manage by myself? Dr. Lenke wants me to stay in NYC for a week post-surgery. It's either that or go home, which will probably be about a 5 hour drive. My husband may be able to come a day here or there, but there is no guarantee. It all depends if he can get "coverage" for our kids. I'd appreciate any thoughts!!

Pooka1
01-01-2016, 07:45 PM
Hi. I am sorry to hear this happened. I just had the idea that you make sure Dr. Lenke KNOWS that if that person who got your slot or someone else near that slot drops out of the line up for whatever reason, you want your slot back.

Good luck.

susancook
01-01-2016, 08:39 PM
I've decided to stop feeling sorry for myself (finally) and do everything I can to try and make this new date work! My daughter is going to miss the first week of her classes so that I won't have to go into surgery alone. I hate for her to do that, but have agreed to it. I didn't really have a choice. For those of you who have been through this, do you think once I'm discharged and in a hotel room (estimation one week), I can manage by myself? Dr. Lenke wants me to stay in NYC for a week post-surgery. It's either that or go home, which will probably be about a 5 hour drive. My husband may be able to come a day here or there, but there is no guarantee. It all depends if he can get "coverage" for our kids. I'd appreciate any thoughts!!

You have a right to feel sorry for yourself, but you do need to take action also. I sometimes have said to myself, "Pull up your big girl panties and deal with it!" That quote might be helpful for you.

I would suggest that you have someone with you for the week in the hotel. How will you get meals? Is the hotel near the hospital or part of the hospital so that you could call someone if you needed help? It would be helpful to have someone to help you with pain meds schedule, to bring you milk/snack with your meds. Will you have a walker to help you get up to the bathroom and walk some? Any cousins, girlfriends that could be with you? Is there anyone that you could hire from the hospital, like a nurses aide that could work nights, maybe a 12 hour shift?

Will your insurance cover your going to a skilled nursing facility? What does Dr. Lenke say?

Susan

leahdragonfly
01-02-2016, 10:59 AM
Hi mom,

I am so sorry to hear about all this last minute stress. It seems like many of us have some last-minute thing come up which is extremely stressful. My first revision surgery also got postponed by almost a week at the last minute, because my surgeon needed to accommodate an emergency case, similar to your situation. I was extremely upset as we also have two school age kids, and had to change hotel reservations for my husband. That said, we made it work but it was an unwelcome shake-up at the last minute, so I can empathize with you. In my case however it was for a broken rod revision, so I had no choice but to accept the new date.

Since you asked for advice, I would be extremely concerned for you to go to a hotel room alone after being discharged. The first 2-3 weeks are very difficult. I think it will be very difficult at best, and could be considered potentially unsafe to be alone in a hotel. Who can you call if you need help? You will be very weak, vulnerable, taking a lot of pain meds, sleeping much of the time, trying to deal with constipation, etc. You should not be showering alone for the first few showers. You at least want someone waiting in the bathroom to make sure you don't fall in the shower or need help. What will you do for food? Your stomach may not be up to regular hotel room service or even frozen meals. Who could go out to the store for you to get whatever food sounds appealing to you at that time, or needed medicines? It just makes me worry so much to have you be isolated in a hotel room far from home with no support. It's not the same as being home alone, where you can call people you know if necessary. Is there any way you can farm your children out to friend's houses for a week or so so that your husband can stay with you?

Would it be an option to go to inpatient rehab until you are ready to go home? Even if you hired a home-health aid to stay with you (if you could stand it, since you have no idea who you would get) would be preferable to being alone in a hotel.

Lenke's office should be able to advise about this difficult situation. You need to talk to his nurse, not just the phone reception staff, someone who is very familiar with the early post-op challenges. I don't mean to sound negative, but as someone your age who has gone through this surgery three times in 5 years, I am very concerned for you.

Mom of 4
01-02-2016, 02:52 PM
Gayle, thank you so much for your thoughts! You made a lot of good points. Fortunately or unfortunately, I know longer have a problem. I just got a call from Dr. Lenke's nurse. He broke his ankle and is now scheduling surgery 8 weeks out. Tentatively, I will have surgery March 9. In a way, I'm very relieved as I have lots of time to make plans. I just hope they don't get changed at the last minute like this time around. I'm NOT happy about having to go through all the pre-op stuff again. Oh well...

leahdragonfly
01-02-2016, 04:50 PM
Hi mom,

While I am of course sorry to hear about Dr Lenke's misfortune, I have to think you feel relieved now. I was really concerned about your situationÖNow, you will be able to plan it and go into this huge surgery with your family and support system organized and ready to focus on you.

Yes, I'm sure it's annoying to have to redo the pre-op stuff, but that is a minor inconvenience at this point.

Deep breaths as Ed would say, and good luck as things shape up for your new surgical date.

Take care,

jackieg412
01-02-2016, 06:00 PM
Sorry for the doctor but you absolutely should not go through this alone. As they say things happen for a reason. You can't go to a hotel alone, you would have been too weak to care for yourself. It would be dangerous.

kennedy
01-02-2016, 06:17 PM
im sorry for Dr Lenke i know how he feels i had 3 broken bones in my life. im sorry your surgery got postponed

Mom of 4
01-02-2016, 07:33 PM
Thanks Kennedy!

Jackie, I agree about things happening for a reason. I was trying really hard to make it all work. First thing Monday morning, I was planning on calling the insurance company to see if they would cover rehab. Dr. Lenke's nurse said I would have been evaluated in the hospital, but given my age, health, etc. she didn't think I would qualify. I think she was giving me way too much credit!!! I've realized now that going to the hotel would have been a really bad idea and glad it didn't come to that!

Gayle, you are absolutely correct, I am relieved. I was way more understanding when I got the call this time. I feel badly for Dr. Lenke, but at least I have another chance to get my ducks in a row (all 4 of them)!! And while I've been trying to do yoga, I'm hoping to step-up my physical fitness before my new surgical date. I feel really badly for his nurse Angie, too...what a logistical nightmare!!! She said she had lots of calls to make. I can only imagine!!!

susancook
01-03-2016, 01:05 AM
Mom, now you have more time to line up those ducks! And....the weather in NYC might actually be a little bit better than in January. I cannot imagine how stressful your last minute planning must have felt like or how scared you really thought being alone in a strange hotel felt. Now, you have more control over the situation and can set up your support system for your recovery. And....your daughter does not need to miss the first week of school.

Keep us posted on how you are doing. Strengthen those quads!

Sending a virtual hug,
Susan

golfnut
01-03-2016, 06:54 PM
I am sorry about Dr. Lenke's broken ankle, but quite relieved for you. You will have peace of mind going into the surgery that everything is organized for your children and for your post surgery care. I'm sorry you have to have the pre-op tests again, but still think the later date is a much better scenario for you.

Mom of 4
01-04-2016, 04:32 PM
Susan, I'm so thrilled my daughter doesn't have to miss the first week of the semester, but I must say that I'm a little worried I'll get bumped again in March.

Karen, I know Dr. Lenke was your surgeon. Did you ever have your date changed?

golfnut
01-04-2016, 05:28 PM
Nancy,
Yes, my surgery date was rescheduled. I had the date of my surgery scheduled 11 months in advance because that was about the wait time for surgery with Dr. Lenke. He was president of the SRS and had to be in Europe on my surgery date in Nov. I was rescheduled for January 5. There were several cancellation dates that became available but I didn't take them because they interfered with the holidays and my dad's 90th birthday party. I didn't get the impression that it was at all common for Dr. Lenke to change surgery dates.

Mom of 4
01-06-2016, 08:01 PM
Karen, did you have to redo all the pre-op testing?

golfnut
01-06-2016, 08:23 PM
Nancy,
Fortunately, I had not had any pre-op testing because I was notified of the change of surgery date several months before my original date.

Mom of 4
02-21-2016, 09:23 AM
Surgery is now only 2 weeks away! When it was cancelled back in January, I thought March would never get here. Well, it's almost here and so is the ANXIETY!

One of the things I need to do is get a new pair of sneakers for all the walking I'm going to be doing post-surgery! I was leaning toward the Women's Nike Free Flyknit 4.0 because they are so lightweight and not bulky, but I'm thinking maybe I'm going to need a little more cushion. Does anyone have any recommendations?

jackieg412
02-21-2016, 10:46 AM
Ones without shoe laces. It is very hard to tie shoes at first. You will need like a slip on.

titaniumed
02-21-2016, 02:20 PM
A slip on that is open in the back. The shoe has to go on easily from a standing position without reaching down for any reason.....

I used sneakers later on in my recovery. I would recommend getting a 24 inch show horn for later.

http://www.amazon.com/Ikea-Omsorg-24-inch-Shoehorn-Black/dp/B00D44TFDC

http://www.amazon.com/s/ref=nb_sb_ss_fb_0_13?url=search-alias%3Dfashion-womens-shoes&field-keywords=open+back+slippers&sprefix=open+back+sli%2Chpc%2C390

A sock installer is also needed, donít know if your insurance company will give you one....

http://www.amazon.com/Deluxe-Flexible-Sock-Stocking-Aid/dp/B005L4NTNK

Ed

LindaRacine
02-21-2016, 03:01 PM
A slip on that is open in the back. The shoe has to go on easily from a standing position without reaching down for any reason.....

I used sneakers later on in my recovery. I would recommend getting a 24 inch show horn for later.

http://www.amazon.com/Ikea-Omsorg-24-inch-Shoehorn-Black/dp/B00D44TFDC

http://www.amazon.com/s/ref=nb_sb_ss_fb_0_13?url=search-alias%3Dfashion-womens-shoes&field-keywords=open+back+slippers&sprefix=open+back+sli%2Chpc%2C390

A sock installer is also needed, donít know if your insurance company will give you one....

http://www.amazon.com/Deluxe-Flexible-Sock-Stocking-Aid/dp/B005L4NTNK

Ed

Ed...

I think most, if not all, of insurance companies no longer pay for most aids. Mine wouldn't even pay for a toilet seat riser. Some hospitals may pay for these things, but UCSF doesn't.

--Linda

titaniumed
02-21-2016, 06:53 PM
I had a walker, and the sock aid given to me at the hospital. I wanted out of the hospital so bad, and left so quickly that I forgot my wiper device. You know, for the old mud flaps.....(smiley face) Turned out I didnít need it anyway, so that wasnít a problem. I cant believe what is happening to our healthcare...My premiums are like carrying another mortgage these days. If it goes higher, it wont make any sense to keep working. Males age 55 and older are the most expensive group. Statistically, we donít do too great I guess.

I was such a zombie right before my surgeries that I didnít buy anything. I think the most important thing is to have support from loved ones or inner circle. They can get the things we need while recovering through the first 6-8 weeks.

Having the Ensure drinks in the fridge would be a good idea.....also ingredients for smoothies.

Ed

susancook
02-21-2016, 07:24 PM
Have an arsenel of constipation remedies available when you get home. Take something with each pain med.

Have on hand: I suggest colace, senna, miralax, ducolax (oral and suppositories w/ gloves and pub), and one bottle of mag citrate for the BIG backup.

You need to find out what combination works for you. I took 2 colace twice a day and one with each narcotic, miralax in juice, and senna once a day.

Keep your poo soft and regular.

Final thoughts on surgery...and I just returned from my 5th rodeo:
- bring a small notebook with you for relatives and you to write down everything that happens, what your surgeon says, questions for the surgeon, pain meds, BMs
- tell the nurses that you want pain meds scheduled, not just when you ask for them. Don't get behind on pain meds
- have a friend or relative stay with you, esp at night
- remember: something will go wrong

Have trust in your surgeon and let go.

Susan

Mom of 4
02-22-2016, 07:09 PM
You guys are so AWESOME!!! Thanks for the suggestions. Apparently, there are a few "aids" that I need to purchase. The links are especially helpful!

With the clock ticking, I've been spending more time perusing the forum. Today I read something that was a little disheartening. I thought that I'd be able to squat after surgery. I've been working on strengthening my quads since I knew I wouldn't be able to bend. Squatting is hard on the lower back?? I think I'm in for a rude awakening...

titaniumed
02-22-2016, 08:11 PM
Susan is right, especially about having a bottle of magnesium citrate oral solution around just in case. Its sold over the counter,in the laxative section, looks like a small soda bottle and comes in different flavors. Lemon, Cherry, Jack Daniels.....(smiley face)

I started squatting because itís the only way to empty a dishwasher. I did my recovery solo, and being the Oscar Madison of scoliosis recovery patients, it is possible to load a dishwasher by simply dropping the dishes. LOL

Squat with one hand on the kitchen counter keeping spine vertical. Pretend like you are balancing a plate on the top of your head. Up and down. You can practice these now before you go in...No bending at all.

Once again, trusting your surgeon and his team and letting go is important. I pretty much gave in the last day or so, sort of like a fish being reeled in. The last 10 feet they give in the fight. Many of us wait decades for this......and many of us donít have that choice. We know and accept that something can go wrong, and pray that if it does, that its something minimal.

Recovery clothing needs to be loose fitting.....especially the socks which are easier to deal with. The sock installer works pretty good, but for removal of socks, you will use your big toe. Grabbing clothes off the floor I did with my big toe also, bend at the knee, and grab from behind. I could never find my grabber, and wasnít looking for it. I HATE looking for stuff.

Long BBQ tongs work well for grabbers. If fact, they are a better option because after you recover, you wont need them anymore and you can still flip steaks with them.

Ed

golfnut
02-25-2016, 08:14 PM
I understand your pre-surgery anxiety! It was definitely worse for me than my post surgery time. I found tennis shoes that didn't need to be tied which I could put on easily using a long handled shoe horn. I had grabbers in several rooms of our house. I also attached a throw away razor to the end of a back scratcher to shave my legs. You will be glad that you worked on strengthening your thighs. I didn't squat at first, but eventually did a ton of squatting. Best of luck with your surgery. Be sure to post so we know how you're doing.

Mom of 4
02-26-2016, 05:00 PM
I understand your pre-surgery anxiety! It was definitely worse for me than my post surgery time. I found tennis shoes that didn't need to be tied which I could put on easily using a long handled shoe horn. I had grabbers in several rooms of our house. I also attached a throw away razor to the end of a back scratcher to shave my legs. You will be glad that you worked on strengthening your thighs. I didn't squat at first, but eventually did a ton of squatting. Best of luck with your surgery. Be sure to post so we know how you're doing.

Thanks, Karen! I'm going to have my daughter post for me, if I can't. I told my husband when he got home from work today that I'm seriously considering not having the surgery. He said, "YES you ARE". I read Fifa's journey today. Oh my...I'm scared!!!

What I'm most concerned about at the moment is when I leave the hospital, they are sending me with a two week script for pain pills. After that, I have to go through my PCP. While I love my PCP, I don't think he's necessarily qualified to manage the situation and I'm afraid of the pain.

golfnut
02-26-2016, 08:41 PM
That seems strange that Dr. Lenke wouldn't give you pain medication prescriptions that would last for several months. I called a few times asking for advice as to the best way to reduce the pain medications but never involved my primary care physician for refills.

jackieg412
02-26-2016, 09:10 PM
You can also go to pain management. They do a better job.

Mom of 4
02-27-2016, 11:16 AM
That seems strange that Dr. Lenke wouldn't give you pain medication prescriptions that would last for several months. I called a few times asking for advice as to the best way to reduce the pain medications but never involved my primary care physician for refills.

Angie, from Dr. Lenke's office said, "The reason having your PCP help with pain management is due to the fact that since you are out-of-state and the ability of us to get you scripts in time via mail before your medications runs out is why we say work with your PCP. Some PCPs have referred their patients to pain management postop. It was easier in the past to call in certain narcotics like Norco or Vicodin but with the new DEA regulations those medications cannot be called in at all. They actually need a handwritten script. Additionally due to the increasing number of prescription drug abuse we are limited in being only allowed to order two week supply of narcotics."

She said they can manage baclofen and gabapentin as they are non-narcotis.

golfnut
02-27-2016, 04:44 PM
That makes sense.

susancook
02-28-2016, 05:24 PM
Thanks, Karen! I'm going to have my daughter post for me, if I can't. I told my husband when he got home from work today that I'm seriously considering not having the surgery. He said, "YES you ARE". I read Fifa's journey today. Oh my...I'm scared!!!

What I'm most concerned about at the moment is when I leave the hospital, they are sending me with a two week script for pain pills. After that, I have to go through my PCP. While I love my PCP, I don't think he's necessarily qualified to manage the situation and I'm afraid of the pain.

If possible, get your prescriptions filled a day before you are discharged. Get them filled at the hospital pharmacy if possible. Nothing is worse than scrambling at the last minute to find a pharmacy to fill your pain pills. My local pharmacy does not have many pain meds on hand.

green m&m
02-28-2016, 09:15 PM
Mom of 4

Maybe have an appt with your PCP so he/she's aware of the pain med refill needs? I think they'd be more receptive if they are made aware...

Mom of 4
03-04-2016, 08:56 AM
Did anyone do anything before surgery to avoid the potential problems with constipation/impaction, etc?

susancook
03-04-2016, 02:22 PM
I ate lightly (mostly liquids like tomato soup) for 2 days before surgery and took a dulcolax and colace orally at night 3 days before surgery to decrease the chances of stool sitting in bowels. I suggest not using the dulcolax closer to surgery as you don't want diarrhea after surgery. Since you will have bowels moved during surgery, sluggish bowels are a real problem.

Post op, make sure that they are giving you stool softeners like colace in adequate amounts 2-3 times a day to keep any solid food soft. Write in your journal passing of gas and any bowel movements. I asked for a dulcolax suppository 3 days after surgery to help evacuate some harder stool that I could sense in my rectum.

Let me know if you want to talk on the phone.

Susan

Mom of 4
03-04-2016, 06:32 PM
I ate lightly (mostly liquids like tomato soup) for 2 days before surgery and took a dulcolax and colace orally at night 3 days before surgery to decrease the chances of stool sitting in bowels. I suggest not using the dulcolax closer to surgery as you don't want diarrhea after surgery. Since you will have bowels moved during surgery, sluggish bowels are a real problem.

Post op, make sure that they are giving you stool softeners like colace in adequate amounts 2-3 times a day to keep any solid food soft. Write in your journal passing of gas and any bowel movements. I asked for a dulcolax suppository 3 days after surgery to help evacuate some harder stool that I could sense in my rectum.

Let me know if you want to talk on the phone.

Susan

Great info, Susan. Thanks so much!!

Mom of 4
03-07-2016, 05:40 PM
My central line is in and I'm to report to the hospital tomorrow at 5:30. Today has been a very difficult and emotional day. I am terrified...

golfnut
03-07-2016, 08:55 PM
I will be thinking about you tomorrow. I am sure you will have a successful surgery and soon be able to start the recovery. Best of luck!

susancook
03-07-2016, 09:43 PM
Mom x 4: it is evening here on the West Coast, so mom, if you are still awake, like golfnut said: you will be absolutely fine. Sure, you will hurt a whole bunch and you will be constipated and the surgery will not go exactly smoothly. But....with time you will find that you feel so much better than you did preoperatively and that surgery wasn't really that scary after all.

But yes, surgery is scary before you actually experience it. I wish that I could come over to your home or hotel and work on progressive relaxation....or we could just share a bottle of good wine together.

I am sending you positive thoughts, healing prayers, a hug.

Susan

mabeckoff
03-07-2016, 10:26 PM
Wishing all good things for you

jackieg412
03-08-2016, 07:25 AM
Sending calm healing thoughts

susancook
03-09-2016, 11:28 AM
Hang in there. It will get better . a gentle hug
Susan

Mom of 4
03-15-2016, 10:16 AM
Hi all. This is Nancy's sister posting. She thanks you all for your well wishes. She was discharged from the hospital yesterday and is wondering about pain control. She is on 5 mg oxycodone, valium, baclofen, gabopentin, and Tylenol. We know that every surgeon and patient is different, but does anyone else have a similar experience? She obviously is still struggling with pain.

titaniumed
03-15-2016, 10:53 AM
HI Nancyís sister!

Being released is good news....very good news.

The first few weeks will be hard with every minute spent trying to get comfortable. She should be able to take a hot shower by now, these are very helpful. Turn up the hot water heater in the garage so you donít run out of hot water. She will also like to keep the house warm, we freeze quite a bit on our meds, even at 84 degrees.

I started on Oxycodone and felt that it wasnít cutting the mustard. I was switched to Percoset, which is oxy with Tylenol and that helped some.......

The most important thing right now is to keep her moving. Walking often, doing short walks throughout the day help keep blood flowing which transfers nutrients into healing zones. Eating is extremely important since we get run down and our bodies are in a sort of high gear healing mode. Its hard to eat on meds thatís why I mention this. The ensure drinks are not too bad....and good old water keeps the plumbing from backing up.

Keep notes on all medication intake, food, walks, BMís. This is important.

Congratulations and thanks for posting. Ask any questions you wish.

Ed

susancook
03-15-2016, 12:34 PM
Please say hi from Susan!
Ed's advice was wise. My suggestions: pain meds: give around the clock at max allowed, if inadequate call the doctor
Constipation prevention: take Colace three times a day, take Miralax with juice daily, insert suppository if no BM in 2 days, use oral Dulcolax if needed further.
Lots of sleep, short walks 2 times a day, when sleeping on side place pillow between legs, promise: it will get better!
Give a gentle hug.
Susan

cathydrew
03-15-2016, 03:45 PM
Hi all. This is Nancy's sister posting. She thanks you all for your well wishes. She was discharged from the hospital yesterday and is wondering about pain control. She is on 5 mg oxycodone, valium, baclofen, gabopentin, and Tylenol. We know that every surgeon and patient is different, but does anyone else have a similar experience? She obviously is still struggling with pain.

I was on all that PLUS OxyContin every 6 hours. She needs a long lasting pain control. She has my cell number please call or text me. I am near the city had my surgery almost a year ago, I spoke to Nancy last weekend. Ice and heat alternating helped me too.

Mojo's Mom
03-16-2016, 06:25 PM
My husband who doesn't even have scoliosis had just an L3-S1 fusion and was discharged with way more than that. Granted, he was narcotic tolerant already, having been on OxyContin or something similar for many years, but still, a much smaller surgery. At eight weeks postop he is still taking what he was discharged with: 20mg Oxycontin 3 X daily, Percocet 20mg 4x daily, plus Robaxin and Valium.

By the way, shouldn't pain have decreased a lot by 8 weeks?

Mom of 4
03-24-2016, 06:08 AM
Hi everyone!! Thank you all so much for the prayers, well-wishes and advice. It means the world to me!!!

I can't believe I'm on the other side! I have been doing quite well. I hate sitting, but laying down and walking are no problem at all!!! I used the walker in the hospital, but haven't since. I was advised to use it at night because I have a tendency to get dizzy...there's a hole in my bathroom door to prove it ;) The first night home, the walker was right next to the bed, but I didn't see it. I headed to the bathroom on my own...BIG MISTAKE. As I was washing my hands, my knees began to knock against the cabinet. Thankfully, my husband heard me yelling for help. I ended up passing out. Fortunately, he grabbed me under my arm pits before I fell to the floor. I have no recollection of how I got from the bathroom to the bed. All I remember was waking up on my knees at the edge of my bed side. I was really, really scared. My husband said I didn't fall, so I don't think I did any damage, thank GOD!!!

My husband bought a Garmin (Fit bit type thing) so that I can track my activity. I've been trying to walk a lot inside. Yesterday was the first day I actually got outside to walk. It was also the first day using my new Garmin. I took three reasonably sized walks. According to my Garmin it says I walked 2.74 miles for the day. If that's accurate, I'm pretty excited! I think the gorgeous Spring weather helped a lot, too!

Pain management was a challenge in the hospital. They tried, but never got it right :( Once out of the hospital, my sister, who was staying with me (hubby was with the 2 younger kids) set alarms so that I could receive all my meds on time. Boy, did that make a world of difference!!!

Today I have an appointment with my PCP. He's the one who will now manage my meds. I'm a little nervous about it. He's a wonderful doctor, but I don't think he has much experience with a surgery of this type. The pain management Doctor I called had a really long wait time to get an appointment so that's why I went with my PCP. Fingers crossed all goes well this morning!

jackieg412
03-24-2016, 07:25 AM
You sound like you are doing really well. Walking is key. It also helps to be outside. Keep up the good work. Sitting is hard. After years it is still hard for me to sit it's all going to get easier from here.

susancook
03-24-2016, 03:19 PM
Glad that you are doing well. Keep up the walking, I also suggest outside is best. Garmin is a great idea!
Pain meds are very individual, but make changes slowly. I used a lot of ice bags for pain relief. And....keep ahead of the constipation.
In recovery from surgery, it is difficult to remember the challenges and limitations that we had Preop. Those bad memories fade, but you can hopefully remember them and see that you are going forward....ever so slowly but forward.
Keep a journal of all that you do, meds you take, walking, naps, etc.
Sending healing thoughts your way.
Susan

titaniumed
03-24-2016, 11:02 PM
Congratulationís Nancy! You made it!

Now you will really understand why some of us will say ďHang in thereĒ. Remember that things always get better with time....

I also close many posts with ďDeep breathsĒ which is a good idea. The incentive spirometer has great value. Even if you simply stare at it as a reminder, go outside and breathe in deep and hard. As hard as you can, then exhale.....for the lungs and for the mind. Itís a great stress reducer.

My surgeon insisted on walking outdoors, and no treadmills. On meds, I guess its easy to make a mistake and get thrown down and there are all sorts of indoor air pollutants....

Walking should be done with mild goal setting in mind.....there is no race or distance requirement. It comes slow, and sometimes it hurts, so you turn around and go back home. I would walk to the next house, and turn around. A month later, it was the same thing for me with no distance improvement and if I pushed harder, it would set me back in pain. Eventually, you will get there.

It took me a year to walk a mile....so if you get stuck, you have to learn to smile. If someone asks what wrong, just say ďIím stuck here, there is nothing you can doĒ and smile. I had to do this a few times since the look of pain transfers across easily and itís hard to hide sometimes.....Use walking sticks or ski poles, they help quite a bit if the local dogs come around wanting to jump up on you.

Hang in there
Ed

mabeckoff
03-26-2016, 01:46 AM
Glad that you are on the other side
Take care of yourself now and Walk but don't over do it
Melissa

cathydrew
03-27-2016, 12:11 PM
I'm so glad to hear all this Nancy....minus the fall, I fell too once I think I told you. Scary!

Hooray on the walking too, that'll get you feeling better so fast, I definitely did NOT walk that much for the first month, but once I did I noticed a swift improvement.

Congratulations on getting it DONE!

Keep us posted.

💕

Mom of 4
03-30-2016, 06:09 AM
As I am beginning to wean down from my medication, I am experiencing a little more pain. I was wondering if heating pads are OK to use, especially over the incision site? I have already been using ice packs. Yesterday was 3 weeks. Does anyone know?

jackieg412
03-30-2016, 07:48 AM
I think it is ok but I will caution you to be very careful. There are areas of the skin that do not have feelings. I was able to burn myself severely enough to need medical attention due to infection. Your surgery is so new that it may not be worth the risk. Warm showers are ok. Keep walking it does get better.

golfnut
03-30-2016, 08:22 PM
Nancy,
I am glad you are doing so well. I also felt better walking than sitting. It eventually got better, however, I had tailbone pain for a long time. Keeping track of your steps is a good way to stay motivated. I also found a few ladies to walk with so that made it so much more fun.

Mom of 4
03-31-2016, 04:30 PM
Jackieg, I agree. Better safe than sorry!! I guess I'll just stick with hot showers.

Karen, thankfully I've had lots of people volunteer to walk with me. It definitely makes the steps go more quickly!!

cathydrew
04-01-2016, 08:16 PM
Jackieg, I agree. Better safe than sorry!! I guess I'll just stick with hot showers.

Karen, thankfully I've had lots of people volunteer to walk with me. It definitely makes the steps go more quickly!!

I started using heat about three weeks, on medium setting. It helped me a LOT I was still laying flat. Didn't sit for months. I use the heat and tilted the hospital bed up to watch Game of Thrones!

Mom of 4
04-04-2016, 10:39 AM
Can anyone tell me why I left the hospital looking 6 months pregnant??? I have a very small frame, but my stomach is protruding like I'm pregnant. I don't like it...

jackieg412
04-04-2016, 01:20 PM
Oh yes I remember that look. It was the same for me. Even when I was pregnant I was never very big( except with my twins). I think it is the curve the rods created. Since it wasn't there before surgery we are not used to the bigger stomach look. I think through time it gets better but. Some of the look is here to stay. There is only so far you can pull the stomach muscle in. But it does seem to get a little better.

Mom of 4
04-04-2016, 03:49 PM
Oh yes I remember that look. It was the same for me. Even when I was pregnant I was never very big( except with my twins). I think it is the curve the rods created. Since it wasn't there before surgery we are not used to the bigger stomach look. I think through time it gets better but. Some of the look is here to stay. There is only so far you can pull the stomach muscle in. But it does seem to get a little better.

Oh no...that's not the answer I was hoping for!!!

susancook
04-04-2016, 07:52 PM
Another, possibility which is not very inviting is the possibility of a ventral or incisional hernia. I had one after my first ALIF. When I first noticed it, I sent a note to my surgeon who said, "That happens often after an ALIF, just give it time and it will go away". I knew that it was a hernia because when I laid down on my back and took a deep breath and then pushed down without exhaling and my "pouch" blew up.
I had an ?xray done or ultrasound or something and it showed that I had a complete separation of the internal incision. So, I had surgery to repair the hernia.
And that's the way it was,
Susan

LindaRacine
04-04-2016, 08:49 PM
As others have mentioned, it can be prominence on increased lumbar lordosis or an incisional hernia, though both are relatively rare. The most common reason is a build up of fluid and/or a build up of waste. Hopefully it's one of the less permanent issues.

--Linda

leahdragonfly
04-04-2016, 11:00 PM
I had that horrible big-belly look post-op too. It takes awhile but it does improve over time. One thing you can do is lay on the bed and focus on sucking your belly button down towards your spine. This helps the abdominal muscles wake up and remember what to do.

Mom of 4
04-05-2016, 06:21 AM
Once again, thank you all for your kind responses! I really appreciate everyone who has shared their experiences. As for me, I guess time will tell...

susancook
04-05-2016, 12:45 PM
Momx4, much of what will eventually resolve post op takes patience. This advice comes from a person whose mantra is "Patience, my ass, I 'm going to kill something". While I believe that one needs to be vigilant about the advent of serious problems, most issues, pain, spasms, etc resolve by 1-2 years.

I usually say that it just takes time for everything to "settle out".

Wishing you patience and a smaller tummy,
Susan

green m&m
04-05-2016, 03:57 PM
I too had the abdominal swelling. My surgery was posterior only.

In addition to abdominal swelling I had abdominal muscle atrophy on the left side, which may or may not have been related to fusion, so that added to the pregnant/jelly belly look. I was actually lopsided because of the muscle atrophy. Atrophy is mostly resolved but still not fully caught up to my non-atrophied side.

The excess puffiness made it so I did not find any of my then existing underwear comfortable so I eventually found ones that I really liked. (Boybrief cut by Aerie, which I think is the undergarment division of Aeropastale. I don't shop there otherwise). Now it's all I want to wear. They are incredibly comfortable.

I didn't use heating pads over my incision but did sit on my shower stool, hot water running down my back multiple times a day. It's a good thing I don't have to pay for heating or water.

Mom of 4
04-12-2016, 04:44 PM
So...I'm 5 weeks out of surgery. I had a very productive day, probably the best one yet! My concern is...how do I know if I'm doing too much? I'm trying not to bend, lift or twist. Is squatting ok? I read somewhere that it wasn't ok because it puts too much stress on the lower back. Obviously, I don't want to hinder my progress after making it this far. I must admit that I am a little stubborn. I avoid the assistive devices as much as I can. The grabbers, unfortunately are an unavoidable necessity. Today I changed the sheets on my bed for the first time because no one was there to help me. My bed is fairly high (I need a step stool to climb in!) I squatted to tuck everything in and tried to use my quads to stand up, but then I felt guilty about doing it.

Any thoughts?

jackieg412
04-12-2016, 06:23 PM
I would avoid squatting this early. If you have to kneel down but no twisting getting up. You can really pull on that lower fusion. It is too early for you to pull on that.

leahdragonfly
04-12-2016, 08:36 PM
A call or note to your surgeon's office will give you the answer. You'd hate to follow advice, no matter how well-meaning, from someone other than your surgeon who is familiar with your back for something as important as this!

Glad to hear how well you're doing. Take it easy and keep up the good work!