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Mobee211
07-16-2008, 09:44 AM
I met with Dr. Rand of NEBH in Boston. My curves now measure 43T/34 L (for some reason I cannot update my siggy) with significant rotation. I am in pain constantly. I am going to graduate school and I am going to pay for Cobra for 18 months so that I can have the surgery. I cannot take the student health plan offered by the college as it does not cover any pre-existing conditions. Given that my curve is increasing at a rate of 3 degrees per year, I will need the surgery eventually. I will be in school for another 7 years (Masters/PhD program). Right now I have wonderful insurance..100% coverage for the surgery. If I wait a few years I will have crappy student health insurance...in which the max allowed is 150K per year and all surgical procedures carry a 20% copayment. If the surgery costs 200K, I have to pay 20K out of pocket - impossible! And, that is IF I can find a plan that offers coverage for pre-existing conditions.

So, unless I want to wait 7 more years, I have to have the surgery before February of 2010.

I'm really, really scared. I know that this is the right choice, as I am in pain constantly, it has affected my life, I can't excercise like I used to because of pain, I wake up in pain etc. I also have a prominent rib hump which has caused a lot of emotional anguish. I am in therapy and my body image is quite horrible. The rib hump also causes me significant physical pain. I am 28 and I just feel like I shouldn't have this much pain so young!

Any advice? Any reassurance? I am not worried about the surgery as much as the recovery. Would love to hear positive stories from others.

Qikdraw
07-16-2008, 11:42 AM
The rehabilitation these days is really quite good. You'll be up and around in no time. I would get it sooner, rather than later. Its getting worse and if you wait everything will just get pilled on more, body image, pain, etc...

I'm sure you've seen other people's before and after pictures, so take heart in that other people have gone through it and come out just great. Amazing in fact!

If you get the surgery you'll be fine, just follow what the doctors say, start the exercises when they say, and keep up on them.

Brad

Janet
07-16-2008, 12:03 PM
Your plate is really full what with the back pain and the grad school program - and on top of that you have to worry about insurance. All the insurance companies stink - their main purpose is to be profitable, not to pay out medical bills, especially large ones. It's really hard to plan for such a surgery without also worrying about insurance coverage, isn't it?

Given that you are in so much pain, and your body image is so distressing to you, I think that having the surgery soon will really free you up to handle the demands of a masters/doctoral program. You are young and likely your recovery will be faster and easier now - review the posts by the under-30 folks. And having a good body image is like a second chance at living a normal life - I too suffered great emotional distress from the progressing hump on my back, but now, at 6+ months out, I am delighted to show off my new shape wearing tight-fitting tops, even though I still have a small curve on the right side that no one except physical therapists have noticed. Having had the curves for almost 50 years, it has taken me a while to realize that I look normal now - but, OMG, it is wonderful!!! :D :D :D

We're here on the forum to help, so please don't hesitate. Please keep us posted.

txmarinemom
07-16-2008, 12:43 PM
I met with Dr. Rand of NEBH in Boston.

Mobee, I'm sure you'll hear from Sally (lovestoskate) if she hasn't already left on vacation ... Dr. Rand was her surgeon, and I believe she was VERY pleased with both him and Baptist.


Any advice? Any reassurance? I am not worried about the surgery as much as the recovery. Would love to hear positive stories from others.

Anyone who's had surgery can relate to your fears: You can read 1000 stories about recovery, but until it's YOUR recovery, you have no real point of reference.

I'm more than happy to tell you about my experience ...

A competent surgeon, a positive attitude and a healthy body are the most important things you can take with you into surgery/recovery. It sounds like you've already figured out #1 :).

My surgery was Feb 5th, 2008, and I was fused (posterior only) from T4-L1.

The evening of surgery, I was on the phone, calling people to give updates.

The day after surgery, I walked 75'. The next day, I walked 300' - and did a flight of stairs.

On the morning of Day 6, I came home to recover solo. I'd cooked ahead, and set up the house ... and found I was WAY over-prepared for how difficult it actually was.

Yes, I was sore ... but by Day 3 (I literally took a 2 day nap) I got up and started walking a little more each day. My pre-op goal was to walk the AIDS Walk Houston 2008 5K - and I easily finished it ... March 9th, 2008 ... at 33 days post-op.

I was released to drive at 3 weeks post-op. I'd gotten so used to walking everywhere - and pulling my little rolling cart for purchased items - I probably *didn't* drive until about 5 weeks post-op. I simply didn't need to, and the exercise was a huge help.

By 3 months, I was off almost all restrictions.

I'm now 5 months post-op, and AM off all restrictions kind of at my own discretion (i.e., my surgeon shares my view "if it hurts, don't do it").

A few days ago, I added short sprints (25-30 yard bursts - at full speed) to my walks. These have caused no soreness other than the places *normally* sore from sprinting (obliques, hip flexors, quads, glutes and calves).

I've practiced deep breathing (I still even use my inspirometer) since surgery, and highly recommend that as *another* great way to aid recovery. Even after 8 rounds of sprints the first night I wasn't winded at all.

My flexibility remained intact (a lot of that has to do with the fact I had a thoracic fusion - and was very limber before). I am again able to lay my chest on my knees, and can clasp my hands behind my back and lift them above my shoulders.

Everyone's experience is different, but mine has been very positive. I don't regret the surgery for a minute ... ALL my original pain is gone.

I'm sure others will chime in, but for me, recovery wasn't NEARLY as tough as I'd expected (perhaps that's why it seems so easy ... because I expected it to be horrible! ;-).

Best regards,
Pam

Mobee211
07-16-2008, 01:02 PM
Thank you ALL SO MUCH for sharing your stories. I agree...I want to get this done sooner rather than later. I will be in college for 7 years and I plan on marriage and babies in the near future. I'd rather have the surgery done and in the past by the time I start having babies. My plan is to have it next May (I am waiting on a list of tests the surgeon wants me to have before the surgery) and am in the process of making an appt to see him in December to go over everything and get a surgery date. I will be in Ohio but will fly back to Boston and stay with my father before and right after surgery. If I have the surgery at the end of May, and all goes well, I am hoping I can return to Ohio within 3 -4 weeks. Obviously I would not be 100% healed, but able to care for myself at that point.

I met Dr. Rand and he is terrific! I saw another surgeon at MGH who I liked, but he was not as thorough as Dr. Rand. I felt at ease with Dr. Rand and he is top in his field, so I chose to go with him.

Your recovery stories are amazing. I had bowel surgery in 2004 and was told it takes 6 months to recover. I never needed a visiting nurse...I changed my bandages myself etc. I was walking around the next day, and I am very good about settin goals for myself. EAch day at the hospital I would say "Today I am going to walk 3 times around the ward, and tomorrow I will walk 4 times around the ward etc." I was off all pain medications 2 weeks after surgery (found the hydromorphone made me drowsy and that advil did just fine." 3 weeks after the surgery I wanted to go back to work! My surgeon would not let me...made me rest for another month(probably a good thing) and I was back to work 2 months after the surgery. So I do tend to receover quickly...and I am in my 20s, which is in my favor.

Thanks for all the great information. I know there are situations where things go wrong but they are few and far between and I am positive I will do just fine.

Love to all,
Maura

txmarinemom
07-16-2008, 01:15 PM
Maura ...

With the previous recovery you described, I'm sure you'll do just fine: It certainly sounds like you have what it takes!

Best of luck to you :).

Regards,
Pam

ladare
07-18-2008, 09:56 AM
Hi Maura,

I am two weeks post op and already walking between 1.5 and 2.5 miles per day. I'm able to start laundry (using my grabber because I can not bend yet), then my family switches to dryer and to the folding table so I can fold and carry to rooms. I can do flights of stairs. I can prepare meals if someone pulls out the items I need that I can not reach yet. I can shower on my own and bend well enough to shave my legs to within about 5 inches of my ankles. I figure I'll be looking like a hobbit soon... :p Every two days or so I need some extra rest, but am EXTREMELY pleased with my recovery so far. Much less worse than I thought it was going to be. I was pretty fit going into surgery, don't smoke, not overweight (but not real trim either), eat very healthy, and had done four months of PT to strengthen my legs and abs. It all paid off. This and a good, positive attitude. Oh, I'm also down to a very low dose of pain meds so my mind is not all messed up anymore either.

I say, go for it as soon as you have all your ducks in a row. My countenance before my surgery date was scheduled was pretty down. I was so tired of the constant pain, and all the limitatiions due to the pain, and the constant fear that I might do something that would cause more (and possibly permanent) damage. It was just very dreary and depressing. As soon as my surgery was schedule, my countenance completely changed. I was excited to have the surgery done, and my attitude totally changed. My curve was not noticable in clothing. I had a low rib hump that no one could see, but I could sure feel everytime I leaned against anything. It's no way to live. The procedures are so good now, it's really changing people's lives. Before surgery we know things are getting worse every day. After surgery we know things are getting better every day. That's where you want to be! Let the journey begin!

Lisa

theizzard
07-18-2008, 10:13 AM
Hi,
I am in graduate school and in the middle of my first practicum followed by another practicum with a dissertation and internship after. I will have to take a year off to get the surgery or at least 2 semesters. If i was in the position to do it before I embarked on grad school i would have done it. unfortunately, i had a 3 level fusion before i started grad school and figured i was done and in good shape. well i was wrong. this year i took a semester off to get a hip replacement and as soon as i was in great shape from that my scoliosis went insane and I haven't had a day without pain since. I am 57 and I never thought that getting out of bed or even just laying down could be such an exhausting process. i need the surgery because i can't function. i wanted to wait till i was done with school pre internship but i can't. most days i want surgery on that day because it is too much work just trying to function. so if you can get surgery done before school starts, by all means do it. there's nothing worse than not being able to do anything because of pain and school is not the place for it. nobody wants to hear it. also i am sure that the level of pain, the depression and the pain meds are affecting my ability to learn and take things in. most days i feel like an idiot trying to fake it to get through.
good luck to you. what are you going to school for?
avis :D

Writer
07-19-2008, 04:59 PM
Surgery is not the only option, especially for pain. Try searching the forum for "Schroth" and you'll find several people here who have been through, or put their child through, a Schroth physiotherapy program for scoliosis. It usually solves the pain problem, and the great majority of Schroth patients manage to avoid surgery.

Such a program will teach you not only exercises but how to adjust your posture when you feel pain. A Schroth practitioner identified the source of my pain in the first session, and the fix was easy. For others it may be trickier, of course.

Cost is a very small fraction of surgery cost. And surgery is no guarantee against more pain in the near or distant future. The unfused spinal segments can continue to rotate abnormally, and may eventually lead to more surgery.

If you're in Massachusetts, the closest experienced non-surgical therapist to you is probably Christine Sharkey, who I believe has been through a Schroth training course in Germany:

http://www.yogaforscoliosis.com/teachers/christinesharkey.htm

rainbow2010
07-19-2008, 06:16 PM
The younger you are for surgery, the easier the recovery. Also, your frame of mind. If you decide that you are going to recover quickly, and learn to tolerate the some pain without medicine, it will be easier. My daughter looked forward to getting back to dance, and she was in less than 6 months.

As for exercising before and after surgery, try working out in a pool. It takes the stress off of your back. Also walking in water strengthens your back and is less painful than on land. Added benefit, 1/3 of a mile in the pool (at chest level for the water) is the same as 1 mile on land! I do to a pool where we have a treadmill, bicycle, and elliptical in the water. Makes workouts easier. :D

Mobee211
07-20-2008, 01:24 PM
Thanks everyone! I really appreciate all the feedback.

I looked into chiro, scroth, clear institute etc. However, there are no long term studies on these procedures. Nor does my insurance cover any of them. Scoliosis surgery may cost 200K but I will end up paying less than $50 when all is said and done. Clear Institute is about 10K per 2 week session...all out of pocket. So, no, these therapies are not cheaper for most people.

I want marriage and babies soon adn I want to get this OUT OF THE WAY asap. I am an intelligent person and I know the risks of surgery and have weighed all my options. The pain, deformity etc. are great enough that I feel surgery is my best option. I meet with the surgeon again on December 22nd to discuss surgery and set a date.

I will be studying Mass Communication. My plan is to have the surgery early next May (as soon as I am done with finals). Do you think I will be well enough to go back to school in August?

Thanks!
Maura

loves to skate
07-26-2008, 08:08 PM
Hi Maura,

I just got back from my vacation and had been wondering how you made out with your appointment with Dr. Rand. I am so glad you liked him. When I had my fusion in December, all of the nurses, x-ray techs and PTs raved about him. I am much older than you and I would say that if I wasn't retired, I probably would have been able to go back to work at 4 months part time and maybe 5 months full time. It is possible that you might be able to go back to school in August if you have the surgery in May since you are so young. Do you know how long your fusion might be? The bill for my surgery came to $64,000 just for a point of reference for you. Out of pocket for me was under $1000, but I have a medicare advantage PPO plan. I would definitely recommend a PPO plan over an HMO plan as you then have the option to go out of network. If you have any questions you would like to ask me about Dr. Rand or my surgery, feel free to PM me. Take care, Sally

loves to skate
07-28-2008, 06:02 PM
Hi Maura,

I forgot about the Dr. bill. No wonder, it just came today. It came to around $45,000, of which I only have to pay $1451.44. We have had car repairs higher than that. I know that cobra insurance is expensive, but well worth it in the case of this type of surgery. I have no doubt that you will make out just fine. Sally