PDA

View Full Version : Contemplation stage



bentRN
02-24-2016, 11:04 AM
I am 60 years old, soon to be 61. I only learned 3 years ago that I have severe scoliosis. That was the beginning of my back pain. I was told when I was 21 that I had scoliosis by my PCP, but only that it probably wouldn't give me any trouble.

I am now told that if I choose to have surgery, I have to do it before I turn 65. I have a double major with a thoracic curve of about 55 degrees and a lumbar curve of 75 degrees. If I have surgery, it would be two separate surgeries, fusing from T4 to S1.

I have read many postings on this forum, and swing from pro-surgery to con-surgery. Most recently, I read "Scared but scheduled for T4 to pelvis surgery Oct 2015." What I got from this is choose the best doctor, rely on your family, and be in the best shape you can. I live in the Cincinnati, Ohio area, and I am not finding any doctor listed anywhere specifically for adult scoliosis surgery. Additionally, I have bad knees, and have restricted my activities for many years because of this. I work and I rest. I can't do squats. I am a terrible swimmer, but have tried, unsuccessfully, over the last couple of years to improve. The crawl hurts my back, kicking hurts my knees. I can't walk for exercise because of back pain. My family consists of my husband, who is 14 years older than I, but in excellent health, and my 85 year old mother. I am my mother's only support. While she lives independently, I help her with shopping and give her emotional support. She has a caregiver once weekly to help with homemaking tasks and she gets meals on wheels.

I cannot travel to St. Louis to see Dr. Lenke. I had an unsuccessful right knee replacement last year. I am told that if I have the scoliosis surgery, I will not be able to return to work, so I would not qualify for a medical LOA. I would lose my health insurance, have to go to COBRA, then when that runs out, the (not-so) Affordable Health Care Act. I will have to apply for disability. I live in a bi-level house, with all living space on the 2nd floor.

I would like to have the surgery, and hope to be able to walk and enjoy life, but the obstacles are daunting. Any words of wisdom?

kennedy
02-24-2016, 11:37 AM
Welcome.
Dr lenke is no longer in St. Louis he now in New York.

bentRN
02-24-2016, 12:06 PM
Welcome.
Dr lenke is no longer in St. Louis he now in New York.

Thank you. That's ok, New York is out as well.

susancook
02-24-2016, 02:40 PM
Hello there BentRN! There are many other bent or previously bent nurses also on the forum. Welcome!

You have probably read my journey with scoliosis. We are similar in some ways, but my much smaller curve was due to degenerative changes and I had my first surgery at 65. I am not a medical doctor or a spine surgeon and my thoughts below are from my surgical experience and from reading or talking to other people about their surgery. So much of the ability to spring back from surgery is dependent on preop condition and then any problems that result from the surgery [there are no guarantees]. I would also add that another factor is stubbornness and determination to succeed postop are also factors in rehab after surgery!

"I am now told that if I choose to have surgery, I have to do it before I turn 65. I have a double major with a thoracic curve of about 55 degrees and a lumbar curve of 75 degrees. If I have surgery, it would be two separate surgeries, fusing from T4 to S1."

Who told you that you would need surgery before 65? There is no exact cutoff on age, the upper limit is set by the surgeon. Factors that do make us older women at risk are: Osteoporosis, type 2 diabetes, longevity concerns, greater risk for anesthesia, other degenerative changes with aging, decreased mobility due to aging/arthritis etc, The upper limit generally has to due with how much pain the women has and her ability to rehab after the surgery. In general, I would recommend that if you do want surgery as an option, sooner than latter would probably give you the best outcome.

I had 2 surgeries at my initial surgery: posterior in one surgery and anterior and lateral in the second one. Some surgeons will do the surgeries fairly close together, like days apart like mine, while others may want 1 week to 2 months between surgeries. In general, I would say that the months apart choice would be for someone who needs to build up nutritionally and physically between surgeries. Again, this is decided between patient and surgeon.

"I am a terrible swimmer, but have tried, unsuccessfully, over the last couple of years to improve. The crawl hurts my back, kicking hurts my knees."

While swimming is great....walking in the water is also great exercise. Walking, picking up your knees as high as you can walking, walking backwards and sideways, holding on to the side of the pool and kicking your legs.

Warm water pools are the best!

Sounds like you have a good immediate family support network. I assume that you have friends that could help you postop. Any sisters/brothers? Helpful neighbors? Religious organization friends [church, etc?]

Re: your elderly mom, hopefully someone could help her while you are in the hospital and immediately postop.

"I am told that if I have the scoliosis surgery, I will not be able to return to work, so I would not qualify for a medical LOA. I would lose my health insurance, have to go to COBRA, then when that runs out, the (not-so) Affordable Health Care Act. I will have to apply for disability. I live in a bi-level house, with all living space on the 2nd floor".

I am unsure why you cannot work after spine surgery if you were physically able to work before surgery. Of course, some of the work decision depends on what kind of nursing that you do as lots of lifting certainly would not be possible, but that would be determined on an individual basis on your specific job requirements. Younger women go back to work much sooner than older women in general, but so much depends on your pre-surgery physical abilities and the job requirements. From what I have read on the forum, most women take 4-6 months off before returning to work part time at first. Others will probably speak to their experiences better than I could. There are lost of forum postings on going back to work.

Your second story living situation would probably be a challenge, but again that is individual. My guess is that your knees would be a bigger limitation than your back surgery. I went to a 2 week rehab hospital after my first surgery. With the 2 week rehab, I was able to easily climb to a second story, but my knees are OK.

You did not mention whether you had tried physical therapy. I doubt that most surgeons would do surgery if you had not tried PT to alleviate your discomfort.

Re: Scoliosis surgeon suggestions near you, I would punt that to Linda. You have probably looked at the SRS listings for surgeons near you. I suggest that you have an experienced adult scoliosis deformity surgeon and strongly consider a second opinion.

"I would like to have the surgery, and hope to be able to walk and enjoy life, but the obstacles are daunting" I assume that you are currently walking since you are working as an RN. Right???

I wish you the best of luck and I hope that you are able to find increased mobility and quality of life in the future. I hope that some of my thoughts were helpful.

Susan

jackieg412
02-24-2016, 04:37 PM
I thought Cincinnati had a huge orthopaedic hospital. I'm not sure but any large hospital will be able to make a suggestion of a doctor for you. It is worth looking into. I agree with Susan. Steps are not a problem.walking is key. I stayed in a rehab for about 10 days and then came home alone. I did have help with going to appointments and grocery store.

LindaRacine
02-24-2016, 09:42 PM
Hi BentRN...

Unfortunately, Cincinnati has great peds spine surgeons, but is not well known for adult spine surgeons.

You might want check out Steve Glassman or John Dimar in Louisville.

It sounds like you're asking a lot of good questions, so I'm confident you'll make a good, informed decision. The fact that you have a knee problem can definitely be an issue. I've broken both patella in the past, so also have a problem with kneeling and squats. I will almost certainly need to use a grabber for the rest of my life, to pick things up off the floor. It's not the worst thing in the world, but can be awfully inconvenient when I'm away from home.

Good luck!

Regards,
Linda

mabeckoff
02-24-2016, 11:51 PM
Welcome and Good luck

bentRN
02-25-2016, 07:37 AM
jackieg412, susan, and linda: I really appreciate your comments! I guess I should have mentioned that I've been living on cortisone shots for the past 5 years. 1st, in my knees, which coincidentally helped my back, then in my back, which helped my knees! The cortisone era has come to an end, though, on the advice of my doctors.

I will try walking in the water, Susan, it's been a while since I've done that. And I do have a warm water pool available to me! At work, I walk in fits and starts, and that works fine for me. I do occasionally assist with patients rising from bed or chairs, toileting, and showers. I'm usually done in afterwards. I'm not able to leisure or exercise walk because the back pain is too bad. I've seen two spine surgeons in the area, and they are in agreement about me not returning to work. I haven't approached the issue of medical leave paperwork yet. I would be glad to return to work, but I'm not holding out hope.

Linda, I will look to Louisville as an option, although I don't know if even that distance is feasible for me. Having had total knee replacement last year, however, I do know what kind of support I have. My husband is it. If I can get my stepdaughter to bring my mother to visit me once or twice, that would be nice, but that won't happen if I go to Louisville.

I'm hearing mixed responses about the stairs. Would they be a problem, or won't they? Once I am in the house, I have no need to go up or down unless I need to leave the house. I have a treadmill, but it's downstairs.

All of your input is helping me think things through. I really appreciate it! I am reading, Back to Life right now, and will read Scoliosis Surgery by David Wolpert next. I will continue to research here and where ever I can find reputable material!

bentRN
02-25-2016, 07:40 AM
I thought Cincinnati had a huge orthopaedic hospital. I'm not sure but any large hospital will be able to make a suggestion of a doctor for you. It is worth looking into. I agree with Susan. Steps are not a problem.walking is key. I stayed in a rehab for about 10 days and then came home alone. I did have help with going to appointments and grocery store.

The fact that you went home alone is very encouraging! Thank you!

bentRN
02-25-2016, 07:41 AM
Welcome and Good luck

Thanks for the welcome and well-wishes!

jackieg412
02-25-2016, 03:24 PM
I know you mentioned that you have a treadmill. You will not be using that at first. It is too hard on you spine and you may have to relearn your balance. Stairs really aren't a problem.
When you walk, outside is best. Small walks at first and the gradually increasing the pace and distance. You will feel better and it helps with pain.
You may not even feel like visitors for awhile. Mostly you just want to sleep. It is very easy to fatigue with just small tasks, like eating or bathing.

leahdragonfly
02-25-2016, 09:13 PM
Hi, welcome to the forum. I am one of the other bent/formerly bent RN's here that Susan mentioned. I had my original T8-sacrum/pelvis fusion in 2010 at the age of 42, though I have unfortunately had two large revisions since then for broken rods. I want to encourage you to keep your options open about returning to work until after surgery. No one can accurately predict whether or not you will be able to return, and it would seem wise to keep your options open. You can fill out the medical leave paperwork for a 4-6 month leave, then reevaluate at the end of that period. My surgeon told me he didn't know for sure if I would be able to return to work. Susan is right that your level of determination has a lot to do with it! Please find the best surgeon you can, someone who does major adult scoliosis surgeries regularly, not just a regular spine surgeon, even if this means you can't see your mother for a week. Your outcome is dependent on your surgeon's skill.

Stairs were no problem for me.

Best of luck, and feel free to ask any questions here.

susancook
02-28-2016, 05:39 PM
Wolpert's book says that older persons should not have surgery. He is very out of date on his information.

Treadmill is out for quite a while. Outside in the fresh air is rejuvenating!

Get a consult from an adult spinal deformity surgeon who does lots of surgeries.

I believe that your chances of returning to work are good. The surgery will probably diminish your pain. You are working now in pain??? Be optimistic. Nobody knows for certain what the future holds for your ability to work.

Susan

PeggyS
02-29-2016, 12:45 PM
Hi!

Welcome to the forum. The people on here helped me a great deal. I searched & so did my husband's neurologist - all of Ohio, after my Columbus dr told me his skills were adequate! I saw a dr in Cincinnati who said if I were his mom, he'd send me to St. Louis.
Dr Buchowski is in St. Louis & he was trained by Dr. Lenke. He worked wonders on my back: T3 - S1. I was in the hospital 8 days & in rehab in St. Louis for 2 weeks. It's complicated & expensive to do this out of state. My friends & extended family couldn't visit. In fact, I was alone for over a week in rehab. We went for follow ups at 3 months, 6 months, 1 yr & I'll go again at the yearly anniversary. Fortunately, I didn't have a job I needed to return to & I realize that's a huge consideration.
I'd do it all over again, in a minute - I am pain-free!! My prayer was for decreased pain and I learned not to limit God.
Best wishes to you!

PS: I agree that your knees will be what might make it hard to do stairs. PT will work on that with you.

bentRN
03-04-2016, 01:03 PM
I’m sure you all know how difficult it is to get good information about spinal surgeons. I called to find out how many of “these type of surgeries, specifically scoliosis spinal fusions using both anterior and posterior approach,” the surgeon has done, and the response I got was “quite a few.” The surgeon I have been considering, who has been doing ortho spine surgery for 15 years, appears as follows on the office’s website:

SUMMARY OF CREDENTIALS

Special Interests: cervical-thoracic-and lumbar degenerative disc disorders, minimally invasive surgery, adult scoliosis deformity, and revision/corrective spine surgery
Fellowship: Kerlan-Jobe Orthopaedic Clinic- Director Robert G. Watkins MD, Los Angeles, CA
Residency: Cleveland Clinic Foundation – Orthopaedic Surgery
Medical School: Medical College of Ohio- Toledo
Board Certification: Board Certified, American Board of Orthopaedic Surgery, with recertification

A co-worker recommended this person below, who apparently has been doing spine surgeries since the 80’s (wouldn’t that make him around 60 or older? Is that a concern?). The co-worker used to work ortho as a nurse back in the 80’s and this surgeon (below) did a surgery for his aunt.

Special Interests: Spinal Disorders, Pediatric Orthopaedics
Fellowship: Spine and Pediatric Orthopaedic Surgery, University of Toronto, Hospital for Sick Children
Residency: University of Cincinnati Medical Center
Medical School: University of Arkansas
Board Certification: Board Certified, American Academy of Orthopaedic Surgeons

I spent very little time in Med-surg as a nurse, but I know that just because a nurse doesn’t like a doc, doesn’t mean he isn’t the best doc for the patient. I have asked the only two nurses I know who have worked in the medical field in this area. One said she didn’t really know of anyone. The other one recommended the guy directly above. I have only met the 1st one listed above once, and I liked him really well, but he seemed visibly rattled when explaining my x-rays. He was the 2nd surgeon I’d seen, the 1st said that surgery wouldn’t be a consideration until I had neurological symptoms (I think I mentioned this before) and sent me to pain management.

I can’t even imagine the logistics of going to Louisville. This is a 2-1/2 hour drive. How do you come home from a spine surgery from that distance when the recommendation is not to ride more than 15 minutes in a car? I know the ride home is probably an exception, but 2-1/2 hours? Is that doable?

I feel I am being tedious with all my questions, but I have so many! I really appreciate all the input I’m getting! It is very helpful in thinking this through. I have already moved past the fear that I will never work again to considering that I very well could work again! I am thinking that I could set up my mother’s pills for 4 -6 weeks and maybe after that I could do them again. I am trying to think of ways for her to get her groceries without me. So I am trying to work it all out!

green m&m
03-04-2016, 07:35 PM
My drive home post-op was close to two hours, through NYC, with some bad pot holey roads, lots of sudden stops and it was manageable - my nurse gave me diladid before leaving to help with the pain associated with the car travel.

Had pillows to cushion me also.

It wasn't easy but it's doable.

mabeckoff
03-04-2016, 08:12 PM
I have had multiple surgeries. Every ride home was 2 hours. Pillows and drugs are the answers.

jackieg412
03-04-2016, 08:17 PM
The car can be tough but you can always stop and walk around for awhile. I had to do that for awhile after my first surgery.
As far as your mom's care, there are food delivery services . In this area it is pea pod. Also meals on wheels and Seattle Sutton. So that can be worked out. Also there are home services for the elderly that can visit or give you information about obtaining help.
Returning to work is very possible. One of my surgeons has had spinal fusion. I am sure he has some long days on his feet.