Needing a crystal ball.

[knitter]

My first posted questions. One year ago scoliosis specialist said I need fusion-I forgot how much, but most of the spine. Said I might be able to hold out one more year. Now the pain is so debilitating that I can barely go to work-I'm an attorney and sit in the office most of the day. When I get home, take two hydrocodone and sit in the recliner with heat until bed. Left leg goes numb if I stand more than a couple of minutes or walk very far. Sometimes sleep, sometimes fight the pain all night. Its time for the surgery. My questions are, what is the expected time that I should plan to be off work. How do you prepare for this type of life interruption? Will I have to have someone stay with me 24/7? My insurance plan will pay 100% including travel, lodging, meals, etc for me and a companion to go to one of four "specialty centers". They are Gundersen Lutheran in La Crosse, WI; Martin Memorial Med Ctr, Stuart FL; North Carolina Specialty Hosp, Durham, NC; and Pine Creek Med Ctr, Dallas TX. Anyone know anything about these facilities. I live in rural, western Alaska, so my current doctor is in Anchorage, Dr. Eule. I guess my biggest concern is how long will I have to be away from my job and are any of these places competent to handle such a complicated procedure. It feels like I'm about to step into a black hole. I have a double curve ( an "S") and right shoulder twists forward. Sorry, can't remember the degrees. Any thoughts, suggestions or tips from the veterans? Thank you all.

[titaniumed]

Welcome Knitter!

I guess scoli’s are located just about everywhere! You will have some logistics and travelling ahead of you. I hope this isn’t by dogsled. (smiley face)

Age, procedure, general health, and surgeons experience all play a part in recovery....it sounds like you have waited a long time for this which is something I was also “guilty” of....

How do you prepare for this life interruption? Good question. That’s why we are here! Its something that we think about for long periods of time. I myself for 34 years. Not only do we have to worry about what will happen in our surgeries, but we also have to do the recovery part.....sometimes its an exercise in patience. Having a positive attitude is necessary. Knowledge is a bonus.

I had an anterior/posterior at age 49, and had a very tough recovery. Some have much easier recoveries, and generally do well after a few months. My recovery rates basically ran about 10% per month. I was 90% recovered at 1 yr post, 100% after 2 years. Fatigue happens, I think that’s guaranteed.

I live alone so I recovered alone. Had many people come over everyday to make sure I was ok, basically what I needed was someone to food shop and get things for me since I could not drive on meds.

I prepared and took more than the average time off work, many go back part time after 6 months. Some 3 months....which is soon.

Many fly to have their surgeries. Alaska to Florida seems like a long long flight.....I’m sure others will comment on this.
Ed

[scooter950]

Welcome

Hello Knitter,

I have had quite a time finding my surgeon- I went to four different scoli specialists before I found the surgeon that just felt "right" for me. I have not scheduled my scoli surgery yet, he fixed my cervical neck stenosis first, then we will tackle the spine. But bottom line: I trust my surgeon. That's a big factor.

Does your insurance allow you to have second opinions? Its great ( unbelievably great) that your insurance covers travel, too- because you will have to travel. Air travel is not fun. Nor is navigating a strange town, but you can do it. You've got to do it, to find your surgeon.

Why did you insurance select these four locations? I am surprised Dr Lenke is not listed- if I had to travel, I would choose Dr Lenke in St Louis.
Why? Just from reading everyone's posts on this forum, many of the people who had scoli surgery with Dr Lenke were satisfied with staff responsiveness and travel arrangements, plus (Of course) surgeon competence.

Well, first step is to schedule an appointment with one of the four approved spine surgeons, they will probably get scoli Xrays - bring a CD with your old films, for comparison. Call the radiology office that did your last Xrays and ask for copies on a CD ( most are digital now). If you've had a bone density, bring the results. My surgeon requested a bone density test and a full spine MRI as well. There are other pre-op tests (myelogram) done, depending upon the surgeon's preference. So your first appointment may entail staying in the lower 48 for at least one week - while all these tests get done. Speak to the office staff to have them anticipate which tests the surgeon may request, and the staff can schedule them either before or after you meet with the surgeon. I think once they realize the distance you are travelling, they will work to accomodate you. If not, well, that's one reason to move on to surgeon #2.

Save copies of all the surgeon's opinions, and organize your medical portfolio so that you can bring tests results with you, avoiding duplicate testing. Once you select your surgeon, then you start preparing for the post-op care.
I'm sure Linda Racine (moderator) will share the links to past posts- about planning for recovery, everything from how to pay bills to how to recharge your cell phone (place a surge protector on top of furniture, so you won't have to bend over!). Many of these hints are so helpful.

but tell us, how are you doing? were you expecting to be told that you needed surgery? Are you ready for this? I've been preparing myself for over 6 yrs and I still haven't set a date. But it is coming, and I am at peace. it seems like you've been living with the pain, trying to adjust your life and now your doctor wants you to have surgery. this forum is a godsend, i have learned so much from reading everyone's posts. I am glad you have joined us, and I hope past posts help you prepare for your big decision. God bless, Jamie in texas

[knitter]

Just what I needed

Thank you Ed and Jamie and all the rest of the folks who take the time to vocalize issues they have had and solutions they can offer. For the first time in this process, I'm feeling like other people know what I'm talking about.

The reason I have four choices to pick from is because we do not have many resources in Alaska and nearly none out here in the bush. So, the insurance carrier searches for "centers of excellence" who are highly rated and we are offered a package deal from the insurance carrier if we want to use one of these centers. Travel, per diem, accommodations and medical care are 100% covered for this and a few other more serious procedures. It is called "Bridge Health" and fortunately my husband's employer carries this extra policy along with their regular medical insurance. I actually had to change jobs because my former employer was the primary insurance carrier for our family and Bridge Health must be the primary to cover the dependent's procedure. (I'm the dependent) Anyway, the change in jobs is why I'm hesitant to get the surgery done too soon. My new employer (a hospital) might not appreciate me starting work here in December and in February announcing I will be taking off three to four months for this surgery. I'm just trying to take things very easy to help get through a few more months.

I'm so happy that others are willing to share their experiences. It helps me believe that I, too, can get through this procedure. I though my age might be an issue (58) but my bones are strong and due to the winter darkness here in Alaska, I've been taking extra vitamin D.

Do most people wear a brace for a while after surgery? Is there a particular type of chair that is better to sit in after surgery-during recovery time? Someone mentioned sleeping in a zero-gravity chair...what about a recliner? I do that now some nights.

What was the biggest surprise anyone had about the surgery or recovery?

You all have become my strength. Every message and post is appreciated.
Thank you,
Sharon (where we can almost see Russia from the house.)

[golfnut]

Welcome to the Foum, Sharon. I was 60 when I had surgery and did just fine. Fortunately, I was retired from teaching and didn't have the added stress of trying to get back to work. I really think the main key to this is having the best surgeon possible and beging in as good of physical condition as possible.

[JenniferG]

Thank you Ed and Jamie and all the rest of the folks who take the time to vocalize issues they have had and solutions they can offer. For the first time in this process, I'm feeling like other people know what I'm talking about.

The reason I have four choices to pick from is because we do not have many resources in Alaska and nearly none out here in the bush. So, the insurance carrier searches for "centers of excellence" who are highly rated and we are offered a package deal from the insurance carrier if we want to use one of these centers. Travel, per diem, accommodations and medical care are 100% covered for this and a few other more serious procedures. It is called "Bridge Health" and fortunately my husband's employer carries this extra policy along with their regular medical insurance. I actually had to change jobs because my former employer was the primary insurance carrier for our family and Bridge Health must be the primary to cover the dependent's procedure. (I'm the dependent) Anyway, the change in jobs is why I'm hesitant to get the surgery done too soon. My new employer (a hospital) might not appreciate me starting work here in December and in February announcing I will be taking off three to four months for this surgery. I'm just trying to take things very easy to help get through a few more months.

I'm so happy that others are willing to share their experiences. It helps me believe that I, too, can get through this procedure. I though my age might be an issue (58) but my bones are strong and due to the winter darkness here in Alaska, I've been taking extra vitamin D.

Do most people wear a brace for a while after surgery? Is there a particular type of chair that is better to sit in after surgery-during recovery time? Someone mentioned sleeping in a zero-gravity chair...what about a recliner? I do that now some nights.

What was the biggest surprise anyone had about the surgery or recovery?

You all have become my strength. Every message and post is appreciated.
Thank you,
Sharon (where we can almost see Russia from the house.)

Hi Sharon,

I was almost 58 when I had the surgery. I had an excellent outcome, and agree with Karen that having the best surgeon and being in good physical health was definitely in my favour. To answer your questions:

I did not wear a brace. This seems to vary quite a lot from one patient to another.
My most comfortable chair was a dining chair with a straight back and a hard seat. Sitting bolt upright was best for some time. Actually sitting was difficult for at least a month or so. Standing was easier.
My biggest surprise was finding myself tall, slim and straight overnight. I hadn't thought much about the cosmetic results, I just wanted to halt the progression and halt the pain. So that was the biggest and best surprise.

What an interesting part of the world you live!

Best of luck in your journey.

[titaniumed]

What was the biggest surprise anyone had about the surgery or recovery?

The biggest surprise that any of us could have would be a serious complication. I know this sounds grim, but its something that we have to be prepared for. Pseudarthosis or a non-union is when the bone doesn’t heal, or heal properly, and eventually the rods will break just like bending a paperclip back and forth. There are posts here that talk about this, when people have to go back in for surgery, a revision surgery to have it repaired. Bone grafting should be addressed, topics like allograft, autograft, BMP, bone bank, cements. Surgeons have cut back on using the pelvis as a donor site due to pain. I had no bone at all used in my surgeries.

Complications can happen. Many patients come through quite well after surgery, and some have different things happen. I lost my gall bladder a year after my surgeries....a rare scoliosis complication. I’m ok with it. There are things that surgeons have no control over, its amazing what we know, and what we don’t know about the body.

The hardware that is used essentially is an internal brace. The use of a post surgical brace is used for protection in case of a fall right after surgery. After surgery, it takes time to heal, and you don’t want any disruptions while healing. I only wore my brace when I left the house...

Do you know your Cobb angle’s? or have x-rays? Have you seen your surgeon in Anchorage? Do you know if you will have a posterior only, or need an anterior surgery?

Ed

[rohrer01]

Welcome Sharon,

It seems strange to me that these four locations would be picked as well. I can tell you that Gundersen Lutheran in La Crosse, WI does not have an adult scoliosis surgeon, so you can cross that one off of your list. They are trying to start a spine center there, but as of now, they only treat pediatric surgical cases of scoliosis. They are listed among the top 5% of hospitals in the nation, though. So for another problem, they would probably be great. I'm curious as to why you don't stick to your doctor in Alaska. He's an SRS doctor specializing in adult scoliosis and much closer. I hope you can find the relief/surgery you need and still keep your job.

Best wishes.

[walkingmom]

What was the biggest surprise anyone had about the surgery or recovery?

Thank you,
Sharon (where we can almost see Russia from the house.)

Hi Sharon,
I am now 9 mos. post op and I can easily address my biggest surprise about the recovery because I am living with it every day. Going into surgery, I knew a lot about it because my 19 yo son had the surgery three years ago at the st. Louis childrens hospital. What I wasn't prepared for was the recovery period, namely from 4 mos. post-op and on. I was not expecting just how long it is taking for my muscles to settle down even though I went into surgery in favorly good physical shape. I expend a lot of time and energy with pt exercises, walking, hot showers, etc, and I still can only work at max about three hours before the back spasms become too great. I am a very positive person and I am not giving up, but sometimes I just get so down and frustrated because I feel that I am only making tiny baby steps on my road to recovery. I am just surprised how mentally challenging the recovery is. I guess you can say that the recovery time requires a lot of patience from the patient!

It sounds like you are already taking steps to getting yourself prepared. It is a big undertaking and fortunately you have found this forum to provide support to you. I wish you all the best as you head into surgery and beyond.
Donna

[LindaRacine]

Hi...

Sharon had her surgeries at UCSF over the last two weeks, and seems to be doing very well. I visited with her briefly this morning, and she asked me to post an update with her before and after films. She plans to fly to San Diego later this week, and will stay with her daughter for at least the first 4-6 weeks of recovery.

SS_Post_Lat.jpg
SS_Pre_Lat.jpg
SS_Post_AP.jpg
SS_Pre_AP.jpg

Regards,
Linda

[titaniumed]

Woah...that’s a rack. Linda, tell her I said hi if you see her again.

Ed

[rohrer01]

Wow! Thanks for sharing, Sharon. That's quite the ordeal.
Linda, if you speak to her again, please tell her that we hope her recovery is going well and thank her for sharing.