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View Full Version : I've been reading the form since Sept. & learning so much.



shariro
12-08-2013, 07:31 AM
I was diagnosed with scoliois at about 13 yrs & worked with a physical therapist for about 2 wks. Growing up I learned how to stand to compensate for uneven shoulders & to dress to hide the beginning of a back hump. I was fortunate that I sewed many of my own clothes & was able to adjust patterns so clothes fit ok. I didn't think much about scoliosis since I had been told that once I was full grown it would not worsen. After the birth of my 1st child I felt the curve had gotten worse but was unable to locate xrays from adolescence. The dr I consulted at that time felt it was a result of me being tiny & having a very large baby & the extra weight. My 2nd pregnancy didn't seem to affect the curve. After menopause I felt the curve was worsening & went to an orthopedic surgeon. The xrays showed an 80 degree thoracic curve & a 48 lumbar. I was not experiencing any pain & was physically active & was told the risks of surgery were not worth undertaking it. I accepted it & went on.
I retired from education & we retired to FL from PA 3 yrs ago. Since moving I have become more aware of the scoliosis & have became increasingly self-conscious of my appearance. My sister who lives in Atlanta had seen advertisements for a Spinecor brace so decided to give it s try. After paying $4500 for the brace, the chiropractor mentioned as an aside that I would need to wear it 24 hrs/day & would probably eventually still need surgery!! Not what I was expecting. Only positive result was new x-rays that showed curve now at 90 & 64 which confirmed my thoughts that the scoliosis was worsening.
Followed this with an appt at Duke. The doctor there said he would not do the surgery since the pain was not that great & if I insisted on it he would recommended I see Dr Lenke. I had previously scheduled an appt at Emory so went there after Duke. That dr there said she would do a fusion to stabilize the curve but would not attempt any correction.
I then discovered this forum & researched & read everything I could. To make a long story short I finally obtained an appt with Dr. Lenke for 12/18. I am praying that he will do the surgery. My main concern is the most recent result from a Dexascan that showed my osteoporosis had worsened. My family dr has placed me on a regiment of Prolia & Forteo. I hate the thought of having to wait 2 yrs to complete this drug course before surgery would be done since I just turned 65.
I can't begin to express my appreciation for all of you who post on the forum!! You have truly been an inspiration & a wealth of information for me. A special thanks to "golfnut" who quickly responded to an email I sent her when one of her posts revealed Bradenton, FL(where I live & she was visiting-thinking she lived in the area). I often think I don't know what I would be doing without this forum - probably just resigning myself that I would have to live with scoliosis the rest of my life.
Shari

debbei
12-08-2013, 07:36 AM
Good luck with your appointment, you're seeing one of the best.

susancook
12-09-2013, 01:49 AM
Hi Shari! Welcome! Sounds like you are on the right track getting more information. If you are "only" 65, you have lots of living ahead of you! Let us know how your appointment goes with Dr. Lenke.

On one of my appointments, I went down to X-ray at the University Hospital and there was a crumbling older woman in obvious pain waiting her turn. In almost felt like she was there to show me what I would look like in 10 years if I did not have surgery. Unlike you, my scoliosis was due mainly to degeneration and I was in a lot of pain.

I am unsure what your doctor meant by doing a fusion, but no correction??? I assume with your osteoporosis that you have some degenerative disc changes. Unfortunately, as we age, there can be degenerative changes that can eventually be painful. It will be interesting to see what Dr. Lenke says.

Wishing you the best of luck,
Susan

jackieg412
12-09-2013, 05:07 PM
SHARI
Welcome to te forum. It is a great place to share and learn. It has helped me in many ways. WHen I was trying to make up my mind before surgery,trying to recover, through many problems along the way. Also I feel very happy to have friends that really understand how this works.
Write down your questions---go over them--make sure you understand a lot before even seeing the doctor. It helps when he is discussing what is needed for you.

titaniumed
12-10-2013, 01:20 AM
Shari,

I find it amazing that you have a 90 and a 64 with no pain.....My twin 70ís produced maximum pain levels.

Doreen had osteo issues before her surgeries, you might want to look her up.....I donít know if you have read her posts, if not, say so and one of us will link you up. Iím so tired right now....

Welcome to the forum

Ed

Doodles
12-10-2013, 10:16 PM
Shari--
Welcome to the forum. As you know you've come to the right place! Lots of very helpful and knowledgeable people here. I'm so glad you were able to get an appt. with Dr. Lenke. He's as good as they come. Good luck! Janet

shariro
01-07-2014, 07:13 PM
I finally had my appointment with Dr. Lenke before Christmas. He was as great as everyone on the forum indicated - in fact all the people we had contact with in his office were great. He will do the surgery and it's currently scheduled for 6/30/2014. Needless to say after all my debating and hesitating, I now hate the thought of waiting for 6 months! I am probably my own worst enemy for imagining worst case scenarios. I will continue to keep up with the forum and am compiling all your suggestions, etc. The knowledge I've already gained from all of you can't be measured. Thanks again.

WLB1
01-07-2014, 09:30 PM
Hi, Shari,

You are doing exactly what I did before I had my Surgery at Duke with Dr. Bagley. He said my case was an emergency due to quickly advancing neurological symptoms and did my surgery three weeks later. I so wish I'd had more time to organize my thoughts around surgery. There is a lot to do pre surg to get your home ready, and to get your body ready for surgery. I don't have osteoporosis, so that was in my favor. I have been going to a gym pretty regularly since I was in my thirties to lift weights, etc. I am told weight bearing exercise builds bone density. Walking is weight bearing. If you have not been exercising because of the scoli, see if your Doc can refer you to PT to get some muscles going. There is much more you can be doing as well. I wish I would have realized I'd have to go to a rehab place for a week of my hospital, I would have checked out some good ones close to home and arranged for a decent ambulance to take me there. Not doing so led to #2 & #3 nightmare experience of the ordeal. I could tell you the whole story, but I will save that for another time.

You are doing a great thing for yourself by reading the threads posted. The I Am Glad I had the Surgery is great, too. All the stories are inspiring. There is thread for those who are a year out from surgery that is good, too.

As for me, I am a six months out, and I am glad I had the surgery. I still have pain from surgery, but it is not as bad as I had before surgery!

Good Luck!

Wendy

Irina
01-07-2014, 10:37 PM
Hi Shari,

Congratulations on making the decision - this is the hardest part! I understand how you feel about waiting for 6 months - I also could not wait to have this surgery over and done with. But you'll get there. Keep busy, exercise if you can, and do NOT read scary stories. Just block it out. Now, only positive thoughts. You've made the decision and this takes a lot of courage. You'll get through it and will be stronger, healthier and will get a nice cosmetic benefit in addition to the whole package :-)

I am ten months out and very happy with my outcome. All the pre-surgical pain is gone - I can walk and stand for as long as I want. My back muscles get tight sometimes, but it's not bad. It's nothing comparing to pre-surgical pain caused by standing over 5 min or walking. I can do anything I need to do albeit a little differently. I am back to work and pull long hours sometimes - my back does not bother me at all. I just forget about it when I am deep into number crunching and don't even pay attention to occasional tightness. The hard part about going back to work was mental - I felt that I was slower and not as sharp as before the surgery, but I think that I am picking up my speed now.

Best of luck to you and ask all the questions you have. Try not to think about the surgery, but think PAST the surgery. Think off all the things you'd be able to do when it's over and how it will change your life for better.

susancook
01-08-2014, 03:08 AM
Shari- glad that you have made yo ur decision. You mentioned that you are worrying about the worst case scenario. We all go through that! I worried about dying, paralysis, continuing chronic pain, you name it, I thought that it was in my future. I read all of the "Sorry that I had surgery" thread many times. It made me nuts! Then I talked with Irina and she told me to have trust in my doctor. I even put dr. Hu's picture on the back of my phone over the word TRUST. Eventually, I decided that I would not die, so that one was off the table. Then, amazingly, 2 weeks or so before surgery, I somehow went into a state of calmness and decided to trust my doctor and let go. Ahhhhh......it felt really great! I went into surgery completely relaxed and trusting.

I hope that you find peace with your decision. You are in good health and have an awesome surgeon. You will be fine!

Susan

shariro
04-22-2014, 05:10 PM
About a month ago I received a call from Dr Lenke's office moving my scheduled surgery from 6/30 to 7/7. At that moment 7 days seemed like 7 years. I have been a "basket case" about the surgery since it was scheduled in Dec. & finally approached my dr about a prescription for something to calm me. I go to an integrative practice where drugs are pretty much a last resort. The dr suggested I try a few hypnosis sessions first. Never having been hypnotized I agreed to try it. It really did help the anxiety & I planned to begin this wk to let casual friends know & discuss it more openly.
This afternoon received a call about a cancellation on May 5. We will leave Sarasota 4/30 for the surgery!!! Though I have not accomplished everything on my "to do list before surgery" (I'm a little anal about preparation) I am truly thrilled it has been moved up. Have been running around scheduling flight, boarding dog, etc. this afternoon. I'm very fortunate children are grown & husband & I are both retired.
Again thanks to all of you on the forum. I honestly don't think a day has gone by since Dec that I have not checked the posts. All the information, support, etc from it are priceless. I really doubt if I would have gone ahead with the surgery without it.

golfnut
04-22-2014, 08:37 PM
Shari,
I am so happy for you that you got the call you've been waiting for. If you need anything at all, please call me. I live only 30 minutes from Barnes. You can finally get this surgery that you definitely need and move forward with the recovery mode instead of the extremely stressful pre-op mode. If you need me to post for you after the surgery, I would be happy to do so. Your husband can call me if he would like. We are all cheering for you! I'll give you a call this week.

mabeckoff
04-23-2014, 06:03 PM
Glad that things are working out for you

susancook
04-24-2014, 01:36 AM
It looks like thing are falling into line for you! We are never "fully ready" for surgery, but you have done what you need to do and the rest will get done by someone else...or who really cares?

Best of luck and stay positive! You will do it and will be suited at your strength!

Susan

shariro
04-30-2014, 06:31 AM
We are flying today to St. Louis. This past wk (received call about a cancellation availability 4/23) has been a whirlwind of activity. I have a stress test today 2 hrs before we leave. Talk about stress!! Hope my anxiety isn't reflected in the test results. Testing tomorrow, central line Fri & surgery Monday. I'll try to post before Monday.
Again I can't express how great this forum has been. At a "good luck" get together Monday someone commented about the depth of my knowledge regarding the procedure, post surgery, etc wondering how I knew so much information. Needless to say I credited the forum. Again a special thanks to "golfnut." What a great thing to be able to ask about the important things such as pedicure before surgery!!

golfnut
04-30-2014, 07:56 PM
Shari,
It's been a long, stressful wait, but it will soon be behind you and you can start the recovery process. You are in the best of hands with Dr. Lenke. We will all be sending positive thoughts your way on Monday. Be sure to have Jerry contact me so that I can post for you.

mabeckoff
04-30-2014, 08:54 PM
Good luck. Hope all goes well

susancook
04-30-2014, 11:00 PM
Shari: you are on competent hands. Unlike in school when you had to study and work hard before tests, on Monday, all you need is to show up buck naked with your insurance card.

Take some deep breaths and relax. In some ways, the most difficult parts are behind you, such as deciding to have surgery and setting a date. The process has it's own momentum now, so get on train and ride!

Sending healing thoughts your way,
Susan....one year out, only minor pains and problems, the best decision that I have ever made!

golfnut
05-01-2014, 08:40 PM
How did your tests go today?

mabeckoff
05-01-2014, 08:47 PM
Echoing Karen's thoughts..how did Today go?

Doodles
05-02-2014, 12:12 PM
Echoing Karen's thoughts..how did Today go?

Shari--This is wonderful you got a cancellation! Now you don't have all those anxious months to wait! You are going to the best place possible for your back. Very best wishes for Monday's surgery--many positive thoughts and prayers coming your way. Janet

shariro
05-04-2014, 10:14 AM
Thursday & Friday were quite hectic with testing, etc. We met with Dr. Lenke Thurs. aft. I was a little dismayed that both curves were 7 degrees greater than they had been in Dec. Could have been somewhat due to variables but it cemented my belief that I am doing the right thing. He did mention that he hoped he could complete the surgery in one day but due to me being very tiny there was a possibility that it may take 2 days. The chances of requiring 2 days is very low.
Late Friday aft as we were walking a few blocks from the hospital we received a call that the urine test showed a urinary tract infection & we needed to get back to hospital pharmacy before 5:30 to pick up prescription. It was 5:15 at that time. Made it back & started on antibiotics.
Spent yesterday doing the tourist sight seeing. We did the trolley tour, arch trip, visited Stadium Village. Went out for a nice dinner last night since I felt I would not have a great appetite today
I think I kept so busy the past couple of days it really didn't hit me until I woke up this morning. Have a feeling today is going to be teary-eyed. We're going to go to mall, etc. Anything to keep busy.
Again thanks to all for your thoughts & prayers. Karen (golfnut) will be in contact with my husband & be posting for me. Thanks Karen.
Susan, I love your posts - they often provide me with a chuckle. I wish I could meet all of you!! It's weird to feel as if I have friends I've never seen!
Thanks again. As I look at the time I think tomorrow at this time I will be halfway done.

golfnut
05-05-2014, 01:26 PM
Shari's husband, Jerry, has stayed in touch with me this morning with updates. Shari had to be at the hospital at 5:30 a.m. I believe the surgery started around 8:30. At 1:30, Jerry said that Dr. Lenke is about 1/2 through with the surgery. Hopefully, he is on target to complete it in one day. (Shari mentioned that it was a slight possibility that he would need an extra day) Dr. Lenke has reported to Jerry that Shari is doing fine. I'll post later this evening when I know more.

golfnut
05-05-2014, 07:57 PM
Jerry called about 7:00 after talking to Dr. Lenke. Shari made it through the surgery fine. Dr. Lenke was pleased and thought that he was able to achieve about a 70 per cent correction. Shari lost quite a bit of blood, but apparently not any unusual amount and it wasn't a concern.
Thanks, Jerry, for the updates today. I am so happy that Shari is doing well.

susancook
05-05-2014, 08:03 PM
To my Ex-twisted Sister,
I am returning from my 1 year visit with Dr. Hu at Stanford, so I have mostly been wrapped up in me and have not been on the forum regularly. How exciting that you have had your surgery and are on the mend finally! My advice: patience, take drugs, prevent constipation, just survive!
Sending good vibes your way.
Hugs to your family who are taking care of you,
Susan

Doodles
05-05-2014, 08:20 PM
Shari--
This sounds like very good news! This was like a flashback because your day, timing, tests, etc. were all the same as mine. Hope your results work as well for you. Good luck and many positive thoughts for a great recovery. Janet

titaniumed
05-05-2014, 09:23 PM
Karen

Thanks for posting this very good news!.....Glad to hear it was a single procedure....

Ed

babyboomer16
05-05-2014, 11:21 PM
Shari, I just got on the forum and am catching up, I see where you just had a big surgery. I want to send you healing thoughts and know each day is better. You had and have a great surgeon. He's my surgeon. I'll be out one yr. The 31 st of May.(T/4 to pelvic) it was tough that first few days. But you are going to feel better all the way around as time goes by.. That's my prayer for you. It's one day at a time now.i Warmly, Linda

golfnut
05-08-2014, 02:31 PM
I was playing golf when I noticed a voice message and couldn't believe that it was from Shari! Shari's husband, Jerry, was so kind giving me updates on Monday and Tuesday, so that I could post on the forum. Shari sounded absolutely amazing and very upbeat, especially after going through this major surgery on Monday. Her surgery lasted 12 hours and she lost 14 units of blood. The PT had her standing yesterday and sitting in a chair. She went for her first walk in the hallway today. She thought she would probably get to move to the attached Parkway Hotel on Monday.

I know she is pleased with the correction that Dr. Lenke was able to achieve. I saw Shari in Florida before her surgery and can't wait to see her new posture with a beautiful straight back!

susancook
05-08-2014, 03:37 PM
Shari, so glad that you are up and moving. If you get discouraged, call one of us! Congratulations and you are on your way to the rest of your life! Hugs....ever so gently, Susan

golfnut
05-13-2014, 07:33 PM
I have been talking to Shari and her husband, Jerry, almost everyday. Her surgery was on Monday, May 5th. The original plan was that she would be transferred to the Parkway Hotel, which adjoins Barnes-Jewish Hospital, on Monday, May 12th . Her platelets are too low, so she is hooked back up to an IV to get the count up where it should be and is still in the hospital. Shari thought that she might be in the hospital another week. Hopefully,they will be able to fly home to Sarasota, FL soon after being released from the hospital. Shari isn't complaining much about pain, but is getting pretty bored. I'm sure she would appreciate positive thoughts and prayers sent her way.

Doodles
05-14-2014, 07:14 PM
Shari--
Glad the pain isn't too bad for you. I'm sure it's a bummer to have to stay longer but you're in the right place. Better to get all that taken care of before you even think about going home and then having problems. Take care and keep getting stronger. Janet

golfnut
05-16-2014, 03:56 PM
Shari's platelet count has been improving, so she was released from the hospital. She has certainly been through a lot. She will get a recheck on Monday and fly home to Sarasota on Tuesday. Shari is the ONLY person that I have met before and after the surgery. She looked so amazing when I visited her today. I just couldn't believe the difference in her posture and height. I will let Shari do her own posting from now on whenever she feels like it.

PeggyS
05-20-2014, 03:46 PM
Shari: sending prayers for healing!

shariro
05-25-2014, 01:07 PM
This is being posted for Shari by her husband, Jerry. First and foremost Shari wants to apologize for not posting sooner. She feels it is very important
to be back posting because the forum has meant so much to her during this total process and she fully intended to be back on line much sooner than this.
As some of you may know, while the surgery itself went extremely well Shari developed an allergic reaction to the Heparin that was used to flush the central line
placed days before the surgery. The reaction, commonly known as HITS, caused a reduction in blood platelets from 200,000 or so to a low for Shari around
16,000. The situation was discovered the day after surgery and with testing and monitoring was being treated within days. The reaction causes a thinning of the
blood but an ironic danger of clotting.

So, in addition to the normal pain management medication Shari in injecting herself daily with Arixtra until transitioning to Coumadin for an additional
three months. The injections should terminate soon as she has met exceeded the baseline count of 100,000 at 159,000 the day before we left St Louis last week.
She will meet with her local doctors this coming week and they will monitor blood and control the transition process. The bottom line is that Shari is sorry that
she is not feeling ready to resume the forum updates quite yet.

A brief post surgery synopsis: Shari was released from the hospital, a couple of days later than anticipated, on Friday May 16, 20214. We stayed at the Parkway Hotel until Tuesday May 20. One final blood test cited above was conducted on Monday, May 19. The "extra" hospital days are great, so don't push to get out.
The Doctors, Nurses and all the staff at BJH were outstanding. Very professional and with such positive attitudes and pleasant smiles it always felt that Shari was
in good hands. I would also note that the staff of the Parkway was very supportive and went out of their way to assist in any way possible. We left the hotel around 1:30 pm and walked in our door in Sarasota around 9:30 pm. We tried to keep the trip as short as possible but with no direct flight we made the best of it.
We were very fortunate that our connecting gate in Atlanta was only two gates away from arrival gates so at least we did not have to use the tram system.
Everyone that helped get us home went out of their way to assist us. The cab driver was so concerned about keeping the trip smooth, the wheel chair attendants
all along the trip were so careful and efficient, the flight attendants and even the pilots went out of their way to help us.

Our friends and family in Florida and around the country, as well as "forum" friends have been very supportive with thoughts and prayers , words of encouragement and direct assistance of many kinds. Thank you all. A special thanks to "golfnut" for being Shari's unofficial guide throughout. I hope we can
assist someone else as you have helped us. "Paying it Forward" is a legacy we will offer to continue as it is needed.

I have rambled enough for now. Thanks to all for your support and Shari looks forward to getting back on line asap

Make It a Great Day................................Jerry Rogers (SHARIRO)

mabeckoff
05-25-2014, 04:23 PM
Glad that all has worked out . Tell her I am praying for her

PeggyS
05-25-2014, 07:37 PM
So glad you made it home! I was sorry to hear about your complications. The details of the trip are helpful to those of us who haven't had surgery, yet. I plan to have surgery in St Louis, but not with dr. Lenke. Dr. Buchowski wants me to stay in St. Louis for a full month after surgery. I need to question the necessity of that request. It's a long time to be away from home.

Hope you feel stronger each day! Thanks for having your husband give us an update!

golfnut
05-25-2014, 08:44 PM
Jerry,
Thanks so much for posting for Shari. I have been thinking about her since she was released from the hospital. I know the flight home had to be difficult. Please tell Shari that this is the toughest part of the journey to seeing the light at the end of the tunnel. She will get there and eventually be happy that she chose to have surgery. Each month is a tiny bit better than the month before, but it is a slow process for sure! Shari is fortunate to have such a supportive, caring husband. I am glad to have met both of you and look forward to seeing both of you in Sarasota in February. Shari will be 9 months post-op and will be feeling so much stronger than she does now. Give her a gentle hug from me.

Doodles
05-26-2014, 07:57 PM
Shari--Good to hear from your husband and nice of him to put in so much detail about your experience. Feel no worries about not posting. I don't think I did for a LONG time--or if I had they wouldn't have made any sense! Sorry there were some set-backs. With this surgery, complications seem to be to frequent and unavoidable. Sending positive thoughts and healing vibes to Florida. Janet