My PA Rachel and I spent a good hour with Diana, who is now 70, but looks and acts more like someone in her 30’s or 40’s! Diana had adolescent idiopathic scoliosis, and had upper curve fixed with non-instrumentated fusion, and postop casting in 1957, before the Harrington rod instrumentation was done commonly. She spent a month in the hospital, and a whole year recovering with a postop cast, then back brace, and lots of time in bed.
She is incredibly healthy, and does everything possible to maximize her spine health: keeping her weight down, core strengthening, low impact aerobic exercise, and some physical therapy in the past. We saw her back in 2007, and she came back for follow-up with concerns that her lower curve was collapsing, and some new symptoms. This past week, she saw us back, and indeed her lower curve has progressed, and trunk shift has increased.
Here is email interchange with my PA Rachel responding to her email below. It does take courage to go and see a scoliosis expert regarding your curve, but we do try very hard at Hey Clinic to use it as a time to educate, track the curves and quality of life and other factors carefully, and just let you know what your options are moving forward. We also try to let you know what to look for as “warning signs”, or “red flags” that might indicate when/if more serious trouble may be brewing due to severe spinal stenosis, disc herniations and/or cauda equina symptoms which may make surgical intervention more necessary and immediate. From Diana’s email below, you can tell that she was glad to make the trip and learn more about her current state, changes over time, and options moving forward.
In general, remember that it is good to have your scoliosis checked every year through age 25, and every 3-5 years thereafter on X-Ray, even if you have had a previous fusion, since there can be degenerative curve collapse, and this X-Ray measurement data over time can help you to know if you are dealing with a progression. Carefully checking your height each year is also a good check — any height losses more than an inch is worrisome sign of potential significant curve progression.
Dr. Lloyd Hey, Hey Clinic for Scoliosis and Spine Surgery
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Diana,
I’m glad you had a good visit yesterday. We enjoy being able to take the time to educate patients and clearly convey all options. The blog is an excellent resource for real life stories too, for patients who were once in your shoes. We also have some patients who have said they would be happy to talk with anyone who is interested or considering he surgery. If you would like to pursue this, let me know and we can arrange this. Please let us know if we can help you with anything else. We look forward to hearing about your therapy and following you.
Thanks for the encouragement and I will pass this along to Dr. Hey as well.
Rachel
> On Aug 30, 2014, at 9:25 AM, “Diana> wrote:
>
> Rachel,
> It was a great pleasure to meet you yesterday, although we didn’t talk much. I appreciated your input into my reevaluation.
> Please let Dr.Hey know that although it’s very hard for me before the fact to think of talking to an orthopedic surgeon about my back, Dr. Hey makes it a very good experience when I actually have the appointment.
> I appreciate his sensitivity and understanding, and I am so grateful he took the time to listen to me, reassure me, and give me hope. I have been looking at his blog this morning, reading the stories and looking at the pictures and xrays. When it comes to the scoliosis I have, I usually swing from keeping my head buried in the sand to feeling doomed. I felt so much better about my future when I left your office yesterday. I’ll continue to do all the things which keep me healthy, but I am conforted to know that there is medical help for me if I need it.
> Thanks Rachel, and please thank Dr. Hey for me, and for my husband.
> Diana
> PS> ALL of the staff is wonderful!