Scoliosis and Stenosis: a journey

Three weeks ago I had a seven hour surgery on my spine. Initially, it was supposed to be 3 to 4 hours. As the surgery began, it was clearer to my doctor that it was more complicated and would take a longer time. The long and the short of it are that I am very grateful to him, because when the surgery was over the following day, I could stand up and walk without the pain that I have been dealing with for the past year.


It’s very interesting in life when you’re presented with a health problem and you try to find a solution to the problem and you realize that you need to be independent in finding that solution. You can’t just expect to rely on the opinion of one doctor, particularly when it involves surgery on the spine. There are many different approaches that can be taken and many different options, but a successful outcome is your goal so it’s important to keep your eye on that


I’ve had back problems since I was about 14 years old. I went to have a chest x-ray at that time because that’s what our doctor did and I was told that I had a curve in my spine. Scoliosis was the diagnosis. The doctor recommended that my mother take me to a specialist in the big city and so we got dressed up and put our gloves on, and my mother drove with her very confident way into New York City along the W. Side Highway passing a little lighthouse, and zooming in to park. We had lunch at Horn & Hardart, my favorite, and then we showed up at the office of a Park Avenue doctor. I do remember everything seemed old and gray including the doctor. I don’t think he really even examined me, but he turned to my mother as if I wasn’t there and gave her a long list of all the problems I would face in my life.

Inability to have normal children

Extreme pain upon reaching adulthood

Eventual paralysis

Loss of feeling in the lower limbs

Dependency and need to use diapers

His recommendation was bracing immediately, and waiting for a very long and complicated surgery. This was 1963 so the surgeries for scoliosis were really barbaric. I had a girl in my class who wore a brace which held her chin firmly in an upright position, and made her look like the tin man in the Wizard of Oz.


On the way home, my mother was uncharacteristically quiet for the first 20 minutes. Then she turned to me and she said “ you look fine to me! I don’t think there’s any need to go back to that doctor. He’s very expensive. And I don’t agree with anything that he said.”

That was the last we spoke of my so-called deformity. And it was fine with me. I tend to forget about pain, but in this case, I really had none as a young person. I was able to ski and participate in sports and do all the things that my friends were doing. Because my scoliosis wasn’t evident it wasn’t an issue. My shoulders and hips were the same height and so I looked like a normal person


When I was in my 30s I had an accident while I was swimming in the ocean in Hawaii. My back was turned towards the waves, always a bad idea, and as it hit me, I was lifted up and twisted around and thrown in all sorts of different directions. When I got out of the ocean, I was almost unable to walk. I have never experienced pain like this before and my husband took me to the local hospital in Hawaii where I got pain medication and that’s about all. Over the next few years I tried every single pain management approach from exercise to orthopedic doctors consultations to Feldenkrais to Osteopathy until finally, I started to swim and that was what cured me. I swam every day for 45 minutes and I swam only backstroke and side stroke. It was incredibly boring but I knew it was helping me. As time moved on, and I became stronger from this. I went back to my old life of practicing yoga and participating in many different exercise classes, going skiing with my family, and doing all of the activities that I had so enjoyed before.

So here I was in my 70s having passed most of my life feeling pretty good .I consider myself a healthy person only to be hit by increasing pain in my lower back again because of the severe stenosis. I again began a journey to see various doctors and therapists, and find someone who could help me because I knew that my life was rapidly becoming so small. I couldn’t really walk very far, I couldn’t pick up much, and it seemed to me that I was way too preoccupied with how bad I was feeling.I had MRIs, mini exams, and was finally clearly diagnosed with three things: in addition to the severe stenosis, I also had severe scoliosis, but in addition to those things, I also was diagnosed with mast cell activation syndrome, and Ehler Damlos Syndrome. These things made me more complicated.


I think I began to realize that I probably had to start paying attention to the seriousness of the decline in my body. I had such bad pain in the morning. I literally could not stand up. It hurts so much that I spent the first half hour of the morning bent over and taking baby steps. I could barely sleep at night because the pain woke me up. This has never happened before. Sleep is the one thing I always have counted on to restore my psyche to a calm and relaxed place. Not being able to sleep looks like a nightmare. I tried all sorts of pain medication to different meditation techniques, anti-inflammatory drugs, you name it I tried it.


I had a number of healers on my team: physical therapists, Osteopathy, healers, etc. No one seem to be able to do much good. I started to talk to surgeons when my right leg started giving way while I was walking and I was unable to count on it. Out of the blue I would be walking along and fall down because of my right leg not functioning. This was terrifying and lead me to visit a few surgeons. Visiting surgeons is not fun in general because for the most part, they have no social skills and they’re not really interested in having a pleasant relationship with their patients. Yes, this is a broad generalization on my part but it’s been my experience throughout my life. I’m not sure why they are this way, but for the most part they are. It may be because what they face at times is life or death surgery.


I visited three in San Francisco alone, and all three told me that they did not know if doing stenosis surgery would help my right leg collapse. One who is quite experienced stated that he could do the stenosis surgery, and that might or might not relieve my pain, but he thought the pain was caused by the severe arthritis that I had in my low back. The second surgeon agreed with the first because he was younger and had seen the report from the very esteemed first surgeon. The third surgeon didn’t have much to say and blamed it all on my scoliosis. And then he stated that I was too old to have any surgery at all.


Finally, I went to speak with my friend who is the head of the Lahey clinic neurosurgery department outside of Boston. I had sent him my information prior to our meeting along with all the results of the tests and scans and blah blah blah. From the start, I felt comfortable with this man. He’s compassionate and kind, and an excellent listener. He sent out all of my reports to a group of neurosurgeons across the country to get an opinion, or consensus on what the best surgical approach was. He even contacted a doctor I had seen 20 years ago who now lives in Africa. All of these people have different opinions, but the majority with the exception of one said I definitely needed to have surgery. The icing on the cake apparently was the standing series of scoliosis, x-rays, showing movement and the nerve conduction test which did show damage on one side of my body.


At that point Dr. Ghogawala knew that I had to have surgery or I would be physically disabled. I had complete faith in him, because we had both done so much research. He had planned his approach carefully, and he listened to my fears. Because of my mast cell activation syndrome, he had the anesthesiologist come and speak with me in order to understand what would work and what wouldn’t. and the morning of the surgery I felt incredibly calm and I asked my friend what music he was going to play during the surgery and as soon as he said Coldplay and Taylor Swift, I knew everything would be OK.


After the surgery there was some pain but not overwhelming pain. I think that pain management is usually done pretty well these days. I had a problem because I was so out of it I couldn’t push the pain pump button and there’s such a nursing shortage in hospitals that they don’t show up when you push the button asking for them. But once I got over the early days and I could function better on my own things went better.


What did I learn about this experience? It’s really important when you’re facing any medical problem that you don’t sit like a child in your doctors office and do exactly what they tell you. If it’s something serious that you’re facing, it’s your responsibility to do all the research you can, and examine all of your options. doctors are certainly brilliant human beings, but they are not God. There’s always different approaches, different methods, different drugs, and it’s so important as a patient to be aware of this and realize that it’s your body and you should be mindful and aware of how to take care of it.


Yes, seven hours of surgery is hard to recover from. I’ll be recovering for another few months probably but what I’m grateful for is this life where I feel stronger and where I don’t have that kind of pain that I had before. I think it’s kind of amazing. I’m grateful for the support of my family and my friends to help me along this path of recovery, but I’m also really grateful for my own self. I realize during this whole thing that I am pretty darn brave, and also logical and good at not whining but if I feel frustrated I keep looking for an answer. That’s my advice.


























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3 responses to “Scoliosis and Stenosis: a journey”

  1. Cynthia Roby Avatar
    Cynthia Roby

    You are MORE than a little brave! I admire and love you!, Cindy

  2. Barbara Brandon Avatar
    Barbara Brandon

    Thank you for sharing your inspiring story. I’m thinking of you and wishing you a complete recovery. I’m in Hodgdon Island, Maine with my roommate from Columbia when I was 20 after I spent the summer with you and Christina. I’m sending you much light and love.

  3. The Transplant Avatar

    I enjoyed hearing the original MD’s prediction of your future with scoliosis . I was told I would die before middle age without the surgery (amongst other things)so that was quite the motivation. I did get the surgery as a teen. Glad you were healthy enough to withstand such a surgery at age 70.

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