Since I seem to be on the subject of my recent medical sagas, here is my five-year ankle saga. I will tell you the punch line right at the beginning: “You gotta shop around,” as The Miracles tell us.
This piece began as a Yelp review for the surgeon who finally saved me, a year ago. I waited a year to make sure it was successful. But once I started writing the review, I ended up telling the whole story, as follows.
It all began with a weird intermittent pain in my right ankle. I had been a lifelong jogger – a couple of miles, three times a week, for years. I gave up jogging for awhile because I thought I was too heavy for it. But then I went back to it, because unlike most people I knew, my knees never bothered me. So I figured that, amazingly, I still seemed to be doing okay with it. Jogging always felt easy, like the one thing I could fit into my life. I could take a mere 30 minutes out of my busy day and do my run. I felt like it kept me strong, kept me alive, really.
Until the ankle pain. This just didn’t seem good. So I looked on Yelp and found a doctor near me, Dr. K, who had impeccable credentials and great reviews. Dr. K took x-rays and said, “I can’t see anything wrong with your ankle, but I can see that you have bone spurs on your big toe.” It was true that my right big toe had been getting stiffer and stiffer.
I should also mention that I’m someone who normally never sees doctors. All my life, I had either been very healthy, or ignored my health issues, and just didn’t trust doctors. So until an issue became unbearable, I didn’t go. As for this toe pain, I had assumed there was nothing that could be done. But it was getting worse and worse.
He recommended a cheilectomy – surgery to remove the bone spurs. I had never had surgery before, but this seemed to make sense. At least one issue would be solved. So I had the surgery, which was actually pretty horrendous – months of lying on the couch with my leg elevated – but eventually it did heal, and solved that problem.I went back to him about my ankle, which still hurt intermittently. It was usually okay, but I remember one day when I had parked across the street from Vons, and was walking to my car with two bags of groceries. The pain became so sharp that I almost fell down, and didn’t know how I was even going to make it to the other side of the street. I made it somehow. And usually the pain was much more mild. But something was definitely wrong.
I went back to Dr. K and got an MRI, but he still insisted he could not see a thing wrong. So I figured I would just have to live with this.
By this time I was retired. I had given up jogging, due to the ankle pain, and taken up rowing on Mission Bay and folk dancing. I seemed to be able to do both without my ankle hurting, and enjoyed them for a couple of years. I was careful when walking, and didn’t run.
Then we took a trip to Colorado. On the way back, we were late for our flight, and ended up running through the huge Denver airport. I felt okay while running, but my ankle was much worse afterward. I knew I had to try other doctors and make further attempts to get this solved.
So I went back to Yelp, and next tried Dr. W, another doc with great reviews. He took an x-ray, and said the problem was that I had thinning cartilage surrounding my right ankle. He recommended “ankle distraction surgery,” a procedure he taught to other doctors, in which the doctor operates and pulls the joint apart a tiny bit so the cartilage can expand and fill the space. You have to wear a huge “cage” around your entire leg for six months, with screws going through your skin to the bone, holding it all in place. Obviously it is extremely invasive. But I was so desperate that I was considering it. He also talked about amniotic fluid stem cell treatment as another option.
So I researched stem cell therapy, which seemed like a relatively non-invasive treatment method, and it was touted as a cure for a wide range of ills, especially joint issues. I found that amniotic fluid does not actually contain stem cells, but “stem cell factors,” so it really doesn’t help. So the fact that Dr. W had recommended it eroded my faith in him further.
I found a doctor in LA who seemed to have helped a ton of people, Dr. D. With stem cell therapy, at least this type, they harvest bone marrow from your hip, spin it so they separate out the stem cells, and inject these cells into your joint, all in one visit. So I had this procedure done, and he injected my stem cells into about a dozen places in my ankle. None of this was fun – lots of pokes – but it wasn’t that bad either.
Dr. D was unclear about how many of these treatments would be needed. While in his waiting room, I read a paper he had written about how x-rays and MRI’s were essentially useless – he didn’t bother with them at all. Stem cell therapy could cure anything! The first treatment didn’t help, and I went back for one more. They were about a thousand dollars a pop as well, out of pocket. Dr. D said I might need many treatments to be cured. It all started to seem suspicious and pointless, and I couldn’t believe it was doing my hip any good to be drilled into. (Not that I’m disputing that stem cell therapy helps many people – it just didn’t help me.)
Dr. D told me to wear a walking boot for a month after the stem cell treatments. So one day I was walking down the street in my boot, and a guy made a comment to me about it, and we started chatting. It turned out he’d had problems with his ankle too, but had a great doctor in San Diego who had cured him with stem cell therapy! I got his doctor’s name and made an appointment. This doctor told me that it was important to use umbilical cord stem cells. That as people age, their stem cells become less and less potent. I researched this and it was confirmed. So Dr. D’s treating me with my own aged stem cells was unlikely to have worked, even if my problem had been amenable to stem cell treatment otherwise. Ugh.
So I got another way more expensive umbilical stem cell treatment from this doctor, and again it didn’t help. He had not done any x-rays or MRI’s, just given me the treatment I asked for.
By this time I’d had to give up rowing and folk dancing, and was becoming increasingly hopeless about my situation.
At the same time I was trying to deal with my weight issues, and my son Jake insisted I needed to find a nutritionist and go! So I found someone in my neighborhood with great reviews, Francesca Orlando. She was very smart about a wide range of issues, and told me I had to see Dr. Damion Valletta about my ankle … he was the doctor for many sports teams, and the best. At this point the last thing I wanted was to see yet another doctor. But I finally forced myself to make an appointment with Dr. Valletta.
When I called for the appointment, I found out that Dr. Valletta shared an office with Dr. Paul Murphy, who had done surgery on my husband’s shoulder several years ago and saved him from endless terrible pain. Mike worships Dr. Murphy, and had kept telling me to make an appointment with him, and I’d kept saying, “but he’s not an ankle guy.” In retrospect, I should have listened to my husband, and at least called Dr. Murphy for a referral.
When I got to Dr. Valletta’s office, his assistant said, “He will want to see a full set of x-rays before he sees you,” and they took the x-rays. Honestly, no one had bothered with this prior to Dr. Valletta! Only a random x-ray here or there. Dr. Valletta seemed very smart, high-energy and personable. He immediately diagnosed me with a hole in my talus (ankle bone), and showed me the hole on the x-ray. He said he had no idea what could have caused it, but that was definitely the problem. He said this was an unusual condition, and without treatment, my ankle was likely to collapse. We discussed surgical treatment options over a couple of visits. He did not want to do the surgery himself, and told me the top ankle doctor in the country was Dr. Robert Anderson in Green Bay, Wisconsin, team doctor for the Green Bay Packers.
I had gotten to the point where I would have gone anywhere in the country, or even the world, to get this problem fixed. I tried to do a video or phone visit with Dr. Anderson, but his office said he would need to see me in person. So I arranged for Mike and me to take a trip to Wisconsin! We also took a mini-vacation in Milwaukee, which we loved.
Dr. Anderson confirmed Dr. Valletta’s diagnosis, and also that this hole, or cyst, was growing rather rapidly. He said what he would recommend was an arthroscopic surgery of filling the hole in my ankle with bone graft from my heel, and covering it with artificial cartilage. He said there was no need to him to do it, however … it would be easier for me closer to home. First he recommended Dr. K, whom he had worked with at times to do follow-up care on Chargers players he had operated on. But I nixed that idea. Then he recommended three doctors in the LA area whom he had known for many years.
So I researched the three doctors, and actually did reconsider Dr. K. Mike and I went to see him, and discussed the surgery I needed. He admitted that he had done this surgery maybe ten times, and that all had been failures, and two had resulted in the patient having to have ankle fusion, in which all the bones are fused and the ankle no longer even bends. His message was that this type of surgery was unlikely to be successful. But the message I took was that this guy didn’t know how to do it, and don’t go to him!
Of the LA doctors, one had bad reviews, so I crossed him off my list. I sent my information to a second one, but his office was impossible to deal with, after a number of tries, so I crossed him off too.
We went for a consult with the third, Dr. David Thordarson at Cedars Sinai, and from the beginning, loved him. He seemed knowledgeable, competent and kindly. He looked like the quintessential doctor … gray hair, clean-cut, handsome, older but not too old.
Dr. Thordarson said he had done about half a dozen of these surgeries, and they had all been successful. I was glad to hear that, but half a dozen?! That is so few, that to me, it puts it into the category of an experimental surgery, which was the last thing I wanted. However I really had no choice, so I scheduled the surgery.
However I had a feeling of dread about the upcoming surgery, and kept imagining terrible outcomes. This seemed like no state of mind to be in, going into surgery, so I cancelled it. I mean, I was able to walk … not very far, but at least I could putter around the house … and I didn’t want to get any surgery that would make things worse instead of better.
I felt the need for divine intervention, and had heard of “Power of Eight” intention groups. I decided to start one … maybe that would give me the confidence and support I needed … at least I would feel I was doing everything I possibly could. That is a whole story in itself, but I did start a “Power of Eight” group with some friends, which is still ongoing, and still an amazing source of personal and hopefully divine support in our lives.
Meanwhile, a friend of my sister’s, married to a physician, heard of my plight. She consulted her husband and he told her the only place for me to go was the Hospital for Special Surgeries in New York. I seriously considered this … researched all the doctors … made an appointment … planned a trip to New York that would include this. But ultimately, I decided that Dr. Thordarson seemed really good, and I couldn’t imagine who else would be better, so I cancelled it all.
So I got the surgery, which was amazing – just three little holes, through which the surgeon guided a tiny camera and instruments to accomplish what was needed. All seemed to go well, and I didn’t even have any pain afterwards … almost none! However I did get a fever, and was worried that it signaled an unseen, internal infection.
I tried to see a doctor, and found that of course it is useless to try to see your doctor when you are sick. Your only options are urgent care or the ER. I went to urgent care … was treated with antibiotics for a possible UTI … but the fever came back. So this time I went to the Scripps ER, and the doctor gave me a massive dose of a sulfur antibiotic in addition to what I was already on. This resulted in my breaking out in hives all over my body. It was truly miserable … I could not bathe due to my recent surgery, had itching hives all over, plus the fever. So I went back to the ER and this time was hospitalized. Over several days they gave me every test known to man – blood tests, MRIs and CT scans of every organ in my body – and determined there was nothing wrong.
So I finally came home to rest and heal. At some point, someone said it might be “post-surgery fever,” which apparently is a thing, and I think it was as simple as that.
Now it is a year later, and I’m very grateful for the surgery. I would say that my ankle is 90-95% better. I tried rowing again, and that seemed to aggravate it … same with yoga. So I can’t do everything, but I can walk with friends, which is all I really care about.
So I went through a total of seven doctors in this journey. I am grateful to all of them – good and not so good – not trying to demonize any of them, they’re all trying. And I’m proud of myself for all I went through … I am nothing if not dogged.
Read Full Post »