To the average person, it’s the big toe. The little piggy that went to market. To the medical profession it is the Hallux or the “Great Toe.” After three years, Matt is not so sure it is all that great.
In 2011, we were at the beach doing what we always do, frolicking in the water and riding the surf on our boogie boards. At some point, Matt stopped. He was jumping around in pain yelling, “I jammed my toe in the sand!” Well, okay, he had stubbed his right toe or jammed it. Whatever it was, he had hurt his toe pretty good. He limped around for the rest of our stay.
We got home and went on with our lives but the pain in Matt’s toe never really stopped. Bending the toe was a real challenge. So we made an appointment with a podiatrist. He took an x-ray and did not see anything in particular. It was not broken. It was not obviously injured. His theory was that perhaps Matt had jammed it hard enough to have a bone bruise, which takes a long time to resolve. We’d have to wait. We went home no closer to resolving the problem.
He began having trouble wearing shoes because they pinched his toe. The inside of his toe, that spot where you slide in the toe grabber on a flip flop, was sensitive even to touch
He went to another podiatrist who had no real idea why his toe hurt. He thought he might have a bunion problem. He thought he might have tendinitis in his toe joint. He thought he might have turf toe. Whatever it was, he created a shoe insert that would prevent his toe from bending in an impactful way. We searched and found new shoes that gave him some toe room. These were not fashionable shoes, but your basic black, orthopedic person-with-foot-problem shoes. They were tennis shoes in style, but black and neutral enough that he could wear them to work and even with suits. He hated being unfashionable but he had no choice.
By this time he was on pain pills that kept the pain at bay but did not really stop it. The insert kind of helped but did not really make the pain go away either. When he walked he favored his right foot causing him to put more stress on his left. Then one day, his left ankle began to hurt. He was double limping. The podiatrist took an x-ray. He ordered an MRI. Matt had torn the peroneal tendon in his ankle. This tendon is a stabilizer, responsible for making sure your ankle doesn’t bow out or roll. This is often injured if you twist your ankle.
In March 2012, now almost a year to the date of his injury and a week before we moved to our new house, he had surgery to repair the tendon. He had to be on crutches for several weeks. He went to therapy, he wore an ankle brace, and did all the right things. But for some reason, the ankle continued to hurt. The doctor thought the pain would go away with time and he encouraged Matt to wait it out.
Now that his ankle was repaired, we went back to trying to fix his toe. The doctor really did not know why it hurt. He thought it was tendinitis but it was not clear what was causing it. He focused in on a small bone at the bottom of the toe called the sesamoid (not the same as the sesamoid on the bottom of big toe joint). He thought this tiny pea size bone might be rubbing on the tendon. He also thought that some of the pain was coming from a bone spur on the big toe knuckle itself. So he proposed to remove the sesamoid and shave off the bone spur and in October of 2012, Matt had another surgery. He was once again on crutches for a while, then special shoes, then finally, therapy.
After months of treatment and two surgeries, his left ankle was still hurting and the surgery on the right toe did nothing to relieve the pain.
When you walk, the bottom of your foot sort of rolls and your big toe bends at the bunion as you move along. The bending became incredibly painful and he was having trouble walking long distances.
Matt was also living in an ankle boot to protect his ankle. He was more comfortable when it was stable. He was using a cane and limping along in a boot. It was almost as if it had either gotten worse, or certainly had not improved at all.
By the beginning of 2013, we decided to think outside the box. We went to a doctor specializing in more cutting edge treatments like platelet rich plasma (prp) injections to calm and heal the tendons in the toe. The doctor removed more bone spurs. He injected various remedies in various spots around his ankle. None of it provided any relief. At one point using ultrasound on Matt’s ankle he said he saw a lot of scar tissue and he could see the suture wire that was used to repair the tendon. He mentioned something about this particular suture being known for tearing soft tissue. He was just guessing but he felt that this could be a source of much of Matt’s ankle issues. But he knew of no way to get rid of that suture. It was not going to dissolve. It was made of a polymer wire and he had never heard of surgery to remove it. By now, this doctor was pretty much out of ideas.
It was the middle of 2013 and we determined to move on to what I considered the Lourdes of ankle and foot repair—the Foot and Ankle Institute in Baltimore. If these people did not know what was wrong with Matt’s toe and ankle, then no one would.
As it turns out, this doctor had no idea what was wrong with Matt’s toe. We had been through every option she could think of. The MRI revealed nothing. One option was that a very small tendon was torn but that was inoperable.
The ankle could be fixed. She was pretty certain that an MRI would show that his ankle surgery had “failed” and he would need to have the surgery done all over again. But this time it was even more complicated. Now two tendons were torn and one was torn so badly, she was pretty sure she would have to remove a large part of it and attach what was left to an adjacent tendon, a procedure called “tenodesis.”
We scheduled the surgery and in September 2013, Matt had the ligatures in his ankle reconstructed. She had warned us that this was a complex surgery and the recovery would be very long. No weight bearing for twelve weeks. We bought him a leg scooter. These are contraptions that allow a person to get around by pushing along with one foot, the healing leg resting on the scooter, going along for a ride. We set up a ramp to a side door in the garage so he could get in and out of the house. Because our stairs are winding and narrow, the only way he could get up and down the stairs was to scoot on his butt.
While the doctor was performing the reconstruction, she made a startling discovery. During the first surgery, a major nerve had been caught in a stitch. The doctor freed the nerve during the reconstruction, but it had been trapped for over a year. Matt had been experiencing shooting pains in his ankle and this would certainly have explained why. She directed us to a peripheral nerve surgeon. We have something called peripheral nerves, which give us sensation in our periphery—the arms, legs, hands and feet. These nerves are often the main drivers of pain and they have surgical techniques to relieve that pain by removing the nerves. The idea was to see if he could do anything to de-enervate the nerve. By that I mean, stop the nerve from working and sending pain signals. This doctor was skeptical from the start and said there was nothing he could do about the pain. He was not convinced the toe pain was from a damaged nerve and he felt that doing anything about the ankle was premature.
We reported back and the ankle surgeon suggested we wait to see if the nerve would rebound. So we waited. It did not get better. If anything, the shooting pains increased. At this point, she had no recommendations. For the toe, she believed that if the pain was caused by a torn tendon or ligament, it was not something she could do anything about. It would require microsurgery and she had never heard of such surgery on a toe tendon. For the ankle, she had no idea what to do. She had hoped the pain would resolve and the nerve would recover but it didn’t.
We had exhausted her as someone who might solve Matt’s pain.
But she had said something that intrigued me. If the toe ligament was damaged and repairing it would be micro-surgery, what if I found a micro-surgeon? I started searching the internet for micro-surgeons. Micro-surgeons perform delicate surgery that involves very complex reconstruction. These are the guys who will sew your finger back on if you cut it off. Many are plastic surgeons.
I found a website and emailed a doctor in California. I explained Matt’s plight and asked him if he thought there was anything that could be done. He answered almost immediately telling me that one of the best micro-surgeons in the country was up the street in Baltimore and he could probably help.
So I called. This surgeon pioneered a technique to relieve trapped nerves and in many cases, he has worked to resolve pain and damaged nerves by removing them. He was kind of a kooky guy and he insisted that we see his orthopedic surgeon/podiatrist to be sure there were no options from that perspective. We did and the doctor confirmed that we had tried everything possible.
Then we learned something that puts terror in the hearts of all Americans—the micro-surgeon did not take insurance. We would have to pay. If we could not, we could see his younger associate, also a micro-surgeon, to see if he could help.
The doctor, Eric Williams, felt that this would work for the toe and he agreed to do the surgery. We were absolutely relieved. The doctor removed the nerve that serves the great toe, the superficial peroneal nerve. This nerve goes straight to the big toe from the calf. As part of the surgery, the end of the nerve is buried in muscle to protect it, so the surgical opening was made in the shin. And hallelujah, it kind of half worked. Some of his toe is numb and some of the pain was gone. But not all.
Nerves are funny things. They are webs in our body and they can grow, like tentacles, into areas where they sense something might be wrong in the communication between brain and body part. The other funny thing about nerves is that it is not always easy to tell where pain is coming from. While the doctor had blocked the nerves ahead of time to test which nerves needed attention, that test did not reveal all.
For some reason, another nerve appears to have branched into the toe area to give signals to a part of the toe. Even worse, Matt could now clearly feel sharp pain in the area where the first podiatrist had done the surgery to shave bone from the bunion. So another nerve has to be removed to cut off the sensation to the bunion and the toe. We are awaiting that surgery.
In the mean time Matt’s ankle needed attention. The shooting pains were increasing and he was having trouble walking pain free. The ankle surgeon suggested we talk to the micro-surgeon and we did. He was surprised that the nerve had been caught in a stitch and he assured us that after all this time, it was not coming back. Those jolts of pain were signs that the nerve was damaged.
Matt headed into more nerve surgery, this time to remove the sural nerve, which feeds into the ankle and that was stitched during the first ankle surgery. The sural nerve is in the calf and goes down to below the ankle joint. Again the surgeon had to remove the nerve and bury it in a muscle. So he started a little below the back of the knee and buried it deep in the calf muscle. Matt’s outside calf is now numb. This surgery seems to have done the trick. The shooting pains are slowly dissipating and he is in much less pain.
There will be more to come. Another nerve to the toe needs to be removed and there is some residual pain emanating from the ankle that is likely tendinitis from walking funny for years. We hope these will clear up.
So that is the long tale of Matt’s Great Toe and the side kick, the pain-in-the-ankle. And this is why our life seem different than it was before. We are a little consumed with the world of medicine.
Post script:
During this time, Matt really wanted to try and help out. Here he is putting away his laundry. I guess head transport is one way to take care of it.
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