Tarsal Tunnel Syndrome

Foot pain is a huge part of my life. I’m considered clinically disabled and sometimes have to use a cane, walker, or a wheelchair to get around. Here’s the story of my incredibly painful and expensive journey on my way to a diagnosis and, hopefully, a cure…

How Did It Start?

I started noticing my foot pain when I began working for CVS on June 1st of 2010. I didn’t see a doctor until the fall of 2011, because I didn’t realize how serious of a problem it was. I assumed that I was experiencing foot pain because I was overweight, so I was embarrassed. I wish I would’ve gotten it checked out sooner, because I probably could’ve avoided these past four years of excruciating pain.

At the time of my first doctor’s appointment, the pain was so bad that I would cry after every shift at CVS (and sometimes during). Eventually, I realized that I had to quit my job because I just couldn’t do it anymore. Working was only making my feet worse and making my life miserable. Although I hope that eventually I find a complete cure for my disability, I don’t expect to ever again be able to work in a retail setting. Doctors worry that, even if I am someday pain-free, any type of over-exertion of my feet (such as a retail job) will slowly make the problem reoccur.

Diagnosis

After I had gone through a year and a half of extreme pain, I realized that I needed to see a doctor. I saw my mother’s podiatrist who originally diagnosed me with Plantar Fasciitis. After going through his treatment options with no success, I realized that I needed to see another doctor and get a second opinion.

I went to a few appointments with a neurologist at NeuroHealth and got an EMG test which confirmed that I had Tarsal Tunnel Syndrome. (Do not take this test if you don’t have to – it’s really painful.) He was able to help me get my handicapped parking permit, which was a complete necessity at the University of Rhode Island, where I went to college.

After my EMG test, I started seeing Dr. Greenburg, a podiatrist based in Pawtucket, RI. I also saw two different physical therapists from Physical Therapy Services of RI (I highly recommend that company!).

Treatment

I went through months of twice-a-week physical therapy, but it didn’t help very much and eventually I stopped going when they told me that they couldn’t help me anymore. The physical therapy loosened my muscles and provided slight relief, but never even came close to fixing the problem.

I’ve worn three different foot splints that work to correct your feet during your sleep, but none made any difference. I’ve committed countless hours to stretching out my foot and calf muscles at home with frozen water bottles, tennis balls, phone books, staircases, my boyfriend’s hands, my own hands, stretching straps, spiky massaging balls – but nothing has worked beyond temporary relief.

When I had exhausted all other options, I finally was given cortisone injections into the arches of my feet, a common tool to relieve this type of pain. I experienced a blissful pain-free two-week period before the pain came right back. Repeated cortisone injections would have helped give me temporary relief but wouldn’t have fixed the real problem, so I chose to forgo that option. Also, the injections hurt like hell.

Next, I tried orthotics. Orthotics are shoe inserts that are molded specifically for your foot. They wrap this weird plaster stuff over your feet and then you get your own orthotics a few weeks later! (The only downside is that they aren’t fully covered by insurance. These babies cost me $450 out of pocket). Well, the other downside is that they made absolutely no difference. Apparently, they do help a lot of people and they are supposed to be good for your feet whether or not they decrease your pain, but I didn’t notice any pain relief because of them.

Possibility of Surgery

In the Spring of 2012, I booked a Plantar Fascia surgery with Dr. Greenburg. After hearing my physical therapist express his concern about this, I went to a different doctor for a second opinion. The new doctor, Dr. DiGiovanni (a Brown University Orthopedic Surgeon who I highly recommend), strongly advised against getting the surgery at that point in time. In fact, he all but came right out and said that Dr. Greenburg had only booked me the surgery to get my money. He said that no self-respecting doctor would suggest having surgery without fully exhausting all other options first.

Currently, I’m furious with Dr. Greenburg. I urge everybody to be very careful about who you let advise you on medical issues! (Another issue I had with him was that he all but promised me that the orthotics were supposed to help with my pain, made me cough up $450, but then when I confronted him about spending all that money on something that didn’t help, he went back on his word and said that he’d never said any such thing. Even though he did.)

The surgery was still on the table, but my new doctor and I decided to try a few more treatments before locking myself into a dangerous procedure that could permanently incapacitate me for life (if something went wrong).

The biggest outcome of that first appointment with my new doctor is that he completely changed my diagnosis. He said that I don’t have Plantar Fasciitis or Tarsal Tunnel Syndrome (previously, I’d been told by more than five doctors that I had PF and three told me I had TTS). I trusted him because he was a lot more knowledgable than my previous doctors and he went into great detail about how he came to that conclusion. I also commended him for telling me the truth — that he had no idea what my problem was.

EPAT

Dr. DiGiovanni suggested I try EPAT (Extra-Corporeal Pulse Activation Treatment) – basically, it’s a fancy name for shock therapy. EPAT is approved by the F.D.A, but it’s still very experimental, which means that it’s not covered by insurance (the procedure costs $500 per treatment site on average). It’s so experimental, in fact, that almost nobody’s heard of it and there’s not even a Wikipedia page that I can link to about this for you!.

In May/June 2012, I had five treatments in which a specialist rubbed a gel on the underside of my foot and rubbed a tool on the afflicted areas that made a lot of noise and produced “pulses” that are supposed to activate tissue and increase blood flow in the area. It did hurt, but it hurt in such a weird way that I can’t really explain it. The closest thing I can use to describe it is that it’s a little bit like getting a tattoo. The worst part was the night after the treatment, though. The increased blood flow made my feet swell and they were very painful to walk on.

Even though you only get a certain number of treatments, the procedure lasts 3 months. One month of treatments and then two months of recovery before an assessment of its success can be made.

Finally Getting a Diagnosis

On August 2nd, 2012 I had my EPAT follow-up appointment and met with Dr. DiGiovanni to discuss the current situation. After talking about the pain and my symptoms in detail, he was able to give me his professional opinion of what my diagnosis is. He thought I had something called Heel Pad Syndrome. Technically, there’s no test to confirm this condition, so that’s why I said it’s his “professional opinion.”

Here’s a little bit about what it’s all about. Heel Pad Syndrome is a condition that somebody is either born with, or they’re predisposed to and it develops over time. The heel is the part of the body that supports almost all of a person’s bodyweight when they walk, run, or do anything involving their feet. The heel pad (also known as a “heel fat pad”) is a bunch of fatty tissue that protect the heel bone and cushion it during impact. Patients with Heel Pad Syndrome have a decreased amount of tissue making up their heel fat pad. The lack of proper cushioning results in pain when the heel comes in contact with the ground.

Dr. DiGiovanni gave me the bad news that Heel Pad Syndrome currently has no surgical or treatment options – in other words, there’s no cure. After this appointment, I was glad to finally have a name for what has been hurting me for so long, but I also felt discouraged, disappointed, and helpless.

 

Or Not?

After being diagnosed with Heel Pad Syndrome, I struggled with the idea that there was nothing that I could do to fix what was wrong with me.

A couple of months later, at Thanksgiving Dinner, my grandparents suggested that I go to a special hospital in Massachusetts called The Lahey Clinic to get one more opinion before resigning myself to a lifetime of pain.

Meanwhile, I started physical therapy again, this time at Palladin Physical Therapy in Cranston, RI. I was in bad shape at that point. Dealing with graduating from college and buying my first house made me stressed out, and my feet were taking the brunt of it.

We were able to get an appointment with a orthopedic doctor at the Lahey Clinic in January of 2013. A few more x-rays and MRIs later, this new doctor was still stumped. He disagreed with Dr. DiGiovanni’s diagnosis of Heel Pad Syndrome, but wasn’t sure what was truly wrong with me. He suggested that we make an appointment with one of Lahey Clinic’s orthopedic surgeons, and also wanted me to try cortisone shots one more time, in a different location (in the middle of the heel vs. the side of the arch), to see if that would help.

I was not excited about the idea of getting more cortisone shots. The first time that I received them, at the hands of the awful Dr. Greenburg, it was the worst pain I’d ever felt in my entire life. Just thinking about going through that again gave me a major panic attack while I was waiting for him to prepare the shots.

But my mom showed me videos of goats to try and calm me down, and that worked a little bit. It wasn’t until halfway through the shots that I realized that something was different. He had given me two separate shots in each foot. I asked him about it and he explained that he had “obviously” given me one shot of novocaine in each foot, and then the cortisone shots.

Um…what? You can get novocaine before you get the cortisone shots? I told him that, last time, I had been given the shots with only a numbing spray and he almost fell out of his chair. He didn’t even realize that you were allowed to give them without novocaine, considering how painful that would be! Needless to say, I was pretty pissed at the sadistically-inclined Dr. Greenburg about that, but I was extremely happy that they hurt way less the second time around.

 

A Real Diagnosis

After that first visit, I was transferred to a new doctor, an orthopedic surgeon at The Lahey Clinic — Dr. Teebagy.

During our first visit with Dr. Teebagy, he explained to me and my Mom that, after examining me and going through all of my symptoms and medical tests, he believes that I do have Tarsal Tunnel Syndrome. After hearing all of his explanations and knowing that he is one of the best orthopedic surgeons in New England, I agree with him.

I’ve known for a long time that Tarsal Tunnel Syndrome was a possible diagnosis, and have been “diagnosed” with it multiple times. We believe that Dr. DiGiovanni misdiagnosed with my Heel Pad Syndrome because he was not very familiar with the rare disorder and that he felt uncomfortable diagnosing (and then potentially having to do surgery on) somebody as young as I am. Heel Pad Syndrome is apparently often used as a “diagnosis” when the real problem is unknown but the doctor wants to give you a name for it.

 

To Surgery or Not to Surgery…

While those cortisone shots that I was given back in January of 2013 did help a little bit, they did not fix the problem and the relief only lasted for a couple of weeks.

After seeing Dr. Teebagy a few times, he brought up the option of surgery. I’ve known about the Tarsal Tunnel Surgery for a long time, but I got a lot more information about it from Dr. Teebagy. He said that, if he were to do surgery, he would do the TTS surgery as well as both the plantar fasciitis surgery and the Baxter’s Nerve surgery. He thinks that the combination of Tarsal Tunnel Syndrome, plantar fasciitis, and Baxter’s Nerve Syndrome is what is causing my problems, and that the combination of those three surgeries would hopefully fix it.

The problem with having these surgeries, specifically the Tarsal Tunnel Syndrome surgery, is that it is very dangerous and risky. There is ~50% chance that the surgery would go well and that I would regain normal function in my feet. But that means that there is only a ~50% chance that it would not be successful. If it failed, there is also a chance that I could end up worse than I started out, due to the potential problem of scar tissue growing in the tarsal tunnel nerve (yeah, I know…gross).

 

The Last Step

I’ve been thinking about the possibility of having to have the Tarsal Tunnel Syndrome surgery for a long time (ever since I was first diagnosed with it back in 2011). I’ve thought about the pros and cons for years, just in case I would ever have to make that decision, and I’ve always known that I would go through with it. Even though the potential outcome is honestly terrifying, if it’s the only thing that might make me better…it’s just something that I have to do.

Hoping to schedule a surgery for this summer, I was back in Dr. Teebagy’s office in the beginning of June 2013. But there was a little glitch in my plans. Dr. Teebagy decided that he wanted to try one last thing that might work — putting my foot in a cast.

At this point, I had to stop physical therapy, knowing that I couldn’t do PT with a cast, and that I wasn’t getting much out of it anymore anyway. I was put into a cast that went up to my knee on my left leg for 35 days. The idea behind the cast is that the reason I have Tarsal Tunnel Syndrome is because the nerve is being compressed by my calf muscle. Physical therapy was not doing enough to loosen this muscle, so we hoped that putting the muscle in that extended 90˚ position for a long period of time would correct the problem.

 

Surgery on Miranda’s Feet…Coming Soon

After 35 annoying days of being in a cast, nothing was different. It was time for surgery.

But there was a problem.

Dr. Teebagy broke the news to me and my Mom that he would be leaving The Lahey Clinic in September of 2013. That meant that I had to make the choice of following him to his new hospital or staying at Lahey Clinic and switching to a new doctor.

I chose to switch to the new doctor because I’d been getting a weird vibe from Dr. Teebagy. Even though we’d done everything possible, he still seemed reluctant to do the surgery. My mom thought that he might be uneasy about doing such a risky surgery on somebody who’s so young…a problem that we seem to keep running into.

I don’t want somebody to do surgery on me unless they are 100% confident about it. I don’t want somebody to be wishy-washy when my future is in their hands. So I made an appointment with the new orthopedic surgeon, Dr. Lobo, in September of 2013, and hoped that she would be on the same page as I was about having the surgery, and I will hopefully be able to have it as soon as possible.

Surgery, Finally.

In September, I had my first appointment with Dr. Lobo, who suggested an idea that we’d never even though of. She agreed that I should have surgery, but was worried about doing the potentially dangerous TTS surgery, so she suggested that we do a different surgery instead — a calf release. Basically, because we think that the TTS nerve is being compressed in my ankle, and that is what is causing the pain, the calf release surgery would loosen the calf muscle and take some of that pressure off, thereby lessening the pain. I agreed with her that this surgery seemed to make a lot of sense, and since it’s an easy out-patient surgery with no potential bad side effects, we decided to go for it.

On November 8th, 2013, I had the calf release surgery on my left calf, and then on December 13th, 2013, I had the same surgery on my right calf. I was terrified, as I’d never been “under” before and was very anxious about finally having surgery after all of these years. But Brent and my mom were both with me to calm me down.

The weeks after both surgeries were difficult. I was stuck in the house, unable to drive, and had to be on crutches for a few days after each one. It was very painful and I had to go on hardcore oxycodone in order to make it through the first week, but eventually I was better. I started going back to physical therapy, this time for rehabilitation post-surgery, and had to do lots of stretching at home and massaging of the scar tissue.

My 12-week post-operative appointment is on March 5th, 2014, in which Dr. Lobo will check to see how I’ve progressed so far.

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