Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Ehlers Danlos in South Bend

Written by Katie. Posted in Ehlers-Danlos Appointments

After seeing Dr. Cantieri, we headed to South Bend.

My next appointment was with Dr. Lavallee, who is a sports medicine doctor, who also specializes in Ehlers Danlos.  He actually has Ehlers Danlos; the classical type, meaning it affects his skin and he also has the extreme joint hypermobility.  I had no idea what to expect from this appointment, except I was pretty excited to talk to a doctor who actually lives with what I am living with.

When we got to his office, it felt like I was in Larry’s office surrounded by pictures of Olympic athletes, with letters of thanks written to Dr. Lavallee for all he had done for them.  I couldn’t help but think that this was a great sign.

Dr. Lavallee had already received my summary, and all my records before I came so before he even met me, he knew a lot of what had been going on. 

Before I describe the appointment, I want to say that I am so afraid I am not going to explain my experience in a way that does it justice, but I will try my best….

Dr. Lavallee came in and introduced himself to Brad and I.  He asked about my appointment with Cantieri, and I told him I was scheduled for prolo in my neck and back.  He was really happy that I decided to go this route, which made me feel SO relieved.  At my last EDS appointments I was told to not do prolo in my neck, so when this EDS specialist was making the thumbs up sign at my decision to go ahead with it, a huge weight felt like it was lifted.  Dr. Lavallee explained that surgery is the “end game” and I have not even come close to doing enough to get to the end game.

His view was needles or screws, bolts, and plates?  To him it made sense to do needles first, since the screws, bolts, and plates will always be there as an option…I liked this guy already.

Dr. Lavallee explained that although I had been diagnosed twice with Ehlers Danlos, he likes to prove it to himself.  He had me do the Beighton Scale and agreed that yes, I have the hypermobility type with some mild, mild skin involvement.  As for the skin involvement, he asked if I looked like my parents.  I told him I look like my Dad.  He then asked my ethnicity, so I told him Italian and Irish.  He said he was curious because I have characteristic EDS eyes, because of a flap of skin on each eye that gives me, “an almost Asian look.”  Huh. I definitely learn something new at each appointment.

Dr. Lavallee was very in tune with the makeup of my body, and said, “You don’t have any problems below the belt do you?”  I told him no, and he said the proportion of my body is off.  My strength is in my lower body which is keeping the EDS from affecting it, but my upper body is close to waif thin (That has NEVER been used to describe me!)  He said I have some intense strengthening to do on my upper body.  He gave me permission to step up therapy and basically condition my upper body like an athlete again.  He put me through various exercises he wants me to be religious about; exercises I could barely do because of the weakness.  He told me these exercises would not hurt me, only help me, and I have a lot of work ahead of me (Dr. Lavallee is also a strength and conditioning coach so he knows his stuff).

We got to talking, and he said, “so this kinda came out of the blue, huh? 

I told him how it had been my goal to run a half marathon before Brad and I started a family, but I was having so many GI problems and problems with back soreness and tightness that I decided to stop running to give my body time to heal before I went back to running… I explained that after I stopped running, everything started to go downhill, and all my EDS and POTS problems started. 

I told him that this obviously made me throw that running goal out the window…

After I said that he just looked at me and said “why?”  Oh man, with that simple “why” I couldn’t help the tears that came next.  He joked that he thought he was telling me happy stuff, and I told him, he was the FIRST doctor I had seen that gave me hope that even with EDS I can still accomplish many of my life dreams and goals

Dr. Lavallee GOT IT.  He got me.  He got everything because he lives with it too, actually worse than I do.

He said when he was going to med school, his doctors kept asking him what he was doing trying to be a doctor, because they said he would be dead from the pain by 30.  He is 43 now and works more hours than most people.  He said he sent a picture to a doctor who told him he’ll never be able to weight lift of him bench pressing a huge amount of weight.

Dr. Lavallee is all about proving people wrong, defying the odds, and working towards goals with a lot of hard work…I LOVED him.  He said that he truly believes that my athlete mentality that I have grown up with will be what will help me accomplish goals I set and help ME prove people wrong. 

He told me, he understands that it is my neck instability and the POTS that is keeping me from functioning at a level of being able to live my life the way I want to.  He told me to let him help me with POTS by sending me to doctors to help find better treatments for the POTS (since there is no one size fits all), and between prolotherapy in my neck and a lot of strengthening I have ahead of me, we will work on hopefully relieving a lot of the neck instability.  He did say that if I do end up needing surgeries, he has his favorite doctors and will ensure that I am in the best hands (he only sends his patients to surgeons who have already helped him).

Dr. Lavallee will be my EDS doctor from here on out.  That is not to say that the other specialists were not great, but he was the best match for ME.  Even though he was about the facts and science of EDS, he was also about faith, believing, and that having a positive attitude can make all the difference.  As a sports med doctor, I think he treats EDS as a sport, and for me, that is a reassuring way that I can wrap MY head around it too.

He asked me about pain meds, and I told him I am stubborn about taking pain meds because I don’t like how they make me feel.  He told me had some tricks up his sleeve that work for him, because he, too, doesn’t like to take them.  He prescribed me a topical pain med that I rub on places I am having pain.  I haven’t been able to try it yet since it is still at the compound pharmacy getting made. 

I asked Dr. Lavallee if he was worried about the genetics of EDS when having children since he said he had two boys.  He explained that he was so worried about passing EDS on to his children, and that he felt for a long time that he would not be able to live with himself if he knew he was the reason (if) his children ended up having EDS.  He described his whole journey with his wife of thinking about children, trying to have children, having two boys, and where they are today.  Out of respect for Dr. Lavallee’s personal life, I will keep his journey private but I just want to say that it is an amazing and inspiring story, just like I found him to be.  He looked at Brad and I and said, “Your journey will be just as interesting and different, but it will be yours, and it will be how it is supposed to be.” 

Dr. Lavallee was amazing; here is a man with EDS who has had over 200 stitches to keep his skin together, many surgeries for his joints, an amputated finger, braced fingers…and he is doing what he loves because of his attitude and (honestly) his pure stubbornness that EDS will not define him. 

My other EDS appointments were about what I can’t do.  This appointment was about what I CAN work towards with hard work and determination. Maybe the difference between my experiences is he’s a sports med doctor too.  And maybe it’s because he just knows because he lives with it everyday too.  I do know this…Dr. Lavallee believes in himself, and he believes in his patients too.

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Comments (2)

  • Meghan


    >Wow…it really goes to show you how important it is to find a physician that works well with you. Dig deep, work hard and you will get there…that's always been your philosophy and you found a doc that believes that too! Good job for continuing to strive for the very best care you can get and works for you.

    Love you, love you!!!


  • Ila


    >He is an amazing doctor and person… Anyone that meets him , especially as a physician, is lucky, blessed and hopefully they are inspired.


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