This was not a good day.
I had my appointment at the vascular surgeon's for a pressure test on Monday, April 17. I met with the nurse practitioner because I wasn't able to get an appointment with the doctor until April 27. We went over my symptoms again. Then, a lab tech took my blood pressure in my arms, thighs, calves, ankles, and big toes. She used an ultrasound pen to double-check my BP in my thighs, calves, and ankles.
Weird, to hear my heartbeat coming out of my feet.
Then I did five minutes of calf raises to get that lovely burning sensation, and we tested everything again.
Then, she did a full scan of both legs, from groin to ankle; she spent extra time behind my knees to rule out peripheral arterial disease (PAD).
Then they brought me in to see the doctor. I'd been told he was too busy to see me, so knowing he was making time for me immediately brought a sense of dread. He broke the news. They'd ruled out PAD and other vascular issues, so barring bilateral tears (still a possibility but unlikely) it's probably compartment syndrome. That's unlikely too - a rare diagnosis. But less rare than bilateral calf tears.
His suggestion was that I "find another exercise". That I "take up biking."
"I am going to be running at 90," I told him and started crying. I felt stupid for crying, but I was so caught off-guard the emotions just kind of took over. When I had control, I asked some followup questions. What's the next step? What if I elect to have surgery, a fasciotomy, the only real "cure"? He recommended against it because of the risk of scarring, but agreed to help me seek a second opinion for testing and treatment.
When the doctor stepped out again, the nurse practitioner took over. She was really nice, and explained that sometimes male doctors don't get it, that she could see running is my passion.
I cried on the drive home. I wasn't sure why I was so upset; maybe because hearing "You should give up running" was the last thing I expected. Maybe because the doctor had treated me like a vain little girl who would care about surgical scars and because he clearly doesn't get that running is more than just my preferred means of exercise.
When I came home I tried to look like everything was fine, but Matt took one look at me and asked, "What's wrong?"
"They said I can never run again." I tried to make it a joke. But then I started crying. Again. And I explained against his chest that this wasn't really the case, that we have ruled out PAD and the doctor thinks I have compartment syndrome after all. That the cure is a fasciotomy resulting in horrendous scars or to take up another form of exercise.
That the doctor highly recommended biking. That he said most of his female patients regret the surgery because the scars are so bad.
I think that's what brought me to tears. That he would speak to me like that, telling me that "young women" don't like the scars. Like scars matter. I have scars. I embrace the history of my scars. Our bodies are made to be lived in and banged about. No one is scarless. I am not scared of scars.
I can't give up running. Running saved my life. It changed who I am wholly and completely. And I still have goals to meet. A sub-5:00 full marathon. A 2:05 half. A sub-60 10k. A sub-26:00 5k. The Loch Ness Marathon.
It seems silly; I'm a hobby runner. I'm not winning any races. I'm not an elite racer who makes a living off this. But I can't give up running...not without a fight. And not for fear of scars.
So. The plan.
I'm still in pain from the exercises on Monday. Once this dissipates, I'll try running a bit. Intervals. Then, if the pain comes back for real, I'll see if my insurance company will allow for an MRI now. And I'll schedule an actual pressure test, complete with needles and pressure gauges, like my calves are some kind of a messed up basketballs.
And if that test is positive and it really is compartment syndrome, I'll have the surgery over the summer. Five weeks of recovery time and then, hopefully, pain free runs and some storytelling scars for the rest of my life.
Having a plan isn't making me feel any better because the lingering pain in my calves tells me running isn't going to work out right now. It's Friday, and my legs still hurt so much it takes me two minutes to stand up - slow, slow, careful - and I'm walking with ginger, timid steps. I was prepared to hear this was nothing; I was taking silly pictures of myself hooked up to the BP machine before the hammer dropped. I don't feel like I run enough to get a diagnosis like this. It's like the injury doesn't fit the athlete.
And we don't know yet, for certain. So I should be trying to stay positive. But I feel like I'm grieving, and I'm pissed and frustrated. I don't feel happy to have an answer because I don't really have a real answer yet. Waiting is worse.
Maybe, if this goes the way I'm imagining, I'll feel happy five weeks post-op when I can run without pain. And that will be August.
I did talk to a Sub-30 Club friend about this; she had a bilateral fasciotomy for compartment syndrome years ago. She doesn't regret it. She can finally run without pain. Her scars are noticeable but far from terrifying. She made me feel much better about the option. It feels viable, knowing someone who had it done.
But I just wish I weren't in a position to have to make the choice.
Sorry this is long and maudlin and a little all-over the place. Obviously my head is full of things right now and this was the best way to try to wrap my mind around it all.
ABK
I'm so sorry that your doctor lacked some serious bedside manners. Its frustrating to not be taken seriously. Sure we're not elite athletes, but if the scar is the biggest risk, who cares. I hope you are able to find a second opinion that listens & keeps their personal/superficial opinion out of it.
ReplyDeleteOh my dear...I am so so sorry of this news! I really hope that is not what you are facing. It sounds terrible. A second opinion is always a must. I didn't get my final foot diagnosis until I saw a 3rd doctor! Others were saying it was PF and I have split tears in both peroneal tendons! Doctors can be very wrong so keep searching. You will find your answers and have your plan. Chin up, girl.
ReplyDeleteI'm sorry to hear this. :( I would definitely get a second opinion, preferably from someone who is a little nicer about the whole situation! I love your attitude of being willing to do anything to get to keep running--very inspiring. :)
ReplyDeleteVery sorry to hear this :-(. And yes, it is obnoxious when people assume that as a woman you would care more about unsightly scars than being able to do something you love. I would definitely get a second opinion. I'm sorry you have to go through this, but hang in there - you'll come out on top of it eventually!
ReplyDeleteSo sorry. ☹️ It's good that you have plans ready depending on how your next steps go. Also good that you have a connection to a someone who has been through the same thing. As for the doctor, that makes me so angry. My 20 y-o niece has been dealing with a condition for 2 years that doctors haven't been able to diagnose. She has gotten feedback like "just drop out of college if it gets too bad," "it's all in your head," and "you just need to relax and have fun." Meanwhile she is dealing with significant pain and a loss of use of her hands--and that's their advice??? She's felt that doctors don't take her seriously as a young woman, and she's very frustrated. So, unfortunately, I don't think your experience is isolated.
ReplyDeleteI am so very sorry to hear this. I agree with you in regards to scarring and while running might be a hobby rather than a career it is one that those who aren't runners truly don't understand. Waiting really is the worst having having things up in the air - well for me, there's no worse feeling. Sending love. <3
ReplyDeleteI'm so sorry sweetie....I know the pain of being told to stop running....although mine has only been 4 months...the news at the time was devastating. I too know someone who had the surgery and has been able to run again. I know we also have a chiropractor that has helped people with active release and scraping of the calf muscle. You are going to be able to run again!!!! Maybe not this week or this month...but you will...I just know it!!!!
ReplyDeleteSee if you can find an orthopedic that is a runner. My orthopedic doc on this side of the state are VERY good and treat mostly athletes. Such a sucky initial diagnosis may warrant a trip across the alley to see some of the docs that treat the Dolphins and Miami Heat. I can give you names....
ReplyDeleteI'm so sorry you're going through this Ali! I hate that the doctor was so flippant about your running! We may not be elite athletes but running gives us more than just cardio! Hopefully you get some answers soon about your calf and find a course of treatment that will get you back to the pavement pain free ASAP!
ReplyDeleteYour doctor is taking the easy way out... to tell you to stop running, what kind of bs is that? He is being lazy and not helping you seek solutions. I strongly suggest to get a second or even third opinion.
ReplyDeleteI am pissed that your doctor treated you like that. Just like everyone said... get a second opinion. My first dr. told me I had arthritis in my knees and I needed cortisone injections. My second one told me I have the knees of a 20 yr old. How can their assessments of THE SAME MRI be so completely different??? I don't know. But listen, I know this sucks. I know you want this fixed now. But don't give up and don't just let what this dumb dr. say be the final conclusion because I know it's not.
ReplyDeleteAlso, if I knew surgery would allow me to run, I wouldn't care at all about the scars. I don't blame you.
DeleteI hate everything about the way your doctor delivered this diagnosis except for the fact that he agreed to help you seek a second opinion. Hopefully another doctor can deliver some better news for you. In the mean time I hope that run/walk helps you in some way until you get another diagnosis or until you're able to have the surgery. I looked through Google images of the scars and I don't think even the worst of them are bad. You could always get a tattoo to cover them up if you really wanted to!
ReplyDeleteI'm so sorry, both for the news and for how the doctor handled it. It sounds like you've got a good plan and some good support behind you and I'm grateful for that.
ReplyDeleteAnd yes - scars? Phooey on scars. Scars show that one has lived.