Thursday, August 4, 2011

Dr. Casey Rules.

She does.  She's the physiatrist I saw up in Chicago.  If you remember, she ordered an MRI of my spine, which I had done last week.

I talked to her today.  My spine is normal.  When I first heard that, I was deflated.  It seems bizarre to want something to be wrong with you, but anyone who's been through a journey similar to mine would understand--finding something wrong means finally finding out how to fix it.

She told me she's been doing a lot of research.  That she went to the medical literature and has been poring over articles relevant to my symptoms.  She began discussing articles that I have read over the course of these almost 12 months now.  These articles are hard to find.  She's been working.

She explained that she's been reading a lot about abdominal cutaneous nerve entrapment syndrome (ACNES).  I have read a lot about it, too.  And I had asked my pain doctor about it, but he said it wasn't possible.  Not sure why he thought that because he wouldn't tell me.  Anyway, she thinks we have to at least rule out the possibility that something like that is contributing to my continued pain.

She agrees that my lingering pain is nerve pain.  The Neurontin helps it immensely, and that makes sense only if it's nerve pain.  If it's not coming from the spine, she said, it must be coming from the peripheral nerves that lie between the fat and muscles in the abdomen.

So how is this diagnosed?  Through some super-duper ultrasound study (I can't remember the exact name of it) that is not performed anywhere near where I live.  It is done, however, at North Western University in Chicago.  She spoke with an interventional radiologist there--one who has written national practice protocols for the diagnosis and treatment of this condition--to perform this test on me.  So, hopefully for the last time (except for races!), I'm headed back to Chicago.

Not sure exactly when yet.  But I'm hoping it's before October.

I'm going with a totally open mind.  I have long given up expecting them to tell me exactly what's wrong with me--for whatever reason, no one has been able to figure it out with any kind of certainty.  But I feel that I have to do this...because what if that's it and we didn't check?  If that's normal, I'm not sure what she would be able to suggest at that point.  I imagine that people will think that I must be utterly crazy, and that this pain is all in my mind.

All I can say to that is that it isn't.  What I feel is real, and I hate it.  I have absolutely hated going to all these doctor's appointments, trying to track down specialists, spending money from our savings account, and, most of all, running in pain.  I am not and have never been seeking attention--I get plenty of that from my husband and kids.  In favor of sitting in some doctor's office, I would much rather be running on the road, in complete solitude, daydreaming about my next race.  I would much rather be blogging about shin splints or runner's trots.  I am not a whiner.  I put up with pain to a fault.  And that is what I say to those doctors who have (and I know there are some) doubted that my pain is genuine.

If you remember--the reason that I chose Dr. Casey was because she is not only a physiatrist, but a researcher.  She did exactly what researchers do--she went to the evidence.  To the published, scientific literature.  What a concept.  None of the other physicians I have seen (to my knowledge) have done this on my behalf.  And it's likely because they simply didn't know to.

I am not saying that Dr. Casey has figured this whole mess out--she was very clear with me in saying that, if this is what I have, it would be quite rare.  But she has, at least, handled it the appropriate way.  What does the evidence say?  That's how she's guiding her diagnosis and treatment of me.

And that is why people with PhDs are so important.  They provide the scientific evidence upon which we base all types of things--health care, marketing strategies, etc.  They make the world go round.


  1. Hi Wendy,

    I'm writing from Sydney, Australia... I stumbled upon your blog whilst researching into my condition - exactly the same as what you have! I'm in the process of having cortisone/nerve blocks and surgery discussions, just like you did! My doctors/physio wholeheartedly believe it's coming from nerve compression - the nerves that run from your spine, through your intercostals and into your abdomen! Just like you, it's the impact of running that brings on my abdominal and chest pain. I've had it as a chronic condition for the past 2 years, and on and off for about three years prior to that. I can swim and cycle 95% of the time with no pain - as there is less impact. The interesting thing with me is that after the last injection, I began to experience the pain in the back (but on the same level as my abdominal pain) - T11 and possibly some involvement around T8! For this reason, I believe it is coming from either spinal compression, or the rib slamming down on the intercostal muscle/nerves. My doctor has talked about the possibility of surgery to free up the nerve, however I am having some tests this week to try and determine exactly where the nerve(s) are being compressed. I understand this will involve a series of anaesthetic injections in different places and then going for a run to see. The previous injections have allowed me to do some easy running for a longer period of time without pain, but ultimately it is still there. My pain is on the right side, right next to where rib 11 terminates, and I can also get it more midline on the edge of rectus abdominis. Over the past 18 months I have also began to experience it in the chest, just under my collar bone. I just wanted to let you know I feel your pain (literally and metaphorically), and you aren't the only one with this condition - your symptoms fit me to a tee! I'll keep reading your blog in the hope you may find some more answers, and will update you on my progress if you like. I know how it feels to have doctors think you're crazy or soft, or suffering from some sort of psychiatric disorder... but I know that it's real and it's bloody well frustrating! I'm not going to let this destroy my running either... I don't care how long it takes! Hang in there :)


  2. Julia--thank so much for commenting! I am sorry you have this pain, but glad to know it's not just me. Have you had a musculoskeletal ultrasound? That's how they found the one trapped nerve. Also--ask them about a neurography. That's what I'm doing next. It's a type of scan which can show nerve compression. My pain also goes into my shoulder (suspected phrenic nerve), and that's the only way to see if it's entrapped. Plus, they couldn't find the left-sided problem via ultrasound. Did anything bring on your condition? Mine happened right after pregnancy.