Tuesday, February 19, 2008

Pain Man appointment

Pain Man walked into the exam room and just went, "What the heck happened?"

I sighed and just said I had no idea. He went ahead and did what Urgent Care and the hospital never thought to--he actually did an exam. I leaned against the wall in a push-up stance, back and forth a couple times as he watched my shoulder blades and spine.

After he had me turn back around, he raised a finger to say something, then stopped and said, "You have a lot of WEIRD stuff."

I gave an exasperated laugh and asked what else was new?

He said he knew what the problem was, and touched the exact spot near my shoulder blade that feels like it has the knife stuck in it. That verified that!

I damaged my left Long Thoracic Nerve. Typically those who do this are young healthy people who join the military and end up frequently wearing heavy packs on their back. The few others who get this injury are those with Ehlers-Danlos or other connective tissue disease.

Pain Man also said there is still the possibility that there is damage from the artery surgery (arterial Thoracic Outlet). Internal scar tissue complications apparently begin after any surgery at the 2 1/2 to 3 month mark; I just reached 2 1/2 months. It can be verified with EMG but not until at least 4 months post-op, so there is no use having it now since it would be inaccurate, not to mention it's a painful test having needles jammed in a couple dozen areas around the body.

He prescribed a medication that has been recommended the last few years. I have refused it consistently, as many people have an issue with the common side effect of weight gain. As a recovering anorexic this is a huge deal for me. But with so many complications going on, I know there is simply no way to avoid it any more. I need the med. I will slowly titrate up because of the multitude of side effects commonly experienced, and will end up at 1800 mg a day after a couple weeks, a rather hefty dosage.

I took 1/2 of a pill (300 mg for the night) and in the first hour I experienced 4 or 5 heavy-duty waves of dizziness.

It may help me sleep more than 2-3 hours a night, as is my average.

Fingers crossed.


  1. Chiari Mama,

    Having had a shoulder replaced when I was 24 due to extreme EDS damage, I'm unfortunately quite familiar with different types of shoulder pain and their sources.

    My shoulders have dislocated several times a week my entire life. The current pain I'm having is different than any pain before--dislocations, spasms, strains, rotator cuff, you name it.

    I'm in the 3% of EDS patients who have such a severe arthrochalasia/large-joint involvement.

    I'm a weirdo even among EDSers LOL.

    I suggest if you suspect something along those lines to seek a rheumatologist knowledgeable in it. I've been fortunate. Though neuro care in this area is non-existant, every single doctor I've ever seen here is very familiar with EDS--even my bladder surgeon! Actually he knew more than everyone else!

  2. You winged your scapular? My doctor put me on Topamax for the pins and needles and itching I have been having from my winged scapular. A side effect is weight loss. The winging will slowly move back on its own - without the medication; but it takes time and from my experience; and other EDSers it won't stay put.

  3. Hey there invisible glue,

    I just got back from another appointment and they're adding there is no doubt it's not only the long thoracic nerve but I tore up the rotator cuff (and add in bursitis) pretty badly.

    I've been on Topamax for 3 years. Good stuff! LOL.

    How are you?


  4. Oh, dear Keesha. My my. Well, we say extra prayers for you every night. I guess all we can do now is send a big cyber hug. I'll do it like Linda does it.{{{hug}}}

    Bobby, not the liver

  5. zipperhead; I certainly wish I could get in and out of doctors offices like you do! I see the neuro on March 4th for the first time for the pins and needles, itching. I can tell it is either my neck or something on my spinal cord; I am assuming it is chiari. I have had winging scapulars since forever. I have no doc that oversees my EDS. I have had the itch on my spinal cord for about a year but now I can't stand to have anything touching my spine; any reaching forward, bending brings on the pins and needles. Itching behind the scapular is pretty constant. I am an artist and about two months ago I was working on a pastel and my left arm went numb to the wrist. That is when the pins and needles hit non stop. I should have went to ER. I spend a lot of time trying not to panic. Was it hard to get aftercare for your chiari surgery or are you in the town you had the surgery in?

  6. Glue,

    Some of my surgeries have been in Phoenix, some in Flagstaff, some in Tucson, one in Baltimore, some in New York. My local care is provided by my pain man, who used to have a neurology practice.

    Hang in there with the pins/needles/numbness. I lost sensation on my left side a little over 2 years ago. Strangely enough you get used to it.

    I had my left shoulder replacement and I do wing my scapulas. Just part of life I suppose. I'm putting off getting this tear fixed as long as possible but as least I don't have to do a joint replacement on this one.

    Don't worry about not having gone to the ER. They can't do anything for numbness/pins/needles anyway. They'll make sure you aren't about to die (sometimes) and just tell you to follow-up with your doctor to figure it out. *rolling eyes*