Friday, November 9, 2007

Physical Therapy aka Physical Torture

You'd think I would be the last person to call PT by the infamous nickname of Physical Torture, having worked in in-patient PT for years while working toward a degree in it. Being on the patient-side of PT is a different story. I've had PT so often the last 3 years.

I started PT again this with my therapist, K. I filled her in on the venous Thoracic Outlet Syndrome (scroll down to Venous type), which is more commonly known as Paget-Schroeder Syndrome. She wanted to see if she could feel it, being that it's the rare sub-type and not the typical fairly harmless kind the other 98% have. She felt the pulse disappear and burst out laughing with excitement. I asked if she could tell me what to expect post-op, and she couldn't. Though the PT's there treat plenty of TOS patients, none of them have ever had this type and thus needed surgery. They seem curious as well. In the picture, the problem is the blue artery that runs behind the collarbone & first rib.

So I've gone twice this week. Compared to other regimens I've had, this is pretty mild stuff. The goal is stretch the left side of my neck as much as possible, along with the muscle just below the collarbone. I start with an ultrasound treatment then have them massaged/kneaded, followed by 3 Theraband (only yellow) activities. Today she added a stretch where I put both hands on the two sides of a door frame and lean slightly, just enough to feel the muscles. And I thought I'd fall over right there.

I've been pretty stunned at how painful this week has been. It's one of those chicken-or-the-egg situations. I have had a tremendous amount of pain this week. It's knocked me flat on my face 24/7.

I don't know if this increase in pain is related to the PT, or otherwise. That's the joy (ha) of these diseases. You never know what is coming from which, or like the 4th of July with my appendix rupture, having spent the week leading up to it thinking my lower back pain worsening was just CM flaring up.

What concerns me more this time is the location. My chest has bouts of this before but never this bad or for nearly this long. Just below my breasts, right in the middle, is what has had me laid out lately. It doesn't feel like any heart stuff I've dealt with over the years, more EDS crap of course, so I just don't understand what the heck the source is. There's the pectus excavatum (sunken chest--thanks again EDS) but I don't think that's something that just gets worse? I have no dang idea and I just want it to stop.

Breathing is much more enjoyable when it doesn't hurt.

On a happy note, my 5 year old is doing much better in school, no injuring herself or others, and my 6 year old is hooked on math and become a reading fiend, spending time every day reading lots of chapter books. Right now he's been reading Star Wars Episode 1, a 4th grade reading level. I'm so proud of both of them!

DD's Babette blanket is nearly finished. Well, the squares anyway. I'm working on Panel 10, the last of them. Putting them together will takes ages and will be a new experience for me, but very exciting. I hope to be done before Baltimore and will take some skeins with me to begin DS's. It'll be great to do on the plane and such.


  1. but I'll be suprised if they will let you take the needles on the plane. Sharon had to give up hers at the ER last time.

  2. Oh, I feel so bad for you Keesha! I would give you a big hug if I could! Of course I will continue to pray for you--especially that God will give you some pain relief.

    I read the stuff on TOS. Very interesting disease. So what is the surgery they are planning for you? I was wondering if removing pieces of the bone would relieve all the pressure on the vein? Would there be much risk in taking that upper rib out?

    Thank you for the kind words on my blog!

    I'm glad your kids are doing well!

  3. Hi Scott. They're planning on removal of 1st rib, taking out part of the anterior scalene, and any scar tissue they find. It should decompress the subclavian artery/thoracic outlet area.

    My biggest risk is getting a PE. This is the most common complication for TOS surgery. With the EDS I tend to be a good bleeder as well. I'll have a drain overnight, etc.

  4. Keesha--Please don't get a PE!

    So I've never really noticed the Discovery: Health channel. But I just started. They have some awesome shows on there that are mostly to freak out hypochondriacs. But for me, since I have a legitimate need to learn about medicine, I think it's pretty cool. They have on show called "Mystery Diagnosis" that takes you step by step through the chain of misdiagnoses before various weird ass diseases are discovered. I love it because it's a lot like my favorite show "House" but without the drama and attitude of doctor House. I play along trying to diagnose the correct disease before they reveal it. Very early in one episode they revealed this girl's CT showed some brain pushing out of the skull. I was like, "Chiari Malformation--thanks Keesha!" She also had EDS and a strange problem with her odontoid process shoving up into the brain. They fused her neck and she is fine now. But one thing she said about her undiagnosed years (about 12-20) was that her friends all seemed to disappear. I thought of you again.

    Ah, now I was looking over my post "The Great Burrito Incident" and you commented that you have a gas station burrito story that you should email to me. What is the story? I am really curious if you get a minute to email me!

    How is your chest feeling?

  5. Hello I am Kira Faye from the ASAP board. I hope you don't mind but I have taken to reading your blogs because through out your posts on ASAP I have found you to be a very strong and wel informed woman.

    I am hoping the past couple days have treated you better and I am also send positive thoughts your way for your upcoming surgery.

    Goodluck and many Hugs from Kira Faye