Monday, October 1, 2007

Today's cardiothoracic appointment

I got put in a holding pattern. He's afraid to do anything because of how high the chances are of complications with the Ehlers-Danlos. in the mean time, he wants a strengthening program--which he knows can't be done as I permanently can't lift more than 3 pounds. and wants me to learn to sleep in a different position because I'm killing this artery--but knows it took me the last year to learn this one. he really doesn't have a grasp of the CM/EDS impacts, other than EDS has its risks and it seems to be scaring him off.

So I'm supposed to build up strength (but wait DON'T do that!) and sleep differently (but oh you can't so go ahead and finish off that artery and lose your arm) so see you in three months. He admitted he's a heart guy, not a "world expert" in thoracic issues. He said he'd support getting another opinion, particularly a doctor in Denver, never told me his name as I was just floored and didn't think to ask, said he'd have no problem sending me there.

My Pain Man had called one night last week and said he and the other doctors in the practice were talking about me and really want me to see this other doctor--he IS a thoracic outlet expert. He lives in Baltimore but has an office here in Arizona, comes here about every 6 weeks. They're getting me in to see him on the guy's next trip here. Dr...Dellon? Pain man gave me Dellon's website and they had all these books they made on stuff, and there was one completely on thoracic outlet, so I linked to it.

Today just didn't go at all like I thought since he had been planning surgery, thought I'd be getting a plan of action and date today. Here, for once, I have a FIXABLE problem (like that has ever happened before???) and they run away, run away.

It's not the end of the world. Maybe the end of my arm, but maybe I'm just supposed to go bit by bit??? I don't know.


  1. I hope you can see the TOS guy soon. If you have to go to Baltimore ever to see him and I'm still in the area I will totally be there for you.

  2. Oh, you poor thing! Medicine can be so rough. Some doctors stupidly overtreat and don't bother to inform patients of the risks, and other's are too timid. I am not sure about the doctors for this horrible condition you have, but you might want to check into Houston, Texas. The city literally has two skylines. One is downtown Houston, the other is of all the skyscraping hospitals in the "Texas Medical Center."

    Try this link if you are interested:

    All I know is the cancer center I went to there is considered one of the best in the world, and there are specialty hospitals for just about every goofy disease out there, all within a mile radius. I'm sure you would find a doc there who will offer you hope and give you the best treatment.

    I would sure give the best a try if my arm was on the line! As it is, there is a great chance that if I live long enough (if the cancer doesn't come back) that they will have to amputate my lower jaw as a side effect they didn't warn me about from the radiation to my face. I dread that! That is no way to live.

  3. Keesha, I pray this new TOC doc will be the answer to all of our prayers. Darlin' you need a miracle and you need it now! I'm here for you, to listen and to give cyber hugs. You are such a dear and wonderful person.
    God bless you always

  4. Bless your heart Keesha. I am so sorry you are having such problems. {{{HUGS}}}