Leg Update 6: This is taking forever!

30 09 2008

This isn’t just a whinge; there is actually some news. In the last update at the beginning of September I’d just seen Dr. Duffy, the vascular surgeon who was basically referring me onto another vascular surgeon over at Princess Alexandria Hospital. The new doctor is a public doctor (so free treatment) and also a whiz with this ballooning and gluing thing.

I finally got word that my first consultation with this doctor will be on November 17th. That is a long time away. Patience is not my strong point and this is taking forever!

I’d say you could put money on the fact that I will be in Australia at Christmas time.




2 responses

24 11 2008

hello, i also have a vascular malformation, so as of recently that is what is what my current doctor is calling it. I was diagnosed with “Mass” in 1992 and had it partially removed along with several embolization. One embolization has damaged my fingers severly. After all this it keeps getting bigger, its not visibly on the outside it just looks like i have a hump back. In July 07 i had those alcohol injections, Sclerotherapy. Did it work? No. As of my most recent visit my doctor, who is supposed to be the best intervention’s radiologist in country told me deal with it. If the pain got too severe then we could have surgery that would result in his exact words “horrendous deformity” He also told me that the sclerotherpy i had was a bad decision . its been 16 years and one day i hope there will be a cure. And some doctor with horrible bedside manners will not just tell me to deal with it!!!

24 11 2008

Hi Holly!
I absolutely know how you feel, I’ve had a few doctors attempt the “Deal with it” line, I tell them I’ve been dealing with it for ten years now it’s beyond that! In fact my last doctor (Update 7) also told me that there was no guarantee that I’d EVER get rid of the pain, I’ve never wanted to leap over the other side of the room and strangle somebody so badly before.

You know it’s all too easy to see that something was a bad decision after the fact. The Sclerotherapy, sounds like it’s always a gamble (it will be a gamble for me if I have it), and that doctor is an idiot for saying that it was a bad decision. It was the best decision made at the time with the facts available!

Holly, thank you so much for writing a message about this. It’s really nice to hear that I’m not alone!

I just thought, my doctor recently suggested blood thinners as a possible treatment. Has that been talked about in your situation? Could it be helpful? At the moment they have me on a low dosage aspirin as a trial to see if it helps (thinning the blood helps it to easier pass through the malformed veins and arteries), blood thinners have risks like everything else. Maybe you’ve already tried it but I thought I’d suggest it at any rate.

I understand how demoralizing it must be to hear phrases like “Deal with it” and “Horrendous deformity” in the same session. I too hope that there is a cure and hope that neither of those fates will befall either one of us.

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