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  #11  
Old 01-23-2006, 04:28 PM
juliemn juliemn is offline
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Default Re: Pelvic AVMs?

Sarah,

No...I don't have AVM's. And I think that using Provera is good in some cases. And it is usually a choice for the first step in amenorrhea (lack of period).

I just read your previous post....I think that "unopposed estrogen" in this must mean anovulatory. If you don't ovulate, the body doesn't produce the progesterone...and the estrogen builds up...thus unopposed estrogen. ;D

An estrogen build up in someone with AVM's would be a good question for Dr. Burrows. Maybe progesterone would be good way to help this? Maybe the estrogen build up could cause more issues in relation to the AVM? It could be that the gyno's right....but really should have suggested a relationship between themselves and the vascular docs during any type of hormone treatment? Brainstorming now.

I use it because I've had anovulatory cycles....but my midwife always waits until at least 3 months of no periods before she prescribes. The only reason she lets me use a home test for the pregnancy, is because we've developed a relationship....and she knows that after 3 years of trying to concieve another child I know my body well. My husband calls me his back country midwife... :.

My opinion of the depo provera shot for birth control is vastly different!!! It is what caused my anovulatory cycles in the first place. I call it the evil depo shot....and don't advise it to anyone. But that's just my opinion, and probably a topic of an entirely different forum. LOL Ironically the drug with the cure is the same drug that did this to me.

And I guess I really don't know the implications of AVM's and any problems with menstruation. But it's very interesting. Let us know if you find something out?

Julie
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  #12  
Old 01-24-2006, 12:08 AM
Sarah H
 
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Default Re: Pelvic AVMs?

Hi Julie, Dr. Burrows called me today and spoke with me for over 20 minutes about Nell. She was able to review Nell's MRI's. She thinks that she will be able to help Nell (yeahooo!!!!) We had not had her angiogram sent to her because it was from so long ago but she wants to review that as well so that she can determine which "approach" to take when doing sclerotherapy; hopefully she won't have to have another one once we get up there. We are planning on going after Nell gets out of college for Summer Break.

Dr. Burrows did not think that it would antagonize Nell's AVM to take Provera, that is what she gives her patients that need it, so I guess we'll get Nell's prescription filled and see what happens.

I was wondering about what you said getting Nell's hormones under tow might help decrease the growth of her AVM. That would be a big PLUS. We'll know soon enough.

Well I better get going and see what the flights look like to New York/Boston (maybe we'll be able to get a discount this far in advance) Talk with you later, Sarah
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  #13  
Old 01-29-2006, 03:46 PM
juliemn juliemn is offline
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Default Re: Pelvic AVMs?

Super! Glad you got your questions answered!

Good Luck in Boston

Julie
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  #14  
Old 01-30-2006, 01:01 AM
Sarah H
 
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Default Re: Pelvic AVMs?

In the past when we have flown to Mayo Clinic, we have used my sister in laws buddy passes she was a flight attendant for Delta. She doesn't work for them any more and I was wondering if any of you has had success with any of the online services in making plan reservations and booking hotels. I would love to know who you used and any pros/cons of using the services. Thanks for any help that you can give. Talk with you later, Sarah
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  #15  
Old 01-30-2006, 04:52 PM
nickbar nickbar is offline
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Default Re: Pelvic AVMs?

One thing that came to mind is if you use one of the services. Call the hotel and confirm what you ordered. I've been in line behind someone that booked a hotel room and thought they were getting 2 queen beds, but the hotel clerk said no and blaimed the service they used. Not sure if that is true...but it does seem possible if you are using a third party to book things that communication could get mixed up.

GOOD LUCK

C
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  #16  
Old 01-30-2006, 05:29 PM
Donovan Donovan is offline
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Join Date: Jan 2005
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Default Re: Pelvic AVMs?

Hi Sarah,
When I took my daughter to Boston, we stayed at the Best Western Boston Inn at Longwood. It was by far the best rate. I booked it by phone and the best thing to do is phone the Hotel directly, and tell them that you will be going to the Childrens Hospital. It is next door to the hospital which is extremely convenient. Let me know if I can help you with more information.
Liz.
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  #17  
Old 01-31-2006, 01:55 AM
Sarah H
 
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Default Re: Pelvic AVMs?

I think that you are right in that there can be "glitches" in using an outside source instead of a travel agency and/or going directly through the airlines and hotel. I'm sure with our luck we would be the ones who would have difficulty. It sure would be nice if there was a facility close to us that had the experienced doctors that we need to deal with Nell's AVM. I haven't heard back from Dr. Burrow's office about what specific day/week the appointment will be on; evidentily they base the appointment on what Dr. Burrows thinks that she will need to do and they have to wait for her to determine the exact course of treatment. In the meantime, the arteriograms that I thought had been sent to Dr. Burrows from Mayo got sent to my house instead, at least she was able to review Nell's MRI's, I'll get the arteriograms sent to her tomorrow. Oh well, that's just a small inconvenience.

Thanks for your advise. Talk with you later, Sarah
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