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-   -   Pelvic AVMs? (http://birthmark.org/board/showthread.php?t=1733)

Sarah H 01-09-2006 08:34 PM

Pelvic AVMs?
 
OK, I am starting to have this intuitive thing or maybe it is a "worry-wart" thing, about my daughter. She currently has an AVM in her hand and forearm involving both her bones and muscles, but I have read that people can have them in their pelvis as well. She will be 20 this month and although I should have known this I did not realize that she only had a cycle 4 times a year and here recently since Christmas has had one twice. When she tried the high does of antibiotic to help slow down the growth of her AVM's several years ago she had a cycle continuously. What are the symptoms of pelvic AVM's? Is this something that I should be concerned about? Is irregularity a symptom? The AVM in her arm and hand have been growing again and I wondered if there is a connection? We have set up an appointment with a gyno next week but wondered how knowledgeable he would be regarding what to look for (we live in a very rural part of Kentucky.)

I hope someone out there has some info that would help us. I'll look forward to hearing from you . Sarah

nickbar 01-11-2006 05:02 AM

Re: Pelvic AVMs?
 
Email Linda Shannon from the home page "expert area"... she will be able to give you any possible information she has heard of on this subject. She may refer you to a specialist that best fits this question.

GOOD LUCK

C

Sarah H 01-19-2006 08:40 PM

Re: Pelvic AVMs?
 
Hi, my daughter I and I just returned from the doctor who wants her to go on the hormone provera to help regulate her periods. I have read that if you have AVM's then you should never go on any hormones, would that include provera? Her doctor (who I didn't necessarily like) said that you had to make compromises and one of the compromises was to take the chance with my daughter taking Provera or have her bleed uncontrollably and possibly have cancer from having irregular periods. He said that she had "unopposed" estrogen (whatever that means) To me his statements did not make any sense. Does anybody have any knowledge of how provera acts on the body and AVM's and is it safe? Thanks for any help that you can give. Sarah

nickbar 01-19-2006 09:08 PM

Re: Pelvic AVMs?
 
I don't have knowledge in this subject, but I think you should get a second opinion. And yes, I would confirm with a vascular birthmark specialist about taking any hormones with an avm. This is not something a GYNO is going to know about most likely.

A lot of what you said this doctor mentioned puzzles me and just doesn't sound right.

Corinne

Donovan 01-19-2006 10:02 PM

Re: Pelvic AVMs?
 
Hi Sarah,
I spoke to you a while ago about our daughters AVMs. Last October when we saw DR. Burrows, I asked her about the pill. She said that my daughter must never take hormones as it could do irreparable damage to her AVM. I suggest that you contact an expert. I realize that your daughter has problems, but maybe she needs more tests, not a quick fix. Have her thyroid levels been checked? Often an underactive or over active thyroid can cause menstrual problems. I wouldn't take any chances with Provera. I would continue to ask questions. I wish that I could be of more help.
Liz.

Sarah H 01-20-2006 12:15 AM

Re: Pelvic AVMs?
 
Hi Liz and Corrine, Thanks for your help and offering me your opinion. I didn't think things sounded right or at least I knew they didn't make sense to me. Nell is scheduled for a thyroid function test as well as a fasting insulin level test. I will wait to get those test results back and then contact Dr. Burrows, hopefully by that time she will have had enough time to review Nell's MRI's and will be able to offer an opinion.

I was able to contact her doctor at Mayo (I value his opinion greatly) He spoke with another doctor who said that there is a risk of a blood clot developing in Nell's AVM and traveling to her lungs if she were to take Provera; however he said that some patients with AVM's had been successfully treated by using provera to help regulate their periods. He said that we would need to watch for increased pain and discomfort IF she were to take provera which I'm guessing could indicate new growth and/or possible blood clot; however, after reading your responses and that of the her doctor at Mayo, I think that we will wait and see what the opinion of Dr. Burrows is.

You would think having an AVM would be enough of a challenge without adding all of this other stuff on top of it. (Sometimes life just gives you a raw deal...doesn't it?) One of the many things that upsets me about Nell having an AVM is that it is never ending. You can never let your guard down or "whammoo" you get kicked in the shins with something else.
Sorry about the "pitty" party. Thanks for your help. Talk with you later, Sarah

nickbar 01-20-2006 04:54 PM

Re: Pelvic AVMs?
 
that is why we are here... no pitty party...its suppot system that is very much apart of managing life with something like this.

I agree, see what Dr. Burrows has to say.

Keep us posted.

Corinne

Sarah H 01-21-2006 05:36 PM

Re: Pelvic AVMs?
 
Hi All, Nell is home this weekend for her birthday, she turns 20 tomorrow. She is quite upset about the choices that she is going to have to make regarding whether to take provera and get everything regulated and/or not taking it and possiblity being irregular all the time. I think the gyno we took her to really scared her into thinking that Provera was her only option and that if she didn't take it then she was going to die from cancer or bleed so badly that she'll have to be put into the hospital (some doctors??!!?!?!??) I hope that her decision will be to wait and see what Dr. Burrows says and to find out what her thyroid function tests and insulin tests come back with, but ultimately it is her decision. Well I better get going. Talk with you later, Thanks for being my sounding board Sarah

juliemn 01-23-2006 11:49 AM

Re: Pelvic AVMs?
 
Good grief.....I can't believe that a gyno would suggest a hormone treatment without giving better than the vague answers that they did. Sometimes I wish some (not all) physicians would stop treating us like children. (Sorry...my own little vent.) I'm glad you're asking Dr. Burrows opinion.

Here's the scoop on Provera....which I have used a couple of times.

Provera is progesterone, and essentially kick starts your body into a luteal phase. (The time period...usually of two weeks..after you ovulate and before you get your period) It's often prescribed to women who go more than 4 months without a period...with precaution. It can also be used to prevent ovulation..at higher doses (think the depo provera shot). I don't know how this doctor prescribed this to your daughter.

BUT...and this is a big but....there are some precautions that should be taken. I'm not assuming that your daughter is sexually active...but this is a biggie. For women who are active...the Provera should ONLY be taken after a period of 2 weeks without unprotected intercouse....and after this two weeks need to have a negative pregnancy test before they start the hormone. A home test is fine, as long as the full two weeks have been counted. I usually give it about 2 extra days myself. Most doctors will not prescribe it without a negative pregnancy test....even if you tell them there's no way you could be pregnant.

Essentially...depending on the dose...provera can either halt ovulation completely...or it can kick start the body into having a period.

I think that the gyno is suggesting that your daughter may be having anovulatory cycles...(not ovulating every month).

Normal cycle....1. Period....2. body produces estrogen....3. body releases egg....4. body produces progesterone...5. if there's a pregnancy progesterone maintains it, if not...body has period again.

When you don't ovulate..there is a build up of estrogen, and also a build up of the lining of the uterus (which is a pre cancerous condition...but so is an abnormal pap which a lot of us have dealt with).

More than you ever wanted to know about yourself huh???? LOL

HTH

Julie

Sarah H 01-23-2006 12:24 PM

Re: Pelvic AVMs?
 
Hi Julie, What a wealth of info you gave me. I needed to know why/how everything works and you helped me with that. You are right some doctors are really arrogant and think their opinion is the one and only opinion (thankfully, not all are like that) I e-mailed Dr. Burrows (just to check in ) and I got an automated response stating that she'll be back in her office today, so I would imagine that she will be overwhelmed with "catch-up" work.

It's good to know of someone who took Provera and it helped them with no complications. (Do you have AVM's?) I feel pretty confident that my daughter is NOT sexually active, so the pregnancy issue would be mute for now; however, that would be something that she should be aware of when she does decide to become involved with someone. I think the doctor just "willy-nilly" prescribed Provera to her, because that is the "standard" treatment without even considering all the other circumstances going on with her.

I think the thought of seeing another gynocological doctor is not a very happy thought for my daughter (for that matter which one of us is it a happy thought?!?!?!?); she is pretty upset with the whole "shebang"....I don't blame her so am I. What a way to celebrate your 20th birthday weekend.

Thanks again for your help and insight. I needed to know what in the world the doctor was talking about. Talk with you later, Sarah


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