"As someone with an AVM in an extremity, it's a bit more confusing and frustrating. I will tell you what I say now,because when I was diagnosed, no one had any clue how to describe it, even to my parents.
Now,I describe it as a spider web with…"
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Melinda
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- Houston, TX
- United States
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Melinda's Groups
Melinda's Discussions
HHT
Started this discussion. Last reply by laura dot Sep 21, 2011. 6 Replies 0 Likes
Hi all-Can someone tell me about HHT? Is it something that is specific to brain/lung/heart AVMs? Has anyone known if its present in any other AVM cases? I have a peripheral high output AVM and have…Continue
Extremity AVM's...who is out there with AVM in legs?
Started this discussion. Last reply by Carters mom Apr 12, 2011. 4 Replies 0 Likes
Hi, I'm a soon to be 33 year old graduate student with an extensive AVM in my right leg. It progressed into my pelvis. I have been in and out of treatment predominantly with AVMs. The surgery tried…Continue
Melinda's Page
Latest Activity
"Embolizations not unlike AVM's are all different. Onyx, depending upon where the AVM is (which if it's unconnected to the skin is a good sign!) shows little to no grayness, and I speak from direct experience. Glue actually has shown some…"
"LB's Dad:
Hello from a fellow Houstonian!!!!!! :):) Okay, so take this from someone that has a humungous AVM in her right leg and pelvis.
There's a little good from column A and column B. No AVM is done "growing" until the…"
"Vonda- I live in a small town too, and you're not alone. I went to find a new doctor today and they were like,'Avm" what's that? So, here's my experience:
I'll admit it. I'm 35. I was diagnosed with my extensive…"
"Alicia- Hi! I'm sorry to hear about your son. Make sure to follow up with the doctors because the difference between an AVM and a hemangioma is significant! I've had significant pain, but I am a rare few on this site, all I know of Dr.…"
"Hi Donna! What a powerful story!
My philosophy in my treatment has always been the same thing:
Stay where you're comfortable. With that being said, I understand the heartbreak of the insurance not participating, and the fact that embolizations…"
Donna Rinkenberger left a comment for Melinda"Hi Melinda. I joined up with AVMSurvivors.org yesterday. I am my daughter's advocate at this time because she can't really sit very well to email. She is also in a place where she is timid about talking about her AVM experiences with…"
ModeratorSuzy E left a comment for Melinda
"Hey! We just hammered down a date (March 24 - a Saturday) and time (2pm)for the San Antonio get together at the Hard Rock Cafe on the Riverwalk. I'm coordinating this with Daniel Sadler's Texas get-together in May (thank you Daniel). If…"
ModeratorSuzy E left a comment for Melinda
"Hey there! Just so you know, I'm organizing a get-together for Texas folks that looks like it'll be in the San Antonio area (the other option is Austin). (It's on the main page of the site). Please don't feel like you have to…"
"I unfortunately had problems with rescheduling problems throughout my treatment time with Dr. Mitchell. She has a counterpart, a Dr. Cliff Weiss that may be a good bet too just in case you can't get in to see Dr. Mitchell. Hopkins biggest…"
"I'm from baltimore pauline!!! I just moved. :("
ModeratorBarbara H. commented on Melinda's blog post Another embolism, a big move, and a graduation
"Hi Melissa. Wow...it sounds like you have been very busy. Where in Texas are you? A lot of members live in Houston...Dallas etc.
I seem to recall working with another Flight Attendant whose sister carried this woman's baby to term. I think she…"
Profile Information
- Are you an AVM survivor, a relative, a friend, or a medical professional? (Required)
- AVM Survivor
- When did the AVM bleed or, if there was no bleed, when was the AVM first discovered?
- August 1, 1984
- What is the status of the AVM?
- Active
- How was the AVM treated?
- Other, Embollization
- Describe the AVM (location, size) if you know it.
- Right leg, very large
- Please share your AVM experience. (Discovery, symptoms, treatment, recovery)
- I have been dealing with a high output peripheral AVM for close to 26 years. There are a collection of fistulas that are in my foot, calf, knee, thigh, and pelvis.
- Would you like to recommend a surgeon, therapist, or a hospital?
- Ziv Haskal, University of Maryland Medical Center
Melinda's Blog
Another embolism, a big move, and a graduation
Posted on November 11, 2011 at 6:31pm 1 Comment 0 Likes
So, I defended my dissertation, and while I'm still finishing my thesis, I have made the half country move to Texas. While I am ecstatic to be with my husband in the same house for the 1st time in 3 years (it's kind of a long story), the move was hard, and starting over with new doctors, new everything I'm sure will be difficult. It doesn't help that my family is now 1400 miles away. Guess Maryland will always be home.
My embolization before I left was performed by Dr. Ziv Haskal at…
ContinueAnother Birthday, another victory
Posted on October 6, 2011 at 8:45am 5 Comments 0 Likes
My birthday is today.
I won't bore you with the details that I'm old now. But, I will bore you with the details that I've been dealing with a high output periphery AVM for close to 27 years. I wake up in pain everyday, take a bit too much pain medication.
But I wake up everyday. I'm defending my PhD dissertation in two weeks. It's funny, I'll be a doctor then. How cool is that?
Another birthday is another victory. Another battle fought in this war against… Continue
I won't bore you with the details that I'm old now. But, I will bore you with the details that I've been dealing with a high output periphery AVM for close to 27 years. I wake up in pain everyday, take a bit too much pain medication.
But I wake up everyday. I'm defending my PhD dissertation in two weeks. It's funny, I'll be a doctor then. How cool is that?
Another birthday is another victory. Another battle fought in this war against… Continue
Procedure done, more set for the future
Posted on April 11, 2011 at 9:31am 4 Comments 0 Likes
All-
Just wanted to send a quick note and thanks for everyone's well wishes for my procedure last week. I did pretty good! Dr. Haskal at the University of Maryland seems like he knows what's what, and used a thing called Onyx in my pelvis and parts of my upper right leg. More is scheduled for late August just in time for my move to TX and hopefully my PhD graduation!!
I gotta tell you if there's anything I can't say how happy I am that I stuck to my guns about finding…
ContinueComment Wall (29 comments)
- At 7:42am on January 26, 2012, Donna Rinkenberger said…
Hi Melinda. I joined up with AVMSurvivors.org yesterday. I am my daughter's advocate at this time because she can't really sit very well to email. She is also in a place where she is timid about talking about her AVM experiences with others at this point. May I share her story with you as it sounds like you have a similar situation? My daughter and her husband and 3 babies (twins 3, and a 19 mo old live in Wylie, TX. You just moved to TX recently from MD? She found out she had a main AVM in her right buttock after she delivered the twins - don't know whether the hormones or the weight of the twins exascerbated her congenital AVM. Since that time she has had 3 surgeries in Plano by a Vascular Surgeon at the Baylor Heart Hospital where they placed coils and plugs and 3 surgeries by a top Interventional Radiologist in NYC at Lenox Hill Hospital. They have been spaced about 3 months apart and each time she has really gotten worse instead of better. Are you going to have to return intermittently to MD? It must have been hard to leave your doctor you trusted. My daughter has been forced to leave the NYC surgeon who has been doing AVM surgeries for 20 years or so because of her BCBS insurance - they don't participate. They've given her breaks but say no more. Sooo, she has an appt with a Radiologist, Dr. Rivera I believe from Plano, TX but there is no guarantees he will do anything for her. We have contemplated going to Mayo in Rochester, MN. We are not sure what to do as the glue embolizations Dr. Rosen did in NYC don't seem to make a difference- so not sure if Radiation is the next option.
Sorry this is so long. Would you like to correspond? Thank you for listening.
- At 2:01pm on January 18, 2012,
ModeratorSuzy E said… Hey! We just hammered down a date (March 24 - a Saturday) and time (2pm)for the San Antonio get together at the Hard Rock Cafe on the Riverwalk. I'm coordinating this with Daniel Sadler's Texas get-together in May (thank you Daniel). If you can come GREAT. You are more than invited. If you need any special accomodations I'm sure we can arrange that. Just call me (512-695-8707) and we'll make to sure to work something out. Hope you can come! More info if you look at the events listed on the main page.
- At 10:36am on December 11, 2011,
ModeratorSuzy E said… Hey there! Just so you know, I'm organizing a get-together for Texas folks that looks like it'll be in the San Antonio area (the other option is Austin). (It's on the main page of the site). Please don't feel like you have to come...only if you want to. It'll be an opportunity to see other AVMers face-to-face and sometimes that can help a lot. I hope you're doing well. Take care!
- At 11:59pm on November 11, 2011,
ModeratorSuzy E said… Just got this message from Luz Gonzalez and I think it's meant for you. Good luck!
Melinda my english is not very good...if you can,look for Dr. Mawad in Houston..he is the best..my husband just got an enbolization by him...
- At 6:48pm on November 11, 2011,
ModeratorSuzy E said… - Melinda have you looked at Dallas or San Antonio? The founder of this website went to Dallas (IT Southwestern I believe) and said some marvelous things about the doctors there. His name is Ben and his page has some doctor info I'm sure. He's very busy and might not answer you directly but he's way nice and does his best. Good luck and if you have any questions, let me know. Welcome to Texas!
- At 9:29am on June 10, 2011, JD#2 said…
- Melinda, I'm still reading and researching. I came across the name Sally Mitchell. Did she treat you at JH? If so, what was your experience there?
- At 9:06am on June 9, 2011, JD#2 said…
- Thanks again for the info. You're not causing any trouble :) I have looked at Dr. Hull's web page before; he looks very experienced. My question is this . . . it seems that so many more doctors are experienced in brain AVMs. Will a doctor who has primarily worked with brain AVMs know what's best for an AVM in the knee/leg? As I've been learning and researching, I've tended to rule out doctors who work with brain patients. But I'm not sure if my thinking is right in this area.
- At 10:23pm on June 8, 2011, JD#2 said…
- Melinda,
Thank you so much for all of your comments today. Yes, I am much closer to Richmond than Washington D. C. or Maryland, but Washington D. C. or Maryland are a lot closer than Denver, CO! All of the info you gave was very helpful. My son's initials are JD, by the way; I'm his mom. I read all of your comments to my husband tonight and we talked through it all. Some of my nagging concerns are some of the exact things you mentioned. We definitely have a lot to think/pray about. Thank you for taking the time to help. I will let you know if we have more questions, and I'll keep you up to date.
Thank you!
Karen
- At 3:12pm on May 25, 2011, Carla Bauer said…
- Yes the area of the mass is very warm. Still waiting for complete diagnosis but after several tests the doctors have come back to "atypical AVM" now waiting for a pathologist in Boston to offer his opinion on the pathology slides...the good news is that they said it was not cancer, but won't be able to figure out treatment options until they hear from the Boston pathologist...the swelling wen down tremendously after they biopsied it...they said there was a lot of blood clot in there which I think they say is not typical of AVM? I find this site to be very helpful and I am very glad that it exists! Thank you to everyone for all of the information and support.
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My story
Posted by chels925 on June 3, 2012 at 10:37am 0 Comments 0 Likes
Hello everyone. While I do not have a AVM, mine is only a VM. It is in my right cheek. I have been undergoing treatment for it since 2006. My first treatment was in September 2006. I had some complications (I got an infection and went septic). I…
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I moved on ... but I cant escape
Posted by Dansky on June 3, 2012 at 7:15am 0 Comments 0 Likes
The first rupture of my AVM brought me to total shutdown you could say. from normalcy to all of a sudden a twist of life.
I move on ... but I cant escape...
I was at work (luckily I was in office, crowded, people are present, the…
Continue Away for 5 weeks
Posted by ramona777 on June 2, 2012 at 3:51am 2 Comments 0 Likes
Hi to all my newfound friends . may not be online much in the next 5 wks but wanted to say to each and every one of you, many thanks for your welcome, friendship and support. be back soon. If anyone can advise me how to join AVM australia? Thank…
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the appioment went.......
Posted by Celina on May 31, 2012 at 8:59pm 2 Comments 0 Likes
it went good he wants to do a big test on me he has to open the top of my leg then put a tiny cam up my leg into my head i will be put to sleep for it he wants to look at it.
Starting to understand everything...
Posted by Hannahpoppe on May 30, 2012 at 12:45am 3 Comments 0 Likes
Hi everyone!
I'm a new member here...
I got diagnosed with AVM this fall. After having really bad headaches for a long time, I decided to visit the doctor. She made the descision to send me on an x-ray and then they saw a 2cm AVM om…
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Of Seizures
Posted by Jaime G. on May 29, 2012 at 7:32am 1 Comment 0 Likes
I'm being treated for Temporal seizures; simple and complex, aware and absence. The 1st one(went undiagnosed)happened almost 5mos post embolization/craniotomy. In Novemember simple happened 1 or so bi-weekly. This Jan I went inpt for longterm…
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Facebook Feature Supports Organ Donation
Posted by Armando A. on May 28, 2012 at 8:02pm 0 Comments 0 Likes
We never realize the value of organ donation, until we're on the receiving end.…
NUMBNESS
Posted by josh54 on May 28, 2012 at 12:20pm 2 Comments 0 Likes
My AVM was near my right lateral ventricle. It ruptured (very painful) and I had a crainiatomy. After the surgery there were difficulties and I was in a ten day coma. When I awoke the AVM was removed successfully but as a result I have numbness,…
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Coffee in Rockhampton
October 11, 2011 at 6pm to October 10, 2012 at 7pm – Some where with good Coffee
2 Comments 1 Like
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