Pelvis Vascular Malformation - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > AVM Help > AVM Help and Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 02-24-2008, 03:00 AM
tracymsu tracymsu is offline
Junior Member
 
Join Date: Feb 2008
Posts: 4
Default Pelvis Vascular Malformation

I first noted a small lump on the tip of my right buttock in 2003 when I thought it was some fatty tissue. Then in 2006 may when I was about to deliver my baby I suddenly found out that it grew bigger. After giving birth to the baby it shrinked a little bit. But I think it began to grow and expand last year. It didn't cause any trouble for me so far. But I feel its change and the skin already had discoloration. I feel the skin itchy from time to time.

I went to Henry Ford Hospital in Detroit. The vascular doctor and the radiologist told me that it is very complicated and hardly to be cured but they can do the alcohol embolization to get control of it. The radiologist said he might conduct the embolization from both the vein and artery.The radiologist did list some risk of the alcohol embolization and the most concern is the skin injury as the blood vessel are just under the skin and they are getting thinner now. He also mentioned Dr. Yakes and another doctor in Northwester, Chicago.

I worried about the side effect from the alcohol embolization.
The AVM does not cause any problem for me so far. I am hesitating to take the treatment even though the doctors in Detroit said they think it's necessary to treat it.

I planned to visit Dr. Waner in NY at the end of March to seek his opinion upon my case. but he will not be in the office. Dr. Levitin will be available. But I didn't hear much about him. Should I visit Dr. Levitin?
Reply With Quote
  #2  
Old 02-24-2008, 01:18 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,712
Default

My opinion is that, yes, you should visit Dr Levitin. You can write to him via our Ask the Expert:

http://birthmark.org/experts.php

and ask him any questions you have beforehand.

Missy
Reply With Quote
  #3  
Old 02-24-2008, 05:54 PM
Donovan Donovan is offline
Junior Member
 
Join Date: Jan 2005
Posts: 22
Default

Hi Tracy,
I agree that you should contact Dr. Levitin as well as Dr. Burrows in New York. Our daughter has an AVM in her hand and was seen by Dr. Burrows.Unfortunately as we live in Canada, we could not get treatment from her (politics)!! but Heather is currently receiving treatments in Montreal. We are just across the river from you. I have friends that work at Henry Ford. If you want to contact me, please do. Heaz was diagnosed nearly 10 years ago and only started treatment recently.
Reply With Quote
  #4  
Old 02-25-2008, 05:22 PM
tracymsu tracymsu is offline
Junior Member
 
Join Date: Feb 2008
Posts: 4
Default

I think Dr. Burrows is in Boston instead of NY.

I read about Dr. Berenstein the other day. He is the expert in radiology. I think maybe I should see him instead of Dr. Levitin?

What's your suggestions? Or both?
Reply With Quote
  #5  
Old 02-25-2008, 06:00 PM
Donovan Donovan is offline
Junior Member
 
Join Date: Jan 2005
Posts: 22
Default

Dr. Burrows moved to New York last year to work with Dr. Waner. Contact them both. Here is her e-mail :- PBurrows@CHPNET.org.
Reply With Quote
  #6  
Old 02-27-2008, 10:02 PM
tracymsu tracymsu is offline
Junior Member
 
Join Date: Feb 2008
Posts: 4
Default

I did make an appointment with Dr. Burrows in March. Actually I found out that she is in the same office as Dr. Berenstein. I am still thinking who I should visit. Or even Dr. Levitin?

They are all out-of-network providers. I don't think I will visit all of them to seek opinions. I have chickering insurance and they only cover 80% of the reasonable charge. How will you know what's the reasonable charge for a doctor's visit? And the visit for Dr. Burrows is pretty expensive...$500. Dr. Waner's office asks for $350 per visit.
Reply With Quote
  #7  
Old 02-28-2008, 03:24 AM
Donovan Donovan is offline
Junior Member
 
Join Date: Jan 2005
Posts: 22
Default

If I were to choose one doctor to see, it would be Dr. Burrows.Her fee when she was in Boston was $500. When we saw her in Boston, our Dr. here asked if we had seen any one else. Since she would have been the Dr. to treat our daughter, there was not much point in seeing any of the other doctors. Heather is being treated by an interventional radiologist in Montreal and then will have surgery performed by a plastic surgeon to repair the aneurysms caused by her AVM. She will have to have several treatments first involving alcohol. So far she has had three and the only discomfort that she had was slight swelling afterwards. Good luck with your decision.
Liz.
Reply With Quote
  #8  
Old 07-24-2008, 03:49 PM
emmit995 emmit995 is offline
Junior Member
 
Join Date: Feb 2008
Posts: 1
Default extensive vm

I underwent my first treatment with Dr. Burrows on July 3rd. I am a 39 year old woman who has an extensive vm that goes from my right hip to my foot. My vm is also on my buttock and Dr. Burrows treated this area quite extensively while I was there. The procedure went well, but then I had a setback 2 weeks following the procedure. I was healing fine, then Sat. eve had trouble walking. I became dizzy and almost lost consciousness. My husband was with me and he got me to safety. Later the next morning I ended up passing out two times and had to go to the ER. My blood pressure kept dropping and heart rate spiking. All my hospital tests came out fine-no clots, blood counts normal. It seems as if my central nervous system was not reacting properly. My bp and heartrate stabilized by the next afternoon and I was released from the hospital. I am feeling better again, just a bit slower and still have pain in the area. Despite the setback, I feel the procedure was successful. I still have about 5 more treatments left to go. I highly recommend Dr. Burrows- she is excellent- and I trust/pray by the end of this my leg will be much better.

If anyone has had a similar experience with fainting and low bp/ increased heartrate following a procedure, I would be interested in finding out more about what occurred and any answers your doctors may have had.
Reply With Quote
  #9  
Old 07-25-2008, 12:54 PM
Carrie Utt Carrie Utt is offline
Junior Member
 
Join Date: Jul 2008
Posts: 1
Default Pelvic AVM

Hi Tracy -

My name is Carrie, 32 year old female with a pelvic AVM. At the age of 16, I noticed a large lump growing on my left buttock around the butt bone region and have experience major pain in the hip area, sometimes unable to walk. When I was diagnosed, Dr. Alan Motsumoto at University of Virginia attempted an alcohol embolization in 1998, but the procedure failed and caused extreme pain to the siatic nerve. Dr. Burrows looked at the MRI and refused to treat the AVM. Since then, Yale Medical Center has been my hospital of choice. In 2000, Dr. Robert White and Dr. John Persing performed a nine hour surgery to remove 1/3 of the AVM in the left buttock. For seven years the pain has been minimal. I visited Dr. Pollak at Yale last week for a consult and he has determined that the best treatment is a detergent foam embolization which is 90 percent effective verses the alcohol embolization at 70 percent. There is a team of experts at Yale who specialize in AVMs and who have thier own department for this condition. Dr. Pollak also stated that if they were to remove any more of the AVM located in the muscle of the buttock it would leave me disabled.

At one time, I had considered Dr. Yakes in Colorado. The doctors at Yale feel that the alcohol embolization is not my best option of treatment due to the high flow. I know that it was the most extreme pain I have ever been in.

The doctors specifically stated that having children will increase the growth of the AVM and the possibility of a massive hemmorage. I have been on Depo Provera for eight years. Depo also aids in the amount of hormones in the body to prevent growth.

I understand exactly what you are going through. The pelvic AVM is rare and is not cureable. The only options we have are to manage it. If you are having any pain, I have found that Motrin 800 decrease the swelling and relieve most of my siatic nerve pain. My experience with the doctors with the AVM program at Yale is remarkable. I highly recommend them....no other doctors were willing to perform treatment due to the area of the AVM.

Feel free to contact me at any time, either by phone at 302-614-6070 or by e-mail at cutt@cebridge.net. Best of luck to you and I hope you find the right doctor to treat the AVM.

Carrie
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
What is Microcystic Lymphatic Vascular Malformation aprilone95 Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 4 04-08-2009 11:58 PM
Vascular malformation? momof3mn Help and Resources for Hemangiomas 2 01-12-2009 03:16 AM
Lymphatic malformation w/multiple venous anomalies Tamara051275 Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 0 10-02-2008 04:17 PM
Question-Vein of Galen Malformation Seanette General Resources 0 01-04-2007 07:09 PM
23 yr old female Vascular Malformation or Hemangioma? angelia12 AVM Help and Resources 4 09-25-2005 04:39 AM