Safe to travel - 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.
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 04-15-2007, 01:29 AM
davden davden is offline
Junior Member
 
Join Date: Apr 2007
Posts: 4
Default Safe to travel

Hello,

I'm new to learning about AVM.

Earlier this month, results from an MRI revealed my 9 year old daughter has AVM of the foot. It's on the side of her big toe. The doctor has scheduled surgery this fall to remove it.

Prior to the diagnosis, we had planned a family trip from Canada to England.

When we spoke to the doctor (plastic surgeon) there seemed to be no concerns regarding travel. He and my child chatted about what she would do on the trip.

Does anyone else have experience travelling with a child who has an AVM? Should we be concerned?

Thanks,

davden
Reply With Quote
  #2  
Old 04-16-2007, 10:07 AM
Donovan Donovan is offline
Junior Member
 
Join Date: Jan 2005
Posts: 23
Default

Hi Davden,
Our daughter has an AVM of her hand. We have just come back from the NOVA conference in Cincinnati and the doctors there told us that if we fly, H should wear a compression garment. We also live in Canada and have family in England. Who is going to do the surgery? I only ask because after dealing with our daughters problem for several years, we know that anyone suffering from a vascular anomaly must be seen and evaluated by a vascular anomaly expert . There are too many horror stories of doctors attempting to deal with these problems and making everything worse. Unless the doctor is experienced with your daughters problem, I urge you to seek a second opinion before surgery. Don't worry too much about flying. We have flown many times without problems, but I am going to have a compression garment made. If you want any further information, please let me know.
Regards,
Liz.
Reply With Quote
  #3  
Old 04-16-2007, 03:59 PM
davden davden is offline
Junior Member
 
Join Date: Apr 2007
Posts: 4
Default

We're doing research trying to see who we go to for the second opinion. We know so little right now.

The doctor who made the diagnosis and scheduled the surgery is a plastic surgeon. We're meeting with him again later this month (without the child this time) so we can have a more frank discussion about the nature of her condition and the options for treatment. We felt it wasn't wise to have that conversation in the presence of a 9-year-old.

We live in Saskatchewan, which doesn't have a children's hospital. My wife found a reference online to an AVM clinic at the children's hospital in Calgary, Alberta. Does anyone know about this clinic?
Reply With Quote
  #4  
Old 04-16-2007, 04:58 PM
Donovan Donovan is offline
Junior Member
 
Join Date: Jan 2005
Posts: 23
Default

Why don't you e-mail Dr. Brothers? I posted a reply for you on one of your other posts that he had sent to me. I would not let a plastic surgeon touch my daughters AVM unless he had great understanding of vascular anomalies. We are going to see Dr. Josee DuBois in Montreal next week. She is one of the best doctors in Canada. I have found that sometimes to get the help that we need for our children, we have to be prepared to travel. We have already been to Boston and will be prepared to travel to New York for treatment by an expert. AVMs will nearly always grow back because of the nature of the abnormality. If you want to ask me anything,I will only be too pleased to answer your questions. Too many Vascular anomaly patients are treated incorrectly with dire consequences. Don't be in a hurry to accept surgery again without other opinions and options.
Reply With Quote
  #5  
Old 04-16-2007, 07:58 PM
davden davden is offline
Junior Member
 
Join Date: Apr 2007
Posts: 4
Default

Hi Liz,

Thank you for your suggestion. I've sent an e-mail to Dr. Brothers. Thanks also for the other information you've provided.

We have a meeting scheduled later this month with the plastic surgeon who made the initial diagnosis. We're trying to work up a list of questions to see how well he knows his topic and whether he's the person we want. It concerns me that he expects my daughter may need to have surgeries periodically, possibly for the rest of her life. I'd like to know how many times he's operated on an AVM, and what were the outcomes. I'd like to know how frequently he's operated on a child. I'd like him to lay out the other treatment options, and why he recommends surgery.

Can you think of other questions we should be asking? Any and all suggestions are most welcome.

On another topic, how quickly do we need to decide? Have you found that there's pressure to make decisions after they tell you about some of the potential outcomes if AVM's are left untreated?

Good luck to your daughter.

David
(PS -- my wife and I both use this account so sometimes we sign off with our user name davden)

Last edited by davden : 04-16-2007 at 08:06 PM.
Reply With Quote
  #6  
Old 04-16-2007, 08:24 PM
Donovan Donovan is offline
Junior Member
 
Join Date: Jan 2005
Posts: 23
Default

Hi David,
Heather was diagnosed 9 years ago and as yet hasn't had any treatment. The AVM did grow a lot during puberty and she will probably have to start treatment soon, but there isn't a rush to treat unless there are problems such as constant pain or ulceration. Your daughter may need embolization and if there is a nidus in the AVM maybe then there would be room for surgery. Only a Vascular expert would be able to tell you which route to go. I have 'talked' to many people over the years and have asked many questions. I feel comfortable that we have waited because the treatments do carry dangers, but in the hands of an experienced doctor, the outcome should be good. There are not that many experts in the world, and they are certainly few and far between in Canada. How extensive is the AVM? I'll try to think of the questions that I asked Dr. Burrows when we went to Boston. We are still recovering from our visit to the Vascular Conference. Have you been to groups.msn.com? You could pose your questions there also. Hopefully more people will chime in. Let us know what happens. I'm trying to keep a list of Canadians who are having trouble finding the correct help and treatment. There was only one Canadian doctor at the Conference, and she listened to our concerns, so hopefully soon there will be a database for 'Frustrated Canadians" like me. Good luck. Please let us know what happens.
Regards,
Liz.
Reply With Quote
  #7  
Old 04-19-2007, 02:17 PM
davden davden is offline
Junior Member
 
Join Date: Apr 2007
Posts: 4
Default

Hi Liz,

The growth is on the side of her right big toe. There's a second lump about 3 centimetres below it on the bottom of the foot. It has been two years since the surgery (when an orthopedic surgeon thought they were cysts). The one on the toe has grown to the same size it was before. I think the other is perhaps a little smaller, but I'm not sure.

I've sent an e-mail to Dr. Brothers in Alberta with some questions. I've also spoken to the nurse-practitioner at the vascular malformation clinic at Alberta Children's Hospital in Calgary. She told me what they do and it sounds encouraging. Our daughter's doctor has agreed to refer her there.

I think we need second opinions, both on the diagnosis and on treatment options. I've been reading some of the case studies in the literature about AVMs and it's helping. The more you know, the better your decisions.

I haven't been to msn groups yet, but thanks for the tip. Let me know if you need any contact information for your database of frustrated Canadians.

Thanks for your help. All the best to your daughter,

David
Reply With Quote
  #8  
Old 05-02-2007, 03:15 PM
Donovan Donovan is offline
Junior Member
 
Join Date: Jan 2005
Posts: 23
Smile

Hi David,
There is another doctor in Montreal , Dr. Jose Dubois who treats Vascular Malformations. She sees children from all over Canada. As far as treatment is concerned, obviously every case is different, but I know in our daughters case,treatment is suggested soon as she has already gone through puberty and is becoming symptomatic. Hormones play havoc with these problems and we did see a lot of growth during puberty. Earlier treatment would not have changed anything. Even when the AVMs are treated, they will continue to grow , they will never be cured. Is your daughter having any pain or other symptoms? It is not easy to find lots of information on AVMs as they account for less than 5% of Vascular Anomalies. The 5% include vascular,lymphatic and other problems that are not hemangiomas. We did go to Montreal last week for an appointment, ( 11 hours by train). If you want any more info, then let me know.
Liz.
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
Using Temovate for Hemangioma..is it safe? Tessamarie Help and Resources for Hemangiomas 2 01-30-2009 03:40 PM
Help financially with travel momofAddie Port Wine Stain Help and Resources 2 06-10-2008 01:10 AM