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-   -   Multi-focal Venous Malformation (http://birthmark.org/board/showthread.php?t=197)

Gayle 05-13-2003 08:30 PM

Multi-focal Venous Malformation
 
I am 48 Years old and was born with a venous malformation of the tongue and cheek. I was mis-diagnosed as a child and until 1988 had no real diagnosis, the doctors that I saw had no answers as to what my condition was. In 1988 I was misdiagnosed as having a hemangioma of the tongue and cheek. The plastic surgeon I saw did an angiogram on me. I was told that the technology needed to help me had not been developed yet. I never knew that there were others with my condition until recently. My malformation grew as I did, and seemed to be hormonally related. As a teenager there was only a small area on my tongue that was noticable, with each childbirth I noticed a marked increase in the size and extent of the abnormality. When I went through menapause and a then a hysterectomy, and was prescribed hormone replacement, I had a very fast growth reaction in my tongue and cheek. Little did I know that my throat was also being invaded by the malformation. There is total obstruction of one of my sinus cavities, and my tongue, now invaded all the way down to the back of my throat, has progressed into the vocal cords and larynx. Thanks to this web-site I have finally found Doctors to help with my situation. When I was born little was known of this condition, but with the recent technologies the children that are born today have a wonderful chance to get this taken care of before it becomes life threatening or disfiguring. I have an appointment to see Dr. Waner in July for my first consultation and I am very hopeful that his diagnosis for me will offer a future free of this venous malformation. Good Luck to all of you.

megans mom 07-24-2003 03:54 AM

Re:Multi-focal Venous Malformation
 
I am glad that you were finally able to get a correct diagnosis and hopefully treatment after all those years. My 8 yr old daughter suffers from the same VM's in cheek and tongue. She also has one on her uvula in her throat. I was wondering if you could let me know what treatment Dr W discussed with you. My Dr's in Chicago don't want to do anything at this point because they feel they are not causing her any problems right now, so just wait. Any info would be appreciated. Thank you.

Gayle 07-26-2003 01:22 AM

Re:Multi-focal Venous Malformation
 
I did see Dr. Waner for my scheduled appointment even though I had to go out of my insurance "network". He said that surgery would not be the recommended treatment for my situation. He has developed a laser that will shrink the malformation, and says that he has treated many of these with great success. (This type of venous malformation is the most common) He is the developer of this lazer (He has the patent) and therefore the expert in its use. I am so glad that I made the trip to Arkansas and highly recommend Dr. Waner for any child with a vascular abnormality. He is going to do this in possibly only two surgeries, the first will be Oct 28th, with the second being 6 weeks later. I was told by him that I could live to be 100 with no problems after the surgery. I had seen Dr.'s around my home town that were going to take most of my tongue off and then proceed with a series of surgeries to remove these, I just knew that there had to be other options. I do know that the sooner that you take your child to him the better. These do not get smaller, they grow along with the child, with sudden growth spurts that seem to coincide with stress, and hormonal changes. I do not feel any urgency in my situation because it has been with me all of my life, but I wish that it had been taken care of earlier so it would not have gotten so big. The trip to Little Rock was 1000 anxious miles for me, but after seeing Dr. Waner the relief I felt made every mile worth it. I cried when I saw the small children with their lesions so visible, it is very tramatic for a child to feel different from everyone else. I am so glad that the technology is now available to make their lives normal. It really puts things into perspective when you see the great accomplishments that come out of the Arkansas Childrens Hospital through the eyes of of these little patients.

Nessie 11-05-2003 10:25 PM

Re:Multi-focal Venous Malformation
 
Hello,

I am a 22-year old female. I have a vascular malformation in my cheek. There is nothing on the outside, it's only inside, but it is becoming very noticeable. I am often asked if I had my wisdom teeth out because my face looks really swollen on the left side. I am extremely self-conscious about it because it is the first thing anyone ever notices about me when I meet them. I was told by a doctor 4 years ago that it was a hemangioma, but I am certain it is a vascular malformation because it has grown and wasn't visible at birth. It also goes up under my cheekbone which is why they say it would cause a lot of scarring to remove it. Because they wouldn't be able to remove it from the inside. I am going to go to the vascular anomalies clinic at OHSU in a couple months to see what they have to say about treatment. I really have to have something done for my sanity, but am worried that the only treatment available would we just as disfiguring. Has anyone heard about internal vascular malformations of the face and treatments for them? I guess a laser wouldn't work because it isn't on the outside of my face. I've heard a lot about Dr. Waner on this site. Is he supposedly the most well-known doctor in the field of vascular anomalies? What is he like? Is he approachable? The only doctor I've seen about my VM was not very understanding and sent me screaming in the other direction. Since then I have graduated college and am determined to find a knowledgable and kind doctor in this field. Any input would be valuable. Thanks!

Gayle 11-05-2003 11:34 PM

Re:Multi-focal Venous Malformation
 
I had laser treatment for my venous malformation 8 days ago. I was not sure what to expect but the laser treatment took only 35 minutes in the operating room. The recovery took 6 hours and then I was released to go to the Ronald McDonald house right across the street. I went to see Dr. Waner the next day at his clinic (within walking distance) he wanted me to stay in town another day because I was unable to swallow anything other than ice chips. He didn't want me to dehydrate. (This was the only problem that I had with the procedure.) He said that I could come to the hospital the next day and he would come out to see me between surgeries. I see that his talents are very much in demand and he is always in a hurry so that he won't keep the anxious parents waiting. Most of his patients are small children but he also takes adults, although I felt like the only adult there. He was extremely understanding of emotional issues as well as the health issues. His nurse, Diane, is an angel and he is a very lucky Dr. to have found such a compassionate individual. She took the time to explain what I might encounter in the next few days. Dr. Waner says my malformation has been shrunk by 35% in my first treatment. I will go back for my next treatment in 6-8 weeks. And after that I might expect to go back a final time for the third treatment. My treatment area consisted of my tongue and cheek (inside) You have to realize that before I found Dr. Waner I was facing losing most of my tongue, and the Dr.s had told me that I would have a series of surgeries to remove or strip these malformations from my face and throat. I found out that you cannot successfully remove a venous malformation, it will just come back and probably more aggressively. I absolutely found the best option in my situation. Dr. Waner's diagonosis of your anomaly would dictate the treatment options. I am glad that I didn't settle for less than the foremost experts opinion and treatment and I hope that anyone that might read this will consider that you only have one life and you deserve to have the best treatment available to you. I traveled over 1000 miles one way and will do it again in a few weeks . Although I will always have a venous malformation, I come away knowing that I won't have this huge area of malformed tissue for the rest of my life.

Nessie 11-06-2003 09:14 PM

Re:Multi-focal Venous Malformation
 
Thanks for your response! I am so happy for you that you finally found a solution after so many years. I can't even imagine having to deal with this for that long. I haven't seen the best doctors out there yet, but I almost fear to that I might I learn that there is nothing I can do without looking totally disfigured. I think about how life will be without my VM and act under the assumption that I won't have it much longer. But if I find out there is nothing I can do I am so scared what my outlook on life will come to. I think about it constantly and everythign revolves around my VM. Like the second I step outside and feel wind, the first thing I think about is my VM, and how people will be able to see it when my hair blows. I am sort of able to hide it with my hair, and so I never put it up. I just want to avoid as many questions as possible about it, because every time I'm asked I think about it more.

I'm a little unclear, with your laser treatment, your VM will shrink and not grow back, but it will still be there? Or will you have to go back for more treatment years down the road because it will grow back? So a VM can never be removed completely with surgery or laser treatment? I was told by a plastic surgeon (VMs were not his field, but he seemed to know about them) that lasers can only be used on outer surfaces. Not inside the face. When you say inside, do you mean inside your mouth on the cheek, but not actually inside the cheek? See, I don't think laser treatment would work for me because my VM is deep (I think that's what you'd call it). It's in my face so that you can't see the blood vessels, just a big bulge in my cheek. So I guess it's one plus that you can't see the actual blood vessels, but the bulge is still disfiguring.

Thanks for the info on Dr. Waner. Him being busy is understandable, all I really care about is compassion, and it sounds like he has that. And it's great that he has such a nice nurse. I'm going to see Dr. MacArthur at the Oregon Health and Sciences University Hospital in January (I heard she's good) and I'll see what she has to say and maybe I'll end up seeing Dr. Waner. At least I know about him and could ask her if I think I should see him. Dr. MacArthur also works mostly with kids and sounds like a very compassionate person so I'm pretty excited I found her. But a little nervous too, to finally get closer to the truth about my treatment options. My last doctor was at an HMO that still operated on the notion that as long as it's not causing great health problems leave it alone. But I can't do that any longer, since it's getting bigger. he told me it was a hemangioma and didn't say anything about it getting bigger, so I'm pretty sure he misdiagnosed it. He told me that the surgery would leave a huge scar down my face along my eye, nose and mouth, so that they could pull the skin back and remove it that way. I couldn't believe it when I heard this. I probably felt the way you did when you heard you'd have to lose part of your tongue. I guess that would be worse, but to have such an obvious deformity is so hard. I always think about what bad situations or health problems I'd swap with people for my VM. It just takes away so much confidence and it's hard to live a good life like that.

Is yours really noticeable so that it causes you social issues or does it mostly cause you health problems? See, so far mine hasn't caused me any health problems that I am aware of, but it causes me great emotional trauma. And I feel like being a hermit and never meeting new people.

Okay, this is getting too long. Thank you so much for your understanding. It is so helpful to have found this forum and be able to speak with people who have the same problem. I often feel so alone with this problem so it is comforting to hear that I'm not. Let me know how your treatment goes, and I wish you the best of luck for your future.

Oh yeah, now I'm going to be really scared to have a baby. Because of the hormones affecting VM growth. I didn't know that before reading your post. Good thing I'm no where near having one :D

Gayle 11-07-2003 01:10 PM

Re:Multi-focal Venous Malformation
 
Dr. Waner said that the laser would shrink but not get rid of the VM. I will always have it and there is a possibility that it can start getting larger again, but if it does he can manage it with laser treatment. He has told me that he thought it would never need further treatment after his initial treatments. Mine is noticible from outside of my face by a slight bulging along and under my jawline, and also by the abnormal vein pattern showing on my face. Most of my condition is inside my mouth, where it can be hidden from public scrutiny. My tongue has one large almost "vericose vein -looking " almost covering the entire tongue, on top and underneath. My inside cheek has areas dotted with the same blue to purple colored lesions that range from the size of a quarter to pea size. Since mine is considered multi-focal it would be hard to remove all of the areas, which is what would have to be done in order to completely get rid of it. If it had been confined to one area they could have removed it. I think that you need to get a correct diagnosis before you let anyone do anything to you. I am so glad that you are taking an aggressive approach to your own medical health, after all it is your body. I bought the book that is on this website and have gained a lot of knowledge from it. There are pictures of children with lesions that include deep and superficial components, which is what you have described to me. Some were treated with sclerotherapy for their "slow-flow" malformations. I don't want you to get confused about treatments until you are correctly diagnosed, don't settle for a diagnosis you feel is wrong. When I finally took control of my diagnosis is when I finally found help. Most Doctors aren't very well informed on the latest technologies used to treat these anomolies. There doesn't even seem to be a standardized way to even classify these lesions, so it is very important that you get a correct diagnosis. The treatment of a VM is different from that of a hemangioma. A correct diagnosis should be your first step. There was a fire-fighter in Little Rock for treatment when I was there with the same thing you described. I saw him but didn't talk to him. Now I wish I had, I could let you know what he was having done. Keep your chin up, there is a solution to your problem without scarring. The social stigma is enormous with this because you do feel so alone, just know that you are not alone. You don't see people with this because they don't go out. It is too embarrassing. But there a lot of people out there like us who are still searching for a cure. Good luck!

Lise 11-08-2003 05:40 PM

Re:Multi-focal Venous Malformation
 
Nessie

Do you live in Oregon? I read elsewhere on this site that Dr. Waner would be in Portland this week end. I don't know if it is Portland OR, but I was operated by him last week in Little Rock for an AVM on the lower lip, and based on what I heard and saw then, I would think that it is Portland OR. Maybe you could check with this Foundation. My own experience with Dr. Waner makes me believe that he could see you while he is there. Not only he is a very approachable man, but he is, for example, the only doctor I can phone at his home. He is both competent and compassionate. I felt great great confidence and relief from the moment I talked to him (after many years of anxious searching). My lip is still swollen, but already it looks near normal and it will be soon completely normal!

Good luck!
Lise, Montreal (1425 miles from Little Rock)

CA 11-11-2003 05:22 AM

Re:Multi-focal Venous Malformation
 
How can I get in touch with Dr Waner? Office # or email address would be appreciated. Thanks

Lise 11-11-2003 03:49 PM

Re:Multi-focal Venous Malformation
 
Here is the phone number of the Vascular Anomalies Program, headed by Dr. Waner, at the Arkansas Children's Hospital: 501-364-7546.

Dr. Waner's office number is 501-686-5140. His e-mail address: wanermilton@exchange.uams.edu

It took a couple of months before he called me back when I first wrote to him. I was not there, he left a message on my recording machine asking that I call him back (giving his phone number at home, so I reached him there a few times during the last year(!), but I would not dare giving his personal number). Things would have gone faster for me if I had first sent him photographs of my VM, films of exams (IMR or angiograms). His postal address: Vascular Anomalies Clinic, Arkansas Children's Hospital, 800 Marshal St., Little Rock AR 72202.


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