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-   -   VM in Left Side of Face and Nerve Damage (http://birthmark.org/board/showthread.php?t=2927)

Vanessa 06-20-2008 01:45 AM

VM in Left Side of Face and Nerve Damage
 
I am 27 and I have a venous malformation in the left side of my face; it is mainly in the cheek area, but extends up below my cheek bone to the base of my skull. It is actually not very noticeable right now - it is deep below the surface and only relatively slightly bulges in the cheek area. I have had several sclerotherapy treatments since I first started treatment in 2004. I actually found this forum back in 2004 and it's been a life-saver. I am so thankful to the creators of this website and the VBF.

I have sort of a long story, so I'm not really sure how much information to include here. I was first diagnosed with my VM when I was 19, when all of a sudden my cheek started swelling huge. I didn't even notice there was anything there until that point. The doctor I saw advised me to just leave it alone, and the only treatment option he described was a horrifying surgery that would leave me with a distorted face, including facial paralysis. My VM slowly grew, and when I graduated from college in 2003, I began researching doctors and my options.

Through my internet research, I found Dr. Nesbit at OHSU in Portland, OR, which is where I was living at the time. He's an Interventional Radiologist with great bedside manner, and I highly recommend him. He performed multiple sclerotherapy treatments on my face in 2004-2005. The sclerotherapy reduced the size of my VM to a manageable size, and I was advised to maintain the VM by receiving sclerotherapy every couple years or so, as needed.

Although I was content with the sclerotherapy treatments at the time, I was curious about my option for surgery. I had heard about how great Dr. Waner was on this website, so I set up a consult with Dr. Waner in 2006 to coincide with a trip to New York to visit a friend. I actually saw Dr. Berenstein also. They were both impressed with how the sclerotherapy was working for my VM, and suggested that I stick with the sclerotherapy; however, Dr. Waner said that if ever the sclerotherapy didn't work for me anymore, he could perform a surgery where they would cut along the hairline, as in a facelift surgery, they would temporarily move the nerves out of the way and remove the VM such that it wouldn't grow back. Dr. Waner said that although they were very experienced with this sort of surgery, and there wouldn't be any real noticeable scarring, it was a very involved and invasive surgery, it would take a while to recover, and there was a risk of facial paralysis. With that, they said surgery was a definite possibility for me in the future, but recommended I stay with the sclerotherapy as long as it was "working for me."

Well, I just went back to Dr. Nesbit for another maintenance sclerotherapy treatment in April, and this time my nerves were damaged. It was terrifying! I'd had the treatment so many times without any complication and I felt so confident with Dr. Nesbit. I still think he's great, but something just went wrong, and we're all a little stumped right now. It's been over two months and now the nerves are finally starting to gain their function back. It was an incredibly difficult two months...waiting and not having a guarantee that they would come back. I am SOO GRATEFUL that they are starting to come back.

The first step was to see what my nerves would do, and now that they're coming back, I'm just not sure how to proceed with treatment in the future. I can wait a few years without too much grief because the VM is not too noticeable right now. But now, does this count as sclerotherapy "no longer working for me"? I can't imagine taking the risk with sclerotherapy again after the last two dreadful months, and after a few years I will have to do something again. Right now Dr. Nesbit is not sure what to recommend - we're barely getting out of the nerve healing stage. I will probably seek the opinion of Dr. Waner again and maybe other doctors.

I'm just wondering if anyone has had a similar scare with nerve damage before? Or if anyone has any advice on where to go from here? At this point, it almost seems like sclerotherapy and surgery are equally risky, from the standpoint of nerve damage anyway. I'm curious if Dr. Waner would suggest the surgery now after the unsuccessful sclerotherapy treatment. Dr. Nesbit and his colleague, Dr. Downs (Facial Plastic and Reconstructive Surgeon at OHSU), were still reluctant to suggest surgery for future treatment.

I also wonder what my face would look like after surgery as far as symmetry? I know there will be very minimal scarring and they would take fat from my buttocks to fill the void left my removing the VM, but I guess I need to ask for more information about how it will look exactly. I wonder if it will look better, a little worse or the same...

Although I can wait a few years before treating my VM again, I wanted to start figuring out what I can do next as soon as possible. I look forward to receiving feedback of any kind! I would also be happy to answer any questions about my experience. I would love to be of help to others, if possible.

Thank you! And good luck to all of you.

Vanessa

missy 06-20-2008 01:09 PM

I have nerve damage in the left side of my face from a traumatic case of bells palsy (which is SUPPOSED to be temporary... I've had the after-efffects for five years now).

It took much longer for my nerves there to begin functioning again and I still have troubles with it. It's such an odd feeling... to have the nerves in one side of your face going nuts!

Contact Dr. Waner's office, though. You can certainly revisit the issue of surgery. There's no harm in talking about it. You can also email Dr Levitin though the site, if you haven't already:
http://birthmark.org/experts.php

Take care!

Missy

heidim 08-07-2008 05:01 AM

Nerve Damage
 
Hi - I also have a venous malformation on the left side of my face. I had 3 surgeries in 2006, 2 laser and one sclerotherapy/tissue excision. I experienced some nerve damage to this area that still seems to be healing. Just in the past few months have I been able to lift up the left corner of my mouth to semi smile. I still don't have full feeling in my lip and face area where the tissue was excised. On the bright side, the surgery went well and they were able to remove a large part of the tissue. I do still feel that I am slowly regaining feeling, so I don't think the healing is over.

Back in 1990, I had sclerotherapy when Dr. Berenstein was doing it experimentally at NYU. They were using a different hardening agent at that time, but I experienced nerve damage at that time as well. It took me years to be able to lift up my left eyebrow. But it's pretty much fine now. So I don't think it's always a permanent thing.

I would suggest attending the conference in November where you can schedule a consultation for only 50 bucks (as opposed to 200 or 250). It's worth checking out Drs. Waner and Berenstein once again. I think they do amazing work. Feel free to email me for more info.

Heidi
audaciousred@hotmail.com

SHELLEY&ZACH 08-07-2008 05:07 PM

Vanessa
 
Vanessa,

My son was born with a venous malformation that appeared to be a bruise on the left side of his face. At the age of three it started to grow. We were referred by the Army to Arkansas Children's Hospital. Zachary has been undergoing sclerotherapy and laser treatments to control the growth. The main bulk of his malformation is also in the cheek area. To date he has had four sclero treatments (since 2004). Nerve damage is always a possibility, but so far so good. They told us about surgery (excision) from the beginning, but stated that it would be a last resort. We have not been able to get a successful grasp on the growth and unfortunately, they feel that this is the best option for him right now. He will have this surgery in October. There are a number of benefits and risks. I have the upmost faith in Dr. Buckmiller, and can only pray that everything works out for the best. They said that it can take six to eight months for recovery and for him to regain function and movement on the left side of his face. I am interested to meet and talk to someone who has undergone this type of surgery. Is surgery an option that they have discussed with you? They told me that their goal is to give Zach a more symmetrical appearance, and I guess only time will tell. I will keep you updated on his procedure and recovery if you would like. I would also like to keep in touch and stay updated on how everything works out for you! Have a good day!

SHELLEY&ZACH 08-07-2008 05:09 PM

Heidi,

How long did your excision recovery take?

SHELLEY&ZACH 11-11-2008 07:27 PM

Excision Surgery
 
Heidi,

My son had his first excision surgery in October 08. We set up a CaringBridge website for him.

http://www.caringbridge.org/visit/zacharyh

We would like to get in contact with you and learn more about the experiences you had during recovery. Hope to hear from you!

Shelley

blamb 11-21-2008 06:28 PM

venous malformation
 
My son, who is five, has a vm on the left side of his face including the orbit of his eye. He has had several surgeries, from laser to excisions with Dr. Waner and Berenstein. VM's are what they are...they dont go away and they need management. I never know how well a treatment will come out. The most signifcant one so far with the excesion on his lip. But it is a constant battle. Thank goodness for the docs who have taken this under their care.
Betsy

blamb 11-21-2008 06:33 PM

HEIDI,
How old is your son? Mine is 5. His name is Jeremy. You can see his pics on
msn.venousmalformationsupport.com
Betsy

Tracey Tasker 08-01-2014 07:55 PM

Relief!
 
My son had sclerotherapy on 2nd July. He is 15 he has a vascular malformation and this was his first treatment. He was born with it and instead of reducing in size, it has grown.

Sadly for us, he has suffered nerve damage and this has affected his eyebrow, the inner part of his eye (which he cannot close) and his mouth. He is devastated. What a relief to find this site when I have spent most of the day crying because no-one could guarantee that the movement would return to his face.

I am so reassured by your stories. Thank you all from England.


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