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AVM Survivors Network

AVM in a cheek


#1

Greetings from mom from Serbia and sorry, my English is not very well .
My 17 year old daughter has AVM in the right cheek, in the muscle. It was discovered when she was 2 years old. She had no symptoms other than mild asymmetry, right cheek was slightly larger than the left.
When she was 8 years old, is a plastic surgeon opens manually and clamped AVM.
With 9 years starting complications, very swish of which she heard in the ear. AVM was 6x6cm big.
Her first partial embolization was in 12.2010. After 3 weeks strart very strong bleeding from her mouth, 2 days after another stronger bleeding. She is lost all the blood from the body, but doctors were very quckly and saved her life. In february 2011. doctors working second embolization with the dire consequences: she can not hear on her right ear, paralisis of the right cheek, bone (ramus mandibule) is removed, scar is 20cm long.
After 3 years, again started complication without bleeding (surgicaly removed 2x2cm AVM).
In december 2015. third time at the same place are appeared AVM.
Now, doctors from Serbia told us to find some other clinic in the world, they do not know what to do with my daughter. You are very lucky because you live in rich country.
I read a lot on the internet, the opinion is very different, but my conclusionis are:
- you must to do the embolization, never ever with long period between them, only 72 hours maximally.
- after that surgical operation, nidus of the AVM must be removed completlly
- the doctors must to be with good expiriance, AVM is very rare disease
- if the doctors work all the best, cosmetic effect will be excellent
- only if your doctor do this, your problem will be gone for permanetlly
Belive me or not I am hear that the best doctors are in India (New Delhi, Military hospital). Here is the link, very intersting article abot the AVM on the face.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2740518/


#2

Hi Quins,

Very sorry to hear about the results of the treatments in Serbia. I can understand how traumatic the conditions can be when you dont have any doctor experienced enough to help. I was in your situtaion two years back. I also looked at the same research paper and got in touch with the doctors in the paper. They weren't very confident of the long term success and suggested to put in effort to find someone more experienced.

Since then i have been receiving treatment with Dr. Wayne Yakes in Denver and it has been very helpful. He does alcohol embolization.

I would also recommend getting in touch with Dr. James Suen. He is one of the best surgeons for AVM.

Hope this helps. Let me know if you have more questions.


#3

Hi Prashant,
Thank you for your answers. Unfortenately, I think that we must to do treatment in Europe, probably in Germany, USA is very expensive for us. I hope, that Germans doctors have a more experienced than Serbian doctors. My child is one and lonely in our country with this problem.
Her Cosmetics problem is a very big, in my head is a lot of different questions without answers.
Money is big problem, if Ministary of health will refuse to pay a treatment, we must to sold our house and we will ask humanitarian help for sick children.
You are very lucky, you have insurance.
We have not enough money, we do not know good doctors and clinics and I hope that you understand how is big our problem and fear.
I wish all the best


#4

Hi Quins,

We're from Russia, my son (10 years old now) has an extensive AVM in his left cheek, temple and neck. I'm so sorry about all your struggles and the pain your daughter has to live with.
We're being treated in the US by Dr Gresham Richter with great outcome, my son is now stable, with no progression or complications. Yes, it does cost a lot, and our country doesn't help us at all, so we had to fundraise, but I don't regret a single penny we spent because this doctor literally saved my son.
If you're thinking about India, I know one Russian guy with facial AVM who's treated at Fortis hospital in Delhi with good outcome for now, his surgery (embolization+resection) was about a month ago. I can provide you with more details if you're interested. It costed him less expensive than in the US but honestly I'm not sure that the doctors there have enough experience with complex AVMs. But this guy is very happy now with the preliminary result.


#5

We also travelled to Germany, but the doctors there confessed that they don't have enough experience with facial AVMs and suggested us to seek treatment in America.


#6

Hi Svetlana,
please send me everything details about your doctor, where is he, way of paymeint, also if you know everything about that boy and operation in India.
Thank you very much
I wish you all the best


#7

Hi Quins

I have avm on the chin, I received surgical treatment in July 2015, my surgeon had to remove the nidus all once in the chin, but not in the bottom right cheek
because it is the small blood vessels or feeder. I was also scared and worried that the avm reappear even my surgeon assured that 99.9 % avm will not be reappear. Tell your daughter, she had to be strong and plenty of praying to God for him to recover completely. She’s just like me. for now, i’m waiting for my upcoming surgery, facial plastuc surgery, will do by Madam Normala, Plastic Surgeon, Hospital Kuala Lumpur, Malaysia.


#8

Please send me every detail about Fortis hospital Delhi and photos of before treatment and after treatment and cost. I am from India Near to Delhi there is 5-6 fortis hospital in Delhi. I want to Dr. Name and address of fortis hospital.