20 cm AVM VERY NEAR TO VAGINA

Hello,

I'm new at this network, my English is also not very good. I think it would be difficult to understand all the medical terminologie but I will try to understand.

Since 5 years I have been diagnost with AVM , its very near to my vagina and anus. First it was a 5 cm. tumor, it did not hurt and I was not uncomfortable. But since my pregnancy it has been grow and now its 10 cm for 3 years. The doctor told me it would go back at 5 cm when I had delivered the baby but that didn't happend.

The main problem is that it is very uncomfortable, its big and I can't sit for a long time because of it. It also makes me very insecure, I hate it because it's so ugly and I don't feel like a woman should want to feel. Sexual pleasure is difficult for my but also for my husband because the tumor is so big.

I have been told that they can't treat me because of the place. It has to many risico's , damage for vagina and anus. They don't want to do surgery on it.

I have asked for medical advice in Americ (only my dossier has beent sent to them, I did not go to Americ) 2 doctors told me the same. No treatment and they told me that I should get pregnant again because than the tumor will maybe grow untill 20 cm!

I'm desperate, I'm only 28 years young and this is not the future I thought I would have. I hope I can get advice over here. Are there more people with an AVM like me? The doctor told me that te most people have AVM at there brains, he has never heard from AVM by the vagina.

Hi Essie,

I’m not sure who the 2 Doctors are that said it is non-treatable (and maybe it is not), but at your young age, I would want to have my case reviewed by some of the top AVM teams in the USA. I am sure there are many competent treatment centers here, but I would pick either Mass General Hospital in Boston, Mass or Stanford University Hospital in Palo Alto, California. I would send it to the head of neurosurgery at each of those places and ask them to please do an initial review of your case to see if some treatment is possible.

I would send them a good cover letter including a detailed medical description of the AVM from your local Doctors, and if any scans are on CD’s, a copy of that also.

Aside from the pain you are suffering, there is a risk, as I’m sure you know, of the AVM rupturing. If that happens, and you are close to medical treatment, the doctors most likely will have to operate or you will die. It will have to be quick, and done by whoever is available. The risks of collateral damage is likely higher than if you were to have treatment done at a calm pace by the best doctors around.

I do wish you well.

Ron, KS

Hi Essie,

I’m so sorry you’re having to go through all this. I whole heartedly agree with what Ron had to say. Take my word for it - keep trying!

For four years I was told that nothing could be done for me, but I kept sending my information to any Dr. I could find who might be able to help, and finally I received a correct diagnosis and treatment for my AVM and aneurysm.

Please, don’t give up hope, and keep sending your information to the top Drs. you can locate.

Hi Ron,

Thank you very much for your reply and your wishes. There were two doctors , one of them was Dr. Hamdan , I forgot the University he works at. The other doctor’s name I cant’ remember, I have their letters at home, when I found it I will write there names over here.
There where treatments like embolisation but all treatments where not without risico’s like necrose.

Can my AVM repture?? I didn’t know that, they only told me that it was now stabil and it was a good tumor.

Do you have names/websites/telephone numbers of doctors who can help me in your country? Do they also help people from Europe? If they can help me I will immediatly book a flight. This is so important for me!

Ron, KS said:

Hi Essie,

I’m not sure who the 2 Doctors are that said it is non-treatable (and maybe it is not), but at your young age, I would want to have my case reviewed by some of the top AVM teams in the USA. I am sure there are many competent treatment centers here, but I would pick either Mass General Hospital in Boston, Mass or Stanford University Hospital in Palo Alto, California. I would send it to the head of neurosurgery at each of those places and ask them to please do an initial review of your case to see if some treatment is possible.

I would send them a good cover letter including a detailed medical description of the AVM from your local Doctors, and if any scans are on CD’s, a copy of that also.

Aside from the pain you are suffering, there is a risk, as I’m sure you know, of the AVM rupturing. If that happens, and you are close to medical treatment, the doctors most likely will have to operate or you will die. It will have to be quick, and done by whoever is available. The risks of collateral damage is likely higher than if you were to have treatment done at a calm pace by the best doctors around.

I do wish you well.

Ron, KS

Hi Tori,

Thank God you’re now oke, may I ask what kind of AVM you had? And did the treatment help you in a way you don’t feel pain anymore and you don’t see a AVM anymore? Can it come back?

Thank you very much for your kind words… I’m glad that there’s a network for us. To bad that I can’'t understand everything.

Tori said:

Hi Essie,

I’m so sorry you’re having to go through all this. I whole heartedly agree with what Ron had to say. Take my word for it - keep trying!

For four years I was told that nothing could be done for me, but I kept sending my information to any Dr. I could find who might be able to help, and finally I received a correct diagnosis and treatment for my AVM and aneurysm.

Please, don’t give up hope, and keep sending your information to the top Drs. you can locate.

You caught me taking a break!

I wouldn’t book a flight just yet; you can send your info to these places and they hopefully will review your case and let you know. The best of the best AVM Doctors know doctors and facilities around the world where you might get the same treatment without going so far.

Mass General’s website for neurosurgery is http://neurosurgery.mgh.harvard.edu/ On the left side, a few items down it says REFERRALS. Didn’t see a spot for self-referrals; Oh, it also says don’t send any records. A letter and diagnosis from your DRs should do. Site says it does about 2,600 operations a year!

Stanford University Neurological site is http://neurosurgery.stanford.edu/ If you go to the referral page and others, you can find out what has to happen. Saw that you can self-refer, but it sounded like it is faster if you have your DR refer you for consultation. Didn’t see a number of operations performed, but it has to be a gob.

Hope this helps. Break over, back to yardwork!

Ron, KS

My AVM was in my spinal cord at the T-1, T-2 level. It was embolized and obliterated. I believe my neurosurgeon said that they can sometimes grow back but that it is rare for that to happen. I also have an aneurysm, in just about the same place as where the AVM was. It was embolized at the same time as the AVM, but it’s still there.

I still have all the pain and deficits I acquired when the rupture occurred, and I developed the same symptoms and pain in a couple of areas where I hadn’t had it before when the embolization was done. But, the most important thing is that I don’t have to be nearly so concerned about the aneurysm rupturing now.

I’m very happy we have the AVM Survivors network too - it feel awful lonesome to have something like this and not know anyone else who knows what it’s like.

By the way Essie - I think your English is very good! Maybe it isn’t as bad as you think. :wink:

Essie said:

Hi Tori,


Thank God you’re now oke, may I ask what kind of AVM you had? And did the treatment help you in a way you don’t feel pain anymore and you don’t see a AVM anymore? Can it come back?



Thank you very much for your kind words… I’m glad that there’s a network for us. To bad that I can’'t understand everything.







Tori said:
Hi Essie,

I’m so sorry you’re having to go through all this. I whole heartedly agree with what Ron had to say. Take my word for it - keep trying!

For four years I was told that nothing could be done for me, but I kept sending my information to any Dr. I could find who might be able to help, and finally I received a correct diagnosis and treatment for my AVM and aneurysm.

Please, don’t give up hope, and keep sending your information to the top Drs. you can locate.

Essie maybe the Erasmus medical center have some good doctors i have been there and only met some neurologists but you can see that the whole neuro district is quite organized. Think the possibility of visiting them they might help you.

Hi Essie-

I too have an extremity AVM (outside the brain) although mine is in my face.

You do really need to see a doctor who is familiar with AVM’s. The docs who told you it would reduce in size again after delivery of the baby was negligent in saying this in my opinion. Pregnancy and other hormones can cause an AVM to increase in size and the chance of it then decreasing on its own is VERY small. It has grown…not just become swollen. Left alone, chances are that it can continue to grow in size. And yes it could hemorrage. I’ve had many episodes of bleeding through the years. The risk associated with these bleeds is different from ones in the brain, because the bleed isn’t contained and damaging brain tissue. But it can be just as devestating. For you, you could bleed externally and lose a significant amount of blood. Some of my bleeding episodes were super scary in the volume and high flow/speed of the bleeding. I imagine you could experience something similar.

We have a few members with Uterine AVM’s. I would suggest talking with them as it sounds like your situations could be similar. Check out Amanda and Tish’s pages and stories. Maybe this will help.

Check out this link for the Vascular Birthmark Foundation. This will take you to the “find a doctor” page for Europe. These docs should be able to offer better advice than whoever you have seen previously. Also, there is an “ask the expert” option on that website which allows you to email directly with some docs who KNOW all about Vascular Malformations.

The two doctors I would recommend for extremity AVM’s are Dr. Wayne Yakes in Colorado, and Dr. Milton Waner in New York. If they can’t treat you, they will KNOW who can. They both treat many extremity AVM’s and are definately sought ofter docs for this condition. There absolutely may be a doc closer there in Europe who knows these and knows how to treat them.

Good luck!

Dear Essie,
I am so sorry you suffer from your very large AVM. Mine is 12.5cm and is located in the left pelvis. It can be felt in my vagina and my gynocologist was the one who found it. I too am in pain everyday and find it difficult to stand or sit for long periods. I am seen by Drs. at Yale New Haven Hospital in New Haven Conneticut, USA. The Dr. I see is Dr. Robert I. White JR. and Dr. Jeffrey Pollak. I have read the other replies you received and I totally agree with all of them, there is help for you, you just have to find the right Drs who can help you. If you wish to contact the Drs. at Yale, go to www.hhtavm.org. The Doctors are listed as well as information about Yale New Haven Hospital. I wish you all the best. Kathy

Hi Kathleen,

Thank you so much for your kind words. I’m not every day at this site because I find it difficult to understand everything and it caust me a lot of time to read and understand everything. My English is so bad ahhahaha!
I’m sorry that you’re AVM is so big and that its painfull. I didn’t now what a pelvis is…still don’t know exactly. But can you see your AVM or is inside you’re body? Have you been treated yet?

I saw the site of Yale and I saw the name of dr. Robert White, he is one of te doctors who gave me advice by seeing my medical dossier and my MRI. My assurance send it to him an another doctor. Both told me that there is a treatment like embolisation and thing like that but that my AVM is in a difficult place. My doctor in Holland does not want to treat me because he said that there are to many risks and I can better live with this. But that is so difficult, how can I live whit that ugly thing by my vagina? I cant swim because I’m ashamed, I cant ride a bycicle because it hurts, I cant sit for to lang… grrrrr I hate it!! Do you know this feeling!?

Bye!
Essie

Kathleen Kahle said:

Dear Essie,
I am so sorry you suffer from your very large AVM. Mine is 12.5cm and is located in the left pelvis. It can be felt in my vagina and my gynocologist was the one who found it. I too am in pain everyday and find it difficult to stand or sit for long periods. I am seen by Drs. at Yale New Haven Hospital in New Haven Conneticut, USA. The Dr. I see is Dr. Robert I. White JR. and Dr. Jeffrey Pollak. I have read the other replies you received and I totally agree with all of them, there is help for you, you just have to find the right Drs who can help you. If you wish to contact the Drs. at Yale, go to www.hhtavm.org. The Doctors are listed as well as information about Yale New Haven Hospital. I wish you all the best. Kathy

This is one of the doctors who saw my medical dossier that my doctor in Holland has sent to him
He told me that I could better not get pregnant again, that was so painfull for me to hear. I really wish for a second pregnancy, because my first pregnancy was not very good.

Does anybody know this doctor?
http://connects.catalyst.harvard.edu/PROFILES/ProfileDetails.aspx?Person=ADH3

Hi Essie

I have not heard of a AVM in the vagina before you are the first. My heart goes out to you and I hope you can get the answers you are seeking. Have you sent any type of films (MRI, Cat Scans, etc) to other doctors to evaluate? I know they do embolizations and radiation to shrink and obliterate the size of AVM’s is this even an option for you? Maybe a letter even explaining your stiutation and sending the letter to different surgeons to see if they would be willing to evaluate your case. I am always hear to listen if you need it. I agree never give up hope! xoxox

Hi Lee Ann,

Thank you for your reaction.
My vascular surgeon also told me that this was the first time that he heard about an AVM by the vagina.
My assurance has sent my file to 2 very good doctors in the USA, dr. Hamdan and dr. White. They got my medical file, also my MRI and gave advice.
But my vascular surgeon says that he does not want to do embolisation because the risk of necrosis is big…
Have you got a treatment?

Essie

Lee Ann said:

Hi Essie


I have not heard of a AVM in the vagina before you are the first. My heart goes out to you and I hope you can get the answers you are seeking. Have you sent any type of films (MRI, Cat Scans, etc) to other doctors to evaluate? I know they do embolizations and radiation to shrink and obliterate the size of AVM’s is this even an option for you? Maybe a letter even explaining your stiutation and sending the letter to different surgeons to see if they would be willing to evaluate your case. I am always hear to listen if you need it. I agree never give up hope! xoxox

Hello Essie,
My AVM is inside my lower abdomen and inside my vagina. Dr. White at Yale did 9 embolizations and my AVM is cured. He is excellent and I trust him with my life. His advice is the best.
I also hate my AVM because it makes me not be able to do the things I want because of the pain. Good luck finding treatment. You can use my name when you talk to Dr. White, tell him I recommended you contact him.
Your friend,
Kathy

Essie said:

Hi Kathleen,

Thank you so much for your kind words. I’m not every day at this site because I find it difficult to understand everything and it caust me a lot of time to read and understand everything. My English is so bad ahhahaha!
I’m sorry that you’re AVM is so big and that its painfull. I didn’t now what a pelvis is…still don’t know exactly. But can you see your AVM or is inside you’re body? Have you been treated yet?

I saw the site of Yale and I saw the name of dr. Robert White, he is one of te doctors who gave me advice by seeing my medical dossier and my MRI. My assurance send it to him an another doctor. Both told me that there is a treatment like embolisation and thing like that but that my AVM is in a difficult place. My doctor in Holland does not want to treat me because he said that there are to many risks and I can better live with this. But that is so difficult, how can I live whit that ugly thing by my vagina? I cant swim because I’m ashamed, I cant ride a bycicle because it hurts, I cant sit for to lang… grrrrr I hate it!! Do you know this feeling!?

Bye!
Essie

Kathleen Kahle said:
Dear Essie,
I am so sorry you suffer from your very large AVM. Mine is 12.5cm and is located in the left pelvis. It can be felt in my vagina and my gynocologist was the one who found it. I too am in pain everyday and find it difficult to stand or sit for long periods. I am seen by Drs. at Yale New Haven Hospital in New Haven Conneticut, USA. The Dr. I see is Dr. Robert I. White JR. and Dr. Jeffrey Pollak. I have read the other replies you received and I totally agree with all of them, there is help for you, you just have to find the right Drs who can help you. If you wish to contact the Drs. at Yale, go to www.hhtavm.org. The Doctors are listed as well as information about Yale New Haven Hospital. I wish you all the best. Kathy

My heart goes out to you!! I don’t know what to say as I’m not that familiar with avm’s outside of the brain. I have one in my left parietal lobe. I just want to tell you that you should definitely seek other opinions. There must be a way they can treat it to make you feel more comfortable. I am so sorry you are going through this!!!

(((hugs)))
Rachel

I would also suggest my doctors at the University of Illinois at Chicago. They are the absolute best. It could be because they are my doctors, but I know that the vascular surgeon embolized my AVM in one shot instead of the 2-4 that was in my original treatment plan. All the luck in the world to you and it is fantastic you are taking such a proactive approach to your AVM.