New AVM diagnosis for my 7 month old daughter

Hello to all. I’ve just found your group and am very thankful. My daughter is 7 months old and was finally diagnosed today with an AVM “in her ear”–this is all I know, as told to me over the phone by the Interventional Radiologist after her arteriogram. When she was born, I was told she had a Port Wine Stain of ear, scalp and neck. She also has 6 external hemangiomas on her body. Within 2 months the Port Wine Stain covering her ear and neck began to pulsate in the ear and the ear became extremely hot…from what I’d researched, I knew Port Wine Stain’s should not have pain or pulsate–and not one of 3 specialists could determine why it was so hot, so I convinced her vascular plastic surgeon to go forward with an MRI sooner rather than later (he mentioned an MRI might help rule out this thing called an “AVM” after her initial laser treament for the Port Wine Stain–but followed by saying he really didn’t think it was an AVM and for me not to worry).

The MRI resulted in an arteriogram/angiogram (After MRI, Radiologist said he thought she had an AVM and Interventional Radiologist evidentally did not agree, so she ordered arteriogram). After arteriogram, Interventional Radiologist simply told me "yes, it's an AVM and very easy to fix, but I won't fix it now--she's too young--we'll wait until she's about 2." And this was all the information I was given. She did say she would send the arteriogram results to my daughter's vascular plastic surgeon and THEY would discuss her treatment plan.
I tried to schedule a follow up appointment with my daughter's vascular plastic surgeon--my fear of the unknown exploded when the nurse nonchalantly mentioned OVER THE PHONE I needed to "prepare myself that my daughter's ear might be amputated and she'd need a prosthetic ear." Oh, and I can't see the Dr. until July 20th to ask any questions!
Does anyone have any suggestions or resource information for AVM treatments in infants and AVMs in the ear? I only will get a short opportunity to talk to my daughter's vascular plastic surgeon in person this July, and I was hoping you all might suggest a list of questions I should ask to learn the most about my daughter's diagnosis and planned treatments from this plastic surgeon and the Interventional Radiologist who performed the arteriogram--I won't even have the option to meet with her--she's too busy! Hopefully what I learn from this doctor's responses might aid me in getting a thorough second opinion somewhere else??? I'm open to any advice or opinions you all wish to share.
I'm in shock, scared, bewildered, hopeless and hopeful at the same time--thank you all for your posts and everything you've shared--it's very much appreciated and very comforting.
Thanks!
Page, Burkley's Mom:)

Hi Page,

Firstly, welcome to the site, I am glad you have found us!

Judy Cleary is another member of ours, who also has an AVM or (Fisture) in her ear. You should try and get in contact with her about this, although like many of us we are given a lot of different information as many doctors do not have experience with AVM - for your daughter to lose her ear is a bit drastic, firstly would concentrate on what else can be done. As your daughter is so young it makes sense they would wait until she is fully developed and hopefully in that time with enough pray she will be fine like so many of us!

Here are some notes I have though in regards to surgery, they are based on a brain craniotomy but you can easily adjust them to give you a foundation of the types of things to ask. Some or most of them may not apply. But in my case all I can say is get as many opinions as you can, dont opt for the first one, try and find the specialist in the field even if it means travelling, there is help out there its just going with your gut feeling

Planning Brain Surgery
By Kimberly Rueffer

Most people, who go through brain surgery for an AVM or brain aneurysm, do so on an emergency basis. Some are fortunate to discover their AVM or brain aneurysm prior to it becoming a surgical emergency. For those fortunate individual the following is offered as a guide to surgery planning.

Questions to ask the neurosurgeon


Number of arteriovenous malformation and brain aneurysm surgeries they have performed?

Success rate?

Predicted length of actual surgery?

Details of surgical procedure (ie., embolization,craniotomy, metal clips)?

Recovery time expectations?

Anticipated length of hospital stay?

Type of incision ( straight, zig-zag)?

Location of incision?

Recommended units of blood for transfusion?

Date of surgical procedure?

Potential complications?
You can expect the neurosurgeon to review the risks and benefits of the surgery. From the patients point of view the idea of brain surgery can be frightening. Our personalities, intelligence, instincts, capabilities, memories, "who we are" is the area about to be assaulted. How will it affect me? Based on expertise and experience doctors can only predict what you can realistically expect. Each patient and their situation is individual.

What to expect after surgery

Headaches - these are a direct result of trauma to the brain. If an AVM or brain aneurysm ruptures and bleeds into the brain, the blood is very irritating to brain tissue. Often this irritation presents as headaches. Many people continue to complain of headaches many years after surgery.

Itching - most patients complain of itching along the incision, especially prior to the metal staples or sutures being removed. some patients may hear a "clicking" sound at the bone flap site. This will disappear as the edges of the bone heal. It takes 6 months to 1 year for complete healing to occur.

Medications -
Anticonvulsants "to prevent or control seizures". Any trauma to the brain sets the stage for seizure activity.

Steroids, any surgery causes swelling. This swelling is of concern after brain surgery as the brain is housed in bone (unlike your abdomen). Hence there is nowhere for the swelling to "go". Steroids are potent medications which rapidly reduce swelling. It is of the utmost importance to take them exactly as prescribed..

Fatique - this is the most common complaint. After the initial 6 week healing process after surgery people continue to complain that even the slightest activity wears them out.


Depression and anger - AVMs or brain aneurysms can have devastating consequences. They also tend to strike in the prime of life. Life is going along according to plan and suddenly the rug is pulled out from under your feet. Most people will alternate between feelings of anger and depression throughout their recovery. It's perfectly normal.

Transfer to a rehabilitation center - most people have some deficits after brain surgery. It is common after recovery in the hospital to be transferred to a rehabilitation center. There, various professionals; physical therapists, occupational and speech therapists, will work with you to overcome or adapt to these deficits.

Fear - many people have said "I know they operated and removed the avm/ba, but I'm afraid it will happen again." Any twinge or headache can activate this fear. Once again, it's normal to feel this way. The good news is that gradually, with time, the fear lessens.

Numbness at the incision site - perfectly normal. Nerve endings in the scalp have been cut which causes the numb feeling

Dizziness - another common complaint after brain surgery

Recovery - doctors will tell you, "What you are able to regain in a year is what you are left with." Don't believe them! The bulk and most dramatic healing will take place in the first year after surgery, but people continue to improve for many years thereafter. One man who was in a coma for 6 months, and had 3 separate brain surgeries was told "you will never do x, y, or z independently". Four years later not only does he do "x, y, and z" independently, but 13 years later was still noticing improvements. The message in this is never give up hope!


When do I call the doctor?


Fever

Drainage from the incision

Sudden severe headache

Stiff neck
Questions to ask the surgeon on follow up visits:

When may I..


- climb stairs?
- drive?
- shower?
- resume basic activities

Hi Page. I just did a search on here for you...

http://www.avmsurvivors.org/main/search/search?q=ear+avm

I had 3 opinions before I chose my neurosurgeon. First guy told me I was Inop and that I would die the next time it bled. 2nd one said best case scenario...I would walk with a leg brace and a cane the rest of my life. The worst case would be ...I lose cognitive thinking capabilities and be permanently paralyzed on left side of my body. The 3rd one said he could fix it and get me back to work in a year. I chose door #3 as I call it.

There is one more sub-group on here that you may wish to join...

http://www.avmsurvivors.org/group/parentsofavm

Every person on there has a child with an AVM!

I will be praying for you and Burkley!!!!!!!!

Thank you so much Jaszi Jazz! This information in invaluable and I appreciate the details so very much! My thoughts and prayers are with you as well through your journey.

Jaszi Jazz - Brisbane said:

Hi Page,

Firstly, welcome to the site, I am glad you have found us!

Judy Cleary is another member of ours, who also has an AVM or (Fisture) in her ear. You should try and get in contact with her about this, although like many of us we are given a lot of different information as many doctors do not have experience with AVM - for your daughter to lose her ear is a bit drastic, firstly would concentrate on what else can be done. As your daughter is so young it makes sense they would wait until she is fully developed and hopefully in that time with enough pray she will be fine like so many of us!

Here are some notes I have though in regards to surgery, they are based on a brain craniotomy but you can easily adjust them to give you a foundation of the types of things to ask. Some or most of them may not apply. But in my case all I can say is get as many opinions as you can, dont opt for the first one, try and find the specialist in the field even if it means travelling, there is help out there its just going with your gut feeling

Planning Brain Surgery
By Kimberly Rueffer

Most people, who go through brain surgery for an AVM or brain aneurysm, do so on an emergency basis. Some are fortunate to discover their AVM or brain aneurysm prior to it becoming a surgical emergency. For those fortunate individual the following is offered as a guide to surgery planning.

Questions to ask the neurosurgeon


Number of arteriovenous malformation and brain aneurysm surgeries they have performed?

Success rate?

Predicted length of actual surgery?

Details of surgical procedure (ie., embolization,craniotomy, metal clips)?

Recovery time expectations?

Anticipated length of hospital stay?

Type of incision ( straight, zig-zag)?

Location of incision?

Recommended units of blood for transfusion?

Date of surgical procedure?

Potential complications?
You can expect the neurosurgeon to review the risks and benefits of the surgery. From the patients point of view the idea of brain surgery can be frightening. Our personalities, intelligence, instincts, capabilities, memories, "who we are" is the area about to be assaulted. How will it affect me? Based on expertise and experience doctors can only predict what you can realistically expect. Each patient and their situation is individual.

What to expect after surgery

Headaches - these are a direct result of trauma to the brain. If an AVM or brain aneurysm ruptures and bleeds into the brain, the blood is very irritating to brain tissue. Often this irritation presents as headaches. Many people continue to complain of headaches many years after surgery.

Itching - most patients complain of itching along the incision, especially prior to the metal staples or sutures being removed. some patients may hear a "clicking" sound at the bone flap site. This will disappear as the edges of the bone heal. It takes 6 months to 1 year for complete healing to occur.

Medications -
Anticonvulsants "to prevent or control seizures". Any trauma to the brain sets the stage for seizure activity.

Steroids, any surgery causes swelling. This swelling is of concern after brain surgery as the brain is housed in bone (unlike your abdomen). Hence there is nowhere for the swelling to "go". Steroids are potent medications which rapidly reduce swelling. It is of the utmost importance to take them exactly as prescribed..

Fatique - this is the most common complaint. After the initial 6 week healing process after surgery people continue to complain that even the slightest activity wears them out.


Depression and anger - AVMs or brain aneurysms can have devastating consequences. They also tend to strike in the prime of life. Life is going along according to plan and suddenly the rug is pulled out from under your feet. Most people will alternate between feelings of anger and depression throughout their recovery. It's perfectly normal.

Transfer to a rehabilitation center - most people have some deficits after brain surgery. It is common after recovery in the hospital to be transferred to a rehabilitation center. There, various professionals; physical therapists, occupational and speech therapists, will work with you to overcome or adapt to these deficits.

Fear - many people have said "I know they operated and removed the avm/ba, but I'm afraid it will happen again." Any twinge or headache can activate this fear. Once again, it's normal to feel this way. The good news is that gradually, with time, the fear lessens.

Numbness at the incision site - perfectly normal. Nerve endings in the scalp have been cut which causes the numb feeling

Dizziness - another common complaint after brain surgery

Recovery - doctors will tell you, "What you are able to regain in a year is what you are left with." Don't believe them! The bulk and most dramatic healing will take place in the first year after surgery, but people continue to improve for many years thereafter. One man who was in a coma for 6 months, and had 3 separate brain surgeries was told "you will never do x, y, or z independently". Four years later not only does he do "x, y, and z" independently, but 13 years later was still noticing improvements. The message in this is never give up hope!


When do I call the doctor?


Fever

Drainage from the incision

Sudden severe headache

Stiff neck
Questions to ask the surgeon on follow up visits:

When may I..


- climb stairs?
- drive?
- shower?
- resume basic activities

Thank you so much Barbara! I really appreciate the search link. This is all so overwhelming with a new baby. She was a surprise miracle (I'll be 40 this year), so the jitters of "can I do this" with the new baby have taken on an entirely new meaning with the thought of a lifetime illness...I want to raise her without fear and not let this AVM define her...I'm just not sure how I'm going to do that...again, thanks for your support.

Barbara H. said:

Hi Page. I just did a search on here for you...

http://www.avmsurvivors.org/main/search/search?q=ear+avm

I had 3 opinions before I chose my neurosurgeon. First guy told me I was Inop and that I would die the next time it bled. 2nd one said best case scenario...I would walk with a leg brace and a cane the rest of my life. The worst case would be ...I lose cognitive thinking capabilities and be permanently paralyzed on left side of my body. The 3rd one said he could fix it and get me back to work in a year. I chose door #3 as I call it.

There is one more sub-group on here that you may wish to join...

http://www.avmsurvivors.org/group/parentsofavm

Every person on there has a child with an AVM!

I will be praying for you and Burkley!!!!!!!!

Hi Page, and welcome!

I would like to add some not so pleasant news, but I feel you should know about this going in, cuz the DRs might not let you know about it up front.

I used to be convinced that an AVM once obliterated whether by embos, radiation, or surgery, was GONE. But I have since learned that is not always true. If you have an AVM in your brain and you are an adult, once declared "gone", it most likely will not return. (I hate to say Grow Back, cuz that makes it sound like a tumor, and it isn't).

But if you have an extremity AVM OR if you are young, the return of an AVM is much more likely. Whether it is the old AVM regenerating, or a new site of the AVM showing up, I can't say. But from what I've read on here, and confirmed by our neuro team at Stanford, is that NOW when they treat a youth for an AVM, they recommend a followup scan or angio, not sure which, down the road to insure that the AVM is gone gone.

And there are several members on here who have had external AVMs treated and had to be treated for new ones.

We once had a nuero tell us that Chari would be more likely to die from something besides her AVM, so I guess that's another way of looking at it, although sort of a back-handed way.

Hope this helps by adding to your list of questions.

Ron, KS

Hi Page,

The best Center for AVM and other vascular malformations in Children, is in Boston.

Vascular Anomaly Center

Children's Hospital

Boston

Tel. 617-■■■■■■■■

I would give them a phone call.

Yes this is true, however we have to be positive also and look that this may not happen, to go through your life with this on your back will not be easy.

I myself have had an avm all my life (since I was born) and most of us here have had the avm since we were born and it hasn't given us complications, in saying that yes it is wise to know, but please PageB dont let this post scare you!The best way to deal with this is get the specific information you need and then only worry about the now. xx

Ron, Kansas said:

Hi Page, and welcome!

I would like to add some not so pleasant news, but I feel you should know about this going in, cuz the DRs might not let you know about it up front.

I used to be convinced that an AVM once obliterated whether by embos, radiation, or surgery, was GONE. But I have since learned that is not always true. If you have an AVM in your brain and you are an adult, once declared "gone", it most likely will not return. (I hate to say Grow Back, cuz that makes it sound like a tumor, and it isn't).

But if you have an extremity AVM OR if you are young, the return of an AVM is much more likely. Whether it is the old AVM regenerating, or a new site of the AVM showing up, I can't say. But from what I've read on here, and confirmed by our neuro team at Stanford, is that NOW when they treat a youth for an AVM, they recommend a followup scan or angio, not sure which, down the road to insure that the AVM is gone gone.

And there are several members on here who have had external AVMs treated and had to be treated for new ones.

We once had a nuero tell us that Chari would be more likely to die from something besides her AVM, so I guess that's another way of looking at it, although sort of a back-handed way.

Hope this helps by adding to your list of questions.

Ron, KS

PS. CONGRATULATIONS ON gorgeous baby Burkley and WELCOME to your new family xxx



Jaszi Jazz - Brisbane said:

Yes this is true, however we have to be positive also and look that this may not happen, to go through your life with this on your back will not be easy.

I myself have had an avm all my life (since I was born) and most of us here have had the avm since we were born and it hasn't given us complications, in saying that yes it is wise to know, but please PageB dont let this post scare you!The best way to deal with this is get the specific information you need and then only worry about the now. xx

Ron, Kansas said:

Hi Page, and welcome!

I would like to add some not so pleasant news, but I feel you should know about this going in, cuz the DRs might not let you know about it up front.

I used to be convinced that an AVM once obliterated whether by embos, radiation, or surgery, was GONE. But I have since learned that is not always true. If you have an AVM in your brain and you are an adult, once declared "gone", it most likely will not return. (I hate to say Grow Back, cuz that makes it sound like a tumor, and it isn't).

But if you have an extremity AVM OR if you are young, the return of an AVM is much more likely. Whether it is the old AVM regenerating, or a new site of the AVM showing up, I can't say. But from what I've read on here, and confirmed by our neuro team at Stanford, is that NOW when they treat a youth for an AVM, they recommend a followup scan or angio, not sure which, down the road to insure that the AVM is gone gone.

And there are several members on here who have had external AVMs treated and had to be treated for new ones.

We once had a nuero tell us that Chari would be more likely to die from something besides her AVM, so I guess that's another way of looking at it, although sort of a back-handed way.

Hope this helps by adding to your list of questions.

Ron, KS

That nurse was so out of line that my blood is boiling. She really should be reported to her supervisor when she does it again to someone less burdened than you. As a matter of course, mayny patients leave their cell fones on in doctor's office. It is legal in NJ; but you must make the other party aware if the phone tapeing. This nurse has no business being around sick kids and their parents; you are so vulnerable as a mom of an ill child.