tumor around carotid artery

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tumor around carotid artery

Postby ElaineAllenRob » Fri Mar 31, 2006 1:16 pm

Hello, my name is Elaine. I have a two and a half year old named Trey who has NF1. In addition to have a plexineurofoma on his right side that starts at his neck and goes all the way down his right side, they recently discovered a tumor has formed around his carotid artery. This tumor is inoperable because of its location and they don't know what they are going to do. Chemo is not looking hopeful and the only form that may stop the tumor from growing is still in the testing phase and he is too young for study. My question is, is there anyone out there that has had to deal with a tumor in this area and did they receive any type of treatment for it. Please reply.
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tumor around carotid artery

Postby pmteet » Fri Mar 31, 2006 2:03 pm

</font><blockquote><font size="1" face="Verdana, Helvetica, sans-serif">quote:</font><hr /><font size="2" face="Verdana, Helvetica, sans-serif">Originally posted by ElaineAllenRob:
<strong>Hello, my name is Elaine. I have a two and a half year old named Trey who has NF1. In addition to have a plexineurofoma on his right side that starts at his neck and goes all the way down his right side, they recently discovered a tumor has formed around his carotid artery. This tumor is inoperable because of its location and they don't know what they are going to do. Chemo is not looking hopeful and the only form that may stop the tumor from growing is still in the testing phase and he is too young for study. My question is, is there anyone out there that has had to deal with a tumor in this area and did they receive any type of treatment for it. Please reply.</strong></font><hr /></blockquote><font size="2" face="Verdana, Helvetica, sans-serif">I am not sure if this would be an option.

My daughter Cheyenne's carotid arteries are all but closed. IF the tumor starts to inhibit blood flow, maybe they can preform the same surgery they did on Chey. They basically revascualized her brain. It was a noneventful surgery.

Michelle
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tumor around carotid artery

Postby CoconutsGrandma » Fri Mar 31, 2006 4:14 pm

Hi Elaine,

Has the tumor around the carotid grown recently? I ask because our 14 year old daughter has a tumor wrapped around her carotid artery, extending down to the aortic arch, actually wrapping around the aortic arch. The doctors told us too that it is inoperable, but fortunately the tumors in these areas have not grown very much in the past twelve years.

The protocol for our daughter has been an MRI annually of this area, and an annual echocardiogram with a cardiologist to monitor blood flow. I know how scary it is to know what is there, but hopefully the tumor will be stable, or not grow much. My advice to you is to have it monitored at least on an annual basis.

Becky
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tumor around carotid artery

Postby vester » Fri Mar 31, 2006 5:37 pm

I dont have any advice for you - but just wanted you to know that I really feel for you - I can hear that you are really worried and scared for your baby. Please know that we are all thinking of you and I'll say a prayer for you too.

I'm sorry I dont have any wisdom - I can only offer support...

Vester
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tumor around carotid artery

Postby susannfmum » Sat Apr 01, 2006 11:13 am

Hi Elaine,
How far down the right side does the NF go on Trey?
Amber my daughter has it from her ear to her neck right side also. It is quote "snugly wrapped around jugular and carotid arteries" been told can't operate in that area.
One of my worries is the heart area if it spreads down there, she has never had an MRI beyond her neck.
All along this NF road our surgeons have been reacting - like if it gets in the road of say breathing they will do something, she had breathing issues 18 months ago and had surgery on her neck under her chin and throat to debulk, they didn't go near her main arteries at all.

Susannfmum
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tumor around carotid artery

Postby LisaQ » Sun Apr 02, 2006 2:56 pm

My five year old daughter Meadow has a plexiform in the same spot. We have been to doctors in three different states. No one will touch it because of where it is. The doctors talked about putting in a trach if it compresses her airway, it is also on the airway but not compressing it (thank God). There is a great doctor in Cleveland named Dr. Cohen he is a neurosurgeon and is great. Don't know how far you want to travel but if you want his info I can email it to you. We are waiting and watching very closely. We wish someone would do something. Good luck with everything.
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tumor around carotid artery

Postby quieebaby » Mon Apr 03, 2006 8:12 am

Elaine,
I will put Trey and you on my prayer list and will be praying.
quieebaby

Prayer is the bridge between panic and peace.

The great Physician is always on call.

God never tires of our asking.

Jesus hears even the faintest cry for help.
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tumor around carotid artery

Postby Kimberlee » Mon Apr 03, 2006 8:22 am

Our daughter, Katrina, has had two surgeries on a tumor that runs right along side the cartiod artery. They can never remove the entire tumor because of location. We did do MRI's every year until last year. Her ENT said we can just watch for signs at home since there has been no growth for 5 years.
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