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Have neurofibromatosis type 1, dilated carotic arteries. What is the required treatment?

Nov 2013
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Practicing since : 1994
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Hi I have Neurofibromatosis Type 1. Two years ago I had a Malignant Neurofibroma removed from my chest the size of an orange by a pediatric neurosurgeon and a cardiac surgeon. Since then I have total MRIs of my brain, chest, thorax and legs where I have hundreds of NFs. Today I went to my oncologist and I was told I have dilation of both of my carotic arteries in my brain. I have to have a MRA 'stat' tomorrow AM. My mother had a 'berry aneurism' at one time. He (the oncologist) wants me to see the pediatric neurosurgeon who did my thoracotomy and I have been having trouble with my larynx as well (I am a Catholic Priest and I have been loosing my voice a lot lately). I am 54 years old and my NF has been getting progressively worse.
I have had several other malignant NFs. I do have a mengioma in my brain that is related to NF-1 and it has been followed by annual MRIs of the brain. This is the first time I have ever been told I have dilated carotic arteries and the oncologist was very concerned and would not elaborate on what would happen but he wanted me to see the doctor right away. I am due to have hand surgery to fix advanced basal cell arthritis in two weeks and the oncologist frowned about that saying that this was more important.
Posted Mon, 6 May 2013 in Brain and Spine
Answered by Dr. Sudhir Kumar 19 minutes later

Thank you for posting your query.

I appreciate the detailed medical details provided by you.

Dilated carotid arteries can be seen in two conditions, aneurysms and ectasia.

If there is aneurysm, then surgery (clipping) may be required.

If it is ectasia, then, most often no treatment is required.

However, it is possible that you have neither of the two conditions on MR angiogram, as on routine MRI, the arteries can not be well seen sometimes.

So, let us wait for the MRA report, before we start worrying about it.

I hope it helps.

Best wishes,
Dr Sudhir Kumar MD DM (Neurology) XXXXXXX Consultant Neurologist
Apollo Hospitals, Hyderabad
Above answer was peer-reviewed by
Follow-up: Have neurofibromatosis type 1, dilated carotic arteries. What is the required treatment? 3 hours later
If it turns out to be a aneurysm, can they use a gamma knife? Two of our local hospitals have gamma knifes. I'd hope not to have open skull surgery. Thanks.
Answered by Dr. Sudhir Kumar 1 hour later
The decision to use gamma knife or open surgery depends on the findings of the MRA. So, let us wait for the reports.

Best wishes,
Dr Sudhir Kumar MD DM
Above answer was peer-reviewed by
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