Neuro - Behcet's Basilar Artery blockage?

I have some severe CNS and NB symptoms, I also have had a stroke and several partial strokes over the years. I had a brain scan that found a 50% basilar artery blockage 2 years ago, and ulceration in the circle of wilis. I am told there is nothing that can be done that will not cause extreme risk. I am struggling here, carrying on with life and my work but I am so limited, I feel utterly vile, an avalanche of symptoms to say the least and extreme pain ( I have very high pain tolerance as I never take any pain medicines) . My Rheumatologist wants me to start Humeria? ( after clearance from cancer full, in one month) I was diagnosed with kidney cancer almost two years ago and have just got through major nephrectomy surgery and the symptoms seem worst than ever. Has any one has anything similar? Thank you!

2 Replies

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  • HI,

    I have not had anything similar, but have you gotten A SECOND OPINION?? IF NOT, WHY NOT?

    There IS treatment for the blockage, like opening an artery in the heart. Every "procedure" comes with risks, only YOU can decide if it is worth the risk for you.

    The sooner the better, because the clot continues to grow, that complicates the proceedure and raises the risks.

    I will support what ever you decide, but I hope you will consult with a vascular surgeon immediately. Before you make your dission, base it on all the facts you can get.

    I do have lesions in the circle of Willis. Several neuros said, it will regrow new veins and just go around. So, I hope that is correct.

    I hope my support helps.

    I will support what ever you decide to do. It is your body and only you can decide what is right for you.

    Please, keep in touch, let me know how you are doing. Even if you just want to yell and curse this disease.

    Cindy

  • Thank you Cindy,

    I really am so grateful you took the time to write to me, it does help to find someone who understands.

    Yes, I am seeking someone to talk to about this situation, I did see a neurosurgeon but he felt there was nothing he could do. He told me to go out and "enjoy life! Hum. Not helpful.

    I have only just got through major kidney cancer surgery and so I must wait another two weeks to get the all clear from that and then I am to be put on Humera to help control the Behcets, in hopes that it will lessen the most aggressive symptoms. In the meantime I am not sure who else to see. I shall continue to seek out whomever I can it hopes to get at least some reassurance on the issue.

    I note that my scan showed a vein regrowth in a different direction too, the brain compensates which is a miracle. Were you told those lesions were from the behcets

    Let me know how you are too. It is good to share.

    Amber.

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