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  • Anyone diagnosed with Hemangioblastoma?

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    Old 10-18-2016, 09:28 AM   #1
    jojoann
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    Anyone diagnosed with Hemangioblastoma?

    I have a small hemangioblastoma located on c1-c2 with 2 cysts that have formed. It was found on a routine MRI. I am going back in for a follow up scan in 2 weeks and wanted to see if antyone has experienced this. We are at a point where surgery to remove it is probable, and I would love to hear from anyone who may have a similar situation. Thank you!

     
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    Old 10-19-2016, 11:37 AM   #2
    teteri66
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    Re: Anyone diagnosed with Hemangioblastoma?

    I have not experienced this particular issue but would just like to suggest you get several opinions before proceeding with surgery. This can be very complicated and complex surgery and you will want to find the most talented, most experienced neurosurgeon available to you.

    Good luck, and please let us know how you are doing.

     
    Old 11-15-2016, 05:58 AM   #3
    jojoann
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    Re: Anyone diagnosed with Hemangioblastoma?

    Thank you for your response. My follow up MRI showed significant cyst growth and increased swelling in my spine which is what has been causing my pain, numbness and issues with my right arm. Surgery is tomorrow! I am going to MSKCC to Dr. Mark Bilsky whom we feel very comfortable with. Especially since we didnt rush into this a year and a half ago when it was found. But recently the symptoms have become very difficult to manage so we feel it is time. Any advice for me (albeit kinda last minute) are welcome from anyone who knows this surgery. Thank you!

     
    Old 11-15-2016, 06:39 AM   #4
    teteri66
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    Re: Anyone diagnosed with Hemangioblastoma?

    It looks like you will be in excellent hands. The only advice I can offer is to realize that you have done the difficult work of choosing the best surgeon that is available to you. Now you must relax and put your trust in him. If you know any relaxation techniques or deep breathing exercises, now would be a good time to concentrate on them. A calm patient is easier for the surgery personnel to work on. When blood pressure is stable the anesthesiologist has an easier time, which makes the surgery easier all around.

    The other advice I can share is to be prepared to learn more patience than you ever thought possible. Recovery will take longer than you have thought and it cannot be rushed. So my advice is to take things one day at a time...don't waste time looking ahead or back. Just live in the moment ...and before you know it, you will be noticing that you are making progress and feeling better ever day.

    I have only had lumbar spine surgeries so I cannot tell you specifics about what you may want or need to make your throat more comfortable. Hopefully others can offer suggestions. Oh, thought of something. Be sure to have a stool softener on hand and food and drink that will help you to avoid constipation. The anesthetic and pain medications tend to be constipating...so plan ahead....

    Best of luck to you tomorrow and please come back and let us know how things are going.

    Oh...near the top of the page in the box right before the threads begin you will find a "stickie note" entitled "List of things to have on hand...". It gives suggestions for things you may want to have available for your return from hospital.

    Last edited by teteri66; 11-15-2016 at 06:46 AM.

     
    Old 11-15-2016, 06:51 AM   #5
    jojoann
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    Re: Anyone diagnosed with Hemangioblastoma?

    Thank you so much! I will check out that list for sure. Luckily I am a fitness instructor so breathing exercises and meditation are a part of my regular routine. I know the mind controls the body, and attitude, breathing all comes from what we choose to focus on and do. I am highly motivated to get back to my training/teaching but you are right, I know that this will be something different from anything I have ever experienced, and a test of my patience. I will remember your advice for sure.

    Thanks again, I will def check back in once I start getting back in to the swing of things.

     
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