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Help my husband is living with vhl had a pheo removed 10 years ago. Its back but cant locate it. Also has a cyst in the brain is living with severe pain in arms and legs. There are days weeks months he physically can not get out of bed!!!! We are looking for meds and treatment options. Very difficult to live like this.
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Dear Teray,
I have had the Pheos three times so far. I will most likely get them again. My first tumor took 4 years to locate, the second took 5. I was in high school with my second one. I was so sick all of the time. I missed so much school and was absent so often, that I became a joke to others. It was a horribly painful time for me physically and emotionally. After my last surgery, I developed severe nerve pain in my arms and legs. I was given many prescriptions, but nothing worked. Finally I began taking 800 mg. of Ibuprophen. It damaged my stomach, but it helped with the pain. I can truly sympathize with you and what you are going through. My mom went through the same thing with me. I was sick for so long before the doctors located the tumor. My mother even began to think I was lying about how sick I was. That was probably the worst part of all of it. To have people think I was lying about how horrible I felt, only made matters worse. I know this is a very difficult time for you. Please be patient, don't give up on your husband. The doctors will find the tumor,... it may just take a while longer. I can truly appreciate your frustration. I also know how hard it is to love someone when they are sick all of the time. I'm sure things are very difficult for you personally. You must feel as though you have had to take on everything yourself because your husband has been ill. It is very easy to become resentful in situations like this. Especially when you have to take on the role of two people. It is important for you to take some time for yourself during this too. I know your husband is suffering, but you are too. Take a few hours and do something you enjoy. Do something for you. This will help you to hold on to your inner peace so you can be stronger for everyone else. If you ever want to talk, I'm always here for you.
M
Thank you for sharing. He has appt july 8 at boston vhl cliniic to look again. Any advice you give before appt will be appreciated. your message was uplifting thank you!
See the article by Dr. Eisenhofer on "Finding elusive pheochromocytomas"
http://www.vhl.org/newsletter/vhl1999/99dapheo.php
Once they have identified the heightened catecholamines in the blood, the next challenge is to find it. CT or MRI are like finding a needle in a haystack. Unless the tumor is on or near the adrenal, it's unlikely they will find it because they will only see that there's something there, and won't know whether it's fat, scar tissue, or pheo.
MIBG finds about 85% of them. The MIBG tracer is taken up by the pheo and it lights up like a lightbulb on the scan.
There is a new test (only available at NIH or UCLA or in Europe) called FDOPA-PET that finds 100% of them. Dr. Michael Yeh talked about it in his presentation to the Anaheim meeting yesterday. So if they still can't find it with an MIBG, that is the only other technique I know of.
Best wishes,
Joyce
Hi Teray,
One week and counting right? I am praying that the doctors can locate your husbands tumor. Please know that I am thinking of you and your family. I'm rooting for you both.
Sincerely,
M
thank all who responded! We are making progress at the vhl clinic At Mass General they are well coordinated. We are waiting for testing. They have not located the pheo Maybe they will on the 15 during the scan. I would recommend Doctor Illyopso and this clinic. Very caring and positive.
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