I am so sorry to hear about your husband's situation. It is disturbing to me why and how doctors today can deny a person help and medical treatment. I sympathize with both of you, especially because hearing what you have said reminds me so much of what I went through. I couldn't get anyone to listen to me either and all the doctors, from Internist, Neurologist and even a Neurousrgeon told me that mine shouldn't be causing the symptoms I was having. And my cyst takes up over a third of my brain. It is the largest cyst most doctors I have seen for this, have seen in their practice.
The advice I can give is to keep pursuing help. Set your husband up with every doctor you can..make several appointments and whoever can get him in first, see him (or her). If you need to, take him to the Emergency Room. Once a neurosurgeon sees him in the ER, he becomes his patient. He will then be able to see him out of the hospital and in his office. If you are willing to and can travel, Dr. Robert Spetzler in Phoenix, Arizona at the Barrow's Institute is amazing. He was my surgeon and he understands these types of cysts well. Dr. Allan Friedman at Duke University in NC is also amazing. He is my follow doctor now that I live here in NC, and he understands these cysts well too. He listens, and believes.
I hope that you can get help for your husband. Keep pounding the pavement is the best advice because there are doctors out there that do know these cysts, and know what they are capable of. When one says no, there is someone else that will say "yes" to helping your husband. Be insistent with the doctor, whomever he sees, that this was not how he was before. Keep records of his symptoms - a diary, so that you can record his transition, new symptoms etc. That really helped me.
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I am so sorry to hear about your husband's situation. It is disturbing to me why and how doctors today can deny a person help and medical treatment. I sympathize with both of you, especially because hearing what you have said reminds me so much of what I went through. I couldn't get anyone to listen to me either and all the doctors, from Internist, Neurologist and even a Neurousrgeon told me that mine shouldn't be causing the symptoms I was having. And my cyst takes up over a third of my brain. It is the largest cyst most doctors I have seen for this, have seen in their practice.
The advice I can give is to keep pursuing help. Set your husband up with every doctor you can..make several appointments and whoever can get him in first, see him (or her). If you need to, take him to the Emergency Room. Once a neurosurgeon sees him in the ER, he becomes his patient. He will then be able to see him out of the hospital and in his office. If you are willing to and can travel, Dr. Robert Spetzler in Phoenix, Arizona at the Barrow's Institute is amazing. He was my surgeon and he understands these types of cysts well. Dr. Allan Friedman at Duke University in NC is also amazing. He is my follow doctor now that I live here in NC, and he understands these cysts well too. He listens, and believes.
I hope that you can get help for your husband. Keep pounding the pavement is the best advice because there are doctors out there that do know these cysts, and know what they are capable of. When one says no, there is someone else that will say "yes" to helping your husband. Be insistent with the doctor, whomever he sees, that this was not how he was before. Keep records of his symptoms - a diary, so that you can record his transition, new symptoms etc. That really helped me.
Good luck and keep me posted!
February 20, 2010 - 12:33pmMaria
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