I've been feeling down lately because of my lack of progress with with my PN. I've done my best to manage my symptoms on my own, for the last 10 years, but things have changed in this last year and my pain has ratcheted up considerably. I've been to many doctors, none have been able to help me. My primary doc has no idea what PN is and my UR pain specialist hasn't been any help either. I mean really, I don't get it. None, have even ever examined me, or sent me for tests, recommended an MRI, given me any referrals or done anything to reduce my pain or given me any hope for that matter. For the first time, since I've had PN (10 years+), I feel depressed. I'm in Rochester, NY, which is known for it's excellent hospitals and doctors and yet this is where I'm at, today. The sad part is, I've always been one, to do my own research to find the best answers and to control (as much as possible) my own destiny. But, not this time, not with this disease.
Thanks for listening and my thoughts and prayers go out to all who are suffering with this.
Michael
An open Letter
Re: An open Letter
Hi Michael,
I'm so sorry about your lack of progress on this. It is an incredibly frustrating problem, because so few doctors can treat it. Given that you are in Rochester, NY, you could request an MRI with Dr. Potter. She's right there in Rochester. She is a radiologist who developed an MRI protocol designed to help see pn-related issues. Most MRIs don't show anything, but sometimes they do, and I think the odds of that happening are greatest when using her protocol. So the key would be for your ordering doctor to make clear that you have pn so the clinic uses that protocol and to request that she read it (though maybe she always reads the pelvis MRIs---I don't know). Also, have you seen Dr. Conway? He does pn-surgery and he will do phone consults. You could mail him your MRI results and other records and see if he thinks surgery makes sense for you. Hibner is also excellent, but I don't think he can treat men.
April
I'm so sorry about your lack of progress on this. It is an incredibly frustrating problem, because so few doctors can treat it. Given that you are in Rochester, NY, you could request an MRI with Dr. Potter. She's right there in Rochester. She is a radiologist who developed an MRI protocol designed to help see pn-related issues. Most MRIs don't show anything, but sometimes they do, and I think the odds of that happening are greatest when using her protocol. So the key would be for your ordering doctor to make clear that you have pn so the clinic uses that protocol and to request that she read it (though maybe she always reads the pelvis MRIs---I don't know). Also, have you seen Dr. Conway? He does pn-surgery and he will do phone consults. You could mail him your MRI results and other records and see if he thinks surgery makes sense for you. Hibner is also excellent, but I don't think he can treat men.
April
Re: An open Letter
Hi April,April wrote:Hi Michael,
I'm so sorry about your lack of progress on this. It is an incredibly frustrating problem, because so few doctors can treat it. Given that you are in Rochester, NY, you could request an MRI with Dr. Potter. She's right there in Rochester. She is a radiologist who developed an MRI protocol designed to help see pn-related issues. Most MRIs don't show anything, but sometimes they do, and I think the odds of that happening are greatest when using her protocol. So the key would be for your ordering doctor to make clear that you have pn so the clinic uses that protocol and to request that she read it (though maybe she always reads the pelvis MRIs---I don't know). Also, have you seen Dr. Conway? He does pn-surgery and he will do phone consults. You could mail him your MRI results and other records and see if he thinks surgery makes sense for you. Hibner is also excellent, but I don't think he can treat men.
April
Thank you for your reply and for the referrals. I will contact both of them. In addition to the difficulty in finding a doc that knows about pn, it seams that the medical pain specialists aren't in any hurry to meet with you, either. The idea of surgery scares me, because it seams like any information I read about surgery; there's always this warning that reads "surgery should be your last resort". But, I'm beginning to belief that living with pn is not really living and the risk of surgery is at least a chance at life. April, thank you again for the referrals, it gives me some hope.
Michael
Re: An open Letter
No problem! Keep us posted.
April
April