Scrotal Lymphedema

One week to Appointment

No this is not really me. It is a stock photo.

No this is not really me. It is a stock photo.

A few months ago, after years of trying to find an answers, I was diagnosed with a rare disorder known as Scrotal Lymphedema (a.k.a Scrotal Elephantitis). After a little confusion I was about to find a doctor that hopefully will be able to help me. Her name is Dr Amy Guise at Froedtert & the Medical College of Wisconsin, I really don’t know much about the doctor other than what is on her online profile, but I do have friends who have gone to Froedtert for help when know other hospital could help them.

The hardest part the last few months has been the wait. I have had a lot of anxiety over what she is going to say. Will she turn me away? Will she tell me that I am now beyond help? Will she have a option, but my insurance will say no? It is all putting me on the edge of going crazy. I have had a lot of sleepless nights.

I have been hoping the the anxiety would get better as the appointment got closer, but now that it is a week away I am really FREAKING OUT !!!!!

| POSTED 11:00 AM

This wait is killing me.

Count Down to Appointment:

For a month now I have been waiting for my appointment at Froedtert & the Medical College of Wisconsin with Dr Amy Guise and I still have a long time to wait. The appointment is not until the afternoon of December 5th, 2018. The wait is driving me crazy. I am not sleeping, my anxiety level is really high about what she will say, and I guess most of all I am scared she will turn me away. | Posted 4:35 am

A little good news for a chance

Froedtert & the Medical College of Wisconsin just called and they have a different doctor that is going to see me in early December. The doctor is Dr Amy Guise and I really know nothing about her other than what I found on the College’s website.

The new appointment is the afternoon of December 5th. I guess I have waited this long to get some real answers so another few months is not that bad. | Posted 10:40 am


Doctor is not an option, but....

I have had almost a dozen phone calls today with the Medical School trying to work this out. As this point looks like that doctor is not an option for this surgery, but they apparently have a doctor that is. I am expecting a call by the end of the week to schedule an appointment, but it will most likely be early next year. They did say they will try to rearrange things to get me in sooner. | Posted 3:36 pm

I may be wasting my time

After multiple phone calls with my doctor's, who keeps insistent that this doctor is the best option and that they have talked to him, I am starting to think I am just being blocked by the Schools gatekeepers. I have been told to try again tomorrow.

I may be wasting my time with this anyway. While my insurance should pay for the surgery they are talking months of hospital recovery and I have already topped out my life time hospital stay days. Oddly thanks to an infection of a wound on the same growth that almost killed me two years ago. As for going to the Mayo I really don't know if that is an option, between travel cost and the fact that it has become very difficult for me to travel.

And to think they say an extremely rare form of an extremely rare disease was a good result of the tests. I'll get through this and I am not going to give up trying. | 4:54pm

Things are not going very well...

It is about 12:30 pm and today did not go very well. The doctor in Wisconsin will not see me. I called this morning and setup an appointment without a problem, but when I called back to see if I could change the appointment, because I could not arrange a ride on the original day, I was told that the doctor will not see me for this disorder. I was told this doctor is one of only two doctors in the country that can help me and now this one is out. The other one is at the Mayo Clinic.

How the hell would I get to the Mayo Clinic!! I was worried about how I was going to handle the drive to Froedtert which is about 64 miles away, the Mayo Clinic is 333 miles away. Right now I really wish I was a drinker.

I really wish this blogging platform let you show the time with your posts, because just having the date can be confusion on a day with multiple posts. If my health was better I would setup my own server. (It’s 2:34 pm)

Results of CT Scan

I have been home from the doctors office for a short time now and I am kind of overwhelmed with what the doctor said and having difficulty try to get my head around what he said. I guess it was not as bad as it could have been, after all it is not a Hernia or a tumor, but I am not sure it is that much better.

The doctor says I have Scrotal Lymphedema (a.k.a Scrotal Elephantitis). Yes, that is Elephantitis has in what the Elephant man had, just a localized version. He did say that there is a possible of a surgical option to remove it, but only a few doctors in the country that can perform the surgery. Luckily one of them is in Wisconsin (Dr Michael Guralnick, MD, FRCSC from Froedtert & the Medical College of Wisconsin). However, the question I have that I can't find an answer for is that that because it is a disease, will everything come back after the surgery.

Do yourself a favor and don't Google Search it. You will lose your lunch.