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Jenn's Story

My name is Jenn and I'm 22 years old.

I only officially found out I had cushing's for the past two years but that's because they can't trace it back any farther. I only found out because my roommate came home one day and said she had mono and to go get checked to make sure I didn't have it as well (I had a lot of the symptoms at the time).

While I was telling the doctor what was wrong with me (the tiredness, moodiness, headaches, sudden weight gain, etc) he said that it was probably just stress and that the only thing to explain the sudden weight gain was water retention!!! After going back and complaining time and time again and doing a little internet searching on my own, I asked if it was possible that I had PCOS.

Luckly for me there was a resident at the office that day and asked about all my symptoms and then asked out of no where if I had strech marks on my stomac. I showed her the huge marks that had recently started showing up out of no where. I told her that I was usually about 150 pounds and very active but for some reason couldn't get this weight to go away. I started going to the gym 4 days a week with one of my roommates and still nothing.

She sent me to see an Endo at the hospital and have an MRI done. I guess you could say I was lucky because the tumor was big enough to see it right away. My doctor scheduled a surgery with a very well known neurosurgeon in London and I was to be his last surgery.

I had my first surgery scheduled for May 24, 2007. I was so happy, I would be just finishing my co-op for school and would be in recovery during the summer months and back to school in September. No such luck.

After my first surgery I was going through "recovery" when everything just seemed to be staying the same or getting worse. I was so frustrated. Not only was I gaining more weight, but I was getting more moody and depressed.

I went back to see my doctor just after my 22nd birthday and he told me that the MRI showed that there was still a significant portion of the tumor left that wasn't removed. He said that in rare cases sometimes the tumor can be pushed up and hidden and so the neurosurgeon doesn't get the whole tumor.

So here I was waiting to be scheduled for yet another surgery. I went back to work until the end of October but had to quit because the headaches were getting so bad I was getting sick to my stomac. After hearing that my doctor put me on the urgent list to get my second surgery done on December 12th.

My new neurosurgeon wasn't anything like my first neurosurgeon. He was rude to me and my dad and thought he had all the answers and could do no wrong. I figured, ok he might seem like a jerk, but sometimes those are the best doctors to have because they know what they're doing and have a high success rate.

After a 7 hour surgery they found out a week later that I had a CFS leak and had to do another surgery on December 24th to fix the damage they had accidently done. I had to stay in bed for a week and not move. I ended up finally getting out on December 31.

I had now spent 3 weeks in the hospital fighting with my neurosurgeon because he didn't want to admit that they had screwed up and now my recovery was going to take a lot longer then expected. For almost a week I couldn't walk because I had been in bed for so long that my legs had went to jelly.

At my follow up at the end of January my neurosurgeon didn't even come to see me. He had sent one of his collegues to talk to me and make sure that there wasn't another CFS leak and pretty much said, ok you're not our problem any more!!! I was so mad.

Now I had gone through two surgeries and found out later that my cortosol levels were still way to high. Now my endocronologist is having another MRI done to make sure that the pituitary tumor is completely gone and has scheduled me to have my adrenal glands removed. He feels confident that this will finally be the end of the road for me but told me there still is a chance that I may have to have radiation done on my pituitary gland if the second surgery I had wasn't a success.