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Tonya's Story

My experience began in my third trimester of pregnancy. My sister was pregnant at the same time I was, but due two months earlier. I was so swelled at my sister's baby shower that my mother thought she was going to have to take me to the ER. We both made it through.

However, even after my daughter was born, I still was not producing any milk in my breasts and therefore, could not breast feed as I had first anticipated. In fact, even after I had been home for 7 weeks, I was still only getting about 3 ounces from both sides. I still did not know I had Cushings yet.

I began working at a local Casino boat here when my daughter was 2 yrs. old, and I was severely hypoglycemic to the point that I would almost pass out at my tables. So I had to go to the Dr. then...all he ever said was I needed to stop smoking and lose weight. (I gained a total of 64 pounds with the pregnancy...only 10 in the first trimester...the rest came in the last two...and after my seventh month, I was gaining approximately 10 pounds per Dr. visit...and this is when you begin to see him every two weeks to every week).

I only lost my daughter's birthweight after the pregnancy, which was 9 lbs. 2 oz. I still have not lost the fact, after I stopped working on the boats, I gained over 100 pounds in less than 4 months, and did not have an appetite.

When my feet swelled to about three times their normal size, I begged my husband (at the time - he has since left me) to let me go to the Dr. My feet had swelled so badly that the top layer of skin was splitting. He finally allowed me to go.

Naturally, the Dr.s thought I had Conjestive Heart Failure because of my they gave me an EKG and scheduled me for a Stress Test...both of which I passed. He had also put me on a water pill for 2 weeks prior to the Stress Test, and he gave me a menu to right down all I ate for that two weeks. Well, I normally had no appetite anyway, but now I was going to be even more conscious of what I was eating, and everything balanced out to be about 400-500 per day. I reported back to him in two weeks, and with no more than 500 caleries per day and being on a water two weeks time I had GAINED 8 pounds!!! Yes, I gained weight! So now he decides to go a different direction with the testing and does a bunch of bloodwork. I reported backm and still he could find nothing.

I called to schedule another appointment when I felt so horrible I could not even get out of bed. His nurse had the audacity to tell me, "Dr.'s getting tired of running all these tests and having them come back NORMAL!" I was furious! I asked her how the hell she thought I felt...amd reminded her that she witnessed me CRAWLING into his office for these so-called tests. Then I suggested that perhaps "DR." was not running the proper tests?!?!? She scoffed at me but she made the appointment. "DR." must have done his homework that night as well, because when I came back for my appointment, he suggested running the Serum Cortisol test, which was the only test that came back ABNORMAL! AHA!

So he suggests I may have a condition known as Cushings Syndrome. He suggests I see a specialist, who spent the next five months of my life running the same damned Serum Cortisol test. He did do a 24 hour Urine free cortisol as well, but come one...FIVE MONTHS of the same damn test? Then he claims he STILL cannot prove or disprove whether I have Cushings. So he runs this same test AGAIN for three consecutive days this time...and at Christmas time....I was turning in my little brown jug Christmas Eve morning. Can you beleive this man STILL says he cannot prove anything...he said: "Your numbers were on the high side...well high normal on the first day, before beginning the test...they were about 16-18. Then the second day, your numbers rose a bit...not significantly, but they did raise...up to 24 or 25....but the third day is where I am so confused...the third day your numbers rose by another 43 points! I believe I will send you to a specialist I know at the University of Chicago...Dr. Weiss."

So I go...and I meet this Dr. Weiss....awesome guy....and he takes one look at me...and states: "This is Classic Cushings!" I was could he tell by just looking at me? I was told it was because they see so many cases like me (Like hundreds) at the University of Chicago as opposed to here in Indiana who may see a handful. I'm feeling like I'm finally getting somewhere.

SO he puts me in the Research Hospital the following Monday where I have the Petrosal Sinus Sampling as well as a number of Dexamethizone suppression tests. By the time I was able to leave a week later, the Dexamethizone had me feeling GREAT! I addressed this with Dr. Weiss, and he said it was just because I was in hospital and "had my feet up" that I felt so much better. NOT! Not with the nurses coming at me every half-hour to draw blood, I got no rest! And they did this even as I slept!

It all paid off though, because the Petrosal Sinus Sampling determined I did indeed have an 11mm ACTH secreting tumor within the posterior he scheduled me for Transphenoidal Hypophysectomy. As we all know by now, that didn't work...tumor was there too long, it became vascular and acted like an organ, too much blood, surgeon had to stop rather than risj damaging good all sounded good, but it did NOT cure my Cushings!

In fact, about five months later, I was at a follow up appointment with my ENT who noticed I had now also become Hypothyroid! Now they checked my thyroid before I even got far enough along in this whole diagnosis was fine! So the Dr. suggested it was in response to the Transphenoidal surgery...and that most people report with a development of gall stones after that type of surgery, because the bodyd supposedly responds to the sudden frop in Cortisol levels...which is why we have to be "Weened" off of Corticosteroids.

So now I have uncured Cushings as well as Hypothyroid...and I am feeling worse 3 years after surgery than I did before I went in. I had a stupid Endo here in Indiana who stated I didn't need any further surgery or anything...I just needed a "Positive Attitude"! He wanted to just up my dose of Zoloft! I demanded he not just sedate me...or put a band-aid on it...TREAT IT! I told him that when positive attitudes begin to heal biological conditions, to be sure and let me know...and I also asked him how he could stand there and tell me I didn't need surgery without so much as running another MRI? He asked ME when my last MRI was and I guaranteed him it had been at least a year. He looked through my files and stated, "Yeah, it's been a year and a half...I 'think' I'll order another MRI." O said, "You THINK???" He ordered it amd I never went back to him again...

I called Northwestern University Hospital and asked for a doctor who could help me and told my situation. I got an appointment with Dr. Levy...he is wonderful! He assured me that not only do I need some form of surgery, but I need something FAST! He said I only had a smidgeon of room between my tumor and my optic nerve (he even made the symbol with his thumb and forefinger) and he said that we cannot let that grow...not even a fraction of an inch, or you coyuld go blind or even die!

So he gave me my options...repeat Transphenoidal surgery...Radiation Therapy for 30 days, or...Gamma Knife. I opted for Gamma Knife...and finally started to see SOME improvement...albiet very slowly. I actually got to the point where I was feeling pretty good, and I onlyhad about 8 pounds to go until I would be under the 300 mark! I knew the rest would be easy as soon as I was in control.

BUT!...Here comes Cushings again....and the weight is coming back with a vengeance, too. I have already put 35 pounds back on...maybe more once I go back to the Dr. and get weighed again. My pain is returning and I can feel that my adrenals are inflamed....that has to be what's causing the horrendous back pain between my hips...and the docs began testing me again...ran another MRI...and guess what...they find an Annyeurism!!! SO I had to have a very open and invasive surgery for that...and I also have Cushings back again...

Tell me...Does it ever end???????????????????????????????????

Update May 20, 2010

I have tried to post my Bio beofre, but for some reason, I just have never seen it here, so I am re-posting, but it should be considered a NEW post.

My name is Tonya Fotinos, I live in Merrillville, Indiana, which is about 45 minutes east of Chicago. My symptoms actually began at the tender age of 5 years old. I had to wear a bra to Kindergarten-not a training bra, either. I remember the boys snapping my bra straps...not only did that hurt physiacally, but emotionally as well. I was so embarrassed. In addition to the early development of breasts, I also had pubic hair and should have been shaving my legs and underarms at that time, although my parents made me wait until 4th grade. I was long overdue by third grade. My mother DID take me to the doctor, but that was in the 60s, and the doctor simply told her, "Some children simply develop faster than others...let nature take its course. However, if she begins menstruating, please bring her back." I don't know what made doctors believe that menstruation was the only sign of puberty, but this guy certainly thought so. Realistically, if doctors knew then what they do now, that would have been a definite sign to look further and possibly test me for Precocious Puberty. So, because my menstrual cycle began at a normal age, 12, my parents and I were left to believe that everything was OK. And asside from my frequent Asthma outbreaks, it was. I took my fair share of AsthmaTabs back then, which could have been a contributor, however, I'll never know what did, in fact, CAUSE my Cushings besides that of a Pituitary Tumor that was not discovered until 5-6 years after my first child was born. I was 30 years old at the time, though the rest of my symptoms began long before that.

After High School, I was always able to control my weight within 10 pounds. If I started to gain weight, I just lowered my caloric intake and increased my physical activity, and within a few days, I would be back on track. Though, back-on-track even then still meant I was on the larger end of the spectrum weighing normally between 175 and 185 pounds. I was overweight, according to the physical fitness charts, but with all the exercise and activity, I was solid as a rock-HEALTHY! I maintained that weight and remained healthy from the age of 18-30.

It was strange the way I found out I was pregnant, too. In fact, I probably should have not even been able to become pregnant, if Cushings was already an issue. See, I believe that my Cushings was set on by the sudden influx of hormonal production that goes on in a pregnant woman's body during that third trimester of pregnancy. Her body is starting to prepare for the upcoming labor about to take place, so it stars producing higher amount of Adrenal Hormones, including Cortisol, in which to ease pain and reduce swelling during labor. Since I had a tumor, and didn't know it yet, my pituitary tumor was already producing too much of these hormones, especially Cortisol, and when my body started to prepare for labor, I was getting more than a double-dose...and even if my body stopped producing the hormones after I delivered my daughter, the tumor was still producing it even 7 months after I delivered.

I had gained 64 pounds total during my pregnancy, and all but 10 pounds came on in the third trimester. I had only gained 10 pounds before that. I started to swell up so bad that my at my sister's (who was also pregnant at the time with my nephew) baby shower, my mother thought she would have to take me in to the ER I looked so bad. I never thought much about the weight because I was always on the larger side anyway, and here, I had just had a baby, and they always said that losing weight becomes more difficult the older you get and after having kids. So, I just blamed it all on myself and as soon as I ould bend over after having to have an Emergency C-Section and a very difficult labor, I started working out at the Health Club again. I had also had to go back to work when my daughter was only 5 months old because my husband had quit his job...the one with the insurance.

So, I thought that by working full-time and working out after work, I would soon be back to my pre-pregnancy shape. WRONG! I continued gaining weight, and couldn't understand why. So I cut way down on what I was eating. I didn't have much of an appetite anyway, since anything I ate made me feel like I had eaten a ten-course meal. I was eating less than 500 calories per day and my diet consisted of simply rice cakes and grapes. Maybe some plain tuna fish straight from the can or an apple...and I still gained over 100 pounds in less than four months! I kept telling my husband that something was wrong, but he just complained about no insurance since he left his job, and no money to afford a doctor.

When my feet finally swelled up he started to think that maybe there was something wrong. But he still told me that his sister told him her legs swelled like that too when she was on the airplane going to Jerusalem for a vacation and that putting her legs up for a few days helped them go back down. Well, #1, I wasn;t on any airplane, and #2, the swelling never went down after a week straight of putting my feet up. Eventually, the top layer of skin began to split. Finally, he allowed me to go to the doctor. This guy immediately thought Conjestive Heart Failure because of my weight, so he set me up for an EKG and a Stress Test. I passed the Stress at 80% and could have kept going, but he stopped the test at 80%. The EKG showed nothing either. So he put me on Lasix (a water pill) and told me to write down everything I eat on these pages he gave me, and come back in two weeks. I'm guessing, he didn't believe me when I said I wasn't eating. So I came back in two weeks and wrote down every grape, and every rice cake. He weighed me first thing, and asked if I had been taking the Lasix. I told him, yes, every day, and he couldn't believe that I had GAINED 8 pounds.

So he ran more tests. This time on my Thyroid...which also came back normal at that time. His nurse even got rude with me when I had to call back and make another appointment because the top layer of skin on my swollen feet was starting to split. She actually said to me, "Doctor is getting tired of running all these tests and having them come back normal>" As if to say that this was "All In My Head." Little did SHE know that it WAS!" So I told her, "How do you think I feel? You've watched me practically CRAWLING into his office every week, you KNOW there's something wrong! If DOCTOR is tired of running all these tests and having them come back NORMAL, then perhaps he isn't running the right tests!?!?"

So she agreed to make the appointment, and he finally did his research on the Internet or something, because that was when he finally gave me some sort of what he thought was a diagnosis, Cushing's Syndrome, then he said he wanted to run one more test and if that's the only one to come back abnormal, then he was onto something. It DID come back abnormal, and it WAS the ONLY test that did. So he referred me to an Endocrinologist in Munster, Dr. DeKeyser. It was going to take 2-3 months before I could get in to see him, though, but he made the appointment anyway.

In between that time, I had some severe muscle spasms in my neck, and was unable to turn my head. The pain was so severe, I almost had to cancel a family trip to the Museum that day, but I took some Nuprin, and dulled the pain a bit, though not completely. That evening or the next morning, I ended up in the ER with my neck pain. They gave me some muscle relaxers and called this Dr. DeKeyser. When they found out he was booked solid until 3 months down the road, they made me an appointment to see his protegè, Dr. Barowski.

[He] spent the next 5 months running the same damn blood test for the cortisol that the Doctor who sent me to him did. When he still couldn't discern whether I did indeed have Cushings, or no, he decided to run that same test for three days in a row. Finally, he saw something, but still neglected to treat me until he sent me to his colleague in Chicagoi telling me they were much better-equipped there to help me.

So, he made the appointment for me with Dr. Roy Weiss in Chicago. He took one look at me, of course, I was completely naked at the time, but the nurse was ever-present, and after just looking at me, he determined that I was a Classic Case of Cushing's Disease...he then explained that due to the fact that it wasn't drug-related, that I most likely had a tumor somewhere in the body, and it was most likely within the pituitary gland, so he ordered an MRI and CT Scan of my Brain with and without contrast. Lo, and behold, a Pituitary Tumor, bright as day!

What makes these doctors refuse to run tests like this for 6 years or more when they see a patient experiencing symptoms they don't understand. They just kept sending me off to other doctors again and again, until they finally got it right...but I'm still NOT RIGHT!

So, Dr. Weiss asked me if I would be able to be admitted into the Research Hospital for about 4 days so he could run a few more tests. I went in the following Monday, which was Valentine's Day 2000. He did High and Low dose Dexamethazone Suppression Tests, Blood-Glucose Tests (they were drawing blood throughout the day/night every half-hour), and a Petrosal Sinus Sampling (this was like an Angiogram, b ut they actually go up into the brain and administer CRF hormone to "Turn On" your Pituitary Gland. Then they can see how the Pituitary functions are operationg. It also shows them if the tumor is responsible for secreting Pituitary Dependent Hormones, like Cortisol.).

Anyway, I was in the Research Hospital for 4 days. I had to be wheeled to my room because I could barely walk from joint pain, discomfort and fatigue. The day I was released I had not only LOST 13 pounds, but I felt great! I ate like a pig in that hospital, too,. Dr. Weiss made sure of it! I ate more in that four days than I had eaten since my daughter was born 7 years prior. I tried to tell him that it was from the Dexamethazone, but he laughed at me saying it was because I had my feet up and got some rest?!? What rest when they're drawing blood from you all hours of the night, waking you up every half hour? Rest? No, it had to be the Dexamethazone. I asked him again later, and he said that long-term use of Dexamethazone could cause another full set of problems because it's dangerous to the system. I think it's some type of Steroid.

Anyway, they found the tumor, proved it was secreting an excess of ACTH, which was causing all my other Endocrine Glands to overproduce or underproduce, and set me up for surgery in MArch of 2000. I had the Transphenoidal Hypophysectomy performed by Dr. Bryce Weir. I was in surgery for 9 hours, and he said that my tumor had been there for so long that it had become Vascular (meaning it grew its own set of blood vessels and was acting like an organ) and that every time he would cut and try to remove tumor tissue, it would bleed so badly that he couldn't see what he was doing, so he decided to stop after he got what he felt was 2/3 of the tumor.

I think he got even less than that, because not 3 years later, I was back in the hospital for more surgery, only this time, it was Gamma Knife. What happened was, my Thyroid shut off after the first surgery, and my Cushings must have been Cyclic, because the Cortisol levels wouldn't go down like they were supposed to after the first surgeyr, and they had me scheduled for a second surgery the following Monday after having surgery on Wednesday the week before. I was way too weak to go through another surgery that close together, so I'm glad my Cortisol levels finally came down to zero the morning I was scheduled for the second surgery and they let me go home.

So, by the time I had the Gamma Knife, I also had symptoms of Hypothyroid as well...along with all my original symptoms from Cushings, because they never really went away. I had the Gamma Knife Surgery in July of 2003. Gamma Knife Surgery is just like high doses of radiation that they mathematically process so that they can be done all in one day. You may have more than one session, but they do them all in one day, because you haver to be attached to this metal mask that they screw into your skull so that you do not move during the procedure.

The procedure, itself, is almost just like an MRI, no biggie, but when they screw that mask into your head, ouch! It feels like your head is in a vice even though they do numb it first with a few injections of Lydecaine, then they screw four big bolts into your sckull, two in front and two in back. They keep you overnight for observation, basically, nothing else, unless there are complications., but I felt better almost immediately. The next day, I even began menstruating on my own again after not having a regular cycle.

From 1998-2000, I had only had 4 cycles...then fewer even after that...they eventually just stopped, I even had to have the shot that causes you to have a period from my Gyne, the Deprovera shot, and then later, even a D&C. I was so close to getting Endometriosis due to the fact that the lining that wasn't being shed was thickening. Normal was 3 and mine was 15. So Dr, Levy tells me that Gamma Knife, though the least invasive treatment, could take as much as two years for the hormones and the chemicals in my body to regulate so I could get back to normal.

I was feeling great and even went back to work and went back to college to complete my degree. Then my husband suddenly insists he wants a divorce, so I had to relocate on top of all that and uproot my daughter from the only home she ever knew. But in the process, even though I moved while in College and working full-time complete with overtime, I somehow managed to make the Dean's List 4 out of 5 semesters. Instead of one Bachelor's Degree, I received TWO, then I took on a SUmmer job making $12.00 per hour as a Merchandiser, whose company base was out of Chicago. I was almost to the point where I could scale the ladders, once again, when it happened.

I had previously been back to the Endo thinking my Cushng's was back, because I felt that way I called Dr. DeKeyser's office, just to see if I could finally get in to see him, cause I couldn't keep going back and forth to Chicago and work and go to school full-time. He finally saw me in his office and wanted to start re-running all the Cushing's tests again, 24-hour Urine Cortisol Collection, Dexamethazone Suppression, etc., but he started with an MRI.

Unfortunately, he saw some dark spots on the MRI, which indicated possible annyeurisms. After repeating MRI and CT Scans, and having a CT Angiogram, and even having my very first seizure ever while at work waiting for the results, I was back in the hospital again having brain surgery. This one set me way about 10 years or more. I became fatigued all over again, and lost muscle tone again due to lack of use, because I couldn't bend over or lift more than 5 pounds for so long, couldn't work again, etc. And at the time he said I may have an annyeurism, you could have knocked me over with a feather, because I felt GREAT! I had even lost 50 pounds!

And now, I feel like I'm back at square, because even though I completed my degrees and even had surplus, also got my Teaching License, now the Economy decides to take a nose-dive as well, and many schools are dropping Art from their Curriculums, all because of NCLB Act and the ISTEPs. They all want to focus on Academic classes in the schools, because that's all the government wants to pay for. Liuttle do they know that students who have an extra-curricular activity or Liberal Arts class tend to do better in their academic classes, which would, in turn, improve ISTEP scores. But who listens to a Cushie? Anyway, at one point, Dr. Weiss even suggested removing my Adrenal Glands, because he believed my Cushings to be Cyclic, and even now, I'm still not watch one would call 100%. I have some good days, but the bad days still seem to be longer...Email me with any input you might have.

I will add some before and after pics later. I have to find them all...I've hidden most of them (from other people).

Update May 24, 2010

I forgot to mention in my last update that somewhere in the middle of all that, the doctors overlooked the fact that I had become Growth HOrmone Defficient as well. I asked all the doctors I had seen during the past 16 years to check my Growth Hormone because of what Cris had mentioned to me in our correspondence. The doctors laughed at me as if to say, "I'm the one with the Ph.D." and never performed the test. I FINALLY convinced my current Endocrinologist to run the test, and Lo, and Behold: I AM Growth Hormone Defficiant! So, now I'm unsure as to whether my recurring symptoms are from Cyclic CUshings or just the fact that I had also developed Growth Hormone Defficiency and it had gone untreated for so many years. I'll keep you all posted. I'm still trying to get back to full-tilt after that last brain surgery (Annyeurism Clippings).

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