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deb89pict.jpg (77078 bytes)My name is Debra alias DebMV on the bb. I was born on April 6, 1963 along with my twin sister who isn't identical to me. I come from a family of 7 and grew up in Burien which is 5 miles west of SeaTac International airport and 10 miles south of Seattle, Washington. After graduating from the University of Washington (Go Huskies), I got married to Paul and started my career as a buyer at the Boeing company. Like many in my generation, my husband and I decided to wait having children and worked on completing our MBAs while working. My first child, Richard, was born May 14, 1991 and my second child, Joseph, was born Sept 20, 1994. Prior to learning bridge, I enjoyed playing piano, gardening, hiking, and enjoying my children's activities. I still love to run and will probably participate in the 12k annual June run. We live in Maple Valley, 20 miles east of SeaTac Airport, and have an Australian Cattle dog named Sydney, a turtle named Squirtle, and plans to get a hedgehog when I'm healthier. We can't have cats as my husband is allergic to them.

Here is my story first written on the bulletin board on Oct 22, 2000 when I joined. I've since learned a lot and have corrected some of my errors. I had hopped around from GP to OBGYNs which ever could get me in fast and get me what I wanted. I mentioned weight a few times and after the birth of my second child, Joseph, I also requested skin tags to be removed on every visit. During the period after my first child's birth, I began to have toe problems which ultimately required removing two toe nails. These problems disappeared after the tumor was removed. I had showed aging spots to family members who stated they were just aging spots so I quit asking. I had discussed my extra hair growth problems on my neck with a friend who was at a loss of words and I was so embarrassed I never bothered asking anyone again and ended up shaving daily prior to being diagnosed with Cushing's.

I was lucky enough to be diagnosed as having a problem by a physician assistant, Dr. Gross, at Maple Valley Clinic, Seattle WA. She looked like she had just graduated from college, which really depressed me as you know you're getting old when the doctors start looking younger than you, I was 37 at the time. I had gone into there requesting tests on my thyroid as I had been on the Atkins diet (high protein, low carbohydrates) and was diligently taking the ketosis test as he recommends finding no change. Upon his recommendation (in his book) he advised dieters in my situation to see a doctor immediately as this could indicate a major health problem, usually thyroid. BOY WAS HE RIGHT OR WHAT. Although initially I have him to thank, it also was the prodding of my family (they were VERY concerned about the bruising) that finally got me to make an appointment and this astute PA for putting all the 'pieces of the puzzle' together.

Fortunately at this clinic, a checklist was given where you checked off symptoms you've been having. There were about 25 items. Two that I remembered checking was the bruising and sleeping problems (although unlike the rest of you, I loved getting only 4 hours sleep at night, it didn't seem to affect my mental health and allowed me to complete my housework tasks without any interruptions from my three boys, Paul [husband), Richard (now 9), and Joseph (now 6). Upon examination she asked me if I knew anything about Cushing's. Of course I said no and she went told me I had some of the textbook markings of the disease - red swollen face, fatty tissue, abnormal hair growth, easy bruising, sleep problems (no it isn't a problem, hee hee), the acne problem (that I had finally got under control with tetracycline, an oral antibiotic, and two topical creams prescribed to me through a dermatologist-if only, if only, if only he had run the testosterone test then 2 1/2 years prior to this February 2000 apt) and of course, the difficult weight loss problem. She consulted with the MD doctor at the clinic who didn't think it was Cushing's as one of the most common symptom of Cushing's was menstrual disruption (man, of all the luck, why couldn't I have had THAT symptom). However, he did encourage her to run a testosterone test in addition to the thyroid test I had requested. The results came back abnormally high testosterone (94?) and my thyroid was great. She then referred me to and endocrinologist (still can't say that word, I just say gland doctor) who I guess is well known throughout the country for his research, Dr. Leslie Klaff. I was told that other things could also cause these symptoms and that it was more likely Polyps on my ovaries. Not to worry. I think they thought I would go on the net and find out what Cushing's was all about and commit suicide (HA HA) so they were trying to give me a thread of hope. I was too busy to get on the net to explore health problems I wasn't sure I had, so I didn't.

deb picture.jpg (24865 bytes) Dr. Klaff confirmed that PCOS was probably the most likely cause for the high level of testosterone. I mentioned to him that Dr. Gross thought it might be due to Cushing's. He looked up concerned and asked why. I told him about the examination and her findings. He then looked closer at me, noted I had fragile skin (is this a compliment?) and grayness under my arms (gee, I thought this was due to shaving, 5 o'clock shadow thing, you know, not something you talk about even with your husband!). He said he would run some tests, but not to worry (worry about what, why were all these doctors telling me that, duhhhh). He said if the test came back showing PCOS, then the appointment would be short as we had only to choose between three options of treatments. (Early in the examine, we had talked in great length about these treatments as this seemed the most likely condition until I had told him what Dr. Gross' diagnosis was).

The tests came back including the one on the 24-hour urine collection. We had some communication problems (voice messages can be a blessing, but in this case wasn't) and I misunderstood that the appointment was to be 15 minutes. Great! This meant that I had polyps. I knew which treatment I was going to choose (the one that had the greater chance of peeling this weight off). I could take my 5-year old to this SHORT apt and not only that, I can push the apt off to Monday, since that was my day off on a 4-10 workweek schedule.

I was escorted into the room and was asked by the nurse if I had had time to read up on Cushing's Disease. Cushing's', no, why???? (PCOS PCOS PCOS, not Cushing's) I guess in the mass of voice messages, one of them must have mentioned the tests indicated I had Cushing's. I said I had no clue as to what Cushing's was about and that she had better give something to read on it real quick if the doctor was under the impression I was to have prior knowledge about this thing.

Dr. Klaff came in and for an hour and half described in detail Cushing's', and the options including the surgery through the nasal passages (you can imagine the look on my 5-year olds face at this! ha ha, so much for the career in the medical field!). I asked if he was sure I had this (thinking I AM GOING TO GET A SECOND OPINION ON THIS, LIKE PRONTO MAN). He stated that the test he had given me shows that anyone over 75 rating had Cushing's, I was at 474 (no, this is NOT a typo, 474). He had said he had never heard of anyone being that high and that I was clear off the charts. (Great, I had always strived to exceed charts, but this was ridiculous!). At this time, I didn't know the charts topped at 200 and most people were well below this.

After one test, it was determined that the tumor (at that time we didn't know there were two tumors hitchhiking a ride) were located on the pituitary gland (took me a long time to get the spelling of that correct, and even longer to say it correctly) and that an MRI was in order (what's that like?, by then I had searched the web and found out information about Cushing's, but still didn't know what an MRI was like). After getting the MRI and gaining an appreciation for what the astronauts must go through, the doctor called with the results. The MRI came back indicating one tumor for sure and the possibility of another tumor. I was sent on my way, with charts in hand, to the University of Washington (Go Huskies!) Medical Hospital (they're sending me to a school for brain surgery!) to see Dr. Silbergeld (the English translation for this German name is SilverGold HA HA) who was renowned in the Northwest area for this type of surgery (nothing but the best for me, as I'm paying extra for insurance to cover the freedom to choose doctors. As it turns out, it assisted me in obtaining preferential treatment on lots of things including an expedited MRI appointment because of the quick, no hassle payments my insurance company gives. I had opted for the premium insurance for my children, not realizing at the time that it would be used for myself).

After another MRI to determine if the second tumor was really there, an appointment was made for May 9, 2000. A Tuesday, as I didn't want my kids to be without me over the weekend. Thursday was my other choice. (After reading the postings about weekend care at the hospital, I am sure GLAD I had children that guided my decision to the correct one!) The second, 1,800 dollar MRI still didn't give absolute certainty that a second tumor was there, so Dr. Silbergeld said he would do the surgery and look for the second one, but that it was probably just some benign blemish (acne on my brain?).

I had a preop appointment where I was told what was going to happen to me in preparation of the surgery and what to expect in the postop room (really appreciated that information as I went through the shakes sometimes experience after operations). The doctor (younger than me again!) was to be part of a team of 5 doctors that would visit me twice a day during my hospital stay (I nicknamed this group the ratpack, it was really funny how they all came in all serious with their surgical coats on! and all younger than me...not so funny).

The surgery went well only 2 1/2 hours. Dr. Silbergeld came out and told me one tumor was the size of a pea (I neglected to get the actual size) and the other one less than half that size.

My stay was four days in the hospital (I HATE hospitals and was determined to be checked out after the first day HA HA HA HA HA HA. Post op recovery was going ok, until I developed a sinus infection, but I did learn of a great homemade 'flushing' solution that I shared with all my friends who have chronic sinus infections (poor things). Back to work after 8 weeks (not making the 4 week goal I had set up for myself) and tired all the time (my car turned into a second bedroom for naps before work and during lunch breaks-got real good at sleeping in weird positions. Why can't work places have a 'sick' room for people like me to rest in? My work recently instituted a 'Mother's room' for pregnant and nursing mothers which is great (why didn't they have this when I was pregnant and nursing (real fun bring those pumps out in the bathroom stalls, I'm sure I raised more than a few eyebrows) but chronic sick people (which includes men) need something too (they'll probably institute that after I'm finished with this thing). I'm sure my work would have allowed me to use the Mother's room (a locked room accessible only by code- don't want any bums using it), but unfortunately I had transferred to a site that didn't even have this option).

In mid July, we discovered I was on 20mg prednisone not the 20 mg hydrocortisol my endo thought I had moved to . He didn't know I hadn't been switched to hydrocorisol. This set my recovery back about 2 months, but at least he admitted to his error. We quickly reduced the meds to 2 mg by end of August. Always with the larger dose in the morning and half the morning dose just before bed. When I got down to 2 mg prednisone in the morning, I no longer took the evening prednisone dosage.

debpassport.jpg (70663 bytes) Five months post surgery, I'm still on Prednisone (the hydorcortisol made me sick) and recently found out I had temporary arthritis brought on by the treatment (I wasn't warned of this-what a shock). My Mother detected my depression and strongly encouraged me to access this site stating others were going through similar problems. Wished I had access to this site earlier (but not too much earlier as some of these stories are scary (ignorance is bliss in my case) and I think I would have had a breakdown just going into surgery).

Currently, I'm on 3 mg prednisone in the morning and my doctor is consulting with a Dr. Cook in Portland to determine other treatments to get my pituitary gland working again.

Update 1/07/2001: I'm currently on 1mg prednisone every other day.

Update 3/31/2001: I'm currently on 1mg prednisone every 7 days. I started this about a month ago.

The Surgery.

The surgery is about 4 hours long. Most people don't remember anything from it. I remember just having to cough so the nurse could pull the ventilator out of my throat. I don't remember any pain from that...just a strange, uncomfortable feeling.

You may experience the shakes when you're in the post-op room as I did. They won't let you go to your room until you've stabilized. The shakes are strange feeling....I kept asking for more and more blankets.

Post-op care. At the hospital, they'll teach you how to flush your nasal passages. Make sure you have them watch you flush your nasal passages as a sinus infection can result if you don't do this adequately. Should you get a sinus infection, like I did, then along with the antibiotics you receive, try the home remedy nasal flush which was the final thing that I used to break through the mess. The nurse suggested I use it after three weeks returning for the same problem. I even had them scope my nasal passages to ensure nothing was left behind. Here is the 'recipe':

Nasal Saline Wash

1 pint water
1/3 tsp baking soda
1/3 tsp salt

Boil water and nasal syringe (I used a baby nasal syringe, but an adult one would be best if you can find it) together to disinfect. Allow everything to cool down. Remove the syringe from the solution and add the baking soda and salt. Mix thoroughly.

Apply solution while in the shower or tub as it is messy especially the first time. Bend over at the waste so your nose is pointing up. Fill the syringe with the solution, insert into one side of nostril and flush until the solution starts to come out the other side. Point the syringe in all directions so the solution can go way up into the sinus passages including under the eyes. Repeat to the same to the other nostril. Do this twice daily or more if desired.

It doesn't hurt. It feels like when you go swimming and the pool water comes running out of your nose, but doesn't hurt as it is not chlorinated.

Also, don't be surprised to feel numbness in your mouth. This is common. It was strange to sip through the straw and not feel anything...like after going to the dentist and having teeth pulled. The feeling was slow to return and my olfactory senses were also affected. I still have numbness in the top two front teeth and can't taste nor smell a hundred percent.

Weaning off Steroids

At 6 months post surgery, I was on 5 mg of Prednisone and the horribly achiness began in the joints. It took me another 6 months to wean down to 1mg. Then another 6 months after that to finally get off the maintenance dose.

To make the final wean, I lengthened the days between doses. Finally, after several two week periods of no Prednisone alternating with Prednisone (probably 2 months worth), my pituitary gland started working and I was able to wean from maintenance dose.

In September 2001 (18 months post op), when my tests showed my system was waking up, I quit taking Prednisone as maintenance, but continued to take it when I was ill. Between 18 months post op and 2 years post op, I continued to feel Addisonian and required Prednisone when I came down with the flu. I would take 5mg Prednisone for about 3 days then wean off of that level over about a week. Soon, I was finding I could fight minor illnesses (like colds) on my own and it seemed my system improved (strengthened) after each battle with an illness. I didn't feel fully back to normal (energy or emotionally) until about 3 years post op. So, recovery is slow, be patient.

Addisonian symptoms for me are stiff joints, queasy stomach, loose stools, and tiredness. Those symptoms vary from person to person. Mary O has a button to push called Adrenal Crisis. You should check it out so that you're aware of when your body has gone too low on Cortisol. It doesn't take much Prednisone to pull you out of the adrenal crisis. For me, I'd go a few hours to make sure my body couldn't pull itself out of the near crisis, then I'd take half of whatever dose I was on and within 2 hours, I was feeling great again. Then, the next day, I'd start the weaning off process again. I found, and my doctor confirmed, that Prednisone have what's called a residual effect. This would mean that I could take 1mg of Prednisone, and it would last 3 days before I'd have to take another one. As my endocrine system became stronger and stronger, it started to supplement my body with Cortisol allowing me to lengthen the time in between doses. Everyone's body is different, so the weaning off process will be different for each of you.

The best thing is to stay in tune with your body, recognize the symptoms your body gives for adrenal crisis, and continue to push yourself. When it gets really tough, give yourself a rest with small doses of cortisol replacement boosts. I found that using the roller coaster method of weaning off replacements worked best. For example, when I was going from 5mg down to 4mg a day, I'd go 5 and 4 every other day for a week before going completely down to the 4mg level. I stay on the new level for 2 weeks, then reduce again repeating the roller coaster process. When I hit 3 mg, it became more difficult and I had to go down in 1/2 mg steps. At 1mg of Prednisone, I started to reduce in 1/4 mg steps.

I hope my experience helps others who have difficulty weaning from Prednisone. I've learned from other's on this message board that weaning from Cortef or Hydrocortisone is easier than Prednisone, so try and switch from Prednisone to Cortef if you can or do a combination between the medication. Good Luck!

Blood Serum 8am draw
Date ACTH (9-50) Cortisol (3-30)
Sept 2001 1.5 6.5
October 2001 22.5 8.5
June 2002 17.4 7.5
January 22, 2003 26.8 7.7


Looking forward to all of your biographies!

Thanks!

DebMV (Debra in Maple Valley, and my email address, debmv63@aol.com, has my birth year, 1963 in it)

Update 3/24/2003: It amazes me to think back to where I was two years ago to now. Almost three years ago was my surgery. I continued to run starting about 2 weeks post op. I ran until about 6 months post op where my meds were decreased to below 20mg cortisol (5mg prednisone). The withdrawal symptoms were horrible. I ached in every joint and bone. I couldn't go down stairs forward, but had to turn around and walk backwards. Sometimes, the pain would would be so bad, I'd crawl up the stairs in my home to get to the computer room (see what I went through to be with you guys!!! ). The pain was so bad I thought I suffered from Fibromyalgia. The severest pain latest about 6 months (or from 6 months to about 1 year post op). And I napped all the time.

Still, I wasn't very well off until even at 18 months post op when I finally weaned completely from cortisol replacements. However, with every illnesses came came the the pain. It really hasn't been until 2 1/2 year post op that I feel really normal and well again and pain free. I still need meds when I'm very ill, but other than that, I can handle everything. It feels great to snowboard, run, ski, hike, bicycle, and do everything again.

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