Appointment with the Neurosurgeon

On August 12, I had my appointment with the neurosurgeon at Washington University. My endocrinologist is also up there. The appt. went very well. I was ready for him as well. I had my list of questions and Scott there to back me up. I kept having him read the questions to ask the doctor. I just knew I would forget, or get caught up in the words and not be able to spit them out. Honestly there wasn't even a need for the wonderful list of questions courtesy of Linda P at www.cushings-help.com/lindap-tips.htm . Obviously for my own personal info there was an absolute need for them. Dr. C went straight down the list without me ever pulling it out.



We looked at the MRI (first time I had seen it) and went over the PSS results, the symptoms, and a quick neuro exam which was follow the finger, touch your nose kind of thing. Dr. C went right into "this is what we can do". The surgery is called an endoscopic transsphenoidal resection of the pituitary. By the end of the appt. I had no questions for him, except how soon? And well... here I am 1 DAY awayfrom my surgery.

Transsphenoidal surgery is performed to remove tumors from the pituitary gland, sellar region, and sphenoid sinus of the skull. The surgeon approaches the pituitary through the nose. The surgery can be performed with a microscope or more commonly with an endoscope in a minimally invasive technique. Pituitary tumors cause a variety of hormone problems and can grow to large size, compressing important nerves and arteries at the base of the brain. When this occurs, surgery is needed to remove the tumor, especially when vision is at risk. Tumor removal often reverses endocrine problems and restores normal hormone balance.

What is transsphenoidal surgery?
Transsphenoidal literally means “through the sphenoid sinus.” It is a surgical procedure performed through the nose and sphenoid sinus to remove pituitary tumors (Fig. 1). Transsphenoidal surgery can be performed with a microscope, endoscope, or both. The procedure is often a team effort between neurosurgeons and ear, nose, and throat (ENT) surgeons. A traditional microscopic technique uses a skin incision under the lip and removal of a large portion of the nasal septum so that the surgeon can directly see the area. A minimally invasive technique, called endoscopic endonasal surgery, uses a small incision at the back of the nasal cavity and causes little disruption of the nasal tissues. The ENT surgeon works through the nostrils with a tiny camera and light called an endoscope. In both techniques, bony openings are made in the nasal septum, sphenoid sinus, and sella to reach the pituitary. Once the pituitary is exposed, the neurosurgeon removes the tumor. www.mayfieldclinic.com

I meet with the ENT surgeon on the 26th at 7:30am and then at 2:30 in the afternoon I go for the Stealth MRI and Stealth CT. >>

The Pituitary Gland

Where is the pituitary gland located?



The pituitary is a small, pea-sized gland located at the base of the brain that functions as "the Master Gland."


Why is the pituitary gland so important?

From its lofty position above the rest of the body it sends signals to the thyroid gland, adrenal glands, ovaries and testes, directing them to produce thyroid hormone, cortisol, estrogen, testosterone, and many more. These hormones have dramatic effects on metabolism, blood pressure, sexuality, reproduction, and other vital body functions. In addition, the pituitary gland produces growth hormone for normal development of height and prolactin for milk production.The pituitary is the control center for the endocrine system, which controls all of the hormones produced in the body.

My first ambulance ride...

Ok well last week (Tues. 7/14) I was lucky enough to have my first ride in an ambulance ever! Unfortunately it wasn't all that fun. I woke up that day just fine, just felt really swollen, puffy, but that seems to be the norm for me lately. I was doing ok for a bit, then all of a sudden felt really nauseated and could not stand up straight. I was having alot of pain in my right side and around to my back. I thought it was just backache and really a beginning to a bad low (low cortisol). I tried to soak in a warm bath and um nope that wasn't cuttin' it! I had Hailey bringing me ice water and my blood sugar meter (97 not so bad). I ended up in my bed under the covers with chills and just more pain in my back, I knew it just had something to do with my kidneys. I checked my blood pressure and sure enough it was through the roof! Thank God by this time my mom showed up, she took the bp again manually and it was still to high so she called 911. Well then here I go on my fun ride, woohoo, lol. Gotta keep the humor people or I go a little crazy ;)
The emt (trainee)is trying to put an IV into my hand and I'm telling him at the same time "you are going to have trouble, my veins are a little messed up because of the cushings". Sure enough another emt had to try again in the other hand. Have you ever had a flicking contest for fun with someone? Well that's what it was like, he tied my arm and literally kept flicking the top of my hand and really I couldn't help but laugh and cry at the same time. He finally got it in. They tested the hemoglobin it was right at 13 (a little low) my blood sugar was at 93 and my bp was still high. In the ER at St. Johns things just started to go really slow but seemingly calmer. Again with the IV's though? A nurse came to put yet another in, had to go over the vein prob with her. Got to give her credit, first try she got it, but when it was taken out the darn thing was bent sideways. Anyway, I sat around for a bit with Scott waiting on result form the urine test and sure enough blood in it, so on to the CT to see how big my new friend was. New friend meaning, if you haven't guessed, a kidney stone. Not a very big one (4mmx3mm) but yet another first for me. As for now I'm fine, I'm guessing I passed it. Now I just keep going on dealing with all the other crap dealing with this disease.

My Next Step...

(Alright this blogging thing I'm not so great at so bare with me.) My new endocrinologist has helped me get to where I am now. I have to say, I went into the first appointment well armored. I had Scott (my husband) with me, my binder full of notes and lab results, my picture time line, I was ready. Of course though like the other appointments the brain fog or just forgetfulness sets in. Did I mention the brain fog as a symptom? I am in the middle of sentences, of explaining my symptoms and why I needed a new endo (he was my second and final opinion) and I would just lose my train of thought. By the end of the first appointment with my new bff, I knew that the first endo was a little off her game. I was given just a couple of more salivary tests passed those with high results. The next test was the MRI. They found a 3mm tumor on the right anterior position of the pituitary gland. WOW, Hello, we knew it was going to be something, but to actually get the result was, well SHOCKING! I mean, I was excited, we finally had a reason for all of the "craziness". At the same time though, I was (am)terrified!! Well on to the next testing step in this Cushing's journey. I was scheduled for a PSS (Petrosal Sinus Sampling). This test is where they put catheters into the groin in each leg and threaded up to the pituitary gland on each side of it. ACTH levels in the blood are measured. The results are used to determine whether ACTH production is due to either a pituitary or a non-pituitary source. In my case the numbers were sky high and just helped to prove the MRI results. Yes there is definitely a tumor and yes I have Cushing's disease. Now what comes next? Well I have my appointment with the neurosurgeon in August. Woohoo, I'm gonna get there sooner or later, so I can get back to ME!

Where do I begin...

It's hard to pinpoint when and where my cushing's began, but we believe it to be somewhere around 1998 after I had Nick (my second child). My symptoms were very unnoticeable, thinking back, the only real thing, my face was a little rounder (nothing like now),menstrual cycles had been abnormal since having Hailey (my first child), some depression -had moved away from home and had two kids all within 2-3 years, so it just seemed to me those feelings were normal. Looking back at old pictures, you can see the central weight gain, it has never been in my arms and legs. I just kept throwing everything back on having babies. Over the years there have been symptoms that were just spaced out and were not really ever pieced together. Just small things like I would have really bad headaches (so bad I would have Scott just put pressure on my head) and backaches. I would go through times that I was up all night just going nonstop, now I know that was the cortisol playing with my body. Nothing that would scare me enough to go to the doctor for. Honestly, if I am not bleeding or having a baby I don't go to doctors. Fast forward to 2005, I had put on more weight then lost weight and then we got pregnant with Ava (my third child). During the pregnancy the only "abnormal" things were, at times not being able to sleep,then too much sleep, and oh man the restless legs. But that just seemed to me the crazy things that happen during pregnancy. It was pretty much like the other two pregnancies. As I think about the pregnancies though, I did have a miscarriage between Hailey and Nick (just another stress factor to throw in there). After having Ava the "baby weight" come off a little, but of course, not the way I would have liked it to,lol. Now jump to 2007, menstrual cycle is still off, for me that was normal, still more weight gain and only in the middle, crazy stretch marks, more depression, ass kicking mood swings, my lovely hump, headaches. Still hadn't put symptoms together, I just thought it was one thing after another due to having babies yet again and just dealt with what was going on. Oh yeah the facial hair, "it's in the family". I think there was an excuse for everything. Who wants to be a hypochondriac, and complain over every little thing? Now just last year my symptoms have started to really manifest. I have completely lost menstrual cycles, fatigue, acne, skin rashes, insomnia, all on the list above. So finally in November of 2008 I seen my ob/gyn, mainly because of the loss of periods and the excess facial hair. I am told by her that I could be going through early menopause or PCOS (poly cystic ovarian syndrome). I go for some lab work and she sends me to see an endocrinologist. I really had no clue what to expect there. In the meantime, I started researching PCOS. I was starting to think, hey that's what it is. My labs had shown high testosterone, insulin resistance, high blood glucose, so that was that. I was put on some medicine and sent for some more blood work. Had my thyroid checked out by ultrasound, they thought there was a 1cm nodule. So the next step for that was a biopsy, turned out there was nothing there. Through the researching, I kept coming across cushing's. That's when my light bulb turned on. I had more symptoms than what just fell under PCOS. So back to the endo I go, this time more informed and she just wasn't that much more help and so I moved on to another....

??Cushing's Syndrome/Disease??

Cushing’s Syndrome

Cushing's syndrome is a debilitating endocrine disorder characterized by excessive cortisol levels in the blood which may be the result of a tumor of the pituitary gland, adrenal glands (located above the kidneys) or from tumors or cancer arising elsewhere in the body (ectopic ACTH producing tumors). Cushings disease refers specifically to excessive ACTH secretion by a pituitary tumor (also called pituitary adenoma). The cause of Cushings Syndrome is a pituitary adenoma in over 70% of adults and in approximately 60-70% of children and adolescents. Most pituitary ACTH-secreting adenomas are small in size (microadenomas). Overall, Cushings Disease is relatively rare, affecting 10 to 15 of every million people each year, and most commonly affects adults aged 20 to 50 years. Women account for over 70% of cases.
Symptoms and signs of Cushings syndrome and disease include:


Symptoms of Cushing's
• Facial redness
• Rounding of the face (moon face)
• Unexplained weight gain around belly
• Buffalo hump, or hump on back of neck
• Pink or purple stretch marks
• Thicker or more visible body and facial hair
• Acne
• Muscle weakness
• Extreme fatigue
• Thin and fragile skin that bruises easily
• Depression, anxiety and irritability
• Slow healing of cuts, insect bites and infections
• Bone thinning
• Recurrent infections
• Sleep disturbances
• High blood pressure
• Diabetes mellitus
• Irregular or absent menstrual periods in females

Long-Term Complications of Cushing's
• Bone loss (osteoporosis)
• High blood pressure (hypertension)
• Kidney stones
• Diabetes
• Unusual infections