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Update on KatyJude - Post Op
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From:
![]() ![]() MinnieChat
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Katy asked me to post this (aka Maggie Fuss). Please support Maggie during her time of recovery. Recovery is hard for Maggie right now and she can use the support and caring this group of fine folks has to offer. ![]() Minnie
![]() I have had pituitary surgery on February 19,2004, for a type of Cushings
disease. I was sick for over ten years with the disease and it was called everything
in the book. I have been told by the neuroendocrinoligist who is now managing my
case at OHSU that Cushings causes cysts to form and this is truly a case for me.
I even had an extensive pelvic surgery in 1996 which they though (and rightly so --
I had all the indications -- ovarian remnant syndrome -- which meant I had an extensive pelvic laparotomy putting me in the hospital for almost two weeks-- the path report did not match the disease -- there was no ovarian tissue found and my
pituitary values -- FSH and LH did not elevate, despite the fact I was in my late 50's.
The cysts continued to form.
Then I developed secondary or central hypothyroidism. This means that my Free
T4 was low and my FSH was also very low. It is because the pituitary was not
spitting out any thyroid replacement. I was put on Synthroid. But no one explained
the connection of the pituitary and why I had secondary or central hypothyroidism
at the time.
I grew sicker and sicker. I gained weight and was so fatigued that I -- an unusually
very active person could barely get out of bed. I developed acne and strange things
like ingrown toenails, and bronchitis that we could not cure. Nothing made sense.
It was an astute Neuroendocrinologist William Ludlam, MD, Phd, at OHSU (Oregon)
who picked up on it in an email I originally sent to him. Anyone fighting pituitary
disease needs to find someone who deals with pituitary disease -- this is the ONLY way you will get well. Yes, it may mean traveling out of state but you will save money in the long run and you will have chance at getting well, a chance I almost lost. Dr. Ludlam was in contact with my family physician who was puzzled over my uncontrollable hypertension. Yes, tests had been run -- even a low dose dexamethasone suppression test but it turned out that the low dose dex test was the incorrect test to run for the type of pituitary tumor I have. Dr. Ludlam coordinated
blood testing and 24 hr urine testing with my family doctor and when the results came in he told me it was time to come to OHSU for consult and a dynamic MRI.
On many of the MRI's you cannot see the pituitary tumors and sometimes local
radiologists do not know what they are looking at when they look at the pituitary.
His odds were so strong that he would find the tumor lead us to purchase flight tickets to Oregon from Michigan. I was growing sicker and sicker -- I was not obese
as one would expect a possible Cushings patient to be. I was actually nauseated and utterly fatigued and had been placed locally on a small dose of cortisone just
so I could get out of bed.
The dynamic MRI showed a 2 mm tumor on the right and surgery was scheduled and
cancelled by me once (I got scared -- what can I say) and rescheduled in February.
Surgery was done on FEbruary 19 of 2004. My recovery has not been easy. I was
able to fly home about a week after surgery -- no problems with my ears or head --
and a wheelchair was arranged at the airport. The hotels in Portland, Oregon, cater
to OHSU patients and we had wonderful service.
I developed a severe sinusitus post-op about a week after I returned home with fever of 102 and the usual effects of sinus infection that seemed intractable to antibiotics. I spent four weeks on Levaquin 500 mg a day and had multiple blood cultures and sinus cultures to make sure we were using the right antibiotic as well as having to add diflucan 150 mg every other day. I am still taking Swish and Swallow for the
Thrush I have as a result of the heavy dose of steroids I am taking. However, my
other choice was sinus surgery and I elected antibiotic therapy.
I am now trying to cut back on a heavy dose of steroids. It has been very difficult but
Dr. Ludlam has provided excellent care and guidance. He is always there when we
call - my family had to call him early in the morning on Monday -- I had slipped into
some kind of crazy coma. (Daughter is an RN). No one knew what to do but Dr.
Ludlam immediately came to the phone and told them to give me 20 mg of hydro-
cortisone and call our family doctor. I now have what my family doctor feels is
steroid induced diabetes type 2 which we hope will be temporary. Dr. Ludlam restarted the steroid taper at a very high amount saying some people have problems
getting off the hydrocortisone and I believe this is true particularly since I have had the disease untreated for so very, very long. We are also trying to deal with ex-
ceptionally high and uncontrollable hypertension -- 220 +/100+ and the newly found diabetes type 2....
I note that most articles say you can go back to work and be fine in two weeks. I
question this for people who have pituitary surgery for Cushings. Maybe if you have
a case with no complications but I would never plan on this. My steroid dose is
very high -- and we are bumping it down very, very slowly this time. I see tonight
where watching my diabetes diet has added some help thanks to my family doctor.
His work and caring has been admirable.
I read the boards and I hear of people running from endo to endo and I did the same
thing for ten years as the pituitary tumor weaved its way thru the whole left half of
my pituitary --I am very lucky that OHSU was able to resect it when it did as it had
appeared to reach midline at time of surgery. If you think or even suspect you have
a pituitary tumor, you MUST get to a pituitary center; if you get brushed off, go to another. You are wasting your time with endos who look at symptoms and numbers that they don't understand. You don't have that many centers to choose from; I
would highly recommend OHSU and Dr. Ludlam. You will also need to have a good
family doctor who will converse and help coordinate tests if you live some distance
away.
Day by day, your choices in this matter will start to leave you, as you get sicker and sicker. There are some pituitary tumors that may not need surgery. A good pituitary
center will tell you this but I cannot believe the number of people out there suffering
from Cushings and not being diagnosed. The surgery is now over and a long period
of recovery is expected. Maggie Fuss ([EMAIL PROTECTED])
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