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First Follow up post Discharge from hospital

Apr 16, 2014 - 0 comments

post pituitary surgery

Had an appointment with the Neuro Ophthalmologist 2 days ago. They did a range of tests.
The results : indicated mild swelling behind the eyes. More than likely residual from the surgery. Nothing to worry about. Repeat test in 4 weeks.

Then had an appointment with Endocrinologist same day. She wants me to stop the desmopressin tablets and start on the Desmopressin nasal spray. Still a little dubious about doing this as my left nostril is still blocked and feels sore. I voiced my concerns but they were brushed aside. I'm seeing the ENT and Neuro team in 5 days. I'm waiting til they check everything out before i swap to the nasal spray!!! 1 week cant hurt surely. Plus 1 more week of healing is a lot of healing :)

Only half my blood test results were back and the 24 hr UFC result was still pending ( how useless).
My thyroid function had dropped from 17.6 to 12.2 ( 12 - 22 ), so we will repeat that in a month.
ACTH results were not back and thats what i was most interested in seeing as most if not all of my ACTH cells were removed !! Cortisol we are also still waiting on !!!!
My Endo told me not to take Hydrocortisol unless i start vomiting or become really unwell. She said i need to expect to fatigue easy and have body aches but try not to take the hydrocort unless absolutely necessary.
If my Cortisol is really low she will ring me. No call as yet so im thinking its not really low.

So for now its a waiting game and i just take each day as it comes.

Time for a nap :)


Apr 12, 2014 - 0 comments

pituitary surgery


pituitary enlargement




central diabetes insipidus






CSF leak

Went to the hospital at 0700hrs friday 21st March 2014.
Honestly all i remember is the anaesthetist popping the Arterial line in and then 10 days later, I remember my partner coming in to see me. I was discharged the next day.
So most of what i know about the operation and what was to follow came from my sister telling me what happened and what the doctors told me the day i was discharged.
So I went into theater at 1330hrs. The surgeon were unable to find any microadenoma so sent off a section to pathology. This returned a result of ACTH cell Hyperplasia. As my Cortisol levels over the past 3 months had increased exponentially it was decided to remove most of the gland and get rid of the hyperplasia cells. The only part of the gland left was a small part that attaches to the stalk leading to the Hypothalamus.
During surgery I had a CSF leak which was repaired with a fat graft from my right thigh.
Surgery was completed at 1730hrs and i was transferred to recovery.
In recovery I started vomiting and they decided to keep me in recovery till I stopped.
Also 1 hr post surgery i developed Diabetes Insipidus. I was passing 900ml of urine every 20 minutes. They were throwing fluids into me as fast as i passed them out.
Finally at 2130 hrs they transferred me to the high dependency unit. Here my sister and my partner had been waiting for me since 1700hrs.
The next day apparently I had severe left sided weakness and my right pupil wasn't responding to light. I went down for a CAT scan. Apparently I had swelling around the brain, possibly caused by the over load of fluids pumped into me over night. This resolved on its own over the next 24 hrs. Although my right pupil remained sluggish for the next 5 days.
I had Hyponatremia and Hyperkalaemia off and on over the next week as they tried to Balance my electrolytes.
I was in the high dependency unit for 5 days. During this time i was visited by the Occupational Therapist and a speech pathologist but i cant remember what they said or did.
I was also seen by an Ophthalmologist who did a range of tests and arranged for more follow up tests two weeks later. that appointment is in 2 days.
I spent 11 days all up in hospital ( a bit longer than i was expecting). I had an indwelling catheter in for 9 days as they measured my fluid intake and output. I was putting out 8 + litres a day. That's now decreased to 4 1/2 litres a day and is much more managable. I am on Desmopressin twice a day.
That was 12 days ago.

I have been home 12 days now . The last two days i have been sooooooo fatigued I cant believe how bad it is. I have body aches everywhere, I am Nauseous and i have mild diarrhoea.
I am so glad I have an appointment with the Endocrinologist in 2 days cos I hate feeling this bad !!!
It has to get better than this !!!

Anyway thats enough for now....yep im tired out again :)

The Beginning : From First Symptom to Diagnosis

Mar 12, 2014 - 2 comments

Cushings Disease






Cushings Syndrom


Pituitary Adenoma


pituitary tumor


pituitary surgery



I have had extremely out of wack blood pressure 234/125 ( around there ), Blood sugar levels that swing from on the low side, to so high my monitor just reads high. This has been going on for two years. My GP just kept changing meds, upping doses but nothing worked. I even had a Lupus type reaction to one of the Meds. So with nothing working i asked for a referal to see an endocrinologist to see if we could sort these issues out.

After a full medical assessment, ? cushings syndrome, my endo sent me off to have a full range of tests. Blood/ urine. midnight saliva test, dexamethazone suppression test,  another 24hr Urine and a longer 2 day suppression test. Still high. Then off for a full body below neck CT scan and a MRI of head, all normal, except the MRI did say i had a " Bulky " Pituitary gland ...

I dont even know what that could mean lol

They said i have the pituitary gland of a 16 yr old ( i thought that was good, but apparently not ) lol

I have just turned 50 !.

3 weeks ago i had an IPSS test ( inferior, petrosal sinus sample ), Results as follows :
Normal values cortisol ( 64-618), prolactin ( 102-496), ACTH (7.2- 63)
My results 10 mins post CRH
peripheral : cortisol 969 H, prolactin 263, ACTH 76
Rt petrosal sinus cortisol 985 H, prolactin 289, ACTH 88
Lft petrosal sinus cortisol 1018 H, Prolactin 618 H, ACTH 680 H

After this final test the hospital called me and i spoke to a neurosurgeon who suggested transsphenoidal surgery. He said i am a difficult case though as they dont know exactly where the tumor is as it didnt show up on the MRI. But the pathology definately suggests a microadenoma on the left side of my pituitary gland.
My surgery is in 8 days.I have a pre appointment with the surgeon in 4 days.

Oh and other symptoms ive had.... ive actually lost weight on the scales, but my stomach looks like im 8 months pregnant, but my poor little legs seem like they have atrophied. I get very weak very fast/ fatigued/ spend many hours sleeping ( but broken sleep). Nausea like you wouldnt believe but im sure thats my swinging sugars, Blurred vision, again im sure is sugar related, I have a foggy brain, cant think fast on my feet like i used to. And im irritable !!!!!!!! +++++++ cry at the drop of a hat, oh and decreased pain threshold ( used to be high ).

I sound like a mess lol. Im just hoping that surgery can find what they are looking for and i can get better :)

Last week i got a phone call from my Endocrinologist who told me that my IPSS results were " Atypical ". She wants to run all the Urine, Blood, saliva and Dexa suppression tests again pre surgery. Completed the 24hr Urine this morning. Doing the Midnight saliva tonight, then i take the dexamethazone, go to bed :). Tomorrow morning ( early, 8am) im off to have the post dexa blood test.

Thats where im up to for now.

Next step....speak to the surgeons, then surgery, then i guess we wait n see :)
So begins my road to recovery :)