IPSS & Beginning The Road to Recovery...

By this point in time I was feeling so so desperate, as if I wasn't already before---fighting for so long without a diagnosis, finally having one and no one will offer treatment!  To date I've been turned away or ignored by 5 different neurosurgeons!  Most of which could see the tumor, but didnt agree with a cyclical cushings diagnosis ---because they didnt believe it existed.  Hello, here I am!!! I'm proof!  One test I'd pondered for a while, but never had anyone order because of how invasive it's known to be, is called an IPSS--INFERIOR PETROSAL SINUS SAMPLING. I made an appointment with my PCP and sat down and told him how frustrated I was and that I really wanted this last test ordered so I could have more "evidence" of cushings and that this test would help determine which side of the gland the tumor was on.  My dr said if he could, he would order it, and by me coming and asking him for this test, it really shows him how much I must suffer.

November 14th was my IPSS date, it was HORRIFIC. You lay flat on a table, a cold cold room and 

wait as they insert the catheters , one on each side and feed them all the way up from your 

inner thigh to the base of your brain in the pituitary gland.

 As I lay there, ironically "stronger" by Kelly Clarkson is playing.  They take 

samples before and after they inject CRH or something comparable...I made it thru!

I had to sit in recovery for a few hours and not move and then was free to go.  The manipulation, 

and drug they injected caused such a terrible low, I could barely move the next 5days.   

My results supported the way by body felt:   Before injected my ACTH at the source was over 1600, 

After injection it went up to over 15,000!  Normal is 10-60.   Before this I'd never had collected 

a blood draw that showed I had HIGH ACTH, in fact some came back low.  

The test is to be handled so carefully, put on ice and spun right away that if this isn't done it can 

SEVERELY affect the results as we can tell, at the source before meds were injected my ACTH was over 1600.

I tried going to the ER for help during this low the IPSS created because my pulse was going nuts 

making it hard to breathe, but they wouldn't help me.  Told me I must have anxiety issues, 

even tho I tried explaining it was related to the meds I'd recieved and that I was out in a severe low., they sent me

home with anti nasea meds, even tho I was having severe AI (adrenal insufficency) symptoms.   I 

went home and consulted a few who have been down this journey, and they helped me get out of 

This mess I was in! I took hydro, rested, drank lots of fluids, and didnt really move until my 

appointment in Milwaukee on November 21st, the day before thanksgiving w Dr.Grant Sinson. 

November 21st, wow. My "last" hope.  After great advice from a friend And my mom, I 

went in the appointment unguarded, put my pride aside and just was prepared to lay everything on the table.

I was shocked by Dr Sinsons approach, and I never had to convince him of a thing.

Dr Sinson came in, and said " wow, I've read everything you've faxed, I've read your labs, 

seen your MRI, studied your symptoms saw your pictures, and I am so sorry for the mess your in

But I'm going to help clean it up with you.  I must be honest with you, surgically this will probably be Your "easiest" recovery, Cushings Recovery? If surgery goes the way we hope, it will be " unbearable" at times as you wean.

As you recover things will seem to get better then they may get bad again, this is normal as your master gland--the pituitary re-Sets.  It can take 3months to 2years to fully recover from cushings, but I believe you've made it this far I believe you can do it."   

As you can imagine, my eyes are filled with tears.  I hug him. "Thank you" I whisper.

December 11th 2012 I finally had surgery to remove the pituitary tumor caused by My Cyclical Cushings.  I am now on the road to recovering from cushings.  The road isn't easy, but I'm so blessed to have recieved the chance to get well and be cured. Dr grant Stinson in Milwaukee WI saved my life.  I share my story because I feel cushings isn't as rare as drs say---it's just rarely diagnosed.

Week One: December 11th-18th.

After surgery, my cortisol levels were checked every 6 hrs...45....15...22...and 4! By the time I was at 4 I felt like I'd been hit by a Mac truck...sweating, horrific body pain,GI issues, headache,flushing, rapid heart rate (140's) I could barely move..  I was immediately injected with 100mg of Solu-cortef.  This definitely helped, and by the time I left the hospital I was discharged on 50mg, but was told to go down to 30mg the day after discharge.  I couldn't handle that,(terrible with drawl symptoms as mentioned above began...) so I called and was allowed to stay at 50mg until I thought I could drop down.  

The night of the 15th was pure hell.  Severe anxiety began.  I was shakey, sobbing, and so panicky, I felt like if this is how I'd always feel I just wanted to die.  I wanted it to all end right now.  Matt my husband was so scared, I sat there trying to rip my hair out screaming PLEASE I can't do this! Even tho I "knew" I was ok, I didn't feel that way. 

  I thought my God I ASKED for this, what the hell is wrong with me??    

I emailed my endo who helped me in Milwaukee at the hospital and said you've got to help me, my body is so shaken up can you please give me something for anxiety...she said we can't be sure that its because of surgery!! WHAT?  1/3 of my pituitary, the "master" gland of our hormones was removed.  My adrenals and pituitary or not in sync at all because they've been controlled by the tumor!!  Knowing I wanted to die, my endo wanted be to wait until my appointment on the 20th, this only made my anxiety worse! My heart pounding threw my chest.

   I tried taking showers, hot baths, listening to music, zoning out...it was horrid! I was up all night, but the anxiety eased up in the morning, and then Sunday rolled around I asked my primary for something, and he said absolutely!  That helped so much.  The anxiety lasted for about a week, but Xanax sure did help.  Phew.  Really, unless you go thru a panic attack or have ever had anxiety, you truly can't relate. It's super intense and there is no "getting over it".

That was the first 10days....here's the next 11 weeks...

To make this not long and drawn out, my weaning has gone like this :

I went from 50mg to 40mg to 30mg to sinus infection and took 60mg for like a week...then went 50mg to 40mg to 35mg to UTI to 50mg to 40mg 35 30 25 and now at 20mg!! During these weans I experience Adrenal insufficiency( AI) symptoms, like: sweats,headache,rapid heart rate, confusion-spacey, extreme muscle pain, flushing, nausea...the only thing that is pretty unbearable for like 7-10 days is the pain all over.  I called my endo locally again to see if she'd give me something for the pain because I felt like if I fought thru the first 3-4 days the only thing that was holding me back, and making me think I should up my Hydro dosage was the pain --- so I thought if I got help with that, that being on less steroids (synthetic cortisol--hydro) would be better for my body, as I've been poisoned for over 15years!!

Around week 10, the anxiety came back and still lingers but at least i have meds this time!

My endo told me that if the pain was that bad, I should just increase my hydro.  While she may believe in cyclical Cushings and be a wonderful dr. She does not understand the dynamics of the disease and all of the problems it brings to the 

body.  You see cortisol is an anti inflammatory so naturally as I wean the pain from a) not having the cortisol secreting tumor in my pituitary anymore --- and b) taking less hydro would cause the pain to be un covered and the only way I can heal is to reduce a Hydro and rebuild muscles!

So what POSITIVE things have I noticed?  Well I don't have constant GI problems unless I'm weaning, I feel like I'm always in a "low" and I don't have the Ups and Downs of the cyclical nature of "cyclical cushings" anymore.   It's very hard to function everyday, I never thought I'd be greatful for "highs" , but at least when I felt a little more like functioning before surgery---at least it gave me a break from the lows...but I'm so grateful that for right now I can claim remission, and when I'm done weaning hopefully will be able to scream: I'm cured.  Until then, ill keep fighting thru, for whatever the next step is...RECOVERY leads me to it!

 

“When the world says give up, Hope whispers…Try it one more time.”

                                  Never giving up~Meagan