Home

Lili, Pituitary Post-Op Update

Leave a comment

 

hi there…

i had the pituitary surgery.  They said i am cured (of course it could come back) but the day after surgery my acth level was 3.7 and the next day it was 1.  They consider that a cure.

it is a very painful recovery for me and i am documenting each day.

The headaches and pressure in my head were so awful and painful but have now on day 6 subsided.  They had to cut my septum to get through and i had a bone spur too so maybe that added to it…my nose was, still is i am sure, packed and i can’t blow my nose till July 12!  The nausea was bad too.  The cortisol withdrawal hasn’t been so horrible yet.  They have me on a taper program of each week taking less.

The tumor was towards the left side and the surgeon who was Dr. Van Gompel at Mayo was aggressive in the amount of tissue he took out as he said it was soft.  He wanted a “home run”.  I asked after if he got the home run and he said yes.

The whole Mayo experience was strange.  You don’t really get to call and speak to the doctor after you see them…you get a “desk” and a message gets sent.  The endocrinologist is the only one who calls back personally but I guess that is a lot.  I would highly recommend her and don’t know all her info except her name is Dr. Irina Bancos at the Mayo clinic.  Things just fell into place there.  As you know I was only scheduled for the IPSS but when she saw how symptomatic I was and all my levels she picked up the phone on a Tuesday and had me scheduled for surgery Friday morning.  A one stop shop.  I was scared and there alone but got through it.

The next 3-12 months will be difficult.  I am currently on some pain meds and muscle relaxers but in touch with my sponsor daily and we decided I don’t have to be a martyr.  I just need to check myself and get off them as soon as I get these headaches under control.

Mary, I’d like to stay active on your site.  I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure.  Please let me know the best way I can do this and you may post this if you’d like.  Maybe edit out the pain meds and sponsor part as I don’t think many would relate to that but who knows.

I just know I am grateful to you and this site.

Lili

 

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Michael B, Pituitary Bio

Leave a comment

May 2015 diagnosed
June 2015 ipss
Sept 2015 transsphenoidal surgery fail
January 2016 metyrapone
May 2017 mri and seen something but in a dangerous place
Aug 2017 gamma knife
June 2019 waiting for gamma knife to work

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Archived Interview: Rebecca D (Rebecca D), Pituitary Patient

Leave a comment

Hi Ladies and Gents, my fellow Cushies!

I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!

As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.

In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”

Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.

Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).

So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!

After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*

I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be…  You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂

Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy

Stay Beautiful xoxox

Archives are available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Crystal (Crystal), Pituitary Bio

3 Comments

 

Hi, my name is Crystal and I’m new. I’m a 35 yr.old mother of a 5 yr. old with more energy in her little pinky than I have in an entire day and I’m married to an amazing man, who makes living with this possible.

I was finally diagnosed with Cushing’s Disease (excreting pituitary tumor). In April 2017. I had the typical doctor who didn’t believe me so I took it into my own hands and figured out what I thought was going on….Cushings without a doubt in my mind.

So I went to a naturopath and asked her to order me a 24 hr. urine test and when she got it she said I need to go to an endo asap. I had already made appointments with two, one being at OHSU in Oregon with one of the best pit. teams in the US. I only live 2 hrs. away and am sooo lucky for that. I know many people have to travel much further to get the best healthcare for this.

Anyways, the endo I saw in Portland looked at me and immediately and said I had a very cushoid appearance and that we needed to do about 6 tests in the next two weeks. I did the tests, then had to do an MRI, which showed a 5×4 tumor in my pituitary gland, next was an IPSS to make sure it was 100% pituitary and not ectopic coming from somewhere else in my body. Once this was all confirmed I was scheduled for surgery in June.

As my surgery date approached, my symptoms got significantly worse and I finally called my endo to tell them. The nurse told me I had to deal with it until surgery and that there was nothing tI could do about my symptoms. Within 5 minutes of hanging up the assistant to the neurosurgeon called and told me surgery was being moved to the following week which was four days away. I had the transsphenoidal surgery about 6 weeks ago and my cortisol dropped to 0.6 in less than 24 hours after surgery. The neurosurgeon said I was technically in remission and although I’m happy, it seems to good to be true after the last couple years I’ve had. I came to this site looking for information on recovery. I know everyone is different and I was warned a little bit about it, but I’m pretty miserable and very curious how others recoveries are going.

Thanks, glad to be here. Crystal

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Margaret (Margaret), Pituitary Bio

Leave a comment

 

Originally from December 22, 2008

I have recently been diagnosised with Cushing disease.

I began having problems about 5 years ago with high blood pressure and weight gain medication brought blood pressure under control and diet pills helped me to lose a little weight.

Then just in 2008 started having stress fxs of feet for no reason bone densitiy test revealed osteopenia but with fxs osteoporsis. Blood pressure kept going higher but would not respond to more medicine. Started having kidney stones. Diagnosised with migraines/cluster headaches but mediciations not working very well, pain mainly on left side behide eye always. Had shingles. All this before I was 40. I always said “I am too young to be so old” now I know why. When blood pressure wouldn’t respond to meds I started investigating and asked PCP to do 24 free urine. I read her notes she put in there “patient thinks she has cushings” Well when first 24 free urine came back 141 range 3-50 She wouldn’t even talk to me just sent me straight to endocrinologist. He did cortisol total am (did it later than should cause of lab problem 10:30 am) it was still high 42.8 Second 24 free urine was 339 this time 1 mg dex suppression was 25.7 saliva was high too but hasn’t gotten numbers yet.

Waiting for MRI with contrast reults but 8 mg dex supp did suppress so we know it is pituitary.

It kinda has been a whirlwind cause first test was done in October 2008.

Oh did I mention the 60 lbs I put on in like 7 months!!!!!! I look 7 months pregnant!!! ANd fatigue I get sooo tired just cleaning house. I went to my GYN a few months ago and was told in a round about way that I was overweight and of course overweight people have less energy and excessive sweating. So she said eat less exercise more.

I am in touch with Dr Jane at UVA in Charlottesville VA and as soon as he reads reports, sees films etc he will schedule me for IPSS if needed and surgery.

I am scared and excited. Scared about what lies ahead the next year Excited that one day I may be “normal” again. Looking back at pictures from a few years ago makes me cry (something else I do more of lately) There are 2 different people then and now.

I am 41 years old now, married, mother to 3 girls (ages 14,9,and 8). I have a great job as a surgical tech doing just cataract surgery with 3 great doctors.

I am very scared and excited.

Blogger jackie m said…

my thoughts are with you margaret .I have had pit surgery and radiotherapy
it can be a long a drawn out process but keep positive jackie m from uk

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Jennifer, Undiagnosed Bio

2 Comments

 

Hello, I am a 33 yearl old female who has been living a nightmare for the last 5 years as I have seen my total health delcine before my eyes.

I have gained massive amounts of weight with no medical reason, my monthly cycle has left me, insomnia, severe depression and anxiety for no reason, infertility, allmy obesity is in my stomach and upper back, I have developed sleep apnea from having a thick neck, I have the infamous buffalo hump, hair loss of 50% of my hair, I cannot lose weight no matter what I do, I take these weird week spells where I cannote even get out of bed, hair has literally stopped growing on my legs and other areas of my body, except on my chin and abdomen where I do not want it to grow, my face is round and red and people who see me cannot believe this transformation my body has undertaken and I then have to hear how could have let myself go? If you would just stay on a diet longer than 2 weeks? I am glad that my children are not fat? I could go on and on the emotionally abuse I have had to enudre the last 5-6 years.

I have exercised and exercised to no improvement other than I feel exhausted, I eat a very strict diet, my Mother had to move over here with us because I no longer can care for my children and need her help. I have medical bills back in the states that are like science fiction.

I finally got diagnosed with hypothyroidism and still feel horrible, I have to take Toprol XL for heart palpitations without no explanation from where they are coming from it is so much easier for some physicians to keep just giving you pills instead of trying to figure out what is the root problem.

I now live in a foreign country where it is even harder on me, but I do have an appointment after 10 months with an Endocrinologist here in Doha tomorrow and on November 9th I have an appointment to go see a Cushings Expert in the UAE in Dubai his name is Dr. Taher so I will give an update after theses two visits.

Jennifer
Doha, Qatar

Update December 30, 2007

Hello My name is Jennifer and I am a 33 year old American living in Doha, Qatar (Middle-East), I was finally sent to Dubai and seen an Endocrinologist and he did an MRI and i have two pituitary tumors and he believes that I do have Cushings so he referred me to see Dr. Bill Ludlam, MD in Seatte in January 2008 to get further testing.

I know that there were something worng with me a long time ago but I never knew it was something as stealthy as this disease possibly, I have all the classical symptoms. Also the tesing is so so expensive in the States so I am waiting for the Qatari Governments approval for my medical expenses in Seattle.

I will giva another update soon.

Update May 28, 2008

My current update. I did go see Dr. Ludlam with no avail since my insurance would not pay for him but he did state that I needed further testing so after I left Washington I went to my friends house in Alaska just to have time to think since my husband and I are seperated.

I decided to go back home to West Virginia to be with my family for support and see a Doctor there bringing all my reports and scans to him from the Dr. in the Middle-East and Dr. Ludlmas suggestions.

I seen Dr Yakub and they did tests and all of them came back positive for Cushings my urine, salivory and blood several times came back positive and high for Cushings , also my MRI in January showed that my pituitary tumors are still there.

He is a good doctor and is located in Huntington West Virginia and he not only practices Endocrinology but he is also a Professor of Endocrinology at Marshall University School of Medicine. I will keep all of you updated and thank you so much for your support through this trying time in my life and I pray that all of the Cushies on this board get diagnosed, treated and healed.

Update July 10, 2008

I have finally got my diagnosis and I am heading to the University of Virgnia in Charloettesville on July 23rd! I will update what happens from there. I would also like to say thank you to Christi who has helaped me and talked to me through this difficult time.

Update September 19, 2008

Hello Everyone I am so sorry that it has taken me son long to get back with you I had my Inferior Petrosal Sinus Sampling done this week at the University of Virginia in Charlottesville and it is confirmed I have pituitary dependent Cushings and I am scheduled for surgery the first week of October with Dr. John Jane Jr. They are great at the University of Virginia and I am so thankful for them. I am hoping that someone will take me under their wing while I am getting ready for surgery and give me some advice. I would really appreciate the help.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Matthew C, Pituitary Bio

4 Comments

pituitary-location
Hello,
I am retired from the United States Army and currently work as a dispatcher for the Blue Springs School District. A few years ago I started to have extreme anxiety. Of course, I went to a psychiatrist and was prescribed an anti-depressants. After a few months the anxiety would resolve. Unfortunately, over the years it would come and go and last for many months each time.

During the summer of 2015, the anxiety returned with a vengeance. I went to a new psychiatrist and was again prescribed an anti-depressant. However, this time it did not work. So, we went through a number of them without success. I researched to see what physical manifestation may be making me feel the gut wrenching anxiety and insomnia. I discovered the wonderful hormone called – YES YOU GUESSED IT – cortisol.

I then learned that cortisol came from the small, but powerful adrenal glands. That lead me to Cushing’s Syndrome/Disease. However, every site that I went to said that Cushing’s was very rear and effected women more than men. After, many more months of suffering and failing at the anti-depressant experiment, I went to my primary doctor and requested a blood test to determine my cortisol levels. The test indicated I did have high morning plasma cortisol.

My doctor referred me to an endocrinologist. I made a crucial mistake when I went to see him. He asked me my history and I told him about the severe anxiety. That planted a seed in his brain that I was just suffering from a psychiatric disorder. Nevertheless, he did order the test (Plasma cortisol, saliva cortisol and 24-hour urine free cortisol). All the test came back with higher than normal cortisol, but he kept saying that I was having “false positives.”

This went on for a number of months and then he basically fired me as a patient. So, I go back to my primary doctor and he refers me to my second endocrinologist. Guess what the story turned out to go the same way. I was fired again as a patient.

Before I go on let me add a little to the story: I do not have any of the physical signs of high cortisol. Basically, I suffer from anxiety, insomnia, brain fog, cognitive impairment and constipation. So, in their defense I don’t look the part of a person suffering from Cushing’s.

My next attempt was with the Veterans Administration. My endocrinologist there did the same test and was convinced something was wrong. She ordered a Inferior Petrosal Sinus Sampling. Finally, a test that did confirm that I had Cushing’s Disease.

The surgery to remove the tumor was accomplished on 9 August, 2016. However, the surgery failed. The worst part is that my current endocrinologist feels that my test results are “false positives.” I must say the entire process has been frustrating at best.

I do have a radical plan in place with a endocrinologist overseas who has agreed to do the surgery that will cure my Cushing’s Disease once and for all. I call this the final solution. Yes, this is extreme but my symptoms are getting worse and I don’t feel like playing the game anymore.

In addition, my symptoms are getting worse as my blood pressure is getting higher and higher.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Older Entries

%d bloggers like this: