đź“ž Livestream the Rare Disease Congressional Caucus Briefing December 4th

For those who can not make it to Washington, DC next week, we’re pleased to announce a livestream will be available for the Rare Disease Congressional Caucus briefing.

Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing:

The Diagnostic Odyssey

Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m.

121 Cannon House Office Building

Complimentary lunch included

Registration available on-site

Register for the event livestream by clicking this link.

 

If you have questions about the briefing, please email Shannon von Felden, RDLA Program Manager, at svonfelden@everylifefoundation.org.

đź“ž Webinar: Surgical Strategies in the Treatment of Pituitary Tumors

Presented by

Mario Zuccarello, MD
Neurosurgeon
University of Cincinnati College of Medicine
Department of Neurosurgery

and

Jonathan A. Forbes, MD
Neurosurgeon
University of Cincinnati College of Medicine
Department of Neurosurgery

After registering you will receive a confirmation email containing information about joining the webinar.

Contact us at webinar@pituitary.org if you have any questions.

Date: December 3, 2018
Time: 3:00PM – 4:00PM Pacific Standard Time 6:00PM – 7:00PM Eastern Standard Time

Learning Objectives:

  • To understand the role of surgery in the treatment of pituitary tumors
  • To understand the advantages and disadvantages of different surgical approaches in the treatment of pituitary tumors
  • To understand the risks and benefits associated with different surgical strategies

Presenter Bios:

Mario Zuccarello, MD
Neurosurgeon

Mario Zuccarello, MD, is currently a Professor of Neurosurgery in the Department of Neurosurgery at the University of Cincinnati. He was the Frank H. Mayfield Chair for Neurological Surgery and Chairman of the Department of Neurosurgery from 2009-2017. Dr. Zuccarello is also a member of the University of Cincinnati Gardner Neuroscience Institute and the Greater Cincinnati/Northern Kentucky Stroke Team.

Dr. Zuccarello is dedicated to clinical research in neurovascular disease and the development of new neurosurgical techniques for the treatment of stroke, cerebral hemorrhage, vasospasm, carotid artery disease, and moyamoya disease. While Cincinnati has become widely known for its leadership in stroke research, treatment, and the development of clot-busting drugs, Dr. Zuccarello has led a quiet revolution in the prevention and treatment of brain hemorrhages, which rank among the most hazardous conditions of the brain.

Dr. Zuccarello graduated summa cum laude from the Gymnasium in Catania, Italy, in 1970. He received his medical degree from the University of Padova, Italy, in 1976, and completed his residency in neurosurgery from Padova, with summa cum laude honors, in 1980. He subsequently performed research fellowships at the University of Iowa and the University of Virginia Medical Center, Charlottesville, and a clinical fellowship at the University of Cincinnati.

He was inducted into Alpha Omega Alpha, the national medical honor society in 2001 and has been named to the Best Doctors in America since 2005. In 2013, he received recognition by members of the Vasospasm consortium for his dedication and outstanding accomplishments in the field of experimental and clinical research on subarachnoid hemorrhage.

Jonathan A. Forbes, MD
Neurosurgeon

Dr. Forbes is a fellowship-trained neurosurgeon with expertise and interest in open and minimally-invasive approaches for treatment of pathology of the cranial base. He has a long and distinguished history of academic recognition, commitment to excellence, and service to our country. As an undergraduate at Grove City College, he was a recipient of the Trustee Scholarship and was named Sportsman of the Year after his senior season of varsity football. Following the events of 9/11, he enrolled in the Health Professions Scholarship Program with the United States Air Force. In medical school at the University of Pittsburgh, he was a recipient of the David Glasser Honors’ Award for academic performance. During neurosurgical residency at Vanderbilt University, he received numerous national accolades—including the AANS Synthes Craniofacial Award for Research in Neurotrauma as well as the AANS Top Gun Award. His score on the American Board of Neurological Surgery (ABNS) written board examination during his fourth year of residency was recognized in the top 3% nationwide.

After completing his chief year of neurosurgical residency at Vanderbilt in 2013, Dr. Forbes went on to fulfill a 4-year commitment with the U.S. Air Force that included a 6-month deployment to Bagram Air Force Base in Afghanistan. Humanitarian care he provided at the Craig Joint Theater Hospital in Bagram has been featured in numerous neurosurgical journals—including Journal of Neurosurgery, World Neurosurgery and Neurosurgical Focus—and recognized on a national level by the USAF as part of the “Through Airmen’s Eyes” series. After honorable discharge from the military, he completed a minimally-invasive skull base fellowship at Weill Cornell Medical Center in New York City under the guidance of Dr. Theodore Schwartz prior to joining the UC Department of Neurosurgery. To date, Dr. Forbes has contributed to over 40 peer-reviewed publications.

đź“ž Webinar: Dr. Theodore Friedman on the Macrilen Stimulation Test for Growth Hormone Deficiency

 

Dr. Theodore Friedman’s next webinar will be on the Macrilen Stimulation Test for Growth Hormone Deficiency: Sunday,  December 9, 2018, 6 PM PST

Adult growth hormone deficiency occurs in patients with hypopituitarism and can occur in those with a pituitary tumor. A growth hormone stimulation test is needed to make the diagnosis of adult growth hormone deficiency.

Dr. Theodore Friedman’s next webinar will be on the Macrilen Stimulation Test for Growth Hormone Deficiency: Sunday,  December 9, 2018, 6-7 PM PST.

He will discuss the new Macrilen stimulation test and compare it to the glucagon stimulation. If you may have growth hormone deficiency, you do not want to miss this webinar.

6:00 pm  |  Pacific Standard Time, 9:00 pm Eastern Standard Time

Meeting number (access code): 284 045 554, Meeting password: growth

join the meeting at https://axisconciergemeetings.webex.com/webappng/sites/axisconciergemeetings/meeting/info/112079331212153316?MTID=ma5789d4e965d2af1c3ceedc7d92172c7

Slides will be available before the webinar at https://www.dropbox.com/sh/6lk0cmx5ae0bv7t/AADtLykFSioSmiRm6Rf4_tyta?dl=0

Join by phone +1-855-797-9485 US Toll free

You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the video conference will be posted on goodhormonehealth.com a few days after. You will be required to mute your phones/computers.

Please contact us at mail@goodhormonehealth.com if you have questions.

đź’‰ Helpful Doctors: Oregon

Krista shared her helpful doctor, Maria Fleseriu, in her bio.

 

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Maria Fleseriu
Your Doctor’s Address Street Address: 3303 SW Bond Ave
City: Portland
State / Province: Or
Postal / Zip Code: 97239
Your Doctor’s Phone Number (541) 494-4314
What are your Doctor’s Specialties? Neuro-endocrinology
What are your Doctor’s Hospital Affiliations? OHSU

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âť“Has Cushing’s Affected your Job or Quality of Life?

I would love to take one of the surveys mentioned in this news article.  My Cushing’s went into “remission” just over 31 years ago but I still feel the effects of having had it.

Pre-Cushing’s I had no problem working a full day, having a piano studio overflowing with students, going out at night, cleaning the house, being a normal mom.

I could do as I chose – if I wanted to go somewhere, or do something, I just did.

Now, I work part-time and my studio is much smaller.  Everything I do is to accommodate my nap schedule.  I have to plan everything carefully so I can take my meds on time and be ready to sleep.

Even going to regular doctors is harder, explaining why I take cortisone and growth hormone, why I can’t take whatever meds they want to prescribe.

Discussing with a sports medicine doctor why I should (or shouldn’t) have a cortisone shot in my knee.  (I went for it September 12!  Now I’ll have to explain to my endo.)

Unfortunately, I also haven’t lost all my Cushing’s weight (probably at least partly my own fault LOL) and I still have to shave my chin every day.

I honestly believed that my kidney cancer was due to my taking growth hormone, which I take because of my pituitary tumor.  Now, since I’m back on it, I’m not entirely sure – but who knows what else might be growing?  Or maybe the different brand is better for me.  Who can say?

What about you?  How has your life changed due to Cushing’s?

âť“Guest Question: Rife Machine

This question came up on the message boards today: Anyone ever used a Rife Machine on Cushings syndrome?

My response:

I don’t think so – this is the first I have heard of a Rife Machine so I looked it up and found this info:

Quote

American scientist Royal Raymond Rife invented the Rife machine. It produces an energy similar to radio waves.

Rife’s machine built on the work of Dr. Albert Abrams. Abrams believed every disease has its own electromagnetic frequency. He suggested doctors could kill diseased or cancerous cells by sending an electrical impulse identical to the cell’s unique electromagnetic frequency. This theory is sometimes called radionics.

Rife machines are Rife’s version of the machines used by Abrams. Some people claim they can help cure cancer and treat other conditions like Lyme disease and AIDS.

From https://www.healthline.com/health/rife-machine-cancer#claims

Anyone else?  Have you heard of this for Cushing’s?

Frantbri, are you going to try it?  If so, please keep us posted!

It would be great if something like this worked.

 

✍️ Day 20: 40 Days of Thankfulness

I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.

 

It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.

 

I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

 

There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.

 

I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.

 

There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.

 

So, I am very thankful that, for the moment, I am headache/migraine free!

 

Adapted from

✍️ Day 22: 40 Days of Thankfulness

 

Today is the 31st anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 31 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

Last year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/