Nominations Now Open for RareVoice Awards

rare-voice

Rare Disease Legislative Advocates is pleased to open nominations for the 5th Annual RareVoice Awards, a celebration to honor advocates who give rare disease patients a voice on Capitol Hill and in state government.

Wednesday, November 16, 2016
Arena Stage in Washington, DC

If you know of someone who has been a “Voice” for the rare disease community and should be honored for their work, please click here to submit your nomination.

RareVoice Award nominations are open to the public.  We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders and political advocates in their state and our nation. We have nominations open for the following categories: Congressional Staff, Patient Advocate or Patient Organization (at the state or federal level), and Government Agency Staff.

Deadline to submit nominations is July 31, 2016.

Primary versus revision transsphenoidal resection for nonfunctioning pituitary macroadenomas: matched cohort study

 

Departments of 1Neurosurgery and 2Otolaryngology-Head and Neck Surgery, University of Virginia Health System, Charlottesville, Virginia; and 3Department of Neurosurgery, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts

ABBREVIATIONS DI = diabetes insipidus; GTR = gross-total resection; NFPMA = nonfunctioning pituitary macroadenoma; PFS = progression-free survival;SIADH = syndrome of inappropriate antidiuretic hormone; SRS = stereotactic radiosurgery; STR = subtotal resection; TSR = transsphenoidal resection.

INCLUDE WHEN CITING Published online May 20, 2016; DOI: 10.3171/2016.3.JNS152735.

Correspondence John A. Jane Jr., Department of Neurological Surgery, University of Virginia, Box 800212, Charlottesville, VA 22908. email:.

Abstract

OBJECTIVE

The object of this study was to compare the outcomes of primary and revision transsphenoidal resection (TSR) of nonfunctioning pituitary macroadenomas (NFPMAs) using endoscopic methods.

METHODS

The authors retrospectively reviewed the records of 287 consecutive patients who had undergone endoscopic endonasal TSR for NFPMAs at their institution in the period from 2005 to 2011. Fifty patients who had undergone revision TSR were retrospectively matched for age, sex, and duration of follow-up to 46 patients who had undergone primary TSR. Medical and surgical complications were documented, and Kaplan-Meier analysis was performed to assess rates of radiological progression-free survival (PFS).

RESULTS

The median follow-up periods were 45 and 46 months for the primary and revision TSR groups, respectively. There were no significant differences between the primary and revision groups in rates of new neurological deficit (0 in each), vascular injury (2% vs 0), postoperative CSF leak (6% vs 2%), transient diabetes insipidus (DI; 15% vs 12%), chronic DI (2% vs 2%), chronic sinusitis (4% vs 6%), meningitis (2% vs 2%), epistaxis (7% vs 0), or suprasellar hematoma formation (0 vs 2%). However, patients who underwent primary TSR had significantly higher rates of syndrome of inappropriate antidiuretic hormone (SIADH; 17% vs 4%, p = 0.04). Patients who underwent primary operations also had significantly higher rates of gross-total resection (GTR; 63% vs 28%, p < 0.01) and significantly lower rates of adjuvant radiotherapy (13% vs 42%, p < 0.01). Radiological PFS rates were similar at 2 years (98% vs 96%) and 5 years (87% vs 80%, p = 0.668, log-rank test).

CONCLUSIONS

Patients who underwent primary TSR of NFPMAs experienced higher rates of SIADH than those who underwent revision TSR. Patients who underwent revision TSR were less likely to have GTR of their tumor, although they still had a PFS rate similar to that in patients who underwent primary TSR. This finding may be attributable to an increased rate of adjuvant radiation treatment to subtotally resected tumors in the revision TSR group.

From http://thejns.org/doi/abs/10.3171/2016.3.JNS152735?journalCode=jns

Pituitary Patient Support Group Meeting

pituitary-meeting

Pituitary Patient Support Group Meeting, Saturday May 28, 2016.

Neuro Endocrine expert Dr. Pejman Cohan will be speaking. “From Diagnosis to Treatments”

There will be time for Q&A and lunch served after the meeting.

Meeting 10:30am-11:45am Lunch 11:45am-1:00pm

Location: John Wayne Cancer Institute- 2nd floor conference room, 2200 Santa Monica Blvd. Santa Monica, CA 90404

Free parking with validation, behind building in the JWCI parking lot.

Please RSVP to Sharmyn at  pituitarybuddy@hotmail.com

Download flyer here.

Registration Open for Regional Legislative Conferences and In-District Lobby Days

Rare Disease Legislative Advocates will host In-District Lobby Days to facilitate meetings for rare advocates across the country with their elected federal officials during the summer Congressional recess (July 18th through September 5th).

Registration is open through July 1st.

Federal elected officials need to hear regularly from constituents affected by rare disease.  Meeting with your Representative and Senators throughout the year is critical to building a relationship.  These meetings are an opportunity to invite them to join the Rare Disease Congressional Caucus and to highlight legislation that could be beneficial to the rare disease community.

To help advocates prepare, we are holding regional Legislative Conferences in Boston on June 28th and in both Chicago and Seattle on June 30th. These half-day conferences will feature remarks from federal elected officials, academics, patient advocates and other rare disease stakeholders.  Lunch will be provided. Registration will be available here through June 22nd. Don’t miss the opportunity to learn and network with other local advocates!

We will also hold two preparatory webinars.  The first, to be held on June 16th at 2pm ET/11am PT, will provide an overview of the regional Legislative Conferences and In-District Lobby Days. The second, to be held on July 13th at 2pm ET/11am PT, will cover In-District Lobby Days in more detail including legislative issues which advocates may want to raise in their meetings.

A Team Effort to Treat a Pea-Sized Gland

HYANNIS – Endoscopic surgery for pituitary tumors involves the use of small instruments, but neurosurgeon Nicholas Coppa, MD, FAANS, is quick to say it takes a big team to make the surgeries a success.

“It’s very much a collaborative effort among endocrinology, neurosurgery and otolaryngology specialties,” he said.

Dr. Coppa frequently works with endocrinologist Catalina Norman, MD, PhD, and ear, nose and throat surgeon Ross Johnston, MD.

The pituitary gland sits at the base of the brain. It makes important hormones that control several different systems in the body and help maintain normal body function.

“The overwhelming majority of patients with big tumors present with visual problems,” said Dr. Coppa. “They get tunnel vision from a tumor putting pressure on the vision nerves.

Many patients’ pituitary problems are detected incidentally while the physician is trying to diagnose a set of symptoms, most commonly headaches, he added. A variety of asymptomatic tumors are detected this way.

A subset of pituitary tumors secrete excess hormones, which create syndromes characterized by whatever hormone is being secreted in excess, Dr. Coppa added. Oftentimes these problems are diagnosed by an endocrinologist.

Before coming to Neurosurgeons of Cape Cod – now known as Cape Cod Healthcare Neurosurgery – in 2013, Dr. Coppa was professor of skull base surgery at Oregon Health and Science University’s Northwest Pituitary Center. He has performed more than 200 endoscopic surgeries for pituitary tumors, sinonasal malignancies and anterior skull base encephaloceles. The procedure is fairly new on Cape Cod, he said.

The pituitary gland is about the size of a pea, so operating on it is a tricky and delicate procedure.

The surgeon commonly works with an endoscope inserted through one nostril, and microsurgical instruments through the other nostril. This allows him to maneuver to the surgical area.

According to the Northwest Pituitary Center’s web site, “The tube is connected to a TV monitor that helps your doctor see the surgical area even more clearly than with a microscope. Your doctor can also use intraoperative neuro-navigation to perform image-guided surgery, based on a pre-operative CT scan or MRI. This helps the doctor see exactly where the tumor is and avoid damaging healthy brain tissue that is nearby.”

Nasal endoscopy for the neurosurgeon has really taken off in the last 10 years, according to Dr. Coppa. The main reason for the increase is because the technique allows better visualization of the anatomy, he said.

“We find that it allows, at least in my experience, more maneuverability of your micro-surgical instruments. That’s been very satisfying for patients. The nasal morbidity [adverse effects] is lower compared to historic ways of doing it.”

Ear, nose and throat doctors use trans-nasal surgery to treat many sinus conditions, said Dr. Coppa. But the procedure is predominantly used by neurosurgeons for pituitary tumors, other tumors of the skull base and malignancies of the sinus cavity that often invade the brain.

After endoscopic pituitary surgery, patients are typically in the hospital for several days and resume day-to-day activities within that first week.

By BILL O’NEILL, OneCape Health News

 

From http://www.capecod.com/newscenter/a-team-effort-to-treat-a-pea-sized-gland/

%d bloggers like this: