Paragangliomas

Canadian surgeon?

feeds@yuku.com (janrose) — Sat, 22 Aug 2009 15:22:04 GMT

I am one of 4 sisters who all have paragangliomas. Three of us live in the U.S. and the most newly diagnosed (last week) lives in Ontario, Canada.

We have done a lot of research on surgeons with expertise in paragangliomas in the U.S. and have found some great ones in Boston and New York. But we do not know of any paraganglioma experts in Canada. Does anyone know where to begin?

Questions

feeds@yuku.com (kristab) — Mon, 22 Jun 2009 09:56:31 GMT

I can't believe I found this site. I need some help.

I had bilateral carotid body tumors and carry the SDHD gene. I had surgery in 2001 and 2003 to remove the tumors, and now the tumor has returned on the left side. I am currently in a wait and see mode. Wait and see how much it grows and than have yet another surgery!!

I have several questions since this seems to be the place to go. I can't tell you how many doctors I have seen including 3 endocrinologists...

Bilateral carotid and trachea paraganglioma

feeds@yuku.com (gtghawaii) — Sat, 13 Jun 2009 12:52:36 GMT

I started having problems with my voice in 2002 so I went to see an ENT who diagnosed a paralyzed vocal chord but couldn't determine the cause. I had collagen injections for my voice but in 2008 it had stopped working and my left tongue was paralyzed so I went to UCLA for their ENT specialist. After a year of tests I have been diagnosed with bilateral carotid and trachea paragangliomas and thyroid cancer. I had a total thyroidectomy. The surgeons have told me the paragangliomas are...

Pheochromocytoma/ Paraganglioma Research Study Interview

feeds@yuku.com (victoriad) — Fri, 08 May 2009 06:04:10 GMT

Have you been diagnosed with pheochromocytoma or paraganglioma?

We are interviewing individuals to understand whether two questionnaires are appropriate for use with participants with these conditions.
For more information please call:
Oxford Outcomes Inc
Victoria- 240-482-0034 x. 26
victoria.divino@oxfordoutcomes.com

The interview would last approximately 1 hour and you will be reimbursed for your...

List of recommended head and neck surgeons

feeds@yuku.com (tues1day) — Fri, 01 May 2009 07:03:14 GMT

I think it is important for us to identify surgeons who can be recommended by previous patients who have undergone successful head and neck surgery with hopefully a minimum number of long lasting side effects or complications.

If you are able to give us the name and location of your surgeon…we would really appreciate it. It could be very valuable information for current and future members requiring surgery.

You may send the info to my inbox if you do not wish to make a...

Pheochromocytoma and Paraganglioma: 2008 article by Dr. Karel Pacak of the NIH

feeds@yuku.com (tues1day) — Wed, 22 Apr 2009 10:31:27 GMT

Pheochromocytoma and Paraganglioma
An article by Karel Pacek, MD
Pheochromocytoma

http://www.pheo-para-alliance.org/sites/all/themes/custom/vanilla/images/PheoAndPara_byKPacek.pdf

need prof advise on who to believe and what to do next

feeds@yuku.com (stampalot) — Mon, 13 Apr 2009 20:04:22 GMT

Hi,
I am a 35 yr old mother of 5 children, I've been very sick since Christmas Eve of this year, mostly in bed since then.
I sought medical attention for my first ever sinus infection, after 3 Dr.'s told me I didn't have a sinus infection, I went to an ENT in Jan 09. While there he told me the lump on my throat should be diagnosed....so after MRI diagnosed wtih a carotid body paraganglioma in my neck about 5 cm. and MRI said minor sinus disease; but that's on the...

Incidence of carotid body tumors and pheos?

feeds@yuku.com (JoyA) — Mon, 26 Jan 2009 16:21:41 GMT

I was diagnosed with bilateral carotid body tumors in the summer of 2005. The CBT on the left side was excised, but the other was considered too small to worry about. The one on the left was a visible lump in my neck while the one on the right didn't even show up in CT scans or MRIs. It was discovered during the arteriogram and embolization performed the day before surgery. My father had bilateral CBT's and so did a cousin. My half sister had a paraganglioma on her adrenal gland. I am...

Possible Paraganglioma - Diagnosis

feeds@yuku.com (126goetz) — Tue, 15 Jul 2008 22:14:45 GMT

History
Hello. I am a 31 year old male living in Southern California. I have been trying to figure out what has been happening to me since November 2007. This un-nerving experience started with a my wife driving me to the ER after paramedics said I was in non-critical condition. That night I was lying in bed watching TV about to go to sleep for the evening and laid down only to have a sudden wave come over me. This wave included heart racing/palpations, sheet white/clammy...

blood pressure meds

feeds@yuku.com (Unregistered(d)) — Sun, 30 Mar 2008 06:34:20 GMT

David's paraganglioma has worsened. He is undergoing chemo, but his bp is causing problems. He was in the hospital for a week beginning with chest pressure symptoms (no heart attack or heart problems), but kept losing consciousness even when sitting. Cardiologist is trying bp meds - now on Labetalol (Normodyne), but still has syncopy...He has taken Cardura and Dibenziline, and may go back to one of them. Is anyone having success with any BP meds we could try?

Catecholamine-Secreting Paragangliomas at the Skull Base

feeds@yuku.com (tues1day) — Thu, 27 Mar 2008 16:21:30 GMT

Skull base surgery. 1996 January; 6(1): 3545. PMCID: PMC1656505
Copyright notice

Catecholamine-Secreting Paragangliomas at the Skull Base

Rudolf Kuhweide, Michael J. Lanser, and Ugo Fisch

Abstract

Paragangliomas (glomus tumors) comprise 15% of all neoplasms at the skull base. Despite extensive growth, these tumors usually do not secrete active biogenic substances into the circulation in sufficient quantities to produce symptoms. When...

Clinical Trials re: Paraganglioma Genetic Testing/Studies

feeds@yuku.com (Carolinakin) — Mon, 11 Feb 2008 15:56:56 GMT

A list of Clinical trials and Centers related to Paraganglioma/Pheochromocytoma:

NIH Pheo/Paraganglioma: Title: Diagnosis, Pathophysiology, and Molecular Biology of Pheochromocytoma
clinicalstudies.info.nih....-0093.html

Clinical Trials....

Management for carotid body paragangliomas

feeds@yuku.com (tues1day) — Thu, 24 Jan 2008 15:57:02 GMT

note: This is an interesting article that Cheryl (Carolinakin) recently quoted from:

Interact CardioVasc Thorac Surg 2006;5:692-695. doi:10.1510/icvts.2006.13577

Institutional report - Carotid and imaging

Management for carotid body paragangliomas

Devender Singh*, Rama Krishna Pinjala, Rama Chandra...

MIBG scans in patients with chemodectomas of head/neck

feeds@yuku.com (tues1day) — Tue, 22 Jan 2008 23:03:04 GMT
Iodine- 123-Metaiodobenzylguanidine
Scintigraphy in Patients with Chemodectomas
of the Head and Neck Region

A.P.G. van Gils, A.G.L. van der Mey, R.P.L.M. Hoogma, T.H.M. Falke, A.J. Moolenaar, E.K.J. Pauwels,
and M.J.P.G. van Kroonenburgh

Departments ofDiagnostic Radiology (Division ofNuclear Medicine), Otolaryngology, Internal Medicine (Division of
Endocrinology), and Chemical Pathology,...

Extraadrenal Paragangliomas of the Body: imaging features

feeds@yuku.com (tues1day) — Tue, 22 Jan 2008 17:52:20 GMT
DOI:10.2214/AJR.05.0370
AJR 2006; 187:492-504
© American Roentgen Ray Society

Pictorial Essay
Extraadrenal Paragangliomas of the Body: Imaging Features

Ki Yeol Lee1, Yu-Whan Oh1, Hyung Jun Noh1, Yu Jin Lee1, Hwan-Seok Yong1, Eun-Young Kang1, Kyeong Ah Kim1 and Nam Joon Lee1...

Tumors in neck

feeds@yuku.com (Unregistered(d)) — Tue, 22 Jan 2008 09:18:27 GMT
Hello. I'm back - this time looking for information to help my mother. I had a 4.5 tumor removed from my abdomen (close to my aorta) in July of 2005 after many years of symptoms/suffering. Once I was diagnosed with extra-adrenal pheo, I immediately encouraged my mother to undergo testing. She has MANY pheo symptoms and has struggled with uncontrolled high blood pressure since she was 14 years old. She is now on 4 meds with limited success. Her initial urine tests were negative (fall of 2005)....

Carotid Body Tumor

feeds@yuku.com (merry2u) — Sun, 06 Jan 2008 05:31:58 GMT
Hi,
I was just diagnosed with a carotid body tumor. I found this site by searching for information. From what I read most of these tumors are benign. Does anyone have any experience or insight that they would share?
I'm trying to do my homework and be prepared for whatever may come. Thanks for any input!

Merry

Carotid Body Tumor

feeds@yuku.com (merry2u) — Sat, 05 Jan 2008 10:46:24 GMT
Hi,
I was just diagnosed with a carotid body tumor. I found this site by searching for information. From what I read most of these tumors are benign. Does anyone have any experience or insight that they would share?
I'm trying to do my homework and be prepared for whatever may come. Thanks for any input!

Merry

Child with Paraganglioma

feeds@yuku.com (iamflasunshine) — Wed, 02 Jan 2008 19:10:56 GMT
My grand daughter was diagnosed with a mass in her chest near her spine and between her shoulder blades. She was admitted to Fletcher Allen's Health Care, Vermont's Children's Hospital on Nov 20th.

They first told us that it was Pheochromocytoma, but after a couple days they said it was a Paraganglioma. Her blood pressure was very high and they could not get it under control to do a biopsy. The tumor was large and a small tail was in her spine. After the surgeon's studied the X-rays...

Back again!

feeds@yuku.com (KumateKing) — Thu, 20 Dec 2007 07:58:55 GMT
I found this board about 2 years ago when I was found to have a paraganglioma above my right kidney conected to my vena cava and aorta. It was removed at IU Hospital in Indianpolis IN in October of 2005. In the summer of 2006 and again in the winter I had my blood checked and the levels were normal but I felt something was wrong and asked for a scan to be done, my Endo did not want to scan due to my levels being normal so it was not done. I lost my Insurance in January of 2007 and did not...