My story actually begins about five years ago when I was diagnosed for the first time with hypertension. There is a family history of hypertension, so I just looked at it as the inevitable course my body had taken. However, blood pressure medicine either didn’t work or caused an allergic reaction. So after a few months, I decided to just live with it and move on with life.

That continued until November 2011 when I had a severe blood pressure spike. Over the next few months, I took a passive approach to figuring out what may have been wrong, but that ended in March 2012. My cardiologist suspected sleep apnea, which I was negative for. Upon having a 24 hour holter monitor, that’s when things got interesting. I was told I had a 2nd degree AV block type 2, which for my age was very unusual. It was decided that I would need a pacemaker, but we needed to make sure I didn’t have any blockages first. On March 30, 2012 a cardiac catherterization was done, and that showed a mass attached to the back of the left atrium. A few scans and one biopsy later, I was diagnosed with a posterior mediastinum retro- cardiac paraganglioma.

What is a Paraganglioma?

Paragangliomas are rare neuroendocrine tumors that can secrete catecholamines into your system and spike your blood pressure; causing a stroke or heart attack. Typically this kind of tumor occurs on the adrenal glands, and when they do, they are called pheochromocytoma. It is more rare for them to occur outside the adrenal glands, but when they do, they are called paragangliomas.

Upon doing some research, I found the National Institutes of Health who had a pheochromocytoma and paraganglioma protocol. They were able to use the latest scanners to get a good look at the tumor, and in June 2012, I had open-heart surgery to remove it. The tumor was attached to the back of the left atrium as well as two of the major coronary arteries; all of which were repaired with gore-tex patches. Though I am in good health today, I have to be monitored every four to six months for the rest of my life because the chance of recurrence or metastasis is relatively high.

17 thoughts on “Paraganglioma and Open Heart Surgery: Travis Retells How He was Diagnosed”

  1. Heather says:

    Wow! How interesting this name – struck me. My brain tumor is called “gangliocytoma”. Glad you’re doing well!

  2. Travis Stanley says:

    Thanks, Heather. It would seem that your tumor and mine do share a somewhat similar path. Both form from the ganglion cells in the nervous system. Paragangliomas and pheochromocytomas (the twin version of this tumor that arises on adrenal glands), fall under the neuroendocrine cancer umbrella. I hope you are well and thank you for the kinds words.

  3. LG says:

    I was glad to come across your story. I had a pheo. tumor removed from my left abdominal wall (rare location). The experience was very life threatening. It was a horrific experience. Post surgery, I was instantly (same day!) and amazingly better! Now, three years later, I have symptoms again, but I don’t believe another pheo. tumor has returned. That has been ruled out. However, I have extreme, instant (in seconds!) blood pressure surges (over 200) like before including when I lie down, but I’ve also developed problems with upper motor balance and occasional slurred speech, and significant incontinence. I’d like to know if pheo. patients can have post symptoms that are not from a reoccurrence of a pheo. tumor. I’d like to understand what is happening to me! I’m age 53.

  4. Travis Stanley says:

    Hi LG,
    How did they rule out pheo for you? Did you have all the biochemical tests again along with scans. Sometimes these things are very small and hard to find and not all of them secrete catecholamines. From your symptoms, it sure sounds like typical pheo symptoms. Also did you have genetic testing done? There is a closed facebook group dedicated to supporting pheo and para patients. They have been a tremendous help to me. If you aren’t already a member, I highly suggest looking them up. Good luck!

  5. Ola says:

    My mom was recently diagnosed with this same form of tumor on her heart. After an attempt at open heart surgery to remove it, the doctor told us that he was unable to remove. It would be good to have a second opinion but don’t really know that best way to go about it.

  6. Travis Stanley says:

    Ola,
    The National Institutes of Health in Bethesda, MD was where I was treated. There is also a private group on facebook where you can get more information as well from people like me who have been through similar experiences. E-mail me at tastanley78@yahoo.com and I will be happy to give you more details.

  7. Carol says:

    I have a glomus vagale tumor in the head and neck area. Would like to hear from others who may have this type of tumor.

  8. Travis Stanley says:

    Hi Carol,
    There is a Pheochromocytoma/ Paraganglioma support group on facebook. It is a closed group for patients and caregivers across the world. Currently we have over 800 members and many have had head and neck paragangliomas. Do a search on facebook for the group and ask for permission to join, and you will find a wealth of knowledgeable, caring people who have gone through a similar ordeal.

  9. Christine says:

    Since this is so rare I had to find it my self. This paraganglioma was growing out of my heart. They did a biopsy then went in my right side only to go through my chest 12 hours later. No warning. Since it is rare I guess no one knew what it was and to my surprise my stitches we’re taken less than two weeks and was told I could drive. Told me it wasn’t cancer. Found some unknown tissue in my nose didn’t know until I read post on a pathology report. Also unknown tissue was unknown. I have read your information and small rely scared because nothing was done in the manner it should have. I guess I was treated like a heart patient. So I am concerned and need advice and someone who knows about this rare problem I have. I think I need MRI of brain and neck just to make sure I don’t have it any place else. Scared confused and seeking knowledge of what to do. It was 5.1 cm growing out my heart attached to its left side and growing over my wind pipe. Had an mri had been done I would not have had the surgery on my left side. I realize this is 2 out of a million so the doctors never seen this and probably won’t again.

  10. Christine says:

    Thank you I will. 🌺

  11. Travis Stanley says:

    Hi, There is a facebook support group that can give you more information. I am one of the admins there. Search for Pheochromocytoma and Paraganglioma Support Group and make a request to join. Best of luck!

  12. Christine says:

    It needs to be removed by a vascular heart surgeon. It is very life threating Florida Hospital has great information on this. One in a million get this. I had the same thing. Keep going until you find the right Doctor. Since is so rare not many understand it. You cannot live with it it gets worse. Mine was 5.1 cm attached to the left side. My doctor Khon in Baton Rouge LA was able to remove it all. CVT in Baton Rouge, LA they have a website on face book. I had to change doctors to finally get the ball moving to even find out what I had. Don’t give up this is very dangerous.

  13. Christine says:

    I would keep looking. I found information on testing on the Florida Hospital website and put in paraganglomia in search engine and there was a lot of information there. I just had surgery , mine was 5.1 mass attached it my heart. It took me changing doctors and keep going to even find it by chance. Totally wasn’t looking or expecting to find what I had. How did they rule it out? I knew my body I knew something was different I did not quite looking in the next place. Follow your instinct they are hard to find and diagnose. There is a urine test that is done over a period of 24 hours to see if adrenaline is spiked and other test on there too.

  14. Dee Rincon says:

    Travis,
    Thank you for having this site so people can write in to inform people of this rare tumor. I had open heart surgery on March 14 and am doing very well. I also have a nodule on my left adrenal gland, and will probably have removed. I read that if it didn’t grow in 6 months-one ear, not to worry about that. However, it seems these tumor have unknown behavior making me believe it can turn cancerous. I had great surgeons and hospital. It took months to get a diagnosis until I had a CT scan. I hope you are tumor free and wish you good health. Did you have genetic testing? I am thinking about pursuing that. Dee Rincon

  15. Dee Rincon says:

    Hi Travis,
    Sorry I left out important part of my story. I had a paraganglioma on my aortic arch removed on March 14.
    Dee

  16. Ola says:

    My mom had surgery on her left atrial paraganglioma in January 2014. Dr Michael J. Reardon, M.D. @ Houston Methodist Hospital was the surgeon.
    Unfortunately, the surgery didn’t go well and she had to have her chest left open while heavily sedated for about two weeks to allow time for her heart to recover and swelling to reduce to allow them to close her chest. After this it was a long road of hospitalization, long term acute care and rehab before she passed away in October 2014.

  17. Travis Stanley says:

    Hi Dee,
    I did have genetic testing through Ambry genetics. Ten genes were tested and I was negative for all 10. Since that time, about 7 more genes have been discovered that cause pheo/para. I will get checked again in the near future. There is a possibility it is genetic, so if you have children, I would definitely recommend it,

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