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Posts (16)

Wed, Jun 12 10:23pm · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

I did not have much of a voice. It was very weak and raspy. I couldn’t talk on the phone. This is because my vagus nerve was severed and therefore my left vocal cord is paralyzed. A couple of months later I had an injection into the vocal cord to plump it up so that my cords could again come together and make sound. It isn’t perfect but it is so much better than it was. I also sometimes have trouble swallowing clear liquids as they go down so fast and can go down the wrong tube. I try to always use a straw and that helps a lot. All in all, much better than before surgery!

Wed, Jun 5 7:55pm · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

I am so sorry that I totally missed this message 😪 I did not test positive for any mutations. Whew! I have two adult kids (they were in high school and college at the time) who are worriers. So I didn’t tell them anything about the genetic side until I had the results. But what the endo told me is that if I tested positive and then they did that they would be monitored closely. Any tumors they were found would be taken care of before they were as big as mine. I pray that you are still able to expand your family. Please keep me posted on your progress!

Wed, Jun 5 7:47pm · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

Wishing you the best of luck! It seems that a lot of people have to find their own answers because so many doctors don’t know much about these tumors. I was one of the lucky ones!

Sun, Jun 2 7:29pm · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

I’m not sure if you looked through prior posts, but if you’re on Facebook I strongly encourage you to join the group Pheochromocytoma and Paraganglioma Support Group. There is so much great information out there. FYI a pheo is a paraganglioma inside the nerve sheath. I was fortunate that my primary doctor knew what a para was and referred me to a surgeon who had actually removed a few. So they knew what I was dealing with. And they knew enough to refer me on to Mayo where they had dealt with many more. I too had symptoms that I thought were possibly mono or depression, and at one point was in the ER because I thought I was having a heart attack. I am so glad my para is gone! I hope you get some relief soon.

Sun, Jun 2 2:48pm · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

Welcome Ristene! I am sure you are feeling very overwhelmed right now, which is understandable. These are rare tumors and it is hard to find doctors that are familiar with them. My diagnosis was a carotid body tumor (CBT) but during surgery was found to be a vagus tumor instead. To answer your questions:
1. I was diagnosed in October 2016 by my primary care doctor. She could feel the lump in my neck and immediately ordered a CT scan and ultrasound.
2. I was referred to a vascular surgeon who sent me on to Mayo. I had surgery in December 2016 with a vascular and ENT surgeon. I also had a consult with an endocrinologist.
3. Mayo is the place to go!
4. My endocrinologist was Dr. Young, vascular was Dr. Bower and ENT Dr. Kasperbauer. I cannot say enough good things about them!
5. My tumor was entangled with my vagus nerve which controls swallowing and speech. I did lose my voice for the most part as my vocal cord on that side is paralyzed. A couple of months after surgery I went back to Mayo for an injection. My voice is not quite as strong as it once was but I am the only one that notices. I also had a little trouble swallowing in the beginning but that is much better now.
6. My outcome was great! Even with the side effects, it is much better than the extreme fatigue and nausea I had prior to removal.

If you have any questions please ask! I wish you the best of luck!!
Shari

Thu, May 16 7:20pm · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

I had great care at Mayo but have no idea about anywhere else. If you are on Facebook, there is a very helpful page called Pheochromocytoms and Paraganglioma Support Group. If others have been treated there they can give you some insight on care received. These are rare tumors and it is difficult to find an experienced doctor. That is much more important than traveling distance! That is how I found out these tumors should NEVER be biopsied before removal. Good thing my surgeon already knew that! Wishing you the best of luck on this journey.

Mon, Apr 1 6:42am · Paraganglioma / Carotid Body Tumor Question in Neuroendocrine Tumors (NETs)

I have to admit that I don’t know much about mets or any of that. My endocrinologist at Mayo gave me the option to do genetic testing, which I did and the result was negative. Had it been positive I would have had my kids tested.

Wherever you get treatment at, it’s important to find a doctor with experience with these kind of tumors. They are rare. If they think it is a para it should NOT be biopsied as they can secrete and cause lots of problems.

I hope you find some answers. I will be thinking of you! If you are not a fan of Facebook, one of your family members could join the group and get info for you. I cannot stress enough the amount of knowledge there from the people that have lived with this. Also which doctors to see etc. Keep us posted on your treatment please!