Paraganglioma / Carotid Body Tumor Question

@hopeful33250 @sharik I will certainly share updates. I do have another question (probably more to come too). I have an appointment set with an endocrinologist here locally. Originally this was set up to start me on preop meds, when they thought it was a pheo and a local doc was possibly going to do surgery (I had lots of questions b4 I would have let that happen.) Anyway, since it is a para instead and they are going to refer me to Mayo, should I follow through with this endo appointment? My blood pressure has only been slightly elevated, not enough I feel to require meds. However, if the meds can help control potentially dangerous spikes due to episodes, I think maybe I should follow through with the appointment. Then I wonder if the doc will know enough about para to prescribe the correct meds. So I go back to thinking I should just wait for any more appointments until I can get to Mayo. Lots of info there and I realize the right answer may be hard to determine but I would appreciate any experience, thoughts, etc.. on this.

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!

Hi Teresa,

Yes, my video appointment was fantastic and informative. I’m glad I decided to do it. Thank you for asking.

Next steps to come.

Barb

Thank you for your interest, @hopeful33250! When I say no following doctor- JH doc is a bladder ca doc, tumor was in bladder but NOT bladder cancer. My uro who was treating me for bladder ca is here. He knows nothing about any of this dx. JH doc said monitor yearly with PET/MRI and cystoscopy. Uro here carrying out orders. Other than that, I don't know who would respond to suspicion of a tumor. JH doc said I could return to their neuroendocrine team if needed. I am monitored at my local cancer center for hemochromatosis and they won't oversee it b/c they said it is too rare. Yes, I'm assuming the AP window defect is congenital. I have always had a murmur, but didn't know the cause. I can only assume this is it.

I was reading a post above and am a bit concerned b/c I have been having sweats, flushing, higher blood pressures and headaches, which I usually do not have. What could be done at the local level to begin? (Metanephrines, 24-hour urines?) I came off prednisone for cellulitis of face about 9 days ago. Seems to have started during that. I have also pretty much cut out sugar after having been a sugar addict. I am so confused as to what may be what. Thoughts?

Peace, Joy and Good Health to All,
Susan

Hello,
Thanks for reaching out. Truthfully? I am lost. I think I am okay, other than that after a final annual follow-up cystoscopy and CT in December I will no longer be monitored. I have had a couple of scans since posting for this and other reasons (also have hemochromatosis), such as an adrenal "adenoma" and liver "hemangioma," which has been followed since 2013. I am concerned that "lymph nodes" (mediastinal, aortopulmonary window, etc.) have been seen on these scans, including the PET I had a couple years ago. They are called things like "nonspecific," etc. I was told by JH bladder doc that my tumor was benign and shouldn't come back. The "plan" was for annual CTs/cystoscopies through end of this year... then, NOTHING.

I need to know how to have this monitored here at home (Gloucester, VA), as I do not have anyone to assist me or to go to these "far-away places" that it seems we all must go. I do have face flushing, occasional palpitations, often look pale and deal with extreme blood sugar drops (to 55 within minutes of "feeling" it come on). I eat sugar and it goes away within 15-20 minutes. There is no rhyme or reason to those, with regard to eating (except when I eat something like a donut in the morning and then end up tanking). I am known as "nervous Nellie" because of my anxiety and have been convinced that it's a psych issue. I have a basic distrust of all things medical, resulting from my misdiagnosis/treatments that ensued unnecessarily. Even my hemochromatosis oncologist has no clue what paraganglioma/pheochromocytoma are. It is more perplexing, although much appreciated, that I have the worst gene combo for the hemochromatosis (two C282Ys) and haven't had to have phlebotomy since the induction phase in 2013. I eat what I want and take a calcium tablet with high-iron/all full meals, as it prevents the absorption of iron- grateful beyond measure, but concerned. All of this is very upsetting and too big to deal with on my own, so I just go on. I have chosen to be alone, so I am not seeking pity at all; it is what it is.

Does anyone know what protocol should be followed and for how long or how I could be monitored from here?

Again, thanks for reaching out. I think I "disappeared" because it was much easier to just block it out. I hope and pray for the health, happiness and well-being of all,

Susan

Hello @northwoodsbarb

I noticed that it has been several months since you last posted. How are you doing? Have you had any treatments that you would like to discuss, or any questions?

Hi,

Sorry about having been remiss about writing here. I just started back working at pk-8 school a couple of weeks after my surgery and it’s busy!

As I referenced, I did have the surgery at Mayo to remove the paraganglioma from my neck. This was mid-August. I went into surgery thinking that I would have to have my vagus nerve severed, and I would have to learn to talk and swallow. In the recovery room, I asked for ice and then said, “I can talk!” I chewed the ice and said, “ and I can swallow!” I haven’t stopped talking since.

The tumor was not on the vagus nerve, but near it. I have some nerve issues (look up Horner syndrome), but it seems like no one notices.

Thank you for asking. Mayo is the best.