Paraganglioma / Carotid Body Tumor Question

Shari, that's so great to hear that you are doing so well!!! Did you have genetic testing done? I am honestly too scalpel shy to get a surgical opinion. Right now it seems that radiation is going to be the best option. I've been told by many doctors now that surgical intervention is not an option and could be fatal given the vascular nature of the tumor location along with the nerve involvement. I'm gearing up for evaluation at the SCCA proton beam radiation therapy center in Seattle WA for evaluation with the founder of the center. It is the closest proton beam radiation center near to MT in a 6 state radius. A 7 to 8 hour drive from where I currently reside. The literature for paraganglioma treated with octreotide shows promising tumor size reduction by 3-11%. This paired with the proton radiation is the most recent treatment option that has been recommended. I will continue to see Dr Pacak and his team at the NIH every 3 to 6 months after my treatment start. I do feel I am in great hands there. Given that I am SDHB ( B for Bad) I am at high risk for secondary malignancy and will need continued supervision for the rest of my life. This is my new "normal". I am not going to say it has been an easy adjust especially because my husband and I were trying to have another child for 7 months before I found out. We have a 4 year old daughter who is the light of our lives. Her genetic testing is pending at the NIH as we did not know prior to having her. The sooner we know the better for disease monitoring and outcomes. The mutation is heterozygous and there is a 50% chance that she has the mutation. Most of my time has been spent researching, reading and deciding what my next move is going to be. I appreciate your feedback!
Best wishes,
Ristene

I'm new to this site and just beginning testing. I've suffered for over twenty years with these symptoms. I have been to so many specialists with these symptoms and no one cared to look into this, until now. My new doctor is my hero. I feel so blessed having found him. I want to say something if anyone is just getting started like me, just getting tested for Pheochromocytoma. My lab in Southern California failed to give me instructions so my results are delayed and I have to repeat all my 24hour testing. I have taken the "proactive" patient approach the second time around and looked up all the things that would affect my results, there is a lot. It is sad that these professional individuals failed me as a patient and delayed my treatment. I'm excited when the day comes when I no longer soak out my clothes, my hair and be able to go out without feeling like I'm going to die because I'm so hot or have a heart attack.

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!

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!

I had a paranglioma in the left skull base in the vagus nerve and pushing the carotid. Thank God it was not benign as most of these are. I went to Mayo Clinic and Dr Philip Pirgousis did the surgery, which was very complicated because of the location of the tumor. He didn't want to do a biopsy.

My nerves were only manipulated but none of them damaged so that was very good but still working on some side effects of that surgery.

I recommend Dr Pirgousis very much !

Hello @cootiesgirl1 , I had a paraganglioma on my skull base that was removed on Dec 2018 in Mayo Clinic. Where do you have it ? how are you doing ?

hello @sharik , any consequences after the surgery ?

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!

Hello, everyone. It's been a while since I've been on- basically in denial mode for mental survival. Have had to take a break from the emotional strain I had been under since July1 2018 when dx with "high grade urothelial bladder cancer" (AND TREATED FOR 9 MONTHS), which Johns Hopkins correctly diagnosed as paraganglioma of the bladder. That's where my tumor was making it even more of a rarity.

I had both ovaries/tubes removed 8 weeks ago d/t "cyst" changing in composition. I had a partial hysterectomy in 2006. All was benign, praise God. Anyhow, I had a PET in April this year that showed "possible reactive lymph node" at aortopulmonary window (defect where aorta/pulmonary vein connected by small vessel allowing blood to go through), no evidence of metastasis. My local uro consulted bladder ca doc at JH and he said it didn't "look" typical and the uptake wasn't too much to just "watch" it. So, I will have another PET and cystoscopy at end of the year and then yearly.

I had metanephrines done before the GYN surgery which were negative.

I recently developed a cellulitis of the face and was put on prednisone and 200 mg Keflex daily x10 days. The doc didn't do a taper so I did my own. I have been off of it for 4 days, but I have been sweating, weak, having headaches intermittently. My blood pressure was up yesterday, 145/84. I usually run 117/78. I will keep monitoring it. I have gained 20 lbs in the last year.

Long story short- I do not have a "following" doc. My uro can consult JH doc but there is no one here to follow. JH doc says if needed I can return to JH to their neuroendocrine team. There is no way I can be a patient of MC, as much as I would like to. I am single, no family and work full time.

Right now I am wondering if I need to see a cardiologist d/t the AP window defect found on my PET (always knew I had a murmur but didn't know what was causing it). I am just over all of this. I need to be normal!

Thank you all for checking in and for sharing your stories. You are all in my daily prayers and I pray for your continued health and happiness 🙂

Hello @cootiesgirl1

It is good to hear from you. I appreciate the update. You have certainly experienced a number of problems and I hope that you are on the right track now. When you say you have no "following doctor" I'm assuming you mean and internist/PCP who oversees your general health and what all the specialists are doing. Can John Hopkins offer you any referrals to an internist who will follow up as your PCP?

It does sound as if a consult with a cardiologist would be a good idea. Has John Hopkins mentioned you seeing one of their cardiologists? Is the AP Window Defect a congenital problem (from birth)?

Please continue to post, @cootiesgirl1. We all learn from each other and it sounds as if you have had a lot of experiences to share. I wish you well as you seek the best medical care for your many health concerns.

Will you post again and provide an update?