Paraganglioma / Carotid Body Tumor Question

I know that every patient is different, treatments are different, and people respond differently. I was interested in your comment about recovery, how long it took. It must have been very debilitating while it lasted. I'm sure my doctor will have a lot of information for me when I see him on the 10th. I've been through so many things in my life that I don't worry much about anything any more, just take care of whatever comes whenever it arrives.

Hello. Just curious if you had any symptoms that led to your diagnosis, and if so, what they were.

The reason I went to my doctor was because I was so tired that I was having a hard time functioning. She felt the lump in my neck during her exam. I had thought it was just a swollen lymph node. CT scan and ultrasound showed the tumor. In looking back, for over a year, when I rolled over to my left side in bed I had a strong nauseous feeling that went away when I rolled back. Also I was in the ER a few months before diagnosis because I felt like I was having a heart attack. I now think I ate or drank something that restricted my airway. Combined with the restriction the tumor was also doing, it made it more difficult to breathe which caused me to panic.

I had no noticeable symptoms. As I was shaving, I found a small lump at the back edge of my jaw, just behind my ear lobe. It was so small that I didn't pay much attention. Two or three weeks later it was noticeably larger, so I made an appointment with my general practitioner. He put me on a broad spectrum antibiotic for 10 days, during which time the lump continued to grow. He referred me to an otolaryngologist (head and neck doctor). There was another wait before seeing him, and he referred me to a surgeon for a needle biopsy. Another wait for the appointment, then another wait for results. It was diagnosed as a malignant carotid-body ganglioma. They referred me to a cancer treatment center, another wait, but I finally go there in two days. During all of that time, the little pea-size tumor has grown to about an inch and a half, and I have started having night sweats that soak my pillow and sheets. I hope to find out what the treatment will consist of, and what the side effects might be like. I have done a lot of searching online, and seen incidence rates ranging from 1/30000 to about 3/ 1,000,000. Men, like myself, are 1/2 as likely as women to have it. Of the ones who have it, it is malignant about 10-20% of the time. So what are the odds of me having what I have? Not much. I have been through too much in my 74 years to be worried now. But I never have liked to be kept in suspense.

Thank you for your comment. I am having symptoms that align more with adrenal issues or possibly some form of POTS. I was just curious because I know these types of tumors can also cause the symptoms I experience, but that they are rare.

Wow. I am 34 and have also been through a lot in the medical world, I can only hope to make it to 74. I used to think I’d never want to be that age but now I want nothing more than to feel better and continue raising my amazing daughter. I hope everything goes well for you with your visit.

I once saw an anniversary card that showed a little boy and girl riding in their pedal car . It said something like, " It doesn't matter where you're going, but who you travel with". My wife and I have been married 51 years, and have had enough troubles to make us appreciate the good times. Life without barren hilltops and lush green valleys would be boring. So much for philosophizing.

Dear puddknocker,

I had a big para in the skull base in the vagus nerve, I always knew it was benign but what I didn’t know where the real after effects of the surgery. A very tricky place to grow..: to be honest I’ve never heard about the vagus nerve before until my para.

I had a very long surgery (around 11 hours), they cut my bones in the jaw so they could reach the para. I don’t remember anything, not even being the the recovery area. I just found myself in my room with my family around.

I never had any pain whatsoever, I was very swollen where the surgery took place but the 1st symptom that something was not well was that I couldn’t even swallow my saliva. I told this to the doctor and he kept telling me everything was in in head and that I had to eat so I could be released. I couldn’t eat or drink anything. Also my left vocal chord collapsed, so I had a very low voice and I had Horner’s Syndrome (my left eye had fallen noticeable).

Days went by and I heard the same “it’s all in my head” , a therapist came and we started working without any success but nobody really believed me. I was desperate and very frustrated as I never expected or knew this could happen.

I was released from the hospital after 9 days with the promise that I would eat/drink, it was a couple of days before Christmas so usually they send many patients home.

I am not American nor live in the US. I am Peruvian and live in Lima so I was not going back home but to a hotel with my family. I had a control appointment on Dec 27th.

I remember clearly trying to eat or drink whatever and I couldn’t, I started loosing a lot of weight and was weak. Maybe I managed to drink 1 bottle of protein shake during the day and with a lot of effort. When I went back to Mayo I was in a very bad state, they made this exam in where you drink/eat something in a XRay machine and whatever could go through my throat was going directo to my lungs. No good news. That was a red alert because I was in the way to have pneumonia.

Immediately they told me I need a g-tube, and I remember not even knowing what a g-tube was and they explained me obviously I accepted because I had no choice but I was not prepared emotionally for that. The following day I was back in surgery with general anestesia to place it, I was surprised when I woke up and I was told they couldn’t place it because my stomach was too high so they needed another doctor to perform the surgery. On Dec 31st at 4 pm I went again to surgery and the could successfully put the tube. I was released to the hotel at 10 pm.

Complicated because the explication we received about how to feed myself, clean the tube etc was very basic. So between my husband and my kids (adults) they started feeding me in the best way. On January 2nd we flew back to Lima. It was very difficult and now I realise I should have stayed longer in the US but that’s how we did it.

Thankfully in Peru we have access to a lot of help and I had a 12 hour nurse with me. She bathed me, fed me, gave me water etc. I also had 2 hours daily of swallowing therapy. I had to go back to Mayo every 3 weeks for follow ups.

I can’t deny those months were very difficult. I had a lot of trouble finding which formula could be good for me because I was constantly vomiting (after that I learn to vomit through the tube) and I lost almost 20 kilos in 2 months but I learned to handle my tube perfectly. Went to a nutritionist here in Lima and she started working in my nutrition with real food made at home.

Eventually with my therapies I could drink a little water and some baby food. After 14 months I reached a point where my tube had to be changed so the doctor here in Lima told me “if you don’t take this tube out you will never force yourself to eat” so I decided to take it out and started a new life.

Difficult but after 3,5 years I can eat fairly well, I learned what I could eat and what was more difficult but specially I learned how I should react when I choked.
Now I eat everything as a cream. A couple of months ago my doctor told me I had anemia and low iron, and that was because I ate what I could, and when I found something I could swallow I sticked to the same food every day. So no variety.

Now I eat everything blended and I have a very balanced diet. I has constantly dizzy and now that is gone and I feel much better. I take a lot of care about what I eat. I eat lots of protein (chicken, red meat, liver, eggs) blended with vegetables and always some fat (olive oil), for breakfast I blend overnight oats with some nuts, Greek yogurt, dates, some red fruits and whatever I feel like putting. For dinner I have a protein shake.

I had 2 procedures in my vocal cord and for the 3rd one I researched and found a great specialist in NYU Languone in NYC. He did a vocal chord replacement and muscle ablation to my throat which helped me a lot because my throat paralized and this allowed me to have it open so food could go down (but also out if I lean after eating and for some hours later).

Horners Syndrome got better but I learned to embrace my new life style. It’s very difficult but I had no option. Now I can go to a restaurant and order somethings to eat and I know what I can’t eat.

Being 14 months without having a voice or without eating was emotionally very hard for me so I also got help with that. Did lots of meditation and therapy.

Don’t think my experience will repeat in you. Everyone is unique with its own story. What I can definitely tell you if that it’s a daily battle but with time you learn how to handle it and even turn it into your benefit. Like always looking at the glass half full and not half empty.

These support groups helped me, and still does. Maybe I don’t write or say anything but reading other experiences have helped me a lot.

I travel, go to the gim, so sports, go out with friends and have a normal life knowing my limits but I don’t let those things not allow me to enjoy life.

I hope my long story helps you in something and i there is anything I can do to help you please let me know. Be positive… as you say, you’ve gone through so much that this won’t kill you… I am sure it will make you stronger 🙂

What a remarkable story of your journey with paraganglioma, @patriciagsr. You have certainly been proactive in seeking out help as well as very determined to adopt a healthy mind-set and attitude.

I appreciate you sharing this remarkable story and I hope that you continue to progress in living a fulfilling life. If you could give advice to anyone who is experiencing a complicated health issue, what would that be?

Thank you Theresa..

My 1st advice will be to never stop trying (because I know it’s very hard), to be positive, never loose hope and always work for your recovery. It all starts in your mind and determination BUT don’t have too many expectations because we expect to be perfect and it won’t be posible.

I was told I would never eat again and here I am, I can even eat a hamburger! With difficulties and slowly but I can, and that was unthinkable.

Also what helped me a lot was meditation and breathing, even when I choked I was taught to breath correctly so all the muscles will start to get loose and it really worked most of the times.

In short : mind, body and spirit are important

Mind (being positive and believe in yourself), body (do the therapies and take care of your nutrition) and spirit (meditation, breathing and any kind of higher power).

With my g-tube a person told me something that helped me a lot : don’t hate your tube, I know it hurts and it’s uncomfortable but acknowledge that because of it you are alive and be thankful to it because of that. So turning around some negative feelings to positive changes totally your attitude and therefore the outcome.

Finally… acceptance. This is what life wants you to go through and always for a reason, there is something to learn from that experience, so think and try to learn whatever you think it’s the lesson.

I just want to add that everyday I wake up is a challenge and I never stop being amazed and thankful for my story.