Carotid body tumor encasing completely carotid artery

Well, your concerns are absolutely valid. Seems like a very challenging surgery. Have you gotten a second opinion? Do you have symptoms at this time? Several surgeons thought my mesentery mass was inoperable, but finally found a group that could help me.

Hi. I have no symptoms at all and no pain. But the mass is growing and has almost cometely encased my carotid artery. I have spoken to 2 surgeons thus far, NYU and MSKCC. They are not saying inoperable but very risky due to the artery involvement. Did you have your surgery done? Any issues after?

There is a team of doctors at the Rare Cancer Center (East Jefferson Hospital) in Metairie, La. They specialize in Neuroendocrine surgery. They performed my surgery. It was a struggle for me to get well. Took quite a while. Your experience may be different though. It seems every case is different.

@jlsgt,
What exactly did u go thru to get well after surgery?
How long did it take to recuperate?
Was the surgery completely successful?

Can you share some info about your recovery progress?

I was suffering before my surgery with 3 small bowel constrictions due to Nets. I had lost over 100 lbs because anything I ate, I had to push through a keyhole as my surgeon put it. I had severe malabsorbtion. I was weak and had the blood work of a refugee. I point this out because it affected my recovery.

After the surgery, I had a leak that washed bile over the outside of my intestines. I wouldn't wish that on anybody. I was really sick! In the hospital for about a month total. At one point I had 5 separate drains going from my abdomen. The radiology department and I got to know each other as each of those drains installed with CT guidance. Because of that leak, I was on TPN for a month to give that a chance to heal. This is where I got the nutrition I needed through a Pic Line IV. I went home on TPN. Got that at night while I slept. I did not eat any food at all during that time. I had lost down to 168 lbs. I started out weighing over 300 lbs a year earlier. My dear wife was a great nurse for me during recovery. Helped me with everything. I could hardly get up and walk to be honest. Slowly but surely things started improving. I got an appetite back, started eating good meals again, getting some strength back.

After 6 months of recovery, I felt pretty good. Still had some joint pain, but that was improving. I really was good at 1 year post op. Now I'm at about 20 months since that surgery. Still have Nets of the mesentery. I get Lanreotide once a month and a PET scan every 6 months. Life is good. 🙂

What a very remarkable story of surgery and recovery, @jlsgt. I appreciate you sharing your experience here. How great that your wife was such a great support for you.

Are you maintaining your weight now?

Photos are of me in late 2021 and then mid 2023 after surgery. I've gained quite a bit of weight back now. Actually should go on a diet!

Great before and after photos, @jlsgt! I am glad that you are doing so well. I'm guessing that your energy level is good.

Your story is encouraging to others. Will you keep posting?

Been posting for a while now. Hopefully my comments help others.