Hi! I'm new to the group. My journey started in Sept. 08. Had swollen lump on neck. Thin needle biopsy was negative. After removal, turned out to be malignant. Had radical neck dissection the next week. They found the primary in my tonsil. Two weeks post-surgery, I traveled cross country to Washington D.C. for work. I started having very blurred vision. Went to John Hopkins because they have a great vision center. It turns out that I had major spinal pressure building up. When they took out my jugular, they of course were unaware that I didn't have one on the other side. This caused blood to build up in my head. Took several spinal taps and meds to save my vision. After 5 days in the hospital, got to return to Seattle. Shortly thereafter, I experienced sudden hearing loss in my rt. ear. Steroids took care of this problem. I did 7 weeks of radiation, ending Dec.30, 2008. I got the feeding tube out last week and am slowly starting to eat soft foods. Best thing is I'm starting to get a little energy back. Beginning to feel like me....now if the edema in my waddle would go away, I'd be truly happy.

Welcome to OCF. Sounds like you have had a difficult journey. Glad you can share your experiences with others. Best of luck with eating again. Its a slow process but it will get back to near normal.

Thanks Christine....glad I found this group. I knew bascally nothing pre-surgery. Wish I had found it sooner. Would have had the PEG in right away!

When you get time, please add some info to your signature. It makes it easier for us to know your history and understand where you are in your treatment.

At least you did have the PEG tube. You must be doing very well for it to be gone already.

I still have a spot on the tongue, using lidocaine on it. Other than waiting for hair in back to grow back and the waddle, I'm feeling pretty good. I've been pretty fortunate considering how I started down the path.

Make sure you let them know about the spot on your tongue - is it radiation scarring? And when you find a way to reduce the swelling in your waddle - please let my doctors know!!! Glad to hear you are feeling better, its a slow process and you have been through alot. Give yourself time to rest and recuperate.

Donna

Where were you Tx'ed and why were they unaware that you were missing the jugular vein on the other side? Why did they go for a RND when usually CCC's call for rad and perhaps chemo first and optional surgery post Tx in your circumstances? When were you tested for HPV and I assume it was 16+?

Welcome to OCF..I'm glad you found us here. It is an amazing support. It sounds like you have gone though an awful lot. At least you were close to Johns Hopkins...that was lucky. Well, I guess you weren't that close if you were in DC. About an hour maybe? It sounds like you have a postive outlook and that is so important. Keep us posted and welcome to our family!!

Suzanne

Yes, its a radiation burn. Was down whole right side of tongue. Now its down to about 1/4 inch square. Numb with lidocaine for relief. Dr gave me a drug to increase blood flow. Seems to be helping.

David, They did radical because of lymph node involvement and size of mass. I'd rather have them all out on that side than worry some were waiting in there. No one knew I had no jugular on the other side. Probably my mom's prenatal prescription drug use in the 60's caused that abnormality! I had surgery at Highline in Burien, WA. I actually have no problem with the ENT or the radiation facility there. Pleased with their work and they helped as much as they could in battling the side effects.

I didn't have chemo based on the study done at Hopkins on HPV. My dr consulted with them and they didn't see any benefit in it. Yes, it was 16+ and it was checked after the tumor was removed. I had no clue before hand. Led to interesting conversation with wife as I could have picked the virus up many years and many partners ago. Luckily the doctors backed me up on that one.