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Update

wendybyrd74
Posts: 18
Joined: Feb 2011

TT - check.
LID - check.
Thyrogen Shots - check.
RA131 - check.
WBS - Check.

As of today, we are on the the downhill slide and I am trying my darndest to stay upbeat and positive.
The only thing annoying throughout this process has bee and still is, this lump or knot that will not go away in my throat. Any sneeze, cough or yawn - hurts!

I have an appointment w/ my ENDO on May 9th to go over the WBS plus blood work. Because of my "knot", I have an appointment w/ my ENT-Surgeon on May 5th.

Fingers crossed !

I hope everyone else is doing as well as they could be, if not better.
Hugs to all.... and thanks for listening and providing.

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Wendy!

I still have a little constriction in my throat, I'm 2 months post surgery. Your knot, do you feel it when you swallow? Your thyroid was immeadiately adjacent to your trachea, I don't doubt there may have been some swelling.

Hang in there!

Alan

wendybyrd74
Posts: 18
Joined: Feb 2011

My TT was 2/7/11.
That pesty KNOT .... I feel it when the swallowing motion is almost complete, does that make sense. When it reachs that site, it almost feels like - that area wants to close up or reject whatever it is, even liquid. Crazy!

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Wendy,

Was it worse just after surgery than it is now?

My surgery was a day after yours, I also have some difficulties swallowing, but it's gotten much better for me, still a little bit. Mostly the swelling has effected my voice and while I've seen some improvement, it isn't that much. But I think my swelling is mostly due to the neck dissection, not the TT, just seems that way, I can't be sure. I'm guessing it'll be another month or two before it goes completely away, I don't know. I've been told it'll be a year before we don't feel any more lingering effects of the surgery. The last office visit with my surgeon is 5/4, this is the main issue I intend to take up with him, not that I expect him to do anything, only time is going to cure it.

My biggest issue is the lingering effects of the shock to the spinal accessory nerve that runs down the side of my neck. Everything in the shadow of that nerve is over sensitive. I can feel my shirt tugging on my shoulder when I shrug, the shower water stings when it hits certain areas and shaving is an adventure. I've been told this will take from 6 to 12 months to return to normal. I'm hoping I'll see some substantial improvement once the swelling along the side of my neck goes down.

Did/does anyone else have short, sharp pains along your incision as it heals at most a half dozen times a day? I'm guessing they may be scar tissue breaking loose.

Alan

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Wendy,

It's the same with me. I had my TT in November 2009. I can't say that the knot went away, but it did get better and I think that I have mostly become accustomed to it and less aware of it. It's sort of like the numbness in my neck from the nerve damage after my right neck dissection. The feeling hasn't come back but I am getting used to the feeling of having no feeling.

Best wishes for a speedy recovery.

Blessings,
Julie-SunnyAZ

BellsAngel69
Posts: 102
Joined: Dec 2009

I had trouble swallowing for a while, had the same knot. I finally went to a gastroenterologist to find I had acid reflux and hiatal hernia. I knew about the acid reflux, had been eating Tums like candy towards the end before I finally went to the GE. I feel so much better.

However, I have recurrent Hurthle Cell Cancer and will be having my 5th surgery May 4th. Had a lymph node removed, showed HCC. Then had a TT, followed by RAI. I was clean for three years, then had my first reoccurence. Tried RAI again but it didn't work. Then had a hip resection for the lesion. My thyroglobulin kept rising, and finally after several PET scans found another mestatis to my liver. I had a liver resection last year, in March. I was clean for six months, then once again my Thyroglobulin started to rise. Another PET showed another reocurrence, the same spot in my hip as 2008, right behind the bone cement. So, hip resection #2 on May 4th.

It just never ends. My weight has gone from 135-169, up and down. It stays stable for a while, although I work out 5-6 six times a week, I can barely maintain, and a weight I feel is way to heavy for my 4'11'' frame. It's frustrating as hell. And the mood swings and *****iness just brings me down. People look at me and think I'm faking or am just moody, they just don't understand. Just because I don't seem to be physically suffering doesn't mean I'm not sick.

I try to stay positive, take everything in stride. Just another surgery is the way I look at it, mostly because I know I can't change it, and know I'll never be cured. I just hope to keep on top of this disease and keep beating it every round. I plan on being a grandma and seeing the world and enjoying the time I have. You only live once, might as well make it the best it can be.

And in the words of Papa Roach:

WHAT DOESN'T KILL ME ONLY WILL MAKE ME STRONGER IN THE END, IN THE END!!!!

Cause when it feels like a kick in the teeth I can take it
Throw your stones and you won't see me break it,
say what you want, take your shots,
you're setting me free with one more kick in the teeth,
na na na na, kick in the teeth!!

Stay strong sister, you WILL prevail!!!! I always say, you can't keep a good woman down.

Hugs, Patti

sunnyaz
Posts: 582
Joined: Oct 2010

AMEN Sister! God, I love your attitude!
Julie-SunnyAZ

BellsAngel69
Posts: 102
Joined: Dec 2009

Staying positive is half the battle. I do have my moments, get depressed, cry, go through the whole gamut from the highest high to the lowest low, but I ALWAYS PREVAIL!!! Let's put it like this, at least this cancer is managable. Guess that's why they say it's the "good" kind. There are so many other kinds that are worse, and deadly. We just have to take the hand we're dealt and make an ace of it, anyway we can. Life's for the taking, so take it while the taking is good!

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