#95015 05-06-2009 08:43 PM | Joined: May 2009 Posts: 1 Member | OP Member Joined: May 2009 Posts: 1 | Hi, I found this site after typing in "neck cramps 3 years post thyroidectomy." In the summer of 2005 I was diagnosed with an enlarged thyroid and/or tumors on both sides of my thyroid. I had a biopsy that came back "inconclusive" so "they" said it had to come out. Katrina came along and everything got delayed. After returing from my hurri-cation (also referred to as "lost september") my thyroid was removed and "they" discovered that thankfully there was NOTHING wrong with it. So I'm on thyroid replacement for the rest of my life with all its myriad and assundry issues. But that is better than the alternative. So now I'm dealling with this strange symptom that none of the thyroid sites seem to address. I hope you guys don't mind me coming here for some answers. My surgery was the similar to what is done for a malignant thyroid so some of the issues are the same. I thankfully didn't have to go through chemo or radiation.
Kathryn-multiple bilateral thyroid tumors, total thyroidectomy 11/2005...all clear, no C/no radiation/no kemo.
| | | | Joined: May 2009 Posts: 2 Member | Member Joined: May 2009 Posts: 2 | Hi. Okay I don't know all the medical terms but I know what my Dad went through this past year as I quit my job and moved him in with me to take care of him. Today he broke my heart because all he wants is a stinking set of dentures and no one seems to think it matters, or cares enough to even try. Anyway, here is his story:
78 yo male who had a partial mandilectomy on the left side along with part of his cheek being cut out and replaced by inner arm muscle/and a leg skin graft flap in June 08 at Moffitt Cancer Ctr in Tampa. His inner arm wouldn't heal and the tendon was sticking up so we had to use a wound vac for a few months to get that healed.
After the scabs came off his face, part of the mandible was sticking out and wouldn't heal and turned green due to rad 10yrs ago for SCC in the same place. So he went back in for surgery 11/08 and they took muscle and skin from his chest to fix that, and the bone still stuck out.
Then his L eye wouldn't close and his left face had no feeling and sagged so another surgery 02/09 @ TGH and they put a gold weight in the eyelid and some stretchy material from just under his ear to his mouth to try and hold his mouth even and they also cut the bone back and covered it up.
Dad was such a trooper through all of this, heck I am the one on anti-depressants, he was so positive it was unbelievable. Everything was finally healed, he was gaining weight back by drinking 6 cans of Isocal 375 by mouth (with a straw) and even gained back 22lbs.
On 04/09 the pet lit up, its back just next to the rebuilt cheek. Further surgery is not an option they say and he refuses chemo and rad. Guess he is tired and ready to give up, he told me today "I want a good steak before I die and I need teeth to eat it".
Saw the dentist at Moffitt 4 times since 03/09 and he hasn't done a thing, no impressions, etc...just whittled his old upper denture down so it would fit but the teeth stick out like a rats and he still can't eat or hold food/liquids in his mouth, everything dribbles out. Now the dentist says he can't do anything as the cancer is back. We have seen 3 other local dentists and they say the same thing.
Anyone came across this problem with their treatment? Dad has insurance, was in the military for 30 yrs and everything is paid for 100% & we are willing to travel anywhere necessary to get him teeth.
It is just sad that he went through so much to have the cancer come back and this is like his last wish and no one seems able to help. Maybe I just refuse to believe they can't fix him but dang it my daddy wants teeth.
Sorry, I didn't mean for my first post to be a mini book. Anyway, please email me if you know of any dentists that could help. Also if you have any words of wisdom I could use to maybe talk him into at least trying radiation? That would be great.
Thanks, TeeCee | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | TeeCee, I have been thru a lot but your dad sure has me beat. I am with him on the teeth. I want that steak too and can't get the Dr to OK my getting teeth. My teeth were removed for rad seed implants in my tongue after rads and chemo. THere is a place near by that makes teeth almost while you wait. Get there early and you have a set of dentures that afternoon. I live in Ohio a few mile from the river. I hope your dad gets those chompers . Dr told me we will discuss teeth in Aug at my next appt. Good luck and you are a great daughter and caregiver.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Kathryn, welcome to OCF. Although this site is all about oral cancer, the thyroid is discussed here too at times. Please feel free to hang around and browse thru the forum and main pages of OCF. There is a search feature on each part. Im sorry that I personally do not have experience in what you are going thru. Im sure there will be someone who can help as it is very common to have throid issues after OC treatments. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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