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sukilou

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Well, here goes, my latest development, although part of it not so recent:

1991, I had a total thyroidectomy due to a very large multinodular goiter, which was constricting my windpipe. I have been on throid replacement therapy since then.

2001, I noticed a swelling on the right side of my neck. Went to my endo who did a fine needle biopsy, which came back as colloid tissue, benign. My doc increased my Synthroid medication to suppress any further growth.

Aug 2007, I had a cervical MRI which showed a neck mass on my right side of my neck to be approx 3.2 cm.

Aug 2008, another cervical MRI showed the same mass to be 5.8 cm and causing a deviation to my windpipe. Meanwhile my diagnosed of ALS came about and I wasn't thinking about my neck too much. My ALS neuro wanted me to get this mass checked out because of the restriction to my trachea and enlargement.

Jan 2009, back to the endo, who referred me out to the surgeon who did the original thyroid surgery. I saw the surgeon last week, who went over his surgical records of the 91 surgery with me. He said that my entire gland had been removed in 91 and he didn't think that it was thyroid tissue. He is sending me for an ultrasound and biopsy tomorrow morning. He is an oncology surgeon and mentioned the possibility of lymphoma. The concensus among my doctors is that if I require further surgery now is the time. My breathing is excellent (FVC 109%) and according to my ALS neuro my risks are not any higher than a person without ALS.

I know that this is an ALS forum, but I would appreciate any info or experience that anyone may have with thyroid problems and/or surgery and regrowth of thyroid after removal. I had surgery in May 08 for a wrist fracture, and that is when my ALS symptoms accelerated, leading to a definite diagnosed in Nov 08. So even though my neuro said ok to the surgery, I am nervous about my recovery and set backs or progression of ALS.
 

BethU

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Oh, geez, Lonna ... I am SO sorry for this development.

I worry about ALS and surgery, too, but I have had three surgeries since my symptoms started, and two of them had no bad effects on my symptoms. The first one was a minor surgery on my ear, and when I came out, my speech was worse. Very noticeably so.

Then, a year ago last December, I had a three-week stint in the hospital for respiratory failure ... over Christmas :-( ... with entubation, etc, and it had no effect on my symptoms. The last ... placing the feeding tube ... actually seemed to help my speech a little, although it's probably a figment of my imagination.

Your terrific FVC should help you through it. My advice would be to be as rested (lots of sleep) and well-nourished as possible before, to give yourself every little edge possible. Hopefully, it won't be lymphoma. I will be praying for you ... for a benign outcome with no complications and no disturbance of your ALS.
 

rose

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Lonna,

I don't have much knowledge about thyroid, I am glad to read that you will be having the biopsy and ultrasound done so everyone knows what is exactly happening in there.

Even with your array of health problems, having your breathing so strong is a huge, huge thing in your favor. and, its like anything else, don't worry about the worse case, as, if it is worse case, you'll know soon enough.

Is tomorrow's biopsy a needle type? Will you be awake for it, etc?

PLEASE let us know when you find something out, ((hugs))
 

rocmg

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sukilou, i'm sorry you have gone through so much. to have two devastating diseases seems unreal. my mum also has terrible problems with her thyroid. you seem strong, and hopefully you will be surrounded by a good support network of friends and family to help you through this next difficult stage.

try and seek out as many opinions from doctors and specialists as you can. only they will be able to truly assess the risks that will inform your decision.

i truly hope everything goes well for you.

god bless.
 

kelly

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It really seems like people with ALS should be exempt from all other health issues......that was my deep thought for the evening!
 

sukilou

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update

Well, I had my ultrasound and biopsy early this morning. It was an outpatient procedure and much different than the biopsy done 7 yrs ago in the doc's office. The ultrasound was done first and showed a very large (lemon sized) single nodule. There was a cytology tech there also, and a doctor who then numbed my neck and took 3 samples using the ultrasound as a guide. The samples were then previewed by the cytology tech to make sure there were enough tissue cells for the pathologist to analyze. However, because of the vascularity of the mass, too much blood was in the samples, and more samples were needed. So again, the doctor came in and ended up taking 6 more samples.

I won't find out the results for 2 or 3 business days. But needless to say, I'm a little bit worried. The ultrasound tech did tell me that the mass (I think I'll name it George) was growing between my esophagus and trachea. So I'm guessing I'll need surgery. The fun never stops!

Thanks everyone for your support, and I'll fill you in when the final report comes in.
 

rose

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Lonna,

You'll be in my thoughts. I know the wait is going seem like its dragging on forever.

Were you given any indication if the amount of blood vessels was significant at all as to whether the tumor is benign? I sure hope your get the results before the weekend!
 

sukilou

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Diane, I did ask whether the vascularity was good or bad. Both techs were noncommital, but the ultrasound lady raised her eyebrows at me when I asked. And, of course, I read all sorts of things into that! But Dr. Google notwithstanding, I won't know much of anything until the path report comes in.:)
 

rose

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Well, I sure wish your 2-3 business days had already passed! Its impossible to interpret how techs act, you can figure it from either view point. Please let us know. ((hugs))
 

sukilou

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great news--little bit of bad news

The very good news is that the biopsy only showed normal thyroid cells--no cancer! However, I will be having surgery to remove the thyroid mass on Feb 24. I'll be in the hospital for 2 days. My PCP, endocrinologist and ALS neuro are all in agreement that this surgery is necessary and current health poses no risks. I do find it curious that such a large thing can grow from a microscopic piece of thyroid tissue left from the first surgery. I guess my body just wants to keep everything intact, even if it means regrowing some missing parts.:wink:
 

BethU

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Lonna, so glad to hear the "all clear" on cancer. It sounds like they will be able to remove it easily. Hope everything goes smoothly. Keep us posted!
 

vmd

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No cancer-great news!
 

brendapals

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Lonna-
Wow, I'm certainly keeping you in my prayers for this latest journey. I hope all goes well on the 24th,
Keep us posted,
hugs,
-b
 

rose

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Lonna, that is GREAT news!

~ now see if it were me, I'd be working on a way to try to wiggle in a chin tuck, or lift, or whatever it is they do while they had me on the table! 8)
 

lydia

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Lonna, that is great news! Best wishes for an uneventful surgery and painless recovery-

Lydia
 
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