Substernal Goiter

[countrycarole]

I was told by my surgeon that I would need a total thyroidectomy for excision of substernal goiter which measures 7.5 X 5.6 cm (multinodular goiter (R) side with many smaller nodules on the (L) side). The CT scan I had indicated that there is "displacement of the trachea to the left by a large complex right thyroid mass. The airways are patent and the parotid and submandibular salivary glands are unremarkable in appearance". I do not have any symptoms such as breathing or swallowing difficulty but there is a definite enlargement of my neck on the right side. Also, I have had a biopsy done which came back as definitely negative.

My question is how long is it safe to wait to have this surgery? I am planning on vacation in the beginning of June and the surgeon indicated a possible April date for the surgery. Do you think I would feel well enough to take this prepaid vacation approx 6 wks after surgery or would it be safe to wait a while? If I waited, I would not want to have the surgery performed until the fall because I live in Florida and do not want to schedule any surgery during "hurricane season". Could it grow much larger if I waited another 6 months for the surgery?

I would appreciate any advice because I am very confused at this point in when to schedule the surgery.
Thank you in advance for your help.

Carole

[countrycarole]

I didn't realize it would take so long to get the thyroid completely working again. But you are right. I will not put my life on hold - I will have the surgery April 12th and still plan on taking my vacation in June.

Thanks again.

Carole

[Barb15]

Yes, I had low calcium in the hospital (tingling in my lips and on tongue) so they gave me some tums - I still take it everyday even though my parathyroids were left intact.  I take it just cause I know I need extra calcium since I don't eat alot of dairy.  I am STILL trying to regulate my thyroid (surgery in Sept), just switched over to Armour, but still on a bit of synthroid too - I should be completely on Armour in 3 months.  My doctor told me it could take up to 18 months after surgery to get everything settled - still have alot of thyroid hormone floating around in my body from my diseased thyroid!  My antibodies are still very high too.

So, my philosophy on life:  I am so used to feeling like **** that I choose not to postpone my life because of it.  I have a 7 year old so I do my best not to let my health problems rule my life.  I could lay down on the couch every day and cry and sleep - believe me it would be so easy.....but I have to force myself not to.  I have alot of anxiety and have alot of breathing problems because of my hypothyroidism.  Even right now I'm struggling to get enough air.  But life goes on.  

As I said, I had my surgery in Sept and 3 weeks later I was in charge of a golf tournament and silent auction.  I was put on Synthroid immediately following my surgery.  I went to Hawaii in December and had a great time.....even though I'm still getting my thryoid hormones in line.  I say go for it - don't live your life waiting to feel wonderful - just enjoy today.

[countrycarole]

I'm been so concerned re just having the surgery, I haven't thought much about the after-effects. My surgeon did mention that I will be needing to take a pill for the rest of my life so I'm assuming it is the thyroid hormone that you mentioned.
My surgeon said that both he and my endo will be visiting me in the hospital so I guess I'll find out more then.

My goiter is very large and substernal so perhaps that is the reason the surgeon mentioned taking calcium pills (if needed) in the hospital.

Carole

[countrycarole]

Thanks for replying Barb. I'm glad to hear that you are doing fine.

I am just concerned that it might take a while for the thyroid medication to be regulated and I'm not sure if 6 wks time is enough.

Did you take thyroid medicine after surgery and, if so, I would appreciate very much knowing how long it took until your correct dosage was found. From reading some boards, it seems that it might take a few months until the correct thyroid dosage is found. Also, were you given any calcium in the hospital because my surgeon mentioned that might be necessary?

Thank you in advance for your help.

Carole

[countrycarole]

Thank you for replying. Do you think if I waited until after hurricane season (end of Oct?) would it be a more involved operation than if I had in done in April? I am just concerned that it might take more than 6 wks for the thyroid medication to be regulated and that I would not feel like going on vacation?
Thank you.

[Barb15]

Can't speak for anyone else, but I ran an entire golf tournament 3 weeks after my complete thyroidectomy.  I was in bed for about a week after surgery (in the hospital only overnight), then the 2nd week I was pretty close to back to normal.  I think you would be fine to take your vacation 6 weeks after surgery.

Barb

[Mark Lupo, M.D.]

Hard to say exactly - most cases are slow in progressing and if you have no respiratory complaints/symptoms, may be reasonable to wait until the summer -- would not plan around hurricane season (I live in FL too!).