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in reply to: Results after Total Thryroidectomy #1174823

Hi Emily, of course I was going to refer to the post by Alexis, and I think you would appreciate reading the post by lhc or lch but now I am forgetting rest of her posting name, it might be followed by 11, lhc11, but I bet you can find it.

I am another person who had a thyroidectomy when I was 24, many years ago. I have always been glad I chose that option. I went home the next morning, ate right away, chewing tough food had to wait a few days, cause your neck has been in an extended position, and the muscles are sore. I had a little help the first week, cause I had a baby, whom I continued to breast feed. I went back to work full time in 2 weeks, that was a mistake, I should have taken the third week off, and/or gone back part time. Was really tired.

Your surgeon has done plenty of this surgery in a year. The general advice is that at least 50 a year, and he is way over that at almost 100/year.

Sounds like you are doing well!
Shirlwy

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in reply to: New problems with eyes #1175173

PattiMeg,

WOW!! Thank you for telling me that! I don’t think we have CVS in Seattle world, but I will check. I tend to go to my local pharmacy, but I will also check Rite Aide and Walgren’s. THanks so much.
Yes, I was VERY resistant to taping eyes closed at night. but it makes such a wonderful difference, that I am resigned to it now, works pretty well.
The Mepitac take is approx. $19/roll. I use the tapes two nights, seems to last a long time. I usually get the narrow tape, but just spoke with someone who says the wider works better.
Shirley

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in reply to: New problems with eyes #1175168

Sasha, I understand! the double vision changed my life forever! Not in a good way. I had to wait until (probably almost) the cold phase. My eyes were still changing, rather than stable, but I was so miserable (could not work and see the monitrs in the recovery room any more, all the numbers were upright and sideways. My muscles hurt a lot. the only way I could look with any ease was down at the floor. Yes, the muscles are swollen and fibroses. The elasticity is gone. It is my own experience that eye exercises made my life worse. There was no way I could move my eyes where they would not move. Good news is that strabimus surgery, down the road, really fixes this issue. In the meantime, steroids, which come with some risks of their own, did help me for a couple weeks, a little bit. The eye docs tried prisms. which help a lot of people with their double vision, but it did not help me.

My eyes do not close at night, and I have to tape them like Patti Meg. The bEST tape for this is Mepitac, which you have to order, and is expensive. I have not found any other options that are tolerable. And I still have trouble figuring out HOW to tape my eyes closed. But if I don’t, I pay a very heavy price for it.

I hope you can explore prisms, they have really helped a lot of people. Otherwise, to keep your job, I suggest the patch.
Best
Shirley

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in reply to: 18 year old college student #1175128

Oh my. Sorry you were not there. THere were two 18 year olds there, girls, and I think one guy. He probably was older.
s

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in reply to: 18 year old college student #1175126

Yay, Megan and Rebecca! I hope you two connect. Megan, didn’t I meet you in San Diego?
Shirley

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in reply to: Total Thyroidectomy without scar? #1175056

mhanscom, you sure had a great surgeon! So happy for you. Asking the pros and cons is a very good idea! This is not something to decide to do (the armpit way) with the decision based on no neck scar. I do believe the traditional way is also safer, for they can really SEE the field.
It will be interesting to see how this procedure is accepted, both by surgeons and patients. Also, this is very new, so no surgeon probably has much experience with it. I see the long anesthesia as another con.
Glad you are doing so well!!!!
You gave really advice for others who are considering this option. For sure, it should be a surgeon with as much experience as possible if it is chosen.
Shirley

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in reply to: How is your Vitamin D levels? #1175102

Good to have it checked. Good to be sure it is in a reasonable range. Good to supplement if it is not.
Shirley

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in reply to: OD in the “hot” Phase #1175078

Your eye situation is emergent, and serious.
I am wondering if the endo is thinking too narrowly, or not thinking well enough, about your BP/heart rate. Any way you can get to a cardiologist?
There are TONS of very acceptable meds that slow pulse rate and decrease BP.
I also suggest that if you can swing it, ask to meet an anesthesiologist who works with the surgeon. But the cardiologist suggestion is much better. Or, alternatively, ask you endo to refer you to an internist who manages fast heart rate and high BP for any reason.
Those are might thoughts.
As someone (me) who DID have optic neuropathy, and did almost lose her vision, in the active phase, there is a certain amount of urgency associated with this problem, to relieve the pressure on the optic nerve to save your vision. They have probably told you that constant and increasing pressure on your optic nerve can result in permanent blindness. So you should be watched very carefully, with Humphrey visual fields and all the other tests, and perhaps a very recent orbital CT.
Shirley

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in reply to: Flu shot and Graves/TED #1175087

There will be disagreement on this, that is for sure. As with other decisions with our health care, we depend on our providers to advise us and take care of us, and this is made all the more challenging by the fact that there will be absolutely contradicting views from our providers. Sometimes, there is no right or wrong. Sometimes, there really is.

I would be very uncomfortable NOT getting the flu shot. I cannot find anything but concensus on this in the area where I live. Except for the small pocket of people who do not believe in any immunizations, which has precipitated our current whooping cough epidemic.

Vanillasky would feel equally uncomfortable choosing to get the flu shot.
We can both be happy with our choices!
I did read the Cleveland Clinic website for 2012, but did not see anything that reflected your endo’s point of view. But I think your choice is the right choice for you. And mine for me!
(:
Shirley

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in reply to: Flu shot and Graves/TED #1175086

And, it is my understanding that people with compromised immune systems, whatever that means (we can have an autoimmune disease like graves, and not really be immunocompromised (like people on chemo, or who have had bone marrow transplants,)
Anyway, all the more reason to get a flu shot.

Again, there certainly is a segment of the population who do not agree with this. There have been some interesting conflicts about this in hospital and similar settings, for some health care providers, not many, try to opt out. This whole business has ended up in courts. Generally speaking, the institutions off the flu shots,a nd want everyone in direct patient care, to get them, to protect the patients.
Shirley

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in reply to: Flu shot and Graves/TED #1175085

And I am the polar opposite of Alexis! And we agree on lots of stuff! (:

I would not dream of not getting the flu shot. There is a lot of thought and research that goes into it. I think being healthy has little to with preventing a person from getting the flu. Although being compromised, due to other illnesses, being elderly, certain medical conditions, it is even more important.

I think that the retrospective history, especially with the flu epidemic of 1918, when thousands and thousands died, with a higher percentage of young, healthy males who were serving in WW1, pretty much disproves that being young and healthy is a disadvantage. From my personal world, I had five healthy male relatives in WW1, and they ALL died in this epidemic.

Of interest, RIGHT NOW, we have a whooping cough EPIDEMIC (as determined by the CDC, with several deaths, of adults and babies.) Why the epidemic? Because we have pockets of communities, especially on some of our islands in the San Juans, who absolutely do NOT believe in any vaccinations. And teen agers have been hit especially hard, too. This is all public information.
Right now, we have a huge drive to get people vaccinated. One of the big reasons, is that babies cannot be vaccinated before a certain age, and they are totally vulnerable to getting whooping cough from unvaccinated adults.
And several babies have died.

So, enough said. I realize there is room for lots of different views, but this is my view, and based, I think on evidence based data.

For you information, here is a reliable reference from the CDC for you to read for 2012-2013 shots. At the time this was written, they had not finalized the research on which strains would be in this years vaccine for the 2012-2013 flu season.

http://www.cdc.gov/flu/about/season/flu-season-2012-2013.htm#recommendations

My two cents! (:
Shirley

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in reply to: Graves Eye Disease TED Decompression question #1175068

Gatorgirly did a great job of covering a lot of points.
Regarding OD helping double vision, no, it will not. Basically an OD is
“making more room” for your protruding eye, but removing some fat and bone.
But double vision is caused by the fibrosis (hardening, fattening, making larger) of our six eye muscles. The muscles do not expand and contract like they should. The reason that double vision is listed as a possible side effect of OD, is that those muscles an possibly get manipulated during an OD, and/or that the are more swollen and inflamed as a result of the procedure.
I had double vision when I had my OD, in the active phase, which is not recommend, but I had it because there was too much pressure on the optic nerve.

In your case, as gatorgirly mentioned, strabismus surgery corrects double vision. And it needs to be done after an OD, ideally.

Regarding your labs, check with your docs, but the labs you mentioned, or any other labs, for that matter, have nothing to do with surgical decisions for TED>
They are made based on symptoms (proptosis, double vision, retracted upper and lower eyelids) and the surgeries are done to correct these symptoms.
The important message is to do the procedures in the cold, or inactive phase, cause your eyes are not changing anymore. The docs can’t do these procedures sooner, for the measurements would not be accurate, in other words, they have to have measurements that are consistent and not changing.

Regarding your thoughts about waiting, you also should ask your docs this, but lots of people wait quite a while before they decide to, or not to have an OD. Nothing wrong with waiting.but you need to treat the symptoms of dry eyes with preservative fre drops and ointment. Corneas do NOT like to be dry. And our tear consistency changes to much less efficient, too. I think this is a life long problem. And, as we age, eyes get drier.

Regarding scarring and healing, and anesthesia, it is normal to feel a bit apprehensive about anesthesia, and every person who has it, for any reason, usually feels the same way, like any other experience similar to that. Anesthesia is pretty state-of-the-art now, with many improvements. I think you will probably find it a non-issue after the fact.
For me, and for most others, the incision is barely visible after it heals, and like anything else (getting “stitches” when we cut our selves peeling potatoes) it simply heals in 10 days to 2 weeks.
Hope this is helpful along with the other responses. And take these questions to your docs, as well.
Shirley

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in reply to: High Cortisol the Culprit of Graves’ Rage? #1175073

I don’t know a thing about it. But, I do know that in the 55 years I have had Graves’, cortisol levels have never been mentioned, or tested. Maybe it would be helpful for you to balance your reading with trying to find information from
academic websites with endocrine departments, like Mayo Clinic, Cleveland Clinic, most university medical centers in the country, and NIH. Look for evidence based studies with large samples of the population, and a large sample, that is a longitudinal study over a reasonable period of time.
In addition, I suggest that you ask you endo to explore this question and do extended research about this. I’d think if it were a very relevant variable, it would be universally known.
But, having said the above, I have absolutely no idea. Nor do I know if this information is helpful,once it is known.
I suppose it is possible to have all of this exacerbated by having a history of anxiety and panic attacks for a long period of time. I understand that a panic attack is really awful to have.

I had the Graves’ rage, irritability, anxiety, and all the other typical Graves’ symptoms. But once I began the ATD’s and beta blockers, all of this improved.
Then I had my thyroidectomy.

I sure hope you can get on the path to recovery, for this is very disturbing to experience. I am so sorry. As you know from reading the experience of everyone on this forum, Graves’, and (believe me, I know this to be true,) TED impacts our lives negatively, that is for sure.
Shirley

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in reply to: Total Thyroidectomy without scar? #1175054

to emmamarston37-you are SO RIGHT! I was so tired when I wrote, that I said the wrong “scopic!” Yes, that would be quite a journey!

To gatorgirly-sure agree that the reason you were given is a pretty dumb and judgemental one, to exclude surgery as an option. Keloids also depend on skin color, and sometimes, the surgeon.

Even if you did get too close for comfort, I doubt if someone could see my incision! (:
Shirley

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in reply to: Total Thyroidectomy without scar? #1175048

This is not really an answer to your question, but I had a TT, and my incision is not visible. My personal thought is, that I prefer to have an incision if given the option, because I want the surgeon to really see and identify all the things that need to be seen to be avoided.
It is possible that they have a way to do it laparascopically, with a camera.
I would ask more questions when the time comes for you to consider this.
Shirley

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