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in reply to: Saw thyroid surgeon yesterday #1177364

sounds like you saw a great doc! Experience with the surgery is the most important thing, and sounds like she’s had a ton of it. And that she chooses to do TT!

Generally, the two kind of surgeons are ENT (ear, nose and THROAT!) and general surgeons who choose to do thyroidectomies. No different that surgeons who choose to do gyn surgery or cardiac surgery. They usually general surgeons.

Re the parathyroids. They are teeny, tiny glands, two on each side, which cling to the thyroid gland. The surgeon has to be careful, that is all. They are usually about the size of a grain of rice, or slightly larger. I have seen a lot of surgeries in the OR. In almost any surgery, there are things to be careful of, that is for sure! You have a good and experienced surgeon who you like! All winners, in my book.

Here is a site where there is a nice visual of the relationship of the thyroid gland and the parathyroids.
Shirley

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in reply to: Me again #1177285

HI! Congratulations! My incision is almost invisible. I’m a turtle neck girl, too. but that is good advice until the thing is quite healed, which probably will be between 10 days 2 weeks. and, it disappears more and more!

Yep. Scarves are you for a few days. They are all the rage right now anyway.
But I understand, I am ALWAYS cold.
I LOVE the way you write, your sense of humor, which is why I like it even more~

Yep. Anesthiologists are anesthesiologists for a reason, with some rare exceptions. They don’t WANT to talk to people! Not even sure if they like them, unless they asleep and intubated!!!! But you never have to see him again. Yay!
Shirley
Let us know how you are doing!
Shirley

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in reply to: what did your surgeon said about the long term effects of OD surgery? #1177345

Well, I don’t think any of know anything about this. I do not clearly remember your entire situation at this time, or the indications for OD’s for you. It rings in my memory that you have another condition, not TED? Or am i mistaken?

I believe the best thing for you is to make new patient appointments with at least two surgeons who do this procedure, present your research and your concerns.

In the surgery, I am not aware of any trauma TO the eye. There is removal of extra orbital fat accumulation which is specific to TED, and adjustment of some of the small bones which form the orbit of the eye.

I guess my advice to you is to really feel good and confident about your decision to have and OD, based on your own research (including the sources of your research.) Anything anecdotal is not worth considering. I am doubtful if any scientists have formed this hypothesis to ask this question, then done a 20-30 year longitudinal study to know the outcome.

Do keep in touch with your progress on this topic.
Shirley

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in reply to: what did your surgeon said about the long term effects of OD surgery? #1177344

Well, I don’t think any of know anything about this. I do not clearly remember your entire situation at this time, or the indications for OD’s for you. It rings in my memory that you have another condition, not TED? Or am i mistaken?

I believe the best thing for you is to make new patient appointments with at least two surgeons who do this procedure, present your research and your concerns.

In the surgery, I am not aware of any trauma TO the eye. There is removal of extra orbital fat accumulation which is specific to TED, and adjustment of some of the small bones which form the orbit of the eye.

I guess my advice to you is to really feel good and confident about your decision to have and OD, based on your own research (including the sources of your research.) Anything anecdotal is not worth considering. I am doubtful if any scientists have formed this hypothesis to ask this question, then done a 20-30 year longitudinal study to know the outcome.

Do keep in touch with your progress on this topic.
Shirley

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in reply to: Back from Cleveland Clinic…oye! #1177354

Hi Karen, I have felt like you do now. One of the things that was the MOST terrible, was the poor sleeping, and sleep deprivation, which impacts our whole day. It is terrible. I am not suggesting you do what I did, but this IS what I did. I felt I could not go on, unless I got a full night of sleep, or at least slept fairly well some of the night. I did get some sleep medications, they were a life saver for me, cause I saved them for “special occasions” and took them sparingly. I found that everything about my world, especially being discouraged and depressed, was worse when I spent sequential sleepless nights. It did help me.

I am not much in the holistic stuff, but there probably is some good science out there that gives it a place in the treatment world, and worth a go. Why not? I am so so sorry you feel as you do. Many people on this board will understand, and have hated it as much as you do.

Nobody understand what is like to be NORMAL, and how wonderful it is, until we aren’t!
Shirley

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in reply to: New/Not 100 Percent Diagnosed #1177315

Oh, I get it. It seems to me that you just recently, in the past few 1-3 months, probably began to develop Graves’ I’m just another Graves’ person, but it helps to look at yourself 1/2 year ago, or so and see the differences.

Yep-your BP a bit high, not bad. YOur heart rate is pretty darn rapid. I imagine you will be prescribed a beta blocker and and ATD (do know what these meds are?) Of course, when you see you endo, try to learn as much as you can about YOUR Graves’, and the meds.

Re your brother. I suggest that he see a good neuro-opthalmologist to have a baseline eye exam. I hope that he does not have TED, but it is possible that he might have TED. Of course, wearing glasses is unrelated, but you know that. It is darn tough to be 12 when you are just a normal kid. He sounds like a great kid.
Shirley

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in reply to: Back from Cleveland Clinic…oye! #1177352

Wow. YOu are INTERESTING! But I sorry you feel so crappy. Hope something gets figured out soon
Shirley

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in reply to: New/Not 100 Percent Diagnosed #1177313

Hi syrenlulu,
ya have me puzzled! Your first post said you had LOST a ton of weight in the past three months, and that is one reason your doc suspected Graves’.

So the puzzle part comes in, when in your last post, you said you had gained a lot of weight. There are many reasons for gaining weight, and not everyone who is hyper, loses weight, but in my own experience, and that of most people, my hunger could not be appeased, and I ate like a trucker, and continued to lose weight. But I was eating almost twice as much as I usually ate when I was really hyper. And was hot. And had a tremor. And a fast heart rate. And was a crazy person.

Did you get your labs today? What is your heart rate? BP? Just wondering.
Shirley

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in reply to: what did your surgeon said about the long term effects of OD surgery? #1177341

I don’t think it is relevant in any way. What do you mean, by eyes aging?
I am pretty sure it is relevant.
Shirley

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in reply to: Significant hair loss #1177331

Agree. It’s the Graves’, not the meds. It will stop when you are controlled. I had the same experience, hair loss, controlled, and no more hair loss, even more hair afterward. Was in my 20’s.
Shirley

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in reply to: Frustrated w/ Symptoms #1177275

By any chance,did he order a TSH?
Kimberly will give you a better answer than I would, I think.

as I recall, Naisly had a nice post recently explaining T3, T4.

Sure does seem you are hyper. So so sorry you have been so miserable so long. I kinda hope the Thyroid labs say that you are hyper, for then you can begin treatment to begin to feel like a human again!
Shirley

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in reply to: if you had a lateral wall decompression surgery, please reply #1177240

Yes, I have. No difference between the two sides. I had only one OD on the left.
Shirley

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in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177215

My endos had strong thoughts against radiation treatment for TED. I did have steroids several times, oral and IV-it helped tremendously for a while. I needed them to relieve pressure on my optic nerve until I could schedule an OD-which I did have in the active phase, because of the optic neuropathy (which can result in permanent blindness if the optic nerve is damaged.)

I think I recall that maybe someone did have radiation for TED. I don’t know what the current evidence based studies show, or what the nationwide practice is. It may vary, for lots of treatments vary in different parts of the country, and/or where people trained.

Having said that, some things, treatments, diagnoses, are also just plain wrong.
Shirley

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in reply to: if you had a lateral wall decompression surgery, please reply #1177238

I had a three wall decompression, including the lateral wall. The main reason for the OD was for optic neuropathy. I think he removed part of the lateral wall. Maybe all of the medial wall. I do have a copy of the procedure someplace, and if I can dig it up, I will write back with more detail.

You sound pretty informed, with info from the surgeon you were consulting with. Did you ask him/her your question about poking at the side of your head ? That did not occur to me, even to ask the question, and I don’t have any issues or notice anything at all.

Good luck getting everything answered, and moving forward with your OD.
SHIRLEY

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in reply to: Saw New Endo–Love her!! #1177210

Bet I know who it is! I’ll send you a PM. Glad you are happy, such a good feeling!

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