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in reply to: GENERAL ANESTHESIA OR LOCAL FOR STRABISMUS SURGERY? #1065406

And I can also see DISTINCT advantages of being asleep while all this is going on!!!!!! ” title=”Very Happy” />

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in reply to: TSI LAB, IS IT AN INDICATOR OF ACTIVE, COLD PHASES TED #1065444

Hi Laurel, that is a really good thought! This is the first year that I have noticed any allergies, scratchy eyes, runny nose, sneezing….etc. For the first time in my life, I have taken Claritin, it does seem to help. Thank you for your response.
Sometimes easy to always think of TED first, especially when it IS my eye!
Shirley

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in reply to: TSI LAB, IS IT AN INDICATOR OF ACTIVE, COLD PHASES TED #1065442

Thank you, Kimberly.
The eye doc (who did the decompression in Feb) said it meant that I may still be in the inflammatory stage.
The peds eye doc (whom I saw couple weeks ago) said that I was ready for strabismus surgery. I want to err on the side of prudence and conservatism, and NOT have the strabismus surgery if I am still in the active phase, so that is why I was wondering if chemosis (which I think is an inflammation between the cornea and eye) means that there is still activity. But I don’t know if it is symptom of TED, or could stand alone, and have nothing to do with TED.
I can always cancel the surgery, scheduled for 6/23. On the other hand, I am looking forward to the surgery whenever I am really in the cold phase. My diplopia is really impacting my life, plus extreme photophobia, and sun glare that makes a "blind spot." I would love to think that strabismus surgery WILL help. AND extreme tearing most of the day.
Kinda discouraged today.
Shirley

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in reply to: I’m Post OD – Day 5…Pls Share your Comments #1065409

Hi Sandy, my OD was in Feb this year, and was an emergent thing, even though in the active phase (big time) bit there was pressure from all the swelling and orbital fat on my optic nerve, and was losing vision and color recognition, so had to do it. I think it is typical for some numbness, and I did, it has resolved by now, and think it was gone by April.
I kept ice on my eye almost full time, head of bed very much elevated at 45 degrees, think that made a lot of difference in my comfort level, if I did not have ice packs on it, there was some pain. All gone by a week, but I kept head of bed up longer than that.
You have had a very long time with Graves, so glad your are finally in the inactive phase. Now my other eye is changing, has chemosis, whatever that is. Like you, my lower muscles are most affected, but greatly affected. I have to tip my head back to see forward and upward, so muscles of neck and back hurt a lot.
I think you will be very happy with the OD, and presume you had a bulging eye which looks a lot better now. On day 5 or so, I was walking around the block, but pretty much wanted to hurry back to my ice packs!
I know I had Graves long before I was officially diagnosed, and really looking forward to the end of the road with some muscle surgery. The whole thing is a real struggle, especially the double vision look ahead and up.

Seems like you are doing everything right, take the pain pills as long as you hurt, that is what they are for. The darn things are constipating, so be aware of that!
I am so happy for you that you have this behind you. I am looking forward to more hews from you, and will be so interested in the strabismus surgery when/if you have it.
Let us know how the numbness is doing. This board is the only thing that keeps me sane sometimes.
shirley

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in reply to: OCTOBER CONFERENCE DATES, QUESTIONS #1065415

Thanks, Ski,
Yes, that certainly is helpful. Do you think that the brochure with this info is on this site anyplace? Just to be sure, before I make the hotel and air reservation? I don’t know if Peter check this site, but if one of your facilitators can contact him so he can provide this info, I think it would be very helpful. From the info you have provided, I suppose there is no reason to think that it will be different this year. I want to it right the first time, though. I do hope there is finite information in the near future. I learned a lot from your post. Like it sounds like the best thing to do is arrive on the 21st in time for the reception and conference material distribution, which i presumes occurs at that time. October seems just around the corner, already!
shirley

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in reply to: Cost of Thyroidectomy #1065423

It is almost impossible to know charges for anything until you get your bills and insurance coverage. Even when I get a lab draw in a clinic, there are charges that make no sense to me. For instance, "observation."

Bobbi’s answer pretty much says it all. I know from personal experience that that charges vary a lot depending on the geographic area of the US. I never know what anything is going to cost until I get my insurance statement or a bill from the hospital.
Your endo doc probably is not the best reference, and she probably does not know, unless she hangs out with surgeons in the coffee room with surgeons, or has learned it from patients. It is even conceivable that a doc gets a kickback if referring for RAI. Not a nice thought, but it is conceivable and can happen.

I am having a really tough time getting past her demeaning comment, but perhaps you are stuck with her.
Until I retired last year, I worked in a recovery room at a university hospital. I can tell you from my recent work life, that the anesthesiologists have no idea what their charges are for individual cases.
Can you tell her that you want a referral to a surgeon (who does this surgery on a regular basis!!) If you cannot gather that information, that is a worry, I think. It is a relatively safe surgery for surgeons who are known for this surgery.

I am beginning to think that the best resource for you might be this board, for people who have had recent experiences with charges for both procedures. But geography, plus the VA are definitely variables. Of course, so is insurance coverage, when you are talking @ out of pocket costs. I am assuming you are a vet, and the VA is your medical provider.

I really am not sure if RAI is really less cost than the surgery. I will TRY to extract this information from former co-workers who might know, but I really doubt it.

Having said all this, as most posts here reflect, you should make a list of pros and cons, with your on preference being #1 on both lists. I wish you well, hope you get your treatment done pretty soon. Keep looking at this board, it is what has kept me sane as I march through Graves’ and thyroid eye disease. The facilitators are great.

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in reply to: new to GD/probably electing surgery/looking for support #1065464

I sense that you are close to the right decision for you! The cabin in the Smokies sounds delightful!
Shirley

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in reply to: Recovery time? #1065425

From my experience, I think it would be pretty challenging to return at three weeks, if it has to be full time right away, I’d wait at least four, maybe five. Do you have the choice of shorter hours? Like return @ four hours/day for a couple weeks?
If sick/benefit time is limited, and you would like to/must return asap, I would do four hours at three weeks.
It is pretty tiring to always be "on," and your job sounds pretty demanding, plus you will be surprised at the degree of fatigue you may have after surgery. That took me by surprise.
If you can stay off six weeks, you will feel super good at four, probably, and you can do the things or take the trips you never have time to do cause you are working full time!!!!(:
shirley

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in reply to: TSI LAB, IS IT AN INDICATOR OF ACTIVE, COLD PHASES TED #1065440

Good thought! I did not think of it at all. In this case, I am well over six months from steroid from either lab.
Think I iwill check the older logs, see if chemosis is mentioned. Has it come up in any conference?

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in reply to: TSI LAB, IS IT AN INDICATOR OF ACTIVE, COLD PHASES TED #1065438

Yes, that is what I have concluded. I probably will defer the strabismus surgery, opting for a longer period of time to be sure I am in the fibrotic stage. Hard to do, though. I want to MOVE FORWARD! Thank you for your reply.
Shirley

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in reply to: Surgery affects on TSH #1065430

Hi Cindy,
What a marvelous outcome for you and your brother! So glad you were a good match.
I think your endocrinologist is the person who can answer your question. If I were in your position, I would also ask if I could have my thyroid labs drawn before September, so you have this finite information.
Lots of variables contribute to fatigue, but I think it is less likely that it is related to your anesthesia this far out after your surgery, but it certainly is possible. Another question for the surgeon?
Are you sleeping well? Sleep deprivation is another consideration.
Best wishes to you, Cindy. What a wonderful life giving gift to your brother.
Shirley

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in reply to: new to GD/probably electing surgery/looking for support #1065458

Hi lhc11!
You have learned from the posts that there is no "right" answer, except the one that YOU choose, with the help of your endo and your surgeon, combined with your own conundrum of thoughts. You have done everything so well. I would like to tell you again that you seem to have ended up with marvelous docs.
A new thought for you. I think you will feel VAST RELIEF and HAVE MUCH MORE HOPE AND CONFIDENCE once you have made your decision. My own experience with myself is that I do not do well with limbo, even when I am creating it myself. I feel less confident and in control. Once I have made a final decision, it is like a huge weight is off my mind. Then I want to take ACTION, move forward. People are different, so you can also throw in this thought among your pros and cons.

My TT barely slowed me down, and at the time I had a lot on my plate. A 3 month old, a husband who was a third year med student, a full time job as an RN, and breast feeding. I think I went back to work, which was fairly strenuous, in three weeks. That was a dumb thing to do. Because I had so much going on in my life, and my work involved a lot of lifting, I would replay that part of my post op recovery, stay out at least five weeks.
I equate "sore neck" post op with the experience of "sleeping wrong" and waking up with soreness. If you choose to continue yoga, you can accomodate to any temporary limitatio. Probably stretching does not make a lot of sense until your surgeon says it is ok. There is an incision which needs to heal.” title=”Smile” /> Not sure how critical yoga is in your life, but if you choose a TT, you can discuss it with him.

I am very impressed with the quick response from your surgeon. His comments are appropriate and reassuring.
In the end, I am sure you will make the right decision for you.
I have just been through the decision of choosing a surgeon for another procedure. I talked to five! I was a mess until I made a final decision. Then I was a peace. Felt I had done the right amount of thinking, homework, pros and cons, and the day looked brighter from that moment forward.

Whatever you decide, it will have been the right decision for you. I hope you are going to the reunion where the weather is nice. Your thoughts of getting away from this for a while, being with your husband, getting away from research on your iphone, sounds like a happy interlude for you. Distractions have a positive place in this process, too!

I am sorry you had to even KNOW about this website. I do not like to have Graves, and I look forward to the time when I have gone through the whole Graves’ process. Then I plan to be one of the people on this site who can tell others that "Yes, this WILL end!"
Shirley

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in reply to: new to GD/probably electing surgery/looking for support #1065449

Hi, Ihc11!!!!!!
I just got home, pretty tired now, time for a small siesta after I write this quick note, with more to come later tonight.
You will LOVE this site. Here is a suggestion for instant gratification. Go to the search" box, type in thyroidectomy, do the same for RAI. I did not find the particular book you referenced to be helpful. I prefer endocrinologists familiar with Graves, surgeons who do the surgery, and ophthamologists who have Graves patients. This site, and your docs, is where you want to be. Not too far back in the posts, there is someone wrestling with the same issues you re having right not.
Maybe you will see that thread.
Question, do you feel better now that your are getting your hyper feelings under control,…that you can go back and finish the school year? How does that feel when I ask the question? I know it’s work, but I am sure it has been hard to be on medical leave, too.
Lots of folks on this site have had RAI, including some or most of the facilitators.
I had the surgery, really, it is not that big a deal post op recovery wise. Important thing is to get a surgeon who understands all of it, and does the surgery on a regular basis. They know their anatomical landmarks, and you will be fine! From my view, concerns @ your voice is related to the skill of your surgeon. Check it out with your doc. I don’t think anyone on this site has mentioned that issue.
Probably you are getting very good referrals for this. Also had it at a univ. hospital, Iowa City. I wanted it done. NOw!~
I would say that your interest in getting pregnant is an additional reason for having the thyroidectomy.
I would say that I was more tired for 2-3 weeks after the general, my neck throat was a little sore, not enough to even take anything for it. I wanted to know that i would never be hyper again. In fact, it took several decades before I needed to take a thyroid supplement.
I suspect you will get a lot of reassuring responses. Check the old posts until you do. Sounds like you have really good group of docs, yea!
I know I did not address everything, but it is now raining in Seattle, and we are to have very strong winds, and I think I will add a short nap to that mix!
Shirley

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in reply to: PTU and Liver failure #1065636

That is interesting. I have two questions to ponder.
1. Is there a published study to reference regarding long term use of PTU? I would surmise that the frequency of liver involvement in the 1st 90 days might be skewed information, for using the drug usually has the goal of getting a person to a more steady state (ie, not toxic, TSH is suppressed) SO THAT RAI or TT can be the next step.
2. If #1 proves to be valid =lots more folks are on PTU short term than long term, the sample of the population for long term PTU use is very small (as opposed to short term) and unless it were a blinded study with labs done on both groups, the conclusion might not be very reliable. In the past, long term PTU has not been considered a treatment option, but a way to get to the next step.
If there are people on long term PTU, the long term needs to be defined (5 years, 10 years, more than that?)

Sorry, I am rambling, but I sure would like a reference for the information. Seems to me that long term, whatever it is, has not been around long enough to draw valid conclusions about its’ validity.

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in reply to: PTU and Liver failure #1065634

Your doctor was not lying. As the other posts say, when a person is on PTU you need to be monitered by labs.
I had PTU in 1957, had labs including hepatic panels.
I wish you the best in all the decisions you make.

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