[VanIsleGal July 23, 2012 at 7:51 pm Post count: 66]

#1059226

I went to my surgeon for the 1st time today. He outlined the risk factors for surgery. They are excessive bleeding meaning being taken back to the operating room after surgery, thyroid storm with possibility of death and being in ICU to save a person’s life is the norm, hoarse voice the rest of my life affecting my job (possibly not being able to work at my job as a university educator), removing the parathyroids whereby I would have to take ‘horse’ pills the rest of my life (calcium, Vitamin D) which cost $100 a month, phantom pain, infection, and not being able to feel that part of my neck again where the scar would be.

The surgeon put a scope through my nose to check my vocal cords. This was painful and I still have a headache from this. I wish I was forewarned to bring Advil for pain relief to get through the rest of my day.

He also said the surgery was not a walk in the park and required a minimum 2 night stay in hospital. I need an ultrasound and possibly a CAT scan before surgery so he can better see the gland.

He has only operated on one other Graves’ patient this year. He has done many thyroid surgeries just not for Graves’ as most people have RAI. He said the Graves’ thyroid is very bloody and messy so that is why iodine is given prior to surgery to make the thyroid less vascular.

It sounds like the risk factors are increased when the thyroid is swollen. He didn’t think my thyroid size would decrease much if at all, so I would have surgery with the gland swollen. He also asked if I had been near a nuclear disaster site.

Knowing all of this, I have to decide if surgery is right for me. I am confused now. I have refused RAI twice and have had Graves’ 3 times now.

Why have some of you chosen surgery over RAI?

Hope everyone is doing okay and enjoying summer!

[gatorgirly July 24, 2012 at 5:57 am Post count: 326]

#1173138

Hi VanIsleGal,

I didn’t end up having surgery (I chose RAI), but my appointment with the surgeon was much the same. I was 25, almost 26 at the time, and I wanted to explore all my options. The surgeon is a general surgeon but since I worked at the hospital, I knew he had an excellent track record and bedside manner, and performed hundreds of thyroidectomies. However, I got the impression that I wasn’t worth his time or money – he wasn’t rude at all, but he was very graphic with the risks and told me my voice might never be the same. His position was that he did just not feel like someone at my age in otherwise good health should undergo a risky surgery when RAI was a much safer alternative. I struggled for a long time until I finally met with the nuclear radiologist at the hospital to discuss RAI in greater detail, since my endocrinologist really didn’t tell me much about it. In the end, I decided on RAI for a number of reasons, and honestly, finances and recovery time were probably the biggest two reasons. In the end, it worked out. But I think surgeons want to be clear that all surgery carries risks, and especially when there are other alternatives to surgery, they want to be sure we are making the best decision for ourselves.

If I had to do it all over again, I would still do the RAI. That wasn’t a walk in the park either. I felt pretty lousy in the weeks after and it took six months to go hypo and start Synthroid, and I developed moderate TED. Unfortunately, I don’t think anything about Graves is a walk in the park and you need to decide which treatment is most appropriate for you. It might help to get a second opinion from another surgeon, and maybe explain how your first appointment went and maybe he or she will be a bit more realistic instead of just stating all the risk. You know the risks, you need to decide what is the lesser of two evils. I’m assuming since you’ve had Graves three times now that means you’ve tried to achieve remission via ATDs and failed? Remission wasn’t in my cards either, and after a year of still extremely hyper levels despite huge doses of PTU, I had to decide. Good luck!

[snelsen July 24, 2012 at 7:11 am Post count: 1909]

#1173139

Hi, Vanisle gal, just a brief note now. Later in the day, I want to take the time to reference some specific posts that are very helpful and current from people who chose a thyroidectomy, as I did. You have probably already seen that most of us have our own reasons which either evolve over time after weighing the pros and cons. And our pros and cons vary, and are as individual as we are.

I chose surgery. From my view, it was quick, there was not a long waiting period afterward to take back my life. I was in my early 20’s. I had a good general surgeon who “did” thyroidectomies. I had pets and animals, did not want to bother with precautions. I wanted to have a 2nd child when I decided I wanted one, and there were no precautions regarding pregnancy as there are with RAI. I think it helped me at the time because I had see the surgery in the operating room (I was a student nurse at the time.)

Sometimes we hear the cautions about the complications that CAN happen with surgery, and they get processed by the person who is going to be the patient as extremely scary. As an example, taking KI drops (potassium iodine) a few days before the surgery, does reduce the vasculariy (amount of blood flow to the gland, and that is a good thing. But it makes sense to do that, just as people are told to not take any anticoagulants (aspirin, motrin etc) before any surgery, even having your wisdom tooth pulled. So it’s good medicine to do the pre op that way. I can still remember the taste of those drops, though. as I recall orange juice helps cut the metalic taste.
It sounds like your surgeon is very competent, very thorough, doing all the preparation he needs with the tests to know the landmarks.

Anesthesia has changed so much in the last 20 years, all for the good. almost everyone I saw in pre-op right before they go in for their procedure, had zofran pre-op and intra-op, just as you plan to do. If you read and hear from others, I think you will find that nausea is a complete non-issue with this surgery. IT was for me, zofran did not exist back then. Generally, it is the belly surgeries and some ear/ENT surgeries-and longer surgeries- that people experience nausea with. I had no nausea, a slight sore throat, mostly sore neck muscles. The surgery lasted less than 2 hours. But it is good to tell the anesthesiologist if you have a history.

I just thought of two recent experiences of good posts to read.
Adenure (very recent) and lhc11 (or lchll, I can never remember.
In summary to my brief post which is not brief anymore, I chose surgery, I did not want RAI, and would chose surgery again.
Shirley

[Sarah_tc32 July 24, 2012 at 7:27 am Post count: 1]

#1173140

You need to see a different surgeon if you are considering having this done!!! I would never consider having this done with anyone who has only done this once! This person sounds pretty “gloom and doom”. I had surgery (by a very skilled surgeon at The Mayo Clinic) and did not experience any of the possible complications. Surgery went well! I still have my parathyroids, and I was home the next day. I did wake up with a hoarse voice, but that was gone after about a month.

[adenure July 24, 2012 at 9:50 am Post count: 491]

#1173141

Hi!

Well, that sure is a lot to take in! I feel for you, as the 1st surgeon I spoke with pretty much said the same type of thing (although not quite as abruptly!) I left in tears not knowing what to do. I was fortunate to have access to another surgeon who gave me a lot more confidence in my decision to proceed with surgery which I am very glad I did. Yes, all those risks that your surgeon told you are very real and it is his job to inform you of them. My endo. was pushing RAI over surgery every time I talked with him. His big concern was the invasiveness of the surgery, the various factors, risks. In his mind, RAI was a “no brainer” as he put it. Yet, for me, it wasn’t that simple. I have 4 young children including a nursing 8 month old and RAI never sat well with me. That doesn’t mean it isn’t the right choice for many people, but for me, it didn’t feel right. So, I opted for surgery. My endo. supported my decision, but it wasn’t his recommendation.

I think, that if you’re going to choose surgery, you want to be sure that you are as good a candidate as you can possibly be. Make sure your thyroid levels are stable, take the SSKI drops for 7-10 days before surgery (prescription), if you have any heart rate issues, stay on your betablocker. Have you had surgery before? Have you had any issues with intubation? Some people are hard to intubate, and I could see that if this is a problem you have, a thyroidectomy might be harder on you than on someone else. My mom is someone who has a difficult time with intubation and can’t swallow pills bc of where her larynx is located- it happens I guess. If you are a good candidate medically and your confident in your surgeon and you feel that, deep down, this is right for you, then knowing all the risks and willing to take them, move forward with your decision. This is a hard decision, I know. I was really set on surgery, but I still cried, agonized, and worried like crazy. It’s normal. Look realistically and objectively at your circumstances (especially how balanced you are thyroid level-speaking) and then decide. Is your endo. supportive of you decision (even if it isn’t his recommendation)?

Like I said, I’m really happy about how my surgery went; I was very fortunate. Everything went as well as it could have with no complications. I know not everyone comes out of surgery as well as I did, but I know a lot people do. Hhchong had a thyroidectomy (on the boards here) 2 weeks after I did and did very well, Shirley did great, I did very well, PolishTym (I believe?) did well. So, good outcomes do happen (for both surgery & RAI). Figure out if your’e a good candidate for surgery and then decide. Let us know how you’re doing & what you decide on.

Alexis

[Carito71 July 24, 2012 at 9:52 am Post count: 333]

#1173142

Hello.

At the moment I’m on Methimazole and hoping that it will help me achieve normal levels. Once there, I will have to decide if I continue with the Rx in hopes for remission or if I go the RAI or surgery route. I haven’t investigated everything well but I would like to continue with the Rx in hopes of remission. As a second choice, I lean more towards surgery. I’m not too comfortable with the radioactive option. My TSI was elevated and I’m afraid of how it will affect my eyes. Also, I’m afraid of the radiation itself.

One of the things with surgery is that you will always be told the negatives. And if not, you should. You can only make the best decision if you know the risks as well …. An informed consent form will have to be signed by you before the surgery. The nurse will help you with that but is the Dr. who has to explain everything about the surgery and I think that is what your Dr. is trying to do for you.

I guess you will need to make a pros and cons list and decide what you could live with.

Wish you the very best with your decision. GD is so complicated and makes us make hard decisions. Please keep us posted. I would love to read what you decide and why.

Caro

[VanIsleGal July 24, 2012 at 1:44 pm Post count: 66]

#1173143

Oh My Gosh…all your responses have helped me so much!

Gatorgily, this is how I felt but didn’t even realize it until you said it! The surgeon was questioning why I wouldn’t do RAI, but in a nice way, I think he just wanted the facts. Yes I was in remission for about 4 years the first time and only about a year the 2nd time. I love the new info on remission which includes taking small doses even while in remission. I wish I had of known about and tried this method. I am not a good candidate for remission with my thyroid quite large, high antibodies, and the disease is quite aggressive as I am on 40 mg of Tapazole a day.

Snelsen, yes I have the concern with the precautions. If the radiation is safe for me why are there precautions for others? I have 3 cats and no place to stay really but at home if I had RAI. I have never been nauseous after surgery but one time after lung surgery I woke up trying to get off the bed and I was screaming. It was like a nightmare. I don’t know what I was given.

Sarah, he has done many surgeries including many this year, but most are for cancer patients, not Graves’, since RAI is the most common treatment for Graves’. I read about the surgeon before going to see him and he is a top surgeon in my city. He graduated in the 90’s I believe from Univ of Toronto, a top medical university in Canada. The hoarse voice would scare me!

Hi Alexis! Didn’t you just have surgery? I will look back at your posts when I have more time. I have had 5 surgeries, 4 being quite major requiring long hospital stays. I guess after the ultrasound and CAT scan the surgeon will inform me if I am a good candidate for surgery.

Hi Caro! I am thinking of remission again too. If my mom found this out she would wring my neck! I have had the problem where the disease came back so quickly that I didn’t catch it in time and it got out of hand. In the spring I had pneumonia and blamed the weakness and fast heart rate on my lungs. I didn’t catch the Graves’ for another month. Doctors here at not very supportive of people who chose remission rather than a treatment option.

Thank you all so much for sharing and caring! It really helps to talk with people going through the same thing. xoxo

[Carito71 July 24, 2012 at 1:58 pm Post count: 333]

#1173144

VanlsleGal,

You mentioned you are not a good candidate for remission. I wanted to ask you, where your TSI #s looked at when you went on remission before? Is that what the Dr is basing his/her information about you not being a good candidate? I’m asking because my goal, if the Rx works for me, is to work towards remission but like you, I’m on a high dose of Methimazole. I take 30mg/day. My TSI is 237. If I may ask, what was your TSI when you accomplished remission? You mentioned that your antibodies were high. Is the TSI what you are referring to? I have SO much to learn!

Caro

[VanIsleGal July 24, 2012 at 8:18 pm Post count: 66]

#1173145

Oh I have lots to learn too! The only antibody that I have had tested is called TSH Receptor Ab. I don’t know if this is the same as TBI? I have had 3 endocrinologists and my old results are with them, so I don’t know numbers. My latest one is online so I have that one. It is 69.8 with normal being below 1.8. I was on tapazole when I was tested so don’t know the number before medication. I am not a good candidate for remission because I have come out of remission twice and my thyroid is quite overactive. I have never been hypothyroid. I damaged my heart the 2nd time with Graves’ and I think my mom is upset because I didn’t get the RAI after the 1st time. The endo told me my chances for remission aren’t good with two failed remissions and having Graves’ a 3rd time. I am still leaning toward the surgery. Not sure yet though. I go on holidays on Saturday and probably won’t be making any decisions until I come back the middle of August!

[Carito71 July 25, 2012 at 8:55 am Post count: 333]

#1173146

Hello VanlsleGal,

I see. I haven’t had a TSH Receptor Ab done. Or at least I don’t think I have. I had the TPO Ab but I don’t think is the same thing. I’m sorry to hear you have come out of remission twice already. I think I remember reading here when I first joined that the TSI has to be low when stopping the medications to increase our chances of staying in remission. I read the other day thought that some researchers believe that it is not just with medications that can help achieve the remission. They believe is the actual state of being euthyroid that helps the body heal the immune system so that can also, they believe, happen with surgery. Well, I wish you the very best on your time off. Keep us posted.

Caro

[VanIsleGal July 25, 2012 at 12:33 pm Post count: 66]

#1173147

Hi Caro!

I think it is the same antibody test! http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

They don’t use it much here. I think the test is expensive and it takes a couple of weeks to get the results back. For me, it was sent to Vancouver and I live in Victoria, on a big island near Vancouver and Seattle in Canada.

Since they don’t advocate for remission here my 3 endos have never given me info about remission. Are they more supportive of remission where you live?

Keep us posted too! Take care of yourself! xoxo

[jaqeinquotation July 26, 2012 at 4:03 pm Post count: 131]

#1173148

Can you explain how you had Graves 3xs…I didn’t know this was possible

[adenure July 26, 2012 at 4:22 pm Post count: 491]

#1173149

I think VanIsle Gal means that she had relapses. She went into remission and then relapsed twice (the first bout with hyperthyroidism was probably her Graves diagnosis).

Alexis

[Carito71 July 31, 2012 at 11:46 am Post count: 333]

#1173150

VanIsleGal wrote:

Hi Caro!

I think it is the same antibody test! http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

They don’t use it much here. I think the test is expensive and it takes a couple of weeks to get the results back. For me, it was sent to Vancouver and I live in Victoria, on a big island near Vancouver and Seattle in Canada.

Since they don’t advocate for remission here my 3 endos have never given me info about remission. Are they more supportive of remission where you live?

Keep us posted too! Take care of yourself! xoxo

So it is the same … thanks for looking that up for me. You live in a such a beautiful place. I visited Seattle a few years back. All around there is beautiful. I don’t know how supportive about remission my Dr is going to be b/c I just started the journey but I’ll get a better picture when I see him again in 2 weeks. I live in a small town so here were I live there are not many Endo Drs. unfortunately and at least one of the few is not at all into GD (he is into diabetes instead). The one I’m seeing right now does have several GD patients and his nurse just had a TT but she does not have GD.

Caro

[Darcy43 July 31, 2012 at 12:29 pm Post count: 125]

#1173151

I am glad I read this post….

Helped tremendously.

Alexis if I could hug you through the board…I would.

Still trying to decided but this is great information.

Vanlsle Gal good luck.

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