Serious Decision

I have a serious decision to make.  Because of a mistake, my pacer clinic made I had several additional tests to ensure my 100% paced heart leads were not damaged in reviving me in the ER in February 2024.  A heart scan found a large thyroid nodule that required additional testing.

Today I met with an Ear, Nose, and Throat (ENT) surgeon doctor who gave me the option of having my thyroid removed or monitoring it for another year.  The ENT surgeon is concerned about my heart being 100% paced and the 3 hours I would be under anesthesia.  He is concerned with the medicine used for general anesthesia I may go into cardiac arrest and die during surgery.

My biopsy showed my thyroid nodule as benign even being extremely large only on the right side.  My thyroid has caused other issues with eating, swallowing, choking, voice changed (horse all the time), and some other minor issues since February.

I was considering just having the thyroid removed, the ENT said he would take it out if I wanted to proceed but then gave me a WARNING about the anesthesia.  I said I could not make the decision today but needed time to consider all the risks before proceeding.

I have been scheduled for a swallowing X-ray test next followed up by the speech therapist for additional testing.

Has anyone had surgery that is 100% paced and been warned about the risk of cardiac arrest while out?  A lot of stress today.


6 Comments

Thyroid

by AgentX86 - 2024-05-03 19:27:29

I think your next step is pretty clear.  Get your cardiologist/EP, ENT, and anesthesiologist in a room and have them decide what the dangers are.  You can't be expected to make an informed decision without this information.

One other suggestion

by Andiek11 - 2024-05-03 20:25:59

If this is not considered an emergency, I'd encourage you to go for a ENT second opinion.  If you current system is a smaller community system, see if you can get a second opinion at a larger medical system.  (Yeah, I know that insurance often has a voice in where one can go and who they can see, but it's worth exploring).  You want someone who has ton's of experience and is up-to-date with newer options, maybe even non-surgical options, if any are available.   Good luck and good on you for take the time necessary to make an informed decision. 

Surgery

by Lavender - 2024-05-03 21:25:17

I am 100% dependent on my CRT-P. Five years ago, even before I had a pacemaker, I had complete heart block during gallbladder removal due to the anesthesia.  No one suggested a pacemaker and I seemed fine. A couple of months later, I suffered a split tear of the peroneal tendon in my foot. The foot surgeon wouldn't repair it because I had had a complete heart block event following general anesthesia. 

He tried two courses of steroid injections to help with the fluid and inflammation in the foot. It didn't help. He suggested that I get used to wearing an ankle brace. The ankle continued to bother me and nine months later, I started fainting from my rare heart arrhythmia called Ventricular standstill. I ended up with an emergency pacemaker. 

A year ago, I sought an opinion from a second foot surgeon. He also tried an injection to help with the pain and swelling. It didn't help. He doesn't want to operate on it because of my heart...even though I have a pacemaker.

I have lived with this discomfort and inability to walk long distances for several years. I resigned myself to wearing the brace and keeping it elevated often, or using ice when it's extra painful. 

I think you should at least get a second opinion. Also cardiac clearance. 

By the way, I had the barium swallow test a few years ago when I had some issues. It's not too bad and for me, nothing was found. 

For you, waiting another year might mean an even bigger area to remove if it continues to grow. I would pursue learning more about the safety of surgery and see if it's feasible to move forward.  

A difficult decision

by Gemita - 2024-05-04 02:55:06

Stache, firstly you should be guided by your doctors but these are my initial thoughts.  Your thyroid is sizeable and already causing real symptoms.  As it grows symptoms will likely get worse and of course the fear of malignancy will always be there as the size of the nodule increases.

This needs a multi disciplinary team to discuss your case and to decide on the best way forward, perhaps to go ahead with surgery but to have the cardiology/cardiothoracic surgical team present during the procedure to monitor you closely for any signs of distress.   They will know which treatments will be necessary should you get into trouble.

Doing nothing is not an option in my opinion, with the symptoms you have at the moment, since these are real and already causing diffculties.  Also if you leave the nodule, it will likely get bigger and the procedure will then be more complex and take longer in the future.  This will need sorting at some stage, so why put off the inevitable.   You could ask whether a shorter procedure to reduce the size of the nodule is at all possible or whether other treatments might be effective in shrinking this sizeable nodule, like medication?

Although many studies have shown no difference between small and large nodules concerning false negatives of fine needle aspiration biopsy (FNAB), many clinicians recommend surgical resection for nodules larger than 4 cm due to an increased risk of malignancy and an increased false-negative rate, even when the FNAB result is benign.  

A difficult decision, but one that cannot be put on hold in my opinion due to your symptoms.  Stay safe and good luck Stache

Decisions

by Good Dog - 2024-05-04 07:34:08

I think there is little doubt that you should have it removed if it is continuing to grow and also causing you problems already. First-off, I assume that you are aware that living without your thyroid is no big deal, my twin sister and also a couple of young guys that I know had their thyroid removed  in their 30's due to cancer. They simply take Levothyroxine daily (hormone replacement) and they all live a completely normal life. Of course, your concerns are also for your heart. It makes sense that if your PM is functioning properly and the hospital is prepared with backup measures you'll likely be fine. However, I do think that the other suggestions you received here are very prudent. A meeting or discussion between the anesthesiologist, cardiologist and surgeon is not only critically important, it is essential and should give them (and you) peace of mind. If you are not able to attend it, you at least need to know the outcome in detail so you can rest easy. There should always be a contingency plan. A second opinion in a different hospital system is also always a wise move. However, it should always be with someone not affiliated with your current hospital system.

As long as you are confident going into this that you have all the bases covered you should be comfortable with your decision and the end-result may be very gradifying for you!

I wish you the very best!

Sincerely,

Dave

Surgery

by Julros - 2024-05-04 13:47:51

I agree with a second opinion, and a conference between the ENT surgeon, anesthesia and cardiology. Something just doesn't sound right to me to say you couldn't have general anesthesia for more than three hours. I had an ablation under a general that lasted 4 hours and am in complete heart block (although I still have an underlying pulse of 30). The anesthesia is not going prevent your pacemaker from working, or your heart muscle from contracting. 

Thyroid surgery is a big deal, due to potential post-op swelling and bleeding. Also, they need to be very careful about the parathyroid glands being disrupted and messing with your calcium levels. But yeah, if the nodule is interfering with eating or breathing, it needs to be addressed. 

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