how everyone is doing after parathyroidectomy

All the muscles in my face are taut since not too long after I had my fourth neck surgery and second parathyroidectomy on 7 March 2014 (it's now 17 April). I can't take nsaids (chronic kidney disease), so I take arthritis-strength Tylenol and use arnica gel on achy TMJs as well as ice and heat (mainly heat at this point) on my neck. I also have frequent tinnitus around my left TMJs, and sometimes chewing is very uncomfortable if not totally impossible. Suggestions? Clearly my surgeon did a lot of work in there and I've been miserable!! Here's the story: The first neck surgery was a partial thyroidectomy; I had a probable cancer pre-op dx but in surgery the lobe looked fine; 13 days later the results came in and it was something the experts had never seen before in a live patient--multifocal follicular variant of papillary microcarcinoma. Since there were four "micro-sprouts" (my name for them!), my doctors and I decided it would be wisest to go in for more, so the left lobe was removed and found to have two micropapillaries. Standard tx for thyca then included radioiodine I-131 ablation to wipe out what little my surgeon couldn't get. This was at Penn in late '01 and he's known to be one of the best surgical endocrinologists and oncologists around. In April '03 I had a supernumerary ectopic (thymic) parathyroid removed, and after almost 11 years of medical management I had to have another--one of the four most of us have--removed in March of this year. After four neck surgeries I can safely call myself a veteran...this one has been truly rough on me and the worst of it has been since I went back to work two weeks post-op. I also went back to singing (I'm in a chorus) at the same time, after testing my voice occasionally at home, but I've had to miss a couple of rehearsals; singing has at times been just too much of a strain on the muscles.

Meant to say "left TMJ" without the "s"...also: I know I went back to normal life too soon...I'm trying to find the best way(s) to be more comfortable now!

Thank you for posing the question.

Although presumably the moderators here will continue to disallow a hyperlink, nevertheless I will make the attempt. Very close to 1,000 members now post in the group Parathyroid Connections, who are from various parts of the world & in varying stages of their journeys ranging from pre-diagnosis to post-op recoveries. They are also sharing experiences from endocrine/general surgeon multidisciplinarian surgical centers, as well as some from highly experienced ENT surgeons. This is inclusive of the U.S., as well as Canada, UK, Australia, New Zealand, et al

 ***this post is edited by moderator *** *** web addresses not allowed*** Please read our Terms of Use

Hi I was wondering how you are feeling now. I had 1 parathyroid removed almost 4 weeks ago and I am struggling with very achy legs (muscle cramping, bone pain). Weakness is still there but may be improving a little. Very anxious all the time. All my labs are perfect. Before I had surgery my calcium was 13 and PTH was 168. Calcium dropped to 9 almost immediately. My GP said even though values are normal my body needs time to get used to that sudden drop. I've started taking calcium 3 times a day about 5 days ago but not really helping. I'm afraid something else may be going on. Hope you are feeling better. Please let me know. Thanks

I am 60 and had parathyroid surgery in May 2014 in MN. After surgery, I experienced fatigue for three months, which I was told was normal. Then I experienced side effects from my statin drug, that had not been a problem before surgery. Finally, In November, I passed a calcium kidney stone.

I am from Australia and had a parathyroidectomy last week. For the first couple of days I felt great but then I started to get tingling in my feet and hands. Now the pain is so intense from my knees and elbows down it is worse than before the operation. What is going on

My story is the same..I had two bad parathyroids removed in November 2014..I am having a lot of trouble with low calcium..and yes,,I thought I would leave Tampa feeling like a million bucks..This did not happen..I was in such bad pain,and they don't give you pain pills..it's now six weeks,,I feel good,,I'm still have these weird sensations in my legs and arms..also,,the main office will not give you a doctors note for a leave of absent from work for anything more than seven days,,,7 days...I am a firefighter and they would only give me a sick note for seven days....I was not better in one week,,let alone four weeks....have a good family doctor because once you leave Tampa,,you are on your own,you will not hear from any of the doctors after your surgery.....

I agree with you about dr Norman..I had the surgery in November 2014..He removed two tumors and sent me home..No pain pills,no follow up..nothing..I am a firefighter and he would only write a medical leave note for seven days off from work..I was out sick for four weeks and the doctor my fire dept sent me too said dr Norman is a id**t too say I can go back too work in one week..Also,,my calcium was 10.2 yesterday..dr Norman said it would go down to the 9's...I now have severe leg pain,arm pain,ulcer still hurts me,,I'm still getting high blood pressure and fast heart beat..it's been six weeks since my surgery and I feel like garbage..I called doctor Norman,,doctor Boone called me back and said it takes time too get better..they are a parathyroid surgery factory..in one door and out the back door..no follow up,,nothing..once you leave your on your own..

Hi thank you for your honest recount of your surgery. I think everyone with parathyroid issues has heard of Dr. Norman and his site makes him out to be God like.... That bothered me. Although like anyone wanted the best surgeon I could find. Money was an issue for me so flying to Florida was not a consideration.
I'm sorry you had trouble with recovery but I think more people have some problems with recovery than reported. Just seemed odd these people were under anesthesia and then out dancing in an hour. Makes no sense along with the fact that most of us with this are over 50. Wouldn't be dancing even without a surgery!
Im only 4 days post op and im doing ok but real tired. My major complaint was nausea and that's gone. I was amazed it left so quickly. I still have some tingling, hands and feet, and face. Trying to get around a little each day, so I can get back in gear. Right now I'm in neutral. Hope you are doing well...your post jad me laughing...take care!

Hi, I'm not sure if you will get this message, being it's been so long since you posted this. I had surgery last month in Tampa and they removed two parathyroid tumors. I just had my calcium checked and it was 10.2 so they said to cut back on calcium. Was feeling better last week but now I'm having some bone pain again. Just wanted to see how you were doing and compare notes. Hope you get this.

Hi, I just came home from hospital yesterday and was looking up after surgery experiences, and found this. I am very tired, before the surgery was the opposite - jumpy, kept waking up at night. Good thing is I slept through the night finally so I hope It helps that. I guess the tiredness is normal.

How is everybody else?

Surgeon took out 3 of my parathyroid glands although only one showed up as enlarged, after 3 different scans. It's been difficult to get information on the surgery itself however so I was worried, & thought maybe I made a mistake not going to Florida, but reading the comments I'm glad I didn't; thanks for the honest feedback.

I had asked my surgeon a couple of times beforehand about checking each gland as I was afraid a bad one would be left in as mentioned on the Norman website, now I'm wondering if she took 3 so I wouldn't complain! Hope I don't go hypo.

Funny thing is my local endo didn't want to send me for surgery consult, only reluctantly did so because my bone density was worse than the last.

they have me on 7,500 mg. of Tums a day for calcium. Not crazy about Tums as worry it's not getting absorbed but at my follow-up Wednesday they will talk about a different kind.

Just wondering about others recovery now that time has gone by.

Hey. I had 3.5 removed in January. The final 1/2 was stitched back in and seems to be working ok. I did have a calcium crash on day 3 followed by extreme bone pain in my legs and feet, but now its May and I'm ok. I take calcium pills every morning but I am in pretty good shape. My head is clear, I don't have stomach ache and appetite loss, I'm not permanently tired, dry mouth and eyes etc. IT worked as far as I'm concerned. get the full "all clear" sometime in July. My surgeon was from Johns Hopkins in Baltimore. Excellent surgeon. I think a lot of folks continuing to suffer long after this surgery have other, unresolved medical issues in many instances.

I just now figured out why I might be having my life ruined by severe muscle spasms and cramping. It may be due to the parathyroid surgery I had many years ago.

I had successful removal of one parathyroid over twenty years ago. Now for the last two years I have begun to experience severe muscle cramping and twitching. I have to drink large glasses of water daily, as well as over two quarts of water every evening just so I can sleep without jumping out of bed in order to flatten my feet and stop the hideous pain up and down my legs. I spend a lot of time during the night getting up and down going back and forth to the bathroom. My life revolves around the cramping and spasms.

The cramping is beginning to spread to my entire body. I have especially painful pulling of a thin line of muscle or a ligament in the inner thighs. This is new. Those are the ones that cause me to beg for mercy, and has now caused me to find another doctor.

My doctor has me taking calcium and vitamin D, but it does not help at all. I have come to the conclusion that I need to give up on my regular doctor and consult an endocrinologist.

The best of luck to everyone. And thank you to "Guest" who mentioned the group called "Parathyroid Connections"....I will look for the group on Google.

I took printouts from dr.Normans website to my endocronologist and he about flipped out! He said he personally had cleaned up several of his messes. (his words) He sent me to a wonderful, excellent surgeon and I am 2 weeks post surgery and I am feeling better every day. They did the MIRP and looked at all 4 glands. Removed 1 with adenoma and 1 with hyperplasia. I live in East Tennessee and can recommend this dr.

How do you feel now. My mum is going to have this done because of similar reasons. Are your aces and pains gone completely ?