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Parathyroid Surgery
I am scheduled for parathyroid surgery due to having primary hyperparathyroidism and am wondering who else may have gone through this surgery and if so, what was your experience? I have not yet met with my surgeon so I do not know what to expect aside from what I've read online. I'd like to get as much information as possible. Thanks.
My scan also showed a tumor, but unfortunately I don't get to see my Endo until next week. I was wondering if anyone knows of a good surgeon in the Miami area that has done this. Going to Tampa to see Dr. Norman would be an option, but he is kind of expensive.
Has anyone gone to Dr. James Norman in Tampa Florida? I am going to have the parathyroid surgery and what I have read on the net he is the one that created the mini surgery and is well know. I live in Ky. and really would feel better knowing that this man does thousands of these surgeries every year. Has anyone been treated by him?
drmy: I'm glad you had a successful surgery. I did not have any problems directly after surgery, the joint pains developed a few weeks afterwards, lasted for months. I also needed reconstructive surgery on the scar which healed as a keloid (I'm not prone to keloids).
Phil: I was told that with all the nerves surrounding the area where the parathyroids are, that it WAS a possibility that a nerve could be nicked around the voicebox. I'm sorry you weren't told about this possibility.
I'm sure it must be rare. Is there some sort of therapy you could undergo for voice training maybe? (Just a thought).
I've recovered from the parathyroidectomy in 2002 fine (no more joint pains), but still have the urticaria I also developed after surgery. (rash/redness all over body)...for 2 years now I've had an EXtremely high level of PTH (343-787), last test showed it's 'normal'...we are retesting. NO clue about that one...calcium is normal. Methinks that radiation I had for 2 months for breast cancer is a culprit, and that it finally died down. (My parathyroid tumor was located in the upper CHEST...exactly where I was radiated due to lymph involvement under the right arm also)....here's hoping the best for all of you. ~juli
Phil: I was told that with all the nerves surrounding the area where the parathyroids are, that it WAS a possibility that a nerve could be nicked around the voicebox. I'm sorry you weren't told about this possibility.
I'm sure it must be rare. Is there some sort of therapy you could undergo for voice training maybe? (Just a thought).
I've recovered from the parathyroidectomy in 2002 fine (no more joint pains), but still have the urticaria I also developed after surgery. (rash/redness all over body)...for 2 years now I've had an EXtremely high level of PTH (343-787), last test showed it's 'normal'...we are retesting. NO clue about that one...calcium is normal. Methinks that radiation I had for 2 months for breast cancer is a culprit, and that it finally died down. (My parathyroid tumor was located in the upper CHEST...exactly where I was radiated due to lymph involvement under the right arm also)....here's hoping the best for all of you. ~juli
I had my para-thyroid removed last Seotember and lost a great deal of my voice. I now have a completely different voice that's very hard to understand, very garvely and rough. Has anyone else experienced this? I wasn't forewarned and my doctor says not to expect it to return. My whole life has changed because of it. I'm in sales and it's ruined me. Phil
Hope you've had your surgery. I put it off for 6 months out of fear and I had it last week. Not one problem experienced. Not even after surgery pain.
I had a parathyroid tumor/grape-sized and gland removed in 2002. I DID NOT FEEL better at all afterwards, in fact, had extreme joint pains for MONTHS afterwards, a calcium level of 10 is considered high! My PTH level right now is 878~!!!! Calcium is NORMAL...how did your daughter do? Hope you saw a different endocrinologist/Surgeon that specializes in parathyroids. Her tumor must be removed surgically! A Sestamibi Scan MAY find the tumor, it may not (mine was NOT found in 2002, but it was grape-sized and needed to be removed--high calcium levels at the time, over 10 but less than 11). GOOD LUCK...parathyroid surgery can be very tricky. With having so-called parathyroid symptoms before the surgery (head pain, sleeplessness), none of it was helped by the surgery at all, instead increased joint pain (dx: pseudogout) from the calcium flooding BACK into the bones instead of the blood.
NOW I had breast cancer in 2006, and an extremely high PTH level 878 as of 11/08, with normal calcium, so ALL are stumped, and I'm also trying to find answers here?
GOOD LUCK....juli
NOW I had breast cancer in 2006, and an extremely high PTH level 878 as of 11/08, with normal calcium, so ALL are stumped, and I'm also trying to find answers here?
GOOD LUCK....juli
my daughter has a tumer on her parathyroid gland. we had an altrasound done in late aug. The reason for the scan was her throid was out of control,alot of hair loss,head ache,her legs hurt all the time. she is 19 and the specalist can not see us for six weeks maybe early.Her cal. is 10 the Dr. said that was ok I am just scard for her.
thanks
Jean
thanks
Jean
Have any of you heard of hyperparathyroid without high calcium and PTH levels? I have many, many of the symptoms but the tests for the afore mentioned are normal.
I've been trying to find out what my horrible problem is that keeps me in heavy fatigue. I've been to a ton of all kinds of doctors and everything is coming out ok.
I saw it mentioned somewhere else, a person had normal levels but had parathyroid disease, anyway. When hers was taken out she felt soooo much better. I've been to the endocrinologist (sp?) but he says my levels are good so I don't have it.
I don't know what to think anymore.
I've been trying to find out what my horrible problem is that keeps me in heavy fatigue. I've been to a ton of all kinds of doctors and everything is coming out ok.
I saw it mentioned somewhere else, a person had normal levels but had parathyroid disease, anyway. When hers was taken out she felt soooo much better. I've been to the endocrinologist (sp?) but he says my levels are good so I don't have it.
I don't know what to think anymore.
Just curious what your symptoms where? I have been having a cracking snesation in my left sinus area and tingling tongue and lips and sometimes my teeth even hurt. The Ent I saw thinks it could be parathryroid. Anybody else experience these symptoms?
Welcome. So sorry you need to go through this but hopefully it will go straight-foreward for you.
Finding a skilled dr is key in this situation. Among the obvious of bringing about a successful outcome, a good one can help allay nervousness..
Feel free, if you'd like, to create your own thread and ask questions via the 'Post a Question' key. Since this is not a usual ailment, the more threads about it the merrier (IMO).
We will be here to support you.
Finding a skilled dr is key in this situation. Among the obvious of bringing about a successful outcome, a good one can help allay nervousness..
Feel free, if you'd like, to create your own thread and ask questions via the 'Post a Question' key. Since this is not a usual ailment, the more threads about it the merrier (IMO).
We will be here to support you.
Hello,
I have read through your postings and see that all of you have experience in the walk I am just now beginning. I am scared and need to find a good doctor with loads of experience with parathyroid gland issues.
It looks like CAT 86 just had surgery? How are you?
Any help and suggestions are greatly appreciated.
Nervous and scared in Phoenix
I have read through your postings and see that all of you have experience in the walk I am just now beginning. I am scared and need to find a good doctor with loads of experience with parathyroid gland issues.
It looks like CAT 86 just had surgery? How are you?
Any help and suggestions are greatly appreciated.
Nervous and scared in Phoenix
Thanks for the warm thoughts...tests went ok yesterday. I had the sestamibi and an ultrasound which revealed the culprit, the lower left parathryoid! Saw the surgeon this morning and felt very comfortable with him. He said he's done over 1000 of these surgeries and many are referred to him to fix what the first surgeon messed up. I'm scheduled for the 14th and so the countdown begins! He is using the minimally invasive surgery so I'll get to go home same day! Yeah! May I ask why your thyroid needed to be removed as well? Was it something they knew ahead of time or something they found during the procedure? As always, thanks! :) ~Cathy
Thinking of you today as you go through your appts. Hopefully all will go well (especially the sestamibi) and reveal exactly what needs to be seen before surgery. Let us know - when you feel up to it.
“Were you required to stay overnight or permitted to go home the same day?” - I had to stay overnight because they needed to take out my thyroid too (not a usual situation).
“Has anyone had the older/longer surgery?” - Yes, because the sestamibi scan was inconclusive things became exploratory, plus I had the thyroid issue. But the older surgery is not that much longer.
“Also, if you work, how much time did you need to take off?” - This is the one area I feel I should have done more of – take time off from work. I recommend taking as much time as you can, even if you feel better. I really believe the body needs more rest time after any surgery than we think it does. They say you can resume normal activity in a few days but I think a week to 10 days, maybe even longer, is more like it.
Don’t hesitate to ask questions. After all, it’s not a common ailment.
Take care.
“Were you required to stay overnight or permitted to go home the same day?” - I had to stay overnight because they needed to take out my thyroid too (not a usual situation).
“Has anyone had the older/longer surgery?” - Yes, because the sestamibi scan was inconclusive things became exploratory, plus I had the thyroid issue. But the older surgery is not that much longer.
“Also, if you work, how much time did you need to take off?” - This is the one area I feel I should have done more of – take time off from work. I recommend taking as much time as you can, even if you feel better. I really believe the body needs more rest time after any surgery than we think it does. They say you can resume normal activity in a few days but I think a week to 10 days, maybe even longer, is more like it.
Don’t hesitate to ask questions. After all, it’s not a common ailment.
Take care.
WOW! No wonder you feel ucky! I went home later that day...If you have to have the bigger surgery(explores all the glands), it's an overnighter, I believe...I had my surgical site stitched internally and then "superglued" and steri-stripped closed...I was a bit sore, and hoarse from the endotracheal tube (the breathing tube for anesthesia) for a few days, but only out for a few days...I think the anesthesia effected me (groggy, sluggish feeling) more than anything else...I took a week off, but I didn't really need it...You will probably be amazed at how much better you feel! By the way, my surgery only took about 1/2 hr...Take care!!! ((((((((((((((((((HUGZ))))))))))))) ~Melinda
Oh! And I forgot to mention how I cannot wait to feel better! I feel sooo run down, tired, depressed, irritable. I really hope it works! :-)
Thank you all for responding to my question, for the great advice and for the links to sites! You all are awesome!! I see my surgeon Tuesday morning (tomorrow) and have already had quite a few tests done; bone density scan, numerous blood draws, 24 hour urine, sestamibi scan (today) and an ultrasound (today) not to mention a few other gastroenterology tests. My calcium is high as well as my PTH level (276). I have decided to go with a larger hospital and not just our community one which means a longer drive but I think it will be worth it and the surgeon is pretty experienced from what I know but I will definitely be sure to ask, that's on the top of my list. Were you required to stay overnight or permitted to go home the same day? Has anyone had the older/longer surgery? Also, if you work, how much time did you need to take off? Sorry so many questions, just trying to be as educated as possible! ((HUGS)) ~Cat
P.S. Is your surgeon a specialist in this surgery? -Meaning, has he done loads of these? ASK! If he hasn't and mucks it up, you could have vocal cord nerve or thyroid damage for life...Not trying to scare you, but it is better to put it off, and find someone experienced, then to have someone using you for practice...Also, I was able to have the "mini" surgery done...(see parathyroid.com), but had the option of converting to the bigger exploratory surgery if needed...And you've had a good Sestamibi scan done, right? It's the only way presurgery to really show where the little buggers (your 4 parathyroid glands) are...If you don't have one done, the surgeon can be groping around and wind up not finding the "problem child"...The one I had with the tumor had tunneled itself under my collarbone..(it was chicken egg sized...) Well, hopefully I haven't freaked you out too much...Oh, by the way..I can barely see my scar now...I don't even need to cover it with make up...Take care... ~MM
I am 15 months post HPT tumor surgery, and I have few issues now...The following morning, i already felt different...-Like a weight had been lifted...No more head aches, bone aches, heartburn, peeing every 30 mins...(this was all the next day!) Long term -No more kidney stones...be sure to have your calcium (I use calcium citrate 2000 mg)/ day -1000 mg when I'm slacking..) in hand, you will want to be taking it immediately post surgery for a while...you may have some low calcium symptoms (mine were mostly buzzing in the face and hands) until things settle down...You are going to feel SO MUCH BETTER! I didn't realize how bad I felt until after...I thought it mostly due to aging, being a Mom and working, etc...Keep us posted! ((((((((((((((((((HUGZ))))))))))) ~MM
The sites I mentioned are at our Health Pages too - button is in upper right.
(Hope medicmommy contributes some of her usual good info ☺.)
(Hope medicmommy contributes some of her usual good info ☺.)
I, and others here, have had this surgery. My experience is that while it's a journey to get through the diagnosis, testing and surgery - it's well worth is. My experience was probably somewhat similar to what you've already read about.
Of course your surgeon will be your best guide on what you need to know for your own case. But here's some reputable sites with info, videos and patient testimonies that you might or might not have seen yet:
- parathyroid.com
- http://endocrine.niddk.nih.gov/pubs/hyper/hyper.htm
- http://www.endocrinesurgery.ucla.edu/ (if you click on 'watch the patient experience' you'll view one woman's journey)
When do you see the surgeon? I imagine he'll be ordering tests to be done before doing the surgery. Those might include an u/s, a dexa bone scan, a nuclaer sestamibi scan and lots of blood work.
(A plus you have is that it's primary...hurray...that means it's confined, which is a good thing.)
Keep us posted. We're here for you.
Of course your surgeon will be your best guide on what you need to know for your own case. But here's some reputable sites with info, videos and patient testimonies that you might or might not have seen yet:
- parathyroid.com
- http://endocrine.niddk.nih.gov/pubs/hyper/hyper.htm
- http://www.endocrinesurgery.ucla.edu/ (if you click on 'watch the patient experience' you'll view one woman's journey)
When do you see the surgeon? I imagine he'll be ordering tests to be done before doing the surgery. Those might include an u/s, a dexa bone scan, a nuclaer sestamibi scan and lots of blood work.
(A plus you have is that it's primary...hurray...that means it's confined, which is a good thing.)
Keep us posted. We're here for you.
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