parathyroid surgery

[softlights]

Has anyone had minimally invasive parathyroid surgery?   Seeking feedback re personal experiences.. Also, how to find the best MD?  I have read parathyroid.com, but do not live in Tampa. Has anyone used Dr Norman??,,, anyone recommend a good surgeon in northeast? Also, how was the recuperation,etc. New here, and appreciate any advice. Thanks!

[softlights]

Hi Lori,, I posted a reply to your request for help today, under Parathyroid Surgery, on the general board.. I also suggested you ask Dr Lupo for help.. But I want to summarize by saying that before you rule anything in or out, consider contacting Dr Norman, at his email address in Tampa.(it is listed on his Parathyroid.com site).  He can review your labs, and will usually reply to a brief, specific question re' your situation.. Then, consider carefully re letting anyone do surgery on you... The scan sometimes does not find the offending gland.. and this diagnosis is made via labs.. Dr Norman says he does a scan the day of surgery.. so don't give up re' ruling this out first.. You may or may not have a Parathyroid problem,,, but it's worth looking into further,,,, before agreeing to ? exploratory surgery.   SOFTY.. ps.. I wish you all the best.  Keep us posted in both forums, ok?  

[Thypatient]

Congratulations on successfully getting through this surgery!

Take good care.

[Lori707]

Hi all. I'm back. Had a CT with contrast and a nuclear Sestamibi scan. Showed no adema. Still feel sick as a dog and getting worse. But now my enzymes are High showing that my bones are affected. My nails have ridges(vertical). Tomorrow I'm getting a nuclear total body bone scan. Docs are saying that I'm losing bone density every day but since they can't find an adema on the scans I took, they would have to go in for an exploratory. That's not a mini surgery! They all said they don't feel I should have this surgery. I've heard about that sometimes they have to repeat the surgery because they couldn't find anything the first time. What am I supposed to do now?  Is there another test I can take that may pick an image up?  What's weird, is that my calcium serum and PTH is elevated but my 24hr. urine is low. Isn't it supposed to be high? Also, my 24hr. phosphorus is LOW!  ??  

Somebody please help me with some clues as to what's going on with me. The docs see me for 10-15 min. then tell me to come back in 6 weeks. This is just dragging on and on for so long! I feel helpless and scared.

[softlights]

thanks to all for support

had the surgery... all is well... no complications... worst part was the pre op jitters.
If anyone needs any more info, drop me a note.. I did well, day op procedure.. wonderful surgeon and post op care. RELIEVED, and free to move forward.

Lots of luck to all facing this journey.

[softlights]

THANKS,Melinda for such an in depth sharing of your experience,, I truly appreciate all your advice, and am so happy the surgery was successful for you!  I am seeing md's and need to find one that's "just right". I appreciate your taking the time to tell me your story, and experience with everything,   softy

[softlights]

All the above is excellent advise (What brilliant group!..)  But I also wonder if you need an new MD.?? Parathyroid problems are rarely cancer, You have been sent into a tailspin for no reason.. Have you read parathyroid.com?  Please do more research, and  perhaps see a doctor (a surgeon perhaps?)  who can review your labs, and order some of the more definitive scans. You want someone who is very experienced in this field....sorry but your md sounds kind of ill informed.. Keep us posted.

[medicmommy]

Just so you know..these tumors are rarely cancerous...they can grow to large sizes sometimes, but that's because, like a lucky mosquito, they've found a good blood supply...I don't know your doctor, but this is a pretty uncommon disease, and most Drs aren't very knowledgeable about it (I felt like they thought I was a really cool lab rat when I was diagnosed...)...the other disease that causes HPT, is called MENS which you'd have a LOT of other problems with other endocrine glands as well...
A Sestamibi scan is a must, not only for diagnosing there is only one tumor (rare, but not unheard of), but for finding the offending part. If it ends up being under your breastbone, it may not be found without the scan...And the surgeon will grope around looking for a rice-sized gland in your neck that isn't there...Hang in there...I'm sure your Dr is going off the blood lab results knowing the high PTH and high ionized calcium together, are usually the mark of a parathyroid tumor...I hope I haven't freaked you out even more...((((((((((((((((((((((((HUGZ)))))))))))))              ~Melinda

[medicmommy]

GET A SESTAMIBI SCAN! -And by someone who does a gazillion of them! This is the ONLY sure way to pinpoint where the tumor is! The parathyroids vary in their location...Sometimes all four are in the neck, sometimes the two bottom ones are behind your collarbones or further down in your chest. Ultrasounds are good for generalities, but they miss a lot. For example, mine was "inconclusive" and it was chicken egg-sized, and located in the groove between my trachea (wind pipe) and neck muscle...And it had tunneled under my collarbone...And, once again, tests are only as good as the people doing them and the people reading them...          ~Melinda

[Thypatient]

Only speaking from my own experiences, an u/s didn't show my tumor.  Neither did the scan.  It was diagnosed solely on dangerously high levels of calcium.

Can I ask?  On what basis are the drs speculating that your tumor might be malignant?

Needless to say, it's scary, but I and the others here will be with you.

[Lori707]

My endo guy said I have the parathyroid tumor (without giving me any tests to show it). My calcium serum has been high for several years, bad ostiopenia. My 24hr. urine calcium is very low though and my urine/blood D is good. I just took an ultrasound and they didn't find a parathyroid tumor. Wondering if it could have missed it. Now the docs are saying that I might have a malignant tumor that makes the parathyroid hormones go crazy and also the fact that I have elevated calcium levels is also an indicator. I'm so scared.
Any comments? Does anyone know that an ultrasound can maybe not catch the tumor?

[medicmommy]

Hello and ((((((((((((((((((((HUGZ))))))))))))))))!
I am 1+ year post HPT adenoma removal with the mini surgery. I could go into gory details about how it took 4 years and changing Drs to be diagnosed, and the misery that entailed (7 kidney stones in 2 years amongst multiple other things)....But I'm sure you're familiar with some of this by now...
I'm from the Pacific NW, and had my surgery done by an excellent surgeon, Dr John Ryan, at Virginia Mason Hospital in Seattle, WA...The Sestamibi scan was painless, and pretty fascinating...it revealed only one tumor that showed up like a light bulb clear across the room!
The morning after the surgery (I didn't have to stay the night, and the surgery was only 30 min long), I felt better already...The headaches, heartburn, gut and muscle pain were GONE! I could remember things, and the bone pain was less...I had this cute little bandage on my throat (for some weird reason, it reminded me of "Curious George Gets an operation"-must have been the meds...LOL)
Now, a year later, you have to look very close to see the scar...I still take 2 grams of calcium citrate every day (I'm 43, and have no time to lose replenishing my calcium stores that the HPT made my bones give up) but my PTH  and calcium levels in my blood remain normal...And I feel really well...It is really important to find a surgeon who is experienced in this surgery, because if they aren't, they can do permanent damage to you...Good luck, and don't wait too long...                     ~Melinda

[softlights]

Hi trish,

I live in Northeast, and yes, there are tons of md's  but not sure of how many Experts in this field. Have read parathyroid.com.. however don't want to travel out of state in case any complications arise,, so am looking locally. However, I think I would go to Florida, if I was less anxious about something unforseen happening.  Thanks,,  Anyone here have feedback re their surgeons?  

[Trish915]

Most teaching hospitals in most large cities have doctors that are skilled at minimally invasive and open surgery if you are not a candidate for minimully invasive.  Where do you live?

Trish915

[Thypatient]

Thanks for touching base.  Wow, it sounds like you've been through a lot already.

I had both, u/s and the scan, and neither told the dr much before surgery regarding my parathyroids (u/s did relieve a thyroid problem though).  I think the scan is helpful in most cases though.

As for a surgeon, again, I'd start by seeing who your current drs recommend.

I can certainly relate to: "Out of the blue, I was suddenly being worked up for hyperparathyroidism."  I kept thinking, where in the...did all this come from?  That thought came after, "What?"  At one point a nurse pulled out a huge illustrated anatomy tome to show me what they were talking about - I had no clue.

Please keep giving updates.

[softlights]

Thanks for the welcome, and the advise.. Yes, I have definitely been diagnosed via labs, and do need surgery.  I have classic hypercalcemia, Ph high, f, vitamine D low,. and probrably  now have osteoperosis ( sorry, don't have exact numbers.)  I did the 24 hr urine, the bone density test and had an ultrasound.9recently of thyroid and parathyroid).. still have to do the parathyroid sebati scan.  I have been looking into minimally invasive surgery--- have read parathyroid.com ( Dr Norman's website).. BUT  cannot go to Tampa..  I have heard mixed things about the sebati scan, vs ultrasound and cat scan...anyone have any of  these tests?   I am hoping to complete my search for the right surgeon shortly......it's a big decision. !  Anyone out there who has had it done. .......please contribute any and all details.  Thanks!!  ps.. I discovered I had this only because of my primary Md's close follow up on my thyroid levels. Out of the blue, I was suddenly being worked up for hyperparathyroidism,, and unfortunately, all tests confirmed this is what I have.   Glad to be with supportive people here,,it helps.  Wishinig everyone  the best of health and happiness.  Keep in touch,

[peggy64]

Soft, How were you diagnosed, and what was your symptoms? Check out parathyroid.com website. It is by drs in fl that only treat parathyroid.

Peggy

[Lori707]

I was just diagnosed with parathyroid and am currently sick as a dog. I know I must get the best surgeon! I'll admit..I'm scared. Been reading things that aren't great. I'm also trying to do my homework.
I live in the Northeast. There is a surgeon in NJ that does parathyroid but I have to check him out. In which state do you live?

[Thypatient]

Welcome.

This might be a silly question but…have you been diagnosed and had an endo make a recommendation about surgery yet?

The minimal surgery is one approach, but it does depend on your situation.

You can get a good idea of what that surgery is like by clicking the Health Pages on the upper right, then scrolling down to ‘Parathyroid.’  Click on that to go to UCLA’s website.  They have info and videos that are helpful.  Also, there's a link to a partial list of facilities all over the country who do this surgery.

There are several good facilities in the northeast with surgeons who can perform this kind of surgery, so you shouldn’t have to travel.  I’d say your endo should know which one would be best for where you live.

I had the surgery and though it’s a road to get through the diagnosis, testing and surgery; it’s very much better than living with a bad parathyroid gland (you can click on my name to read my brief history).

Best wishes and thank you for joining.