Hyperparathyroidism Support Group

Hyperparathyroidism is overactivity of the parathyroid glands resulting in excess production of parathyroid hormone (PTH). Increased PTH consequently leads to increased serum calcium (hypercalcemia) due to 1) increased bone resorption, allowing flow of calcium from bone to blood, 2) reduces renal clearance of calcium, and 3) increases intestinal calcium absorption.

0 Online
0 Online

Parathyroidectomy done on 9/11/2009

Hello,

I had surgery on 9/11/2009 and recovering this weekend.
It was scary but there was no choice in the matter. Feeling so bad and bone pain made my life unbearable.

My Surgeon does the MIRP and it went well. I have only a small amount of swelling and a very tiny piece of tape on my throat.

The most difficult part of my whole ordeal was finding Dr Biggerstaff.
You would not believe how may doctors still do the "big scary" surgery!

I will get my calcium level tested in a week to see where we are with that.

I feel so much better with no bone pain and looking forward to a wonderful life.

Take Care and have a wonderful day!

Anne FinCastle

Replies

deleted_user
deleted_user

Eek, just saw the surgeon who told me it's gonna be an open chest surgery for me. I asked about MIRP, but as they couldn't locate the position of the overactive gland, he said it wasn't an option.

I'm now super nerous about it. I'm only just 15 (the youngest case in my country recorded!) and I'm gonna have a surgeon digging around in my chest! Has anyone else had an open chest parathyroidectomy? I'd love to know how big the scars gonna be.

On the plus side, I'm looking forward to the decreased calcium levels. I keep breaking my arms and fingers, and have had constant migraines for the past two years, so it'll be good to be free of those!
deleted_user
deleted_user

Hello,

I was lucky to be able to have the MIRP and it so far looks like it worked. Have to visit my surgeon in 6 weeks but hope to be free after that.
I had no idea that I even had parathyroids before I got sick!
Scary to be sure but I decided to know everything and devoted many hrs on the Internet to read all that I could find. Dr. James Norman's site was the best out there - he made me feel so much more informed so I could decide my direction. You have to know all the facts so you can adjust to what is going to happen and make the right choice.
Did they show you the images? I had nuclear medicine scan and ultrasound that confirmed the location of my "bad" gland.
My calcium was 10.9 (I think it was higher) after the ultrasound but I did not have a repeat prior to the surgery.
Happy to report the Calcium is 9.6 and a little tingle feeling around my mouth. Bone pain and fatigue is gone:-) 3 days after my surgery it's like I walked from a fog into the bright sunshine.
I am here for you - please stay in touch. I really needed to have somebody understand what I was going through.
Take care of yourself and email when you feel up to it.

Margaret Anne FinCastle
deleted_user
deleted_user

Hi Margaret: Hope you are feeling well! My 20 yr old son was recently diagnosed with hypercalcemia, but the neck scan did not show any tumors. I a very concerned that the tumor is elsewhere in his body. Where did you have surgery, and do you recommend your surgeon? Thanks for any help. Take care, mish7
deleted_user
deleted_user

I am wondering where this Dr. Biggerstaff is. I am 23 and am looking for a surgeon who will do MIRP seeing that my sestamibi scan was negative.
deleted_user
deleted_user

Ashley,

Dr. Biggerstaff is located in Indianapolis Indiana.
The surgery changed my life and Dr. Biggerstaff is skilled and cares.
On my first visit he told me about Dr. James Norman's Website to learn more about the MIRP.
I had already visited that site and even viewed the surgery.
The nuclear medicine scan can be negative due experience of the provider. (Nothing mean but true) I had an ultrasound as well and it did show the tumor.
The MIRP surgery worked for me and I have a very tiny scar that gets smaller everyday. The surgery was done as an outpatient Friday and by Monday I felt so much better. Got my "Sparkle" back. LOL!
Don't let anybody talk you into the big scary surgery - this is so much better.
deleted_user
deleted_user

I am definitely not going to be talked into the big surgery. I have called to U of M, The Cleveland Clinic and OSU and I think I will call and speak to Dr. Biggerstaff's office now. I am not willing to let a doctor do a big surgery due to their inexperience.
deleted_user
deleted_user

Hello Ashley,

Glad to know you are willing to put in the work to find what you need.
I learned everything that I could about the parathyroid issue that I had.
The most difficult part of my whole experience was to find a Surgeon to perform the MIRP. Everybody wanted to do the surgery "ear to ear" and hunting for the bad gland.
Why would anybody want to do that? The MIRP is more direct and not as invasive. I did not want to take the risk of not being able to talk and maybe even bleeding. Check out Dr James Norman's website to learn more about MIRP.
Stay strong and don't settle!
Anne
deleted_user
deleted_user

I'm new to this group. I have Myasthenia Gravis along with hyperparathyroidism. My neurologist suggested Dr. Biggerstaff in Indpls. and I'm so excited to learn that he does MIRP. I also read all I could on Dr. Norman's website, and wanted to find someone in this area. I'll contact him soon as I'm released for surgery.
I have been treated for hyperparathyroidism with KPhos Neutral and Lasix for about 10 years, and my levels remained mildly elevated but stable with no symptoms. Endocronologist felt at my age that I didn't need surgery.(75 now)
I was diagnosed with MG during a respiratory crisis in March 09, At that time my previously stable( though elevated PTH and calcium) , and kidney functions went through the roof. I've been having renal panel labs every 2 weeks since discharge, with 2 different hospitalizations for calcium level of 13.3, and 12.7. Each time they got calcium level down with IV fluids and meds, but it elevates again in a couple of months. They say I can't do that indefinitely. So I really need the MIRP. The elevated calcium also can affect the MG, along with the kidney functions. Thank you for confirming your feelings about Dr. Biggerstaff.It really helps to share these stories.
deleted_user
deleted_user

Oh my word! I don't know why your doctor wouldn't suggest surgery sooner. Calcium levels of 13.3 and 12.7 are definitely not mildly elevated. Look at Dr. Norman's page and you'll see that levels above 12 are dangerous! In fact, mine have only been as high as 11.9. I'm so glad they're finally getting you into surgery but I really wonder if you might've been able to live better for the past 10 years if they had gotten you in sooner! I'm actually curious if you'll see some changes in yourself after the surgery that you weren't aware were related to the hyperparathyroidism.. you say you're not symptomatic but I wonder if there are things you're overlooking. Your kidney function could be due to hypercalcemia!

Either way, please keep me posted about how everything is going. I was scheduled to have surgery Dec. 16 but it was cancelled due to an abnormality on a blood test. It has since been rescheduled for Feb. 1 with Dr. Farrar at OSU. I wlll let you know how it goes for me!

-Ashley
deleted_user
deleted_user

Also wanted to add, do a lot of research about this disease. I see that your doctors had tried to deny you surgery and I also see that you tried Sensipar. Dr. Norman has a whole page on his site about why you shouldn't take Sensipar. I have had to learn a lot about my this disease on my own and have had to learn to advocate for myself. I actually went through 2 endocrinologists who would not give me proper diagnosis because of my age (I am 23, young for this disease but not unheard of.) One doctor told me my calcium was high because my Vitamin D was low and tried to start me on Vit D supplement. Luckily, I read on Dr. Normal's page that treating with Vit. D would only make my calcium levels higher, so I refused. The doctor then proceeded to badmouth me for refusing intervention and told me he felt most of my issues were psychological.
deleted_user
deleted_user

Ashley, thanks for your caring comments. I am a retired RN and I worked for an internist for a long time. All of this was before the MIRP, and the internist kept careful watch of all my lab values and kidney functions. At that time,rushing into surgery was not pushed. I did very well with calcium levels of 9-10 during that time. IT was only after my Myasthenia Crisis that my lab values skyrocketed. Then I was so weak and recoverying from that the neurologist wouldn't release me for surgery due to the anesthetic and the weakness in my neck and breathing. So the endocrinologist did the best he could to keep the calcium down while I recouperated. I had 2 hosp. to help reduce the Calcium when it got up to 12.7 and 13.3 this summer . I saw neuro yesterday and she has now released me for surgery, and I will be scheduling with Dr. Biggerstaff soon for MIRP. I have been symptomatic from both conditions, sometimes overlapping. I am 75 and just thought I was "getting old" . I am very grateful we now know so much more about both conditions than we did 10 years ago. We can all benefit from Dr. Norman's website. I'll keep in touch. and good luck to you.
deleted_user
deleted_user

Thanks for the update. I'm glad you've been OKed to get into surgery. I also thought that my fatigue and other symptoms were a result of something else for quite a while. When my fatigue began getting really bad, I was only 19 and could not get up and go to work unless I had like 12 hours of sleep. I really thought that I had something wrong psychologically and was too afraid to admit it so I ignored it for years until I noticed other things going on. Just to think, if I would've gone to the doctor for yearly physicals, I probably would've discovered this years ago! I will now preach the benefits of physicals to every young person I know, since most of us only go to the doctor when we're sick.

I hope everything goes well for you and you find relief during surgery. Keep me posted and hang in there.

-Ashley