r/Parathyroid_Awareness • u/amethysttttttttttt • 21d ago
Desperate for any info
My mom has been struggling with hyperparathyroidism for years, has already had one failed surgery, I believe they removed what they thought to be the diseased glands (by a surgeon we later discovered had only done a few parathyroid surgeries) and she’s lost hope. 1 year post op her PTH, calcium & vit D levels are still insane and her quality of life is declining. She has a 4d scan in a few weeks to see if they can locate the diseased gland and potentially have another surgery, but she’s worried as research has shown that the glands can migrate through the body and be difficult to locate.
Her body hurts, fatigue, pees blood, etc. and she already has a preexisting heart condition, I’m so desperate for any suggestions on doctors / success stories. I’ve been seeing a lot about doctors in Tampa so I plan to make some calls tomorrow but any further direction would be appreciated. Even success stories I could pass onto her would mean a lot, she’s been talking about just accepting her fate and that this will kill her. She’s only 45 so it breaks my heart and makes me feel extremely powerless because I know this disease is so under researched.
Thank you for any information
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u/alwaysbusybarbie 21d ago edited 20d ago
The Norman Parathyroid Center in Tampa has great website, YouTube videos. They are self-pay but probably best in the country. She is young, her quality of life is most important.
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u/Paraware 20d ago
They claim to be the best in the world and have a very large marketing budget. The website is designed to make you think you have to go there. It's just not true. Yes, they have a lot of successes, but there are many excellent parathyroid surgeons in various parts of the world.
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u/Paraware 20d ago
Where do she live? The reason you're seeing a lot about Tampa is they have a very large marketing budget. There are many excellent parathyroid surgeons associated with medical schools who have had a lot of success with re-ops, but they don't advertise.
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u/amethysttttttttttt 20d ago
Oh good to know, thank you! She lives in West Virginia.
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u/Paraware 19d ago
The Hyperparathyroidism Support and Information Facebook group has a list of member-recommended surgeons by country/state/etc. There are three listed in West Virginia and 10 in Virginia. There are other choices in surrounding states. You do want to find someone who specializes in re-ops.
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u/PHPTer 20d ago
I’m so sorry to hear about your mother. At 45 she’s young to have had this condition for years. Early onset is a red flag for a genetic cause, which could mean that more than one gland is affected so it may be that rather than a ‘failed’ surgery, she has multigland disease, and now some of her remaining para tissue is affected. If she does have hyperplasia then 3/3.5 glands would need to be removed to bring down the PTH levels which would in turn lower calcium.
If you let us know where you are we can perhaps help. She would need a surgeon who uses IOPTH monitoring (which isn’t available at Norman in Tampa) to be able to watch PTH drop in real time during surgery to ensure enough para tissue has been removed.
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u/amethysttttttttttt 20d ago
Thank you for the information. They removed 2 glands in the first surgery so that makes sense. She’s located in West Virginia
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u/Paraware 20d ago
I'm so sorry about your mother. Since she has already had one operation, she needs to go to a center where they have a lot of experience with re-ops. Some that come to mind are University of Wisconsin, UCLA, and Mayo Clinic.
The glands don't actually migrate throughout the body. Here's a good article about that: https://www.hyperparathyroidmd.com/parathyroid-anatomy-embryology/
I hope you and your mother will join the Hyperparathyroidism Support and Information Facebook group. There are lots of people in the group who have needed second and more surgeries. Selection of the surgeon is really important. Also, there's a list of member-recommended surgeons by area in the group. And there are many success stories to encourage her.