Comments on: How NOT to go to the ER after parathyroid surgery http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/ A reflection of all that is me as a Woman, a Wife, A Lover, a Mom, a friend, a daughter. I will be sharing insights & nonsense, wisdom & whimsy, trials & triumphs of a semi-menopausal, empty nester mom, home chef, work at home entrepreneur, newlywed, blogger, artsey, techie, cat lover, photo freak, wine taster, lover of God. Tue, 03 Jan 2012 02:24:24 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Tess http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-63467 Tess Tue, 03 Jan 2012 02:24:24 +0000 http://www.thymeinmygarden.com/?p=166#comment-63467 Andrew and others...I went to the Norman Parathyroid Center. I had one adenoma removed on 11/14/2011 and one parathyroid 'abnormality' removed - so a total of two parathyroid glands removed. The next evening, I had the weirdest feeling...I buzzed all over, my teeth, my body....everything. I called my surgeon and he said take more calcium..take 5,10, 100, 1000, 1,000.000. I am serious. I cried...but I took more calcium. My anxiety level was out of the spectrum. I have had my calcium and PTH checked over the last 6 weeks. At the last check up it was PTH 16, and Serum CA 9. I am on 1200 mg elemental ca daily. Some days I tingle, some days I don't. Caffine bothers me now. My Women's One a Day bothers me - B12 overload, I am ASSUMING. I stopped the vitamin and the tingling got better. I stopped the caffine, and the tingling got better. BUT, I am sitting here tonight and tingling. My shoes bother me now - I tingle even when they are tied loosely. I am looking for feedback from others who may have had a similar experience and have overcome this. I have GREAT days and days that I tingle. I would love to hear what other peoples CA and PTH levels were days, weeks, months after surgery. I have often wondered if I made a life=altering mistake by having this surgery. I do NOT feel 10 years younger or better. Andrew and others…I went to the Norman Parathyroid Center. I had one adenoma removed on 11/14/2011 and one parathyroid ‘abnormality’ removed – so a total of two parathyroid glands removed. The next evening, I had the weirdest feeling…I buzzed all over, my teeth, my body….everything. I called my surgeon and he said take more calcium..take 5,10, 100, 1000, 1,000.000. I am serious. I cried…but I took more calcium. My anxiety level was out of the spectrum. I have had my calcium and PTH checked over the last 6 weeks. At the last check up it was PTH 16, and Serum CA 9. I am on 1200 mg elemental ca daily. Some days I tingle, some days I don’t. Caffine bothers me now. My Women’s One a Day bothers me – B12 overload, I am ASSUMING. I stopped the vitamin and the tingling got better. I stopped the caffine, and the tingling got better. BUT, I am sitting here tonight and tingling. My shoes bother me now – I tingle even when they are tied loosely. I am looking for feedback from others who may have had a similar experience and have overcome this. I have GREAT days and days that I tingle. I would love to hear what other peoples CA and PTH levels were days, weeks, months after surgery. I have often wondered if I made a life=altering mistake by having this surgery. I do NOT feel 10 years younger or better.

]]> By: Tess http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-63465 Tess Tue, 03 Jan 2012 02:10:59 +0000 http://www.thymeinmygarden.com/?p=166#comment-63465 Please contact me. I have some questions regarding your parathyroidectomy and how long your parasthesia lasted. mt_reuter@yahoo.com Please contact me. I have some questions regarding your parathyroidectomy and how long your parasthesia lasted. mt_reuter@yahoo.com

]]> By: susan smiler http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-63398 susan smiler Mon, 02 Jan 2012 18:15:44 +0000 http://www.thymeinmygarden.com/?p=166#comment-63398 go to tampa florida and the norman parathyroid center even if you have to beg borrow or steal the money to do it- your life is worth it! go to tampa florida and the norman parathyroid center even if you have to beg borrow or steal the money to do it- your life is worth it!

]]> By: Chrissy http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-59618 Chrissy Mon, 05 Dec 2011 13:26:56 +0000 http://www.thymeinmygarden.com/?p=166#comment-59618 This sounds exactly like what happened to me ... see the post on how NOT to go to the emergency room... Once your calcium levels are consistent hopefully you'll feel better. Does your doctor have you taking large doses of Vitamin D as well? I was on a mega dose prescription for several months post surgery and continue to take a large over the counter dose daily. This sounds exactly like what happened to me … see the post on how NOT to go to the emergency room… Once your calcium levels are consistent hopefully you’ll feel better. Does your doctor have you taking large doses of Vitamin D as well? I was on a mega dose prescription for several months post surgery and continue to take a large over the counter dose daily.

]]> By: Andrew http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-59586 Andrew Mon, 05 Dec 2011 07:50:47 +0000 http://www.thymeinmygarden.com/?p=166#comment-59586 I had the the surgery, felt fine when I came out as long as they were pumping calcium into my system. Then I went up to the normal ward and my calcium levels dropped. I woke up on the Saturday morning with a feeling of such dread that I had a massive need to end my life. I wanted to jump out of the hospital window. I have never felt such a feeling of dread and hoplessness. I phoned my wife and told her to get to me quickly as I was afraid and as I put down the phone my whole body went into spasms and I became paralysed. Not knowing what was going on I believed I was about to die and I started callling on the name of Jesus as I thought my lungs would surely stop working as well. I managed to call to the nurses who took my calls of help with little urgency, but after screaming they quickly got the doctor to come up to me. My wife then had arrived and sh held me in her arms and comforted me. I really belived I was about to die. She was in a state and the doctor then said to me that maybe I should eat something to whci I replied I could not move and needed urgent attention. They evetually injected 4 viles of calcium into me and all the way back to the ICU I prayed 'The Lord is my Shepard' and called on the name of Jesus to help me. It took about two hours before my body normalised and I was calm. I regretted having the op. it is now only three weeks post op and I still get feelings of dread and anxiety. Can any one help me with advice on how to get rid of this feeling. I keep taking calcium but it does not help. Think carefully before having the op. I am not saying that I won't get better, but I am praying for help to feel better. I sometimes feel that doctors don't always tell you exactly what you are getting into and once you have had the op they should monitor people closer. Perhaps they are just intersted in the money. I had the the surgery, felt fine when I came out as long as they were pumping calcium into my system. Then I went up to the normal ward and my calcium levels dropped. I woke up on the Saturday morning with a feeling of such dread that I had a massive need to end my life. I wanted to jump out of the hospital window. I have never felt such a feeling of dread and hoplessness.
I phoned my wife and told her to get to me quickly as I was afraid and as I put down the phone my whole body went into spasms and I became paralysed.
Not knowing what was going on I believed I was about to die and I started callling on the name of Jesus as I thought my lungs would surely stop working as well. I managed to call to the nurses who took my calls of help with little urgency, but after screaming they quickly got the doctor to come up to me. My wife then had arrived and sh held me in her arms and comforted me. I really belived I was about to die. She was in a state and the doctor then said to me that maybe I should eat something to whci I replied I could not move and needed urgent attention.
They evetually injected 4 viles of calcium into me and all the way back to the ICU I prayed ‘The Lord is my Shepard’ and called on the name of Jesus to help me.
It took about two hours before my body normalised and I was calm. I regretted having the op.
it is now only three weeks post op and I still get feelings of dread and anxiety. Can any one help me with advice on how to get rid of this feeling. I keep taking calcium but it does not help.
Think carefully before having the op.
I am not saying that I won’t get better, but I am praying for help to feel better.
I sometimes feel that doctors don’t always tell you exactly what you are getting into and once you have had the op they should monitor people closer. Perhaps they are just intersted in the money.

]]> By: Chrissy http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-48907 Chrissy Thu, 06 Oct 2011 10:13:37 +0000 http://www.thymeinmygarden.com/?p=166#comment-48907 That sounds just awful Virginia.. I'm so sorry you are going through all those complications. :( That sounds just awful Virginia.. I’m so sorry you are going through all those complications. :(

]]> By: Virginia http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-48681 Virginia Thu, 06 Oct 2011 06:29:25 +0000 http://www.thymeinmygarden.com/?p=166#comment-48681 Had Parathyroid surgery in June 2009. Woke up from surgery with an unbearable pain in the back of my head/neck and I couldn't breathe. To this day I have these symptoms that were NOT there before the surgery. And my pre-surgery symptoms are still there--cramping has not gone away and my stomache ailments are worse. My osteoperosis has actually reversed and bone density is now normal--the only positive that came out of this. I've found that avoiding calcium helps with the breathing difficulty. But the moment I eat a piece of cheese, milk, or ANY calcium, my throat feels big--and I can't catch my breath. Forget about TUMS--I would completeley stop breathing. Evidently, during surgery, the doctor (actually the student at this learning hospital) dropped the cut-off gland into the tissue and they had to dig it out. The first test (before they could find/retrieve it) was showing high XXX level (not sure--I think it's the parathyroid hormone they check before stitching you back up). According to the doctor, they were able to find the gland, remove it, and re-testing showed a normal parthyroid hormone level, giving the okay to stitch me back up. I suspect they dropped my head/neck while I was unconscious causing some sort of permanent damage to the back of my neck and that the parathyroid gland is floating around my throat tissue somewhere swelling up when I eat calcium. I know it sounds crazy, but I have no othe explanation! In the follow up, when I expressed concern about neck pain and trouble breathing, the surgeon shoved very forcably a scope down my throat to prove to me it was fine (how the heck do I know what it's supposed to look like). When I told my GP, she thought I was crazy. My newer doctor, an internist, said it's possible, but didn't order any tests...I'm sick and tired of being sick and tired. Had Parathyroid surgery in June 2009. Woke up from surgery with an unbearable pain in the back of my head/neck and I couldn’t breathe. To this day I have these symptoms that were NOT there before the surgery. And my pre-surgery symptoms are still there–cramping has not gone away and my stomache ailments are worse. My osteoperosis has actually reversed and bone density is now normal–the only positive that came out of this. I’ve found that avoiding calcium helps with the breathing difficulty. But the moment I eat a piece of cheese, milk, or ANY calcium, my throat feels big–and I can’t catch my breath. Forget about TUMS–I would completeley stop breathing. Evidently, during surgery, the doctor (actually the student at this learning hospital) dropped the cut-off gland into the tissue and they had to dig it out. The first test (before they could find/retrieve it) was showing high XXX level (not sure–I think it’s the parathyroid hormone they check before stitching you back up). According to the doctor, they were able to find the gland, remove it, and re-testing showed a normal parthyroid hormone level, giving the okay to stitch me back up. I suspect they dropped my head/neck while I was unconscious causing some sort of permanent damage to the back of my neck and that the parathyroid gland is floating around my throat tissue somewhere swelling up when I eat calcium. I know it sounds crazy, but I have no othe explanation! In the follow up, when I expressed concern about neck pain and trouble breathing, the surgeon shoved very forcably a scope down my throat to prove to me it was fine (how the heck do I know what it’s supposed to look like). When I told my GP, she thought I was crazy. My newer doctor, an internist, said it’s possible, but didn’t order any tests…I’m sick and tired of being sick and tired.

]]> By: Carol http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-33839 Carol Fri, 16 Sep 2011 14:14:04 +0000 http://www.thymeinmygarden.com/?p=166#comment-33839 @ Tom....I don't know if you have the answers to your questions yet or not but I just read your post and thought I would give you the info that I have. ...First of all I have read where it is not uncommon to have your calcium and pth fluctuate. I think it normally does this with parathyroid disease. I would keep having my calcium and pth checked together to see how the numbers come out. I only had one test which showed high calcium and pth at the same time and that's all it took to get a diagnosis. I had parathyroid surgery in Tampa in June of this year. They have a website...parathyroid.com that gives you all kinds of info about the disease and the surgery. You can even view a video of the surgery being done...if you want to do that :) There is a section to view on the site that says become a patient. It gives the TOTAL cost which includes the consultation fee as $11,250.00 for EVERYTHING... for those who do not have insurance. They take patients from all over the world. I went to Tampa because I feel they are the most experienced surgeons that I could find nearest to me. I had a very positive experience there and highly recommend them. But I know that there are other doctors also very capable..I just don't know where to tell you to find them. Just make sure that whoever does your surgery is very experienced and does the mini parathyroid surgery. But I do suggest that you go to that website and read it if you haven't already. Very interesting info to be found there. I hope this has been helpful to you. Prayers for you! Carol @ Tom….I don’t know if you have the answers to your questions yet or not but I just read your post and thought I would give you the info that I have. …First of all I have read where it is not uncommon to have your calcium and pth fluctuate. I think it normally does this with parathyroid disease. I would keep having my calcium and pth checked together to see how the numbers come out. I only had one test which showed high calcium and pth at the same time and that’s all it took to get a diagnosis.

I had parathyroid surgery in Tampa in June of this year. They have a website…parathyroid.com that gives you all kinds of info about the disease and the surgery. You can even view a video of the surgery being done…if you want to do that :) There is a section to view on the site that says become a patient. It gives the TOTAL cost which includes the consultation fee as $11,250.00 for EVERYTHING… for those who do not have insurance. They take patients from all over the world.

I went to Tampa because I feel they are the most experienced surgeons that I could find nearest to me. I had a very positive experience there and highly recommend them. But I know that there are other doctors also very capable..I just don’t know where to tell you to find them. Just make sure that whoever does your surgery is very experienced and does the mini parathyroid surgery. But I do suggest that you go to that website and read it if you haven’t already. Very interesting info to be found there. I hope this has been helpful to you.

Prayers for you!
Carol

]]> By: Jan Hamilton http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-32701 Jan Hamilton Tue, 13 Sep 2011 19:04:27 +0000 http://www.thymeinmygarden.com/?p=166#comment-32701 I recently had parathyroid surgery in Seattle with Dr. Kathleen STickney. She is an expert and you take high levels of calcium after the operation as well as vit D and you go on with your life just fine! I recently had parathyroid surgery in Seattle with Dr. Kathleen STickney. She is an expert and you take high levels of calcium after the operation as well as vit D and you go on with your life just fine!

]]> By: Chrissy http://www.thymeinmygarden.com/how-not-to-go-to-the-er-parathyroid/comment-page-1/#comment-24896 Chrissy Wed, 17 Aug 2011 17:06:09 +0000 http://www.thymeinmygarden.com/?p=166#comment-24896 My GP found the issue and then sent me to an Endochrionologists... but the first 4 times I went to the GP's I got various things usually.. Oh.. it's menopause, it's stress, etc.. My GP found the issue and then sent me to an Endochrionologists… but the first 4 times I went to the GP’s I got various things usually.. Oh.. it’s menopause, it’s stress, etc..

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