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timberswife, Hello again! I had 3 diseased parathyroid glands. Surgery for this was done twice. The first time on the right side. Two were removed. During surgery blood samples are drawn from the parathyroid surgical site at the beginning and at intervals throughout the surgery. My Parathyroid Level at the beginning of surgery was very high....232...this dropped as each gland was removed.....a period of time then lapses and my Intraoperative Parathyroid Hormone Level dropped quite low i belive that it dropped to....25...signaling the Physician that the surgery on the right side had been effective and that all of the diseased parathyroid glands had been removed and further that exploring on the Left side would not be necessary......so he closed up and I went to the Recovery Room. I awoke very quickly and after one episode on the bed pan, I asked to go to the rest room from then on. I was very chatty and alert.
The nurses decided that I could probably go home and would not need to spend the night......that was at 11:30 AM.....we just had to wait for the Dr. to write the order. They initially did not arrange for a bed for me in the Observation Unit where post-operative patients usually go to spend the night......because it was obvious that I didn't need to stay the night. We waited hours for the Drs. to come in. They finally gave up and obtained a bed for me in the Observation Unit....costs in the Recovery Room are to high to sit around racking up $$$$ waiting for the Doc's to show up. Once in the Obs. Unit, I was brought a General Diet. I had been eating crackers, juice and 7-up in the Recovery Room. I gobbled up every bit of the food on my tray and asked for more food....which they brought to me....and I ate all that too! My throat felt bruised, but not sore. It was bruised from the Endotrachael Tube that was inserted after I was pre-medicated for surgery for surgery, so I have no memory of them putting the tube in, or of them taking it out. The discomfort was nothing major, maybe a 4 on a pain scale of 0--- to----10. Finally at 7:30 PM the Doc's came in and discharged me. Boy, was I glad! I had worked for 30 years as a unit clerk on the nursing stations in a major hospital. There were no doors on the rooms, just partial walls that came out about 5-6 feet between each bed so no one could see the other person next to them. The unit was in a big square with beds all the way around the outside perimeter and the nursing station in the middle. You could totally see the patients along the next wall of the square and hear what everyone....Dr's., Nurse's, Patient's, and Family Members were saying to each other. Ambulatory patients kept walking around and around the walking area over and over....like rat's in a maze. Call lights kept going off....everything was just hustle and bustle.....and since I had worked in areas like that, I understood everything that was being said to everyone within ear-shot, most of which should have been private.....and I felt as though I was at work again and I guess sort of "in a state of readiness". It just about wore me out.....I certainly could not rest! Gosh, it was so great when they let me go home. Once at home, I did some laundry, and stayed up fairly late chatting on the phone with a friend. I felt good the next day with only a mild discomfort from the bruising caused by the endo tube in my throat. There was really no pain or discomfort at the surgical site. I think that I took 2 Vicodan 3 times and then 1 Vicodan 3 times. Then nothing more was needed for pain after that. The next day, Saturday, went well also. The Surg. had been on Friday. I had napped off and on Sat. and Sunday. When I awoke from a nap on Sunday evening, I had to go to the bathroom....the usual frequent urination thing had not subsided yet. Afterwards I went to the sink to wash my hands, raised my head to look in the mirror, and holy cow.....the area in my neck where the surgery was (only a 1 inch incision or less), had swollen up while I was napping and now was the size of a tennis ball in my neck....not normal at all....but, still no discomfort. Of course, I called the Endocrine Surgeon on call at the U of M. They wanted me to come into the ER right away. I was not yet allowed to drive and even if I was, I had no idea at the time just what might happen next. My husband was not at home, he was visiting our son. I called his cell phone....No Answer....I called my son's home....No Answer....I called my son's cell phone and then my daughter-in-law's cell phone...no answer, anywhere! I kept doing this for 2 1/2 hours before I got any response. They had been outside and not one of them had their cell phones with them. You might imagine how angry I was at the time. Finally I got to the ER....the Doc's showed up in about 5 minutes......I didn't even have to go to an ER Room, they decided to admit me to a regular hospital bed....just to observe me overnight. They worried that it might be a hematoma, but it wasn't......it was just a Seroma....which is a collection of fluid at the operative site......it didn't hurt at all.....it just looked weird. I left the hospital at about 11:00 AM with instructions to keep massaging the area to help take the swelling down faster. Monday night, I started wetting the bed....BIGTIME. I had been told to take 600 mg. of Calcium 3 times everyday. I knew that wetting the bed and frequent large amounts of urine was a sign of an elevated Calcium Level which, medically speaking, is called Hypercalcemia. I also began to become VERY constipated...which is another sign of Hypercalcemia. So I called about that. They said to drop down to 500 Mg of Calcium 3 times a day. So, I did....but, it didn't help. Then I decided (on my own-bad girl that I am) to drop down to the 500 mg Calcium, but only 2 times per day. After a few days, it was apparent that this wasn't working to stop the frequent urination, bed-wetting and constipation, so I dropped it to Calcium 500 mg once a day....for a few more days.....Finally, I'd had it. Not being afraid to have a Dr. paged late at night, I paged the Endocrine Surgeon on Call. I was fed up with wetting the bed....so much that the maximum absorbtion Serenity Incontinence Pads wouldn't hold it all and I also had to use a big incontinent pad on my bed and change that as well as my PJ's a few times each night. After a bit of discussion with the Dr. he told me to titrate the calcium to the symptoms.....which meant to only take Calcium if I began to have rather loose stools or absence or infrequency of urination. YEAH! Over the next 10 days, I took 2 more Calcium Tablets, then I was done! This was not a good sign, it indicated that my Calcium Level was running quite high...I continued to be incontinent both day and night as well as somewhat constipated. The High Calcium Level was an indication that I had more diseased parathyroid gland that were not removed.......My fear was that it may be a parathyroid gland either with-in my Thyroid Gland.....or in an odd and obscure place in my neck...or worse still, I my Chest Cavity (Mediastinum)...so I was quite worried. Since I'd complained about the problem, I thought that it would be investigated promptly with Lab Tests, it wasn't....for whatever reason they had.....I'm sure that I don't know what the hold-up was and no one ever shared the reason for the delay with me. Two weeks post-op, I began to feel worse and worse. The headaches and a vague nausea returned, but, not as bad as it had been before the surgery....then I became extremely Suicidal, sometimes with strong urges up to 5 times in a day. I'd had this before the surgery, but not as bad. The depression and anxiety were awful. I became very mean and confrontational....not like me at all. I screamed at my dogs, I screamed at my husband, I screamed at anybody and everybody at the drop of a hat. And I cried, and I cried, and then I cried some more.....this was a return of a odd behavior that was happening before the surgery....so, now, it was back again. Of course, my body hurt all over......my muscles hurt, my bones hurt, my joints hurt......along with every thing else.......and I kept wondering "What in the H is the hold up" I still don't know.....I still would like an explanation. Oh, and my Blood Pressure kept going up and up and up......I wondered if I might have a stroke of a heart attack or heart failure......all of which are possible with Hyperparathyroidism. I was pretty scared, to say the least. I felt like everyone either didn't care, or didn't know, or just didn't comprehend what I was saying, or had decided that I was nuttier than a fruitcake, or that they maybe had the attitude that whatever happened to my body was totally their business--not mine! I still think that I deserve an explanation, and, I have every intention of getting one sooner or later. Back to the post-op follow-ups.........Finally in January, almost four months after my surgery, the Lab Test's that I had been wanting done since the second or third week after surgery...were finally drawn. The Calcium Level was elevated, the Parathyroid Hormone Level was elevated......I still had Hyperparathyroidism! I was scheduled for a 2 Hour Glucose Tolerance Test. I was then diagnosed with Type 2 Diabetes (Secondary to Hyperparathyroidism---Meaning that it was caused by the prolonged existance of Hyperparathyroidism). But they didn't tell me that....I do enough Medical Research to know exactly why I had developed Diabetes. I was BITTER to the MAX over the development of Diabetes. Not that my profound bitterness would get me any where, or change anything at all. All I could do is try to simmer down and pray that Diabetes would go away on it's own after the next Parathyroid Surgery. The next surgery was scheduled for the first half of March this year, I could barely wait. All went well. This time I did not wake up so quickly in the Recovery Room. (I have always woke up very quickly after any surgery....this was the very first time that I didn't) I think that the reason for not waking up quickly was because my Parathyroid Hormone Level and my Calcium Level had finally significantly dropped down. Although, it did not drop enough for me to need any Calcium. My Calcium Level remained somewhat High! As with the previous Parathyroidectomy, my throat felt bruised from the Endo Tube, there really was no pain, just a little discomfort from the throat bruising, and, this time, no swelling in my neck! The incisions healed quickly both times and at almost 3 months post-op, they are barely noticable. The Suicidal thoughts and plans never happened after I woke up from the second surgery. My Blood Sugar Levels are dropping. Headaches almost gone and nausea is gone. Bone pain, muscle pain and joint pain have decreased only a tiny bit....but time may remedy that even more...I hope! I am not as tired as I was, but I am still more tired than normal people. I have slightly more energy....anything is an improvement. My depression and anxiety has not gone, but, it is now manageable with a considerably lower dose than I was taking. Before surgery, the antidepressants were absolutely not effective at all. Overall, I'm doing so much better and I feel that there is still more improvement to come. My eye exam revealed Cataracts just before surgery....they have not improved and probably will not. My memory and concentration are improving but sitll not up to par. I felt quite stupid for a very long time, but there is some improvement now and I so hope that there will be continued improvement.

Right after I was diagnosed with both Primary and Secondary Hyperparathyroidism (still requiring Vitamin D in rather large quantities), I requested that my Mother be tested, she was 80 at the time. She also has it and recently worsened and will need surgery which I am working on right now for her, I'm very worried about her, she is 81 now and the dearest sweetest mom that one could ever ask for.

I hope that I have helped someone in some way. If you have any questions, please post and mention my screen name and I will try to answer. I plan on monitoring this site on a regular basis.

timberswife, what state do you live in?......Good luck to you. I have a friend who is allergic to red dye in pills....Maybe you are too. Do you have Fibromyalgia? I have it and it is common for people with this to have a laundry list of things that they are either allergic to or sensitive to. Check on the Fibromyalgia web sites of the list of symptoms. Also, do you prefer surgery with Local Anesthetic instead of General Anesthetic? I am a BIG CHICKEN and would never consider a local anesthetic....it scares the H out of me to even see the Operating Room. But, I'm lucky, I'm allergic to Local Anesthetic.....so I don't ever have to worry about anyone trying to force me to have it instead of General Anesthesia.

Take care and keep-on-learning!

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Thank you for sharing your personal experience with us.
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was2tired out of curiosity do you have any family history of parathyroid issues or is this relatively new to your family? I ask only because it's something I'm curious about since I have a friend whose parents both have parathyroid problems and I wonder about her. PLease let me know!
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I had the parathyroidectomy on September 3th. I have been reading all this posts and feel very concern about what I have read. I am suffering from a PAINFULL anxiety. My anxiety starts when I wake up in the morning. My heart runs very fast and I get almost panic attacks. This has been going this bad, since surgery. I was anxious befor but not this bad.I feel horrible, had to quit my job and desperate because I can not perform the same way I used to. My family is very concern also and my poor husband does not know waht to do. I will love to know if someone is feeling this way also. I get the worst in the morning and it gets a little better at night. But I am afraid of going to sleep because of the anxiety in the morning. PLEASE let me know what you think about this. Can it really be because of the surgery or, is just that my anxiety got worst after surgery. I am spanish, excuse my English. PLEASE give me your opinion. My Email address is . I have contacted the doctors in Florida and all they say is that I will be fine. It has been 7 weeks already and I feel worst every day.

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Venecia - I'm sorry that you are having so many problems. I did not have those problems after my surgery so I can't give you personal advice. Did you have surgery with Dr Norman in Florida? I have heard from numerous patients that he does not offer much help following surgery. If you had surgery someplace else you should be able to get answers from your surgeon.

Do you have an endocrinologist? If you do, then that would be the doctor to contact with post surgery problems. If you don't have an endocrinologist then I would strongly suggest that you contact one for post surgery help. You shouldn't be going through this alone. Of course it is scary for you and your family. You need a professional to help you. I do hope you feel better soon. -mass-
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Well your post helped me know I'm not nuts. I had parathyroid surgery (one gland) in Oct. Started feeling great around mid-Nov. And went down hill in Dec. All symptoms reappearing as if I never had surgery. I see a new Dr. this Friday. I will not go back to my previous family Dr. who had told me for almost a year that my high calcium levels were not causing all the other numerous health issues I had! I had to go to Ann Arbor to get that confirmed and had the operation within 1 week at that facility. I've not called them back with the news of what's happening now. After reading your post, I will be contacting them and hopefully my new Dr. will know how serious this condition could be! Thank-You
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Hello 2 tired,

     Just wanted to say that I went to U of M also.  I think I went into the post op multi room area too.  To shorten the story I was awake from 11 am all the way through until I got home the next day and went to bed at 7 pm.  In the multi b room, a person came in on midnights and was banging doors and cans and that was it.  Of course I think the higher calcium was the root cause but the noise didn't help at all.

      Well I am thalnkful for the surgery but my muscles are still sore 3 months post op and I have major challenges sleeping.  I have started taking sour cherry juice which believe it or not I think does help but I also take 1/2 an ambien.

     My calcium in Jan was 9.9 and the pth was 58.  The pth had dropped during surgery.

   I still think I have another one in there.  In fact I have a lump over the carotid and 3 Drs I had seen had said carotid bulb.   I didn't go into it with the Dr at U of M because by the time I got in there I was too sick.  I felt I coudn't tell a professional how to do their jobs. 

      I just wonder how big this lump has to get before someone questions it. (I) My bones have osteoporosis.  Well write back if you see this.  

 

Nancy Trenton, Mi

 

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Hello, I had one glad removed and haven't really felt any better since my surgery. I had my surgery a month and a half ago and still have a lump behind my incision also I am having edema, bone and muscle pain! Not to mention tht my blood pressure is high. I went back to my family doctor a month ago and my blood work came back normal at tht time. I still continue to have these symptoms along with fatigue. Some nausea at times and occasionally have some tingling on the left side of my face...still have problems getting to sleep and moodiness. I haven't returned to see my surgeon but my family doctor says I need to see him ASAP. Plz anyone if u can help give me clarification! I know something isn't rt but don't know if I ever will be normal again. This is a awful experience and am really concerned tht I probably need another surgery. I don't not feel tht all the bad glands were removed! Any one had this problem?
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I also went to Ann Arbor,MI for my parathyroid surgery...got my surgery right away. I have a pretty good sized seroma, tho, about the size of a golf ball. It's only been 9 days since my surgery, and go on the 13th of this month for my post-op visit. I am hoping my calcium and hormone levels are good so I can stop taking the calcium pills. Has anyone else had problems with seromas?
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Hi from Ireland. I had a parathyroidectomy on right side in March 2014 and still have tingling. I had it all over for weeks and now I have it in my cheeks and feet. I have dizzy spells and have had weight gain...anyone else have these symtoms?
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I had 1 of the 4 glands removed beginning of July. Its been about6 weeks, and I have had no real issues.  Honestly, this fixed alot of the things that I didnt know were wrong with me.  Friends and family actually notice that I smile more, Guess the fatigue and irritibility took away my smile? I can laught now, but leaves me to wonder, how long have I had the hyper parathyroid?  I only found out about it becuase I had kidney stones, and at 35, the urologist said, you too young to have kidney stones. Then tested for calcium and Parathyroid, and phosphorus levels. All indicated that Hyperparathyroid was the issue.  I did wait a while for the surgery, but we have to do that in Canada :-) Was about 1 year. I am sure I could of got in quicker if my symptoms were worse.  I did have the tinglily feeling in my feet and arms at times, if I had them bent in afunny position where it would reduce the blood flow.  As many of you know from having the surgery, they probably tested your calcium levels with a blood test several times after your surgery, and PTH levels, as well, as with the inflatable cuff to stoip the blood flow for 3 minutes.  If your muslces start to cramp up in that arm, or tingleing, then you have low calcium.  I didnt right after the surgery, everything was fine, even the poking the face test :-)  But about 1 week after the surgery, for about 3 weeks, I got that tingling pretty quickly if my arm or leg was bent in a funny position.  This is gone now.  THe fatigue is gone, I just have to say WOW, I can climb hills again, and not evne loose my breath, I thought this would come over time, but this was the first thing I noticed. I can wake up now, literally like a light bulb, Click, up and gone, and before I took forever to get out of bed, like 1 hour hitting snooze, and this was on work days. On weekends I sometimes hit snooze so many times it was about 5 hours later.  Now, even after 4 hours sleep ( I have a busy life) I can get up, yes a bit tired, but nothing like before.  Another thing I noticed, with my vision, at night when looking at bright signs, like a green arrow, I would see two images of it, offset vertically. My Day vision is 13/20, which is better than 20/20.  So now after the surgery, that offset double image is still there, but the offset is much less.  THe wierd part is, everything else is in focus. Hard to explain.

I am 37.  I had kidney stones at age 35, and then 1 year later literally 2 days to the day of the previose year, then Ironically 1 week before my surgery.  The first one required the snake up the snake removal process, the other two times I passed them myself.  Word of advice for kidney stones... And I have proven this theory becuase when I felt the pain in the abdomen.. I knew.. another stone.  I tried drinking lots of water... doesnt work, I tried leamon juice, pure and with lots of water, this actually takes the pain away, and possibly makes the stone smaller.  BUT EACH TIME the stone started to move and came out within 2 - 3 days All I had was a good night out.  at leat 5 - 6 beers, and a greasy burger.  Now, the doctors say, no thats not what caused it. I said well, DOctor say water, but what they really should tell you is DISTILLED water, since tap water, or even that from bottles has minerals, minerals attach to other molecules.  Beer?  Doesnt that have distilled water in it? Might be the hops, not sure, but im seriose when I say this, of the 3 times that I had to pass kidney stones, this is what made them move and you know its moved, you can feel the pain change, but for me it was more of an annoying discomfort rather then the pain most people describe.  It feels so much better when you know its in your bladder, you feel a bit of a poke when you move around.  BUT dont pee just yet, get lots ready, you will need it.  When you bladder is full, and you cant stand it any more, go to the bathroom.  THis part is embarassing, but I will tell you.... you have to lean forward on a 30-45 deg angle, otherwise the stone will not come out.  This puts the urethra opening at the bottom.  Gravity and fluid movement will take the stone out. ( I hate to admit it, but I used the bathtub :-) )  If you have a " Cold water shrink pee pee " condition, literally, use warm water, warm it up, and this helps since it opens up your urethra more.  Rub it if you have to :-)  THis is no joke, I know its akward to talk about, but hey, after the first ones got stuck in my urethra and I had to deal with that pain. I thought about all of this, while drinking, and filling the bladder to push it out.  Remeber, more the merry.  btw, it sucks when you have a sharp mini asteriod stuck in your urethra, so drink up!

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Did you gain weight before the surgery and were you able to take it off after?
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Yes, I had my surgery one month ago and am dealing with the exact same symptoms you describe. I can handle the tingling, but the dizziness is driving me mad. How are you now? Did your symptoms resolve for you? I sure hope there is an end to this soon. Thanks!!
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hi.. yes I do... ive gotten worse since my parathyroid and thyroid removed 4 months ago.. the surg and endo. wont admit that theres another bad para in there.. so I found new docs... I wish I could go to dr norman. but I do not have the funds.. its been a nightmare that has been going on for years .. and I had thought this surg would make me better.. all my levels are bad bc of PARA... high calcium again same old things... im half insane and need answers asap.. the old docs had me believing and running around getting tests that there is cancer somewhere else in my body ..instead of checking into their work.. IM so angry... Heads are gonna roll soon.. im not putting up with this .. this isn't liviing
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