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Just wanted to check in and see how everyone is doing after surgey.

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I just had parathyroid surgery on 4/28/09 and I am thrilled with the results. The incision was not uncomfortable at all and I felt better before I even left the hospital. My symptoms had been extreme muscle aches, being stiff all over all the time and having no energy. I felt better immediately after waking from surgery than I have felt in probably 4 years. I have read some postings saying people felt better at first but then the stiffness returned. That is my fear. My doctor said I would probably not feel much different for 3 or 4 months but if I never feel any better than I do right now, which is 5 days after surgery, I will be happy. I had a minor sore throat for 2 days and that is all. I am taking calcium tablets and have had some feelings in hands and feet similar to them going to sleep but nothing bad and that is a better feeling that the terrible stiffness I have felt for the last probably 4 years. Prior to surgery, I had gotten to the point that I could barely get up from a chair and even trying to grocery shop made my legs ache so bad I could barely return to my car. Now, I have none of that and was able today to go on an outing for the first time in forever without having to constantly look for a place to sit down.
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Now that it has been a almost a month I hope your recovery is still going

well. Do you mind posting where you had surgery? What were your calcium levels and PTH before surgery. Thanks, txg
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Hi: I live in Columbus, Ohio and I just had a second surgery to remove my bad parathyroid gland in
March at the James Cancer Hospital here in Columbus by a great surgeon named Dr. William Farrar.

The first surgeon I had was a quack and didn't know what the hell he was doing! He removed two
perfectly normal glands because he didn't do the right tests before he did the surgery and had no
idea where the bad gland was located! He did the bad surgery in Oct, 2008.

Dr. Farrar found the bad gland which was uncommonly located in my chest and had not problem
removing it in approximately one hour and fifteen minutes.

I'm doing much better now, however I now only have one parathyroid gland and will have to take
calcium for the rest of my life. I also have IBS and the calcium I am taking is causing havoc on my
biles! I will see a new Gastroenterologist in 10 days and I hope he can help.

Bob
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Hi, I had the MIRP in Tampa with Dr. Norman's group on November2. Very expensive for no apparent reason, but I was spooked by the local surgeon when he said he would have to dig around looking for my tumor, so I figured the extra $1500 was worth it if I could avoid post-op irreversible hypocalcemia and a larger-than-necessary surgery. I didn't want my healthy parathyroids messed with at all. My MIRP in Tampa went smoothly--17 minutes. the adenoma was behind my esophagus and would have been challenging to find for an inexperienced surgeon. Overall I would recommend taking the plunge in Tampa--the extra money they demand from out-of-state people is outrageous, but they have cornered the market on a safe, reliable, effective procedure. Tiny incision.

My only complaint is that the testimonials on the website gave me the impression that I would feel like doing handsprings within 48 hours of the procedure. I was shocked at how sore my neck was--for a good 2 weeks. No dancing for me! Also, I continue to have tingling in my feet, fingers and face-- and dizziness when I get up quickly. I'm definitely improving, and most of my leg aches are gone--but it wasn't the "miracle" instantaneous cure I had been led to expect. I am troubled by a return of muscle (calf) cramping and weird jumpiness in my legs in the evening.

Does anyone know about this and any potential connection to calcium levels? What about other minerals and vitamins? Iknow that calcium affects phosphorus and magnesium---maybe my whole system is having trouble coming to a new equilibrium? I'm taking citracal. Maybe I need something more?
I appreciate finding the testimonials of others who are having some difficulty post-op. I'm thinking that our bodies became used to rising calcium levels for YEARS, and it may take more than 2 days for everything to go back to normal! Best wishes to everyone!
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HI Meganinnc,

I'm glad your surgery went well. I think it does take a while for our bodies to adjust after being out of whack for a long time. If one parathyroid is producing too much PTH, the normal ones shut down and it can take a while for them to start working normally. I don't know about other minerals but your symptoms do sound like low calcium. Vitamin D might have something to do with it too. I suggest you contact your surgeon or an endocrinologist for help. You should not let those symptoms continue. I did not have high calcium presurgery but was told to take 2000 mg of calcium twice a day after surgery. And I was prescribed Calcitonin for 30 days as well.

There are many surgeons who do MIRP very successfully and they do not charge extra for out of state patients. My incision is about an inch and my surgery involved removing part of the thyroid as well. Since it was a more involved surgery I had general anesthesia and most of my discomfort was the result of irritation from the breathing tube. I had a prescription for Vicodin but didn't need to use it. In fact, two Tylenol in the recovery room was all the pain med I ever needed but an ice pack felt good. Maybe your pain was because the esophagus was disturbed. I didn't turn cartwheels the next day as I was a little wobbly but we did have to go out to eat. We did some sight seeing the second day. I was told to stay in the area for a couple of days in case of complications and to call the surgeon day or night with any questions or problems. I had a follow up visit with the surgeon before I flew home.

Please get some expert help for your discomfort. I think you will feel really good once things are in balance. mass
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Hi Meganinnc & Mass:

I had to have 2 parathyroid surgeries to have the bad gland found and finally removed at the James
Cancer Hospital here in Columbus, Ohio by a fine Head and neck surgeon named Dr. William Farrar.
He is quite experienced in this area, and we found out about him on the internet. I was going to go
to Tampa until I found out about him.
It turned out that the first surgeon I was referred to who was an ENT surgeon was a quack and didn't
know what the hell he was doing. He evidently opened me up and couldn't find the bad gland so he
took 2 perfectly normal glands out and sewed me up. Two months later my calcium levels were still
high somewhere around 10.5-11, so I asked him what he suggested and he said he would go back
in and remove half of my thyroid hoping that the bad gland was embedded there. That's when I told
him that he would not touch me again and went to Dr. Farrar.
After doing several scans and even injecting some kind of dye in my groin area, he thought there
was a very good chance that the bad gland was located in my chest area and sure enough that's
were it was. He was able to widen the incision on my throat pull it up and cutit out. I was very lucky
that he did not have to crack my chest to get at this gland!
He did a great job but whatever they gave me when they put me under made me drowsy for a day or so. Anyway, they kept me in the hospital for about three and a half days because my calcium dropped to 7.8 and they had to get it regulated before they would let me go home.
Now, I only have 1 parathyroid gland and I have to take 7500 mg of Ultra tums daily for the rest of my
life, I guess and my blood levels checked every couple of months.
I feel fine except sometimes I get leg cramps in bed and sometimes I forget to take all the tums
with the the other meds I take every day.
Good luck to you both: Bob
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Hi,
I had one parathyroid removed on Sept. 3, 2010. I had all of the pre-op lab tests, ekg, chest x-ray and Sestamibi Scan done before the surgery took place. My doctor knew exactly which parathyroid glad was the problem. The surgery was performed at Columbia Presbyterian Hospital in New York City by Dr. James Lee, Chief of Endocrinology Surgery. He performs many minimally invasive parathyroid surgeries. I think he is brilliant and so gifted. I have had very little pain except for the back of my neck due to the position of my head on the operating table. At least I presume that is why I had that discomfort. That went away after several days. I also had a headache which I suspect was due to the calcium. I took 4 1,000 mg tablets of calcium per day for a week. After that I am to take just 1,000 until I see the Doctor three weeks post op. I feel so much better. Almost instantly I felt very alert and I am sleeping much better. I also have no aches and pains since the surgery. I thought about going to Florida and I am glad that I didn't waste my time and the expense as I don't feel that I couldn't have been in better hands. jj
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I'm glad that you had such a positive experience. Mine was very similar. There are a number of excellent parathyroid surgeons, you just need to find one and go wherever he is. If there is one nearby, that is a real convenience but it is worth the trip to go where the surgeon is and FL is not the only place. mass
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Hi Bob,
I noticed your post and am wondering how you are doing? Did you find out anything about your GI problems?
Have you ever been checked for celiac disease? It is quite common and also very overlooked.

There is also some association between celiac and parathyroid disease.
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U had surgery in at U of M. when u woke up i was told that they hadto take three of my parathyroids. i have one and my levels are still high, calcium is normal. i just dont understand this.

 

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hi there, I doubt you are still on this forum...I had parathyroidectomy at Tampa Jan 27, 2014 and my thoughts very much like yours...and struggling to with some cramping in calves and a few other things...not the big comeback I expected either...I don't know anyone with this diagnosis and problems and would love to chat with someone...and then in some ways I am frightened to know if they all feel worse with time? would love to chat with you...
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Hey there, I got an email alerting me to your response to that post from so long ago! I can tell you that I ended up feeling better, but I was disappointed with Dr. Norman---he's a pompous ass. My followup PTH was 6---so basically my remaining parathyroids were still shut completely off, many weeks after the surgery. I requested my record and saw that he had BIOPSIED 2 of my healthy parathyroids---which was something that I SPECIFICALLY did NOT want---so I assume he killed them, and now I have a single functioning parathyroid gland. The video I watched before spending a fortune to go see him actually criticized other surgeons for biopsying health parathyroids, so I don't know why it was necessary to do that in my case---but it made the postop period challenging because I had weeks and weeks of numbness, facial tingling, occaisional heart palpitations---all because my calcium kept bottoming out. When I contacted Dr. Norman, he sent me an email that said (and I am quoting him): "Put a fork in it, this is done". So congratulations to him for making 20 million dollars a year in the "Drive-through Parathyroidectomy Kiosk" but he's a penis. Also, I think they're super awesome patient statistics are due to the fact that they don't collect data on any negative surgical outcomes. Attention Florida Attorney General. And finally, he billed my insurance for an "assistant" in a 17 minute minimally-invasive procedure, so I suspect he is also committing insurance and Medicare Fraud.
5 years later I am doing okay, but I only have one parathyroid gland, so as long as that is working okay, I am golden.
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THis website changed the word penis into "penis". Dr. Norman is a "penis".
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Thank you for writing back. I too was so disappointed in their care. I too have only one parathyroid left, 3 tumors they said I have some panic disorder so I am afraid to get real truth...so I guess i will never get my record and read it , I would be afraid it would upset me so much. I researched and read everything I could...I had been sick for 13 years, so fatigued, so much pain, and also lots of just mental anguish, like I was always trying to keep my head above water...and much much more...so my family wanted me to do the surgery and I wanted to too/but I was leary most of the mental stuff I thought might occur that would be worse...My initial consult was about 5 min for an $1700...(oh by the way my dr was Dr. Lopez I never laid eyes on Dr. Norman)...when I got there I did not feel so good about the place, and then then they handed me the papers about the tortoise and the hare idea...there was a split second I wanted to just walk out...then my surgery took almost 2 hours and i had a drain in....that night they did NOT call me, but we called them and left the next day, the protocal was the 5 calcium with NO check for 8 weeks...I started getting so weak and nauseated and feeling so bad, the nurse kept increasing my calcium until I was up to 16 eventually I could not get up...and finally after a week and half they said lets get labs...the lab called my endo here and said I was panic level high and sent me straight to ER...I had called Dr. Normans nurse and she didnt get back to me for almost 3 hours we were ready to walk out the door to the ER...she said this gets tricky if you take orders from 2 drs...I said excuse me, you are 1000 miles from me...I am going with this dr...I said are you saying you are done if I follow this dr. order, well no she said but she was a smart ass...so I spent hours in the ER getting my calcium down and being monitored etc...and the story goes on....they didnt give me orders...and when I wrote them a curt email, they said they had sent me emails that I had never received and I had been printing them all...thankfully I have a great endo following me, we just let them go...I have no idea what needed to be done...but slowly I am feeling better....my calcium has been up and down...I have felt so bad some days...its been 5 weeks...I do sleep better, and I think my stamina might be increasing some....but at least I know by your note that what I was experiencing with them was not just me...I am so glad you are better though over time...and I am so thankful that you replied...after I read some notes on here the other night I had decided I would not read anything else, as it was upsetting to me...I have had some panic since the surgery, but I actually believe it was because my calcium was really low as taking it helped...I am inclined to believe now that even the panic in the past was due to fluctuating calcium levels...thanks for writing back...its all so new and fresh to me, and still so up and down...but I think I am doing a little bit better...I am thinking your surgery might have been several years ago, I forgot...That is another thing, I had such brain fog...I was a home care nurse for 25 years my brain was sharp and I had gotten so I felt so dyslexic all the time....I am hoping that will get some better...seems a tad better????? what Long story, sorry... would you write me a sentence so I can keep in touch with you, not thru this...I will lose track? Thanks...

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