***edited by moderator*** web addresses not allowedmislead me. Done correctly, the MIPS takes about an hour and a half, because the surgeon needs to make sure that your calcium levels return to normal before he/she completes your surgery. DO NOT use a surgeon who does not do this, or you run the risk of not being cured. Dr. Norman's site makes the visitor think the surgery only takes 15 minutes. Well my actual surgery only took 12 minutes,but my blood work took over a half an hour which I'm told is average, so my table time was over an hour. Parathyroid.com speaks of people who were back to work the next day.The next day, I felt like I was hit by a bus. Plan to be off your feet for at least 3 days. My doctor, William Inabnet (Mt. Sinai Hospital, NY), said 4 to 5 days.By the way, I highly recommend Dr. Inabnet. He is very nice, and he does a lot of this type of surgery, which is extremely important. He is a highly regarded surgeon, and is extensively published in this field. Dr. Inabnet's sevices are quite costly, if he does not take your insurance.
I haven't had surgery but wondering if I should be pressuring my doctor for more investigation. From the reading I've done (Dr. Norman's website) I don't think my results are exactly normal. First I had a calcium of 10.6, but no PTH was done. Next I had a calcium of 9.5 and PTH of 40 - normal. Then I had a calcium of 10.0 and a PTH of 50 - kind of normal. My doctor isn't taking me seriously, but one of the things Dr. Norman says is that the calcium in an adult should not fluctuate more than about 0.2.... and mine has fluctuated 0.9 Anyone else have trouble convincing their doc to investigate further? How did you eventually get properly investigated??? What tests did you get? I do have poor sleep, some anxiety, less motivation than I used to, but just put it down to post-menopausal and worrying about some other upcoming orthopedic surgery. Jo
I just had my surgery in Florida. My calcium was in the 10.0 - 11.0 range but my PTH was never higher than 40. My sestamibi scan in Florida was negative. I too wrote my symptoms off to menopause, not exercising, age, etc. I don't have health insurance, which made all of my decisions, from labs, to scans (which I didn't have prior to the morning of surgery!), etc. very carefully scrutinized because of cost. My general physician wanted to do a CT or ultrasound which I declined. Even specialists (endocrinologists) will order scans that can be inconclusive as well as telling you you're fine if your PTH is normal.
I suggest you email your lab numbers to Dr. Norman. He will write you back quickly. Be concise but provide all lab data you have. Because I too had a normal PTH, I had to have more labwork than some. When I first emailed Dr. N., he said I probably did have an adenoma but he needed to see more labs. So I called my doctors office and told them that I needed a lab requisition for the above tests. Go to the actual lab (I went to Quest) for your blood draw if at all possible). I did that once a month for several months (as often as I could afford them). I then emailed him my calcium, ionized calcium, PTH and then filled out the new patient forms on his website and had my phone consult, set up the surgery. I was so excited that they thought I actually had it! To think there was a reason for feeling so bad for so long!
If you're on Facebook, there's an extremely active discussion group on parathyroid there. Actually there are two groups, both are worthwhile. I do agree too that it took me several days to be well enough to do much of anything, flight cancellations do to weather were not what the doctor ordered the day after surgery! Having said that, I know I made the right decision in educating and getting myself to Tampa.
I suggest you email your lab numbers to Dr. Norman. He will write you back quickly. Be concise but provide all lab data you have. Because I too had a normal PTH, I had to have more labwork than some. When I first emailed Dr. N., he said I probably did have an adenoma but he needed to see more labs. So I called my doctors office and told them that I needed a lab requisition for the above tests. Go to the actual lab (I went to Quest) for your blood draw if at all possible). I did that once a month for several months (as often as I could afford them). I then emailed him my calcium, ionized calcium, PTH and then filled out the new patient forms on his website and had my phone consult, set up the surgery. I was so excited that they thought I actually had it! To think there was a reason for feeling so bad for so long!
If you're on Facebook, there's an extremely active discussion group on parathyroid there. Actually there are two groups, both are worthwhile. I do agree too that it took me several days to be well enough to do much of anything, flight cancellations do to weather were not what the doctor ordered the day after surgery! Having said that, I know I made the right decision in educating and getting myself to Tampa.
Wow! Great to get your quick reply. OK, I will specifically ask my doc for consecutive calcium, ionized calcium, and PTH over a period of time first and see if she will agree. I couldn't find an e-mail address on Dr. Norman's website - just the actual forms to fill out. Is that what you mean? I'm not sure if I could afford Dr. Norman - I am out of country and my insurance won't pay, and his cost for out of country patients is even more expensive. I wonder if there are any MIRP trained doctors in Canada, if I need one? Anyhow, I am away on vacation for a couple weeks, so I will get going on this when I get back, unless I can get into my doctor in the next 2 days (she just got back from vacation, so doubtful!) Thanks again for the great response! Jo (PS I'll check out the facebood stuff too!)
I never reply - I just felt compelled to last night! I'm glad you received the message quickly and were glad to receive it! You don't have to go through all the formal paperwork and consultation fee just to email him. His email address is somewhere on that website, but here it is for you: ***edited by moderator*** web addresses not allowed He can be a little terse, or short, in his replies but he gets thousands of emails so I couldn't complain, especially with free guidance. I know this is expensive, believe me, it was very difficult getting the money together. At Facebook, at the top type in Parathyroid and there are two groups. Both have a discussion thread on MIRP doctors listed by state and country. You may find other Canadians and see who or where they went too. Enjoy your vacation!
Thanks so much for the e-mail address. The website is huge and I really did look, but obviously not well enough :$ ! And I'll check the facebook site for finding a doctor. You've been incredibly helpful! Love these sites where we can help each other :-) Jo
To Dr. Inabnet's patient, could you please tell me more about your surgery? I just saw him for a consult & would like to know if your adenoma was localized. They can't find mine. What did he find in surgery?. Who is your endocrinologist for after-care? How are you feeling now?
Thanks!
Thanks!
I had my parathyroid surgery Oct. 2010 with Dr. Jim Norman in Tampa. I was so dizzy, weak and sick after it I didn't leave my house for 2 weeks. I was SICK. When I contacted the Dr.'s office they just kept saying it was normal and would pass. They acted like I was the first patient they ever had who suffered these problems. I had every symptom that you've heard about dealing with parathyroid surgery. I called the Dr. and he yelled at me insinuating that I was a hypochondriac. He was very rude and unprofessional. I felt tricked by him because his website made this surgery sound like it was so simple and problem free. I am still having side effects. They come and go. I said I went into surgery feeling healthy as a horse and came out sick as a dog.
Betty
Betty
Hi Betty, I'm sorry that you are having problems after your surgery. I didn't go to Dr Norman but I do think that he sells the surgery as a miracle cure and it doesn't work that way for everybody. My own surgery and recovery were very easy but I have read of many people who took a long time to adjust after surgery.
You didn't mention followup. You must have had tests by now. How are your labs? I hope you have an endocrinologist or a very good doctor to help you through the rough times. Please don't try to handle it by yourself. What convinced you to have the surgery if you didn't feel bad? A lot of people report that the good days come more and more often and I hope that is happening for you. mass
You didn't mention followup. You must have had tests by now. How are your labs? I hope you have an endocrinologist or a very good doctor to help you through the rough times. Please don't try to handle it by yourself. What convinced you to have the surgery if you didn't feel bad? A lot of people report that the good days come more and more often and I hope that is happening for you. mass
Hey, I'm 55 years old and I just had surgery las Wednesday. It was fantastic. Of course, I'm a very strong person and have a high tolerance to pain, but didn't feel any. I didn't have any problems, work up quickly with no pain whatsoever. Well a little sore throat, but just when I swallowed. Was given an Rx for Percoset just in case, didn't even have to take Tylenol. I could have gone to work the next day but the doctor told me not to drive until Monday, today. Was bored to death on Thursday and Friday. I have nothing, to complain about, except for the fact that i thought all the symptoms I had, unorganized, tired, moody, etc would go away quickly, it didn't. I haven't really felt any different, but mayb it takes a while. After all it's only been five days. My doctor, an endo surgeon, was recommended by my daughter in law, also a surgeon, he's the best. We live in San Juan, P. R. his name is Dr. William Mendez, and I can recommend him with my eyes closed.
So, don't be afraid. Just do it, it could get worse if you let it go and then it could be too late.
So, don't be afraid. Just do it, it could get worse if you let it go and then it could be too late.
Hi. I just had surgery 6 days ago and though I have no pain I also have no voice. It feel as though I have a lump in my throat though I have no problem swelling. Though I was diagnosed with osteopenia I had no other sysmptoms other than an olive size adenoma and elevated calcium levels. If my voice eventually returns I may believe having surgery was worth it but right now I'm pretty frustrated!
I can relate to the lump in the throat feeling and it's very frustrating and scary. I have been in touch with my doctors since the surgery and they said that some folks have the voice / lump in the throat problem and it takes time; more time than those who don't have this difficulty. I was relieved to learn it would get better, but again it seems like it's taking way too long. I don't feel anyone understands how it feels to have this discomfort and weak voice everyday. The only saving grace is that there is no ignoring the disease and it would only have gotten worse, eventually destroying our bodies. I wish we could email directly as I know what you're going through.
I have e-mailed my various lab results to Dr. Norman as they are not clear cut to me, and my own doc thinks they are normal. Calcium 9.5-10.6 and PTH 38-61. Anyone know how long he takes to reply? I e-mailed them to his parathyroid.com address but I have another e-mail ending in rr.com...not sure if both are correct or whether one is newer? Appreciate any advice anyone has regarding contacting Dr. Norman. thanks! Jo
I used the rr email address just a few months ago - I think it goes straight to him. I was a borderline case, and had to have ionized calcium labs run to help diagnose. Also, make sure you have your PTH blood draw done AT the lab. It has to be frozen right away and the results will not be accurate if drawn at a doctors office and then transported to the lab. This is advice from Dr. N. Also, morning is best for PTH. Your symptoms may play a role in diagnosing you too. There are two facebook groups on this specific disease, one is run by Dr. N.'s office - they are VERY active and you can get a lot of help there.
Thanks for the info. Perhaps I'll resend the e-mail to the rr address if I don't get a response soon. Interesting about PTH better done in the a.m. My highest calcium level, the first one, was done early in the day, but no PTH was done with that one. All the others were done mid-day. Perhaps I should include the times if I e-mail Dr. N. again. Jo