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Hi,
Hope you can help me. I was just diagnoised with a adenoma which is non cancerous tumor on my parathyroid. My doctors has run so many calcium tests I'm beginning to feel like a pin cushion. I also have osteoporious and osteopenia. This all adds up to what I know means I need surgery. My doctors are all in disagreement. My symptoms I know are getting worse. I need a doctor in NJ or NYC who can do the mini surgery procedure similar to Dr. Norman in Florida. If I could afford him I would go but he is out of my insurance. I have had a scan so I know that I have a small adenoma and I know it will grow and I'm sure it's sucking the calcium out of my bones. Can anyone refer me to a surgeon who has done this procedure. All the ones that some of my doctors who agree I need surgery are giving me ones that do the old procedure. I'm a llittle scared and confused by all the doctors who want to wait acknowledging that it will grow and those who want it out. They are specialists which is worse. I have seen two endocrinologist with two different opinions and really no way to make me feel better. One wants to wait, treat me with Vit D and Boniva and the other wants me to watch the calcium levels for another three months before he recommends surgery. Believe it or not my GYN is the one who after researching it turned me on to Dr. Norman and his articles and convinced me to search for a surgeon I really need some help I have Oxford and it's not great but they can't give me a recommendation. I'm up a creek and I feel like sinking. This is my first post I apologize for sounding desperate but I feel I am :-( sorry tied to put a sad smile on and I don't know how to do it![/enc]

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Hi Runningaroundwithoutwings (I love your name)

I know exactly how you feel. It took me a year to get to surgery because my calcium tests were always normal and my scan was negative. Many people wait much longer than that. It is very frustrating when the doctors don't agree and it seems that many of the experts don't know much about hyperparathyroidism. I had a wonderful surgeon but he is in Los Angeles and that is a really long way for you. I'm sure there must be a good one in NY. I know I have seen other posts asking about NY. You might check through all the parathyoid questions on this board and see if you find a surgeon mentioned.

You are correct in looking for a surgeon who does the minimally invasive procedure. Dr Norman is the only one I know of who always uses the radio probe. Others only use it when they don't know where the adenoma is before the surgery. Since your scan showed the adenoma, your surgery wouldn't necessarily need to be radio guided but there is no reason for an invasive procedure. It's been about six months since my surgery. My scar is about an inch long and hardly noticeable to other people. The surgery and recovery were easy. I had half the thyroid and a very large nodule removed as well so the surgery took longer but did not require a larger incision. Be sure that you feel really comfortable with your surgeon and that you get all your questions answered. Be sure that your surgeon has a lot of experience with parathyroid surgery and does the surgery on a regular basis.

I hope you find an excellent surgeon. mass
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Dear Mass,
Thanks for the advice and the compliment of the name it's just how I feel! I had a 10.1 Calcium level so now my endocrinologist wants another bone density before he commits to anything but thinks I should wait! I have MS so I went to my doctor and he had no problem giving me a surgeon in NY who does the mini surgery in Columbia University. I just am so scared that all my symptoms are in my head. Even though my scan shows a adenoma now I feel like they think I'm a psych case for wanting to go to a surgeon. My MS doctor didn't seem to think it was a bad idea but my internist and endocrinologist actually said knock yourself out if you want to find someone to do something you don't need. Frustration and anger is getting the best of me. One told me that since I have osteoporsis since 07 and I getting a density again this week of course it will show the same thing. It doesn't prove a thing. I can't understand doctors and I'm in the medical field.
Thanks I wonder how many people quit and just feel lousy their whole life. !
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Dear Runningaroundwithoutwings,
I don't know how many people quit but I do know that many people feel awful for years before they are able to have the surgery. It is not a miracle cure-all as Dr Norman leads you to believe. Well, it does seem to work a miracle for some people but not for everybody. Most people do feel much better after surgery but for some it takes time. There are many doctors who do the surgery well, just be sure that yours is one of them. Ask questions until you feel comfortable.

Since my calcium was normal I didn't have the severe symptoms that many people have but I did feel better after surgery. Besides, they found two small cancers in the thyroid lobe that was removed. We didn't know they were there and they might never have caused a problem, but I'm glad they are out.

Yes, it is so frustrating that doctors don't agree and so many just don't seem to know. I know that you are not going to Los Angeles for surgery but I suggest that you contact my surgeon. Go to Larian MD and call or email him. If you tell him that someone in Colorado told you to contact him, he wil know who it is. He is just a very nice, caring person and he will help you even if you're not his patient. I'm sure he will answer your questions and make any suggestions he has. He might even be willing to talk with your doctor. If he hadn't volunteered to call my endocrinologist, I might never have gotten to surgery. You do not have to worry about contacting him, he just wants to help. Everybody I have ever talked to in that office is very nice.

I don't know what effect your MS has on your parathyroid disease but your symptoms are not in your head - I guess they probably are in your neck though. Please stay in touch. mass


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Hi there, I agree with what mass has posted, if it helps at all. I know that it's difficult to get a clear perspective when you're in a difficult situation like this but I think that it helps to have as much input as you can from people so I can tell you that what mass has said seems to be the most reasonable answer. Keep me posted on how it goes for you, okay?
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Mass, by the way, it sounds like you have been through a lot related to this. Would you mind sharing a few of your experiences? I would be really interested to hear if you're willing to! Thanks. :)
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I had parathyroid surgery done on Feb. 9th 2009. The surgeon I used was Dr. Stanley Z. Trooskin, Professor Surgery at the Robert Wood Johnson Medical School. Dr. Trooskin is an excellent doctor. The hospital is in New Brunswick, NJ you can find it on the internet. Dr. Trooskin said my tumor was the size of 13 peas together. You can hardly see my scar on my throat. Good Luck.
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Dear Runningaroundwithoutwings,

Hello. I feel bad at how doctors think they are GOD. I had symptoms of hyperparathyroidism in August 2008 until recent. Today is August 1, 2009. I had surgery yesterday July 31, 2009 by Dr. Douglas L. Fraker, Chief Oncologic Surgeon, at the University of Pennsylvania in Philadelphia. He is great, He removed a tumor the size of a walnut from my upper left thyroid lobe. I am willing to recommend him to anyone.

This is how my story starts, I went to my primary physician, in Southern NJ, in August 2008 and told him my symptoms. He said lets get some lab work to see what ails me. I had a calcium of 11.1 and he told me that it just might be a lab error. I had it rechecked and it was 10.9. He said to see a Rheumatologist and a Nephrologist. I saw the rheumatologist in his office and he got x-rays and told me that I don't have anything wrong with me, basically telling me it was in my head. I had symptoms before I searched the internet and the high calcium worried me, so I searched and found Dr. Norman's site. I printed the whole thing out and took it to my doctor and he told me, "Stay off of the DAMN internet and that I don't have hyperparathyroidism! and I am a DR. and you are not, I could probably tutor you to be on the same level as I am, but it would cost you a lot of money." and then embarrassed me in front of his nursing staff by telling me this stuff in front of them. I went to the nephrologist and he confirmed hyperparathyroidism with , but he had a wait and see attitude after the sestiamibi scan came back negative. He then wanted to treat me with Sensipar, I told him I wasn't going to take it. He then wanted to give me Vitamin D supplements, and again I wouldn't take them. I was finally on my own, so I called my primary physicians office and their referral line is automated, I requested a referral for Dr. Douglas L. Fraker after I confirmed he accepted my insurance. It took me two months to get an office visit with him. I went and he said, "You have hyperparathyroidism and you need surgery." I knew this was what I needed from all the research that I have done and was really please with the way Dr. Fraker conducted himself. He wasn't rude or cocky like my other doctors. I then scheduled surgery with him and never told my primary or the kidney doctor. I had surgery yesterday and I am not in any pain at all. I have a 1 and 1/2 inch wound and it looks great and I feel great. It makes me sad how doctors don't want to learn anything and knock your efforts to learn. I am definitely going to find a new Doctor, cause no one needs to be belittled. I feel your pain and I am so sorry how your doctors are treating you. I don't know how your Doctor's office does for refferals, but try and do your own thing. You know you have a tumor and it shows on a scan, the only thing to do know is have surgery. My scan was negative so it took Dr. Fraker 2 hours to find my tumor, He doesn't do the MIRP procedure, but all of his sugeries are minimally invasive. He doesn't use the probe, but noted by another poster you don't need the probe cause your tumor was actually found in your neck. I would bet it wouldn't take more than a 1/2 hour for your surgery. Again, I would like to appologize for the ignorance and unknowing of other doctors who don't care. Best of Luck, Eddie
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For the poster on Dr. Fracker: Basic question for you. I have struggled many months with thyroid and I believe
also hyperparathyroid issues. The latter preceded the former by many months, and continued unabated even
after the thyroid was returned to normal levels via medication. As to the thyroid, everyone's 'on board', as T4
and T3 were briefly up last summer and they even caught a brief moment of arrhythmia to go with the months of
tachycardia. But all I get on the hyperparathyroid end of things is that the lab readings just aren't sufficient
(back and forth between technically normal and mildly elevated, mostly in 10s for about 9 months on the CA;
PTC 'normal') - never mind most of the actual symptoms I have are 100% consistent with primary hyperparathyroidism.
Under what Norman says, this should be an easy call, particularly with a basement Vit. D reading. But I'm in the same position as many of you. I can't afford Norman. I set up an appointment with Dr. Fracker in early 2011 to be evaluated. However, his
office told me that I needed to bring a sestamibi and a neck ultrasound with me. PCP questions whether
sestamibi at this point would be 'covered' given lab readings. PCP very good but defers to endo, who has
'omnipotence issues' and appears unwilling to even consider the possibility of primary HPT. Recent rising
liver enzymes have temporarily cut off the 'medication fix' for the thyroid issues so if that kicks up as a result
no doubt soon things will be even more difficult to sort out. Is there any way of getting evaluated by Dr. Fracker
WITHOUT getting the sestamibi first? Whatever happened to 'the clinical picture'? It just seems like this is all a
giant circle.
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Dr. Stanley Trooskin robert wood johnson hospita;
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 Hi, I am struggling with all these symptoms, and I have hypothyroidism, but my calcium was below 10. How did you get a diagnosis if your calcium was normal, if you don't mind me asking. I am going to lose my mind if they don't at least test me. I can barely function

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Hi,

I just had my post-op follow-up with Dr. Fraker today for a completion thyroidectomy. I had the first lobe removed in May by another doctor. I crashed on the table so he couldn't complete the surgery. Needless to say, I was scared this time.

Dr. Fraker was wonderful. My surgery went flawlessly but, just in case, they were prepared for anything! He came back to the recovery room twice to check on me (even though he had many surgeries that day) and had the anesthesiologist check on me, too.

Today I went for my post-op visit. I've recovered faster this time. My voice has come back in two weeks while last time it took three months. My incision looks great.

Dr. Fraker has an incredible reputation, and it is one he deserves!
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Ask your doctor to research normo-calcemic hyperparathyroidism. it's really not that uncommon. If you need to talk with an expert, contact Dr Larian in Los Angeles. I wish you well. I know you are miserable.
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Who was your first doctor? I have hyperparathyroidism and have putting off surgery for years. My numbers were close to normal. (It started 19 years ago) I was hoping they would make advancements in the surgical process because it seemed pretty primitive at the time. It seems they have with the unilateral surgery. I was told by my doctor that Norman is the best. I live near NYC. Can also easily go to New Brunswick. I hear the Doctors at Columbia U med Center with Dr. Lee and Dr. McConnell. Has anyone had any experience with them?
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Anyone still active on this post? I will be seeing Dr. Fraker tomorrow. I have the high calcium but negative scan, I too have nodules on my thyroid which I've been told are up unrelated. Any advice?
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