Looking for a referral for a parathyroid surgeon

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question for Melody8. How did your surgery go with Dr. Collins in Colorado? I'm interested in knowing how good he is. DId he do the MIRP surgery and use a sestimibi scan.
Also what are people's experiences with Dr. Larian in California. Thanks you.

parathyroidpatient · Newbie Joined: 03 Apr 2008 Posts: 8

Hi,

I know this post is probably outdated for the question posted on looking for a parathyroid surgeon in the west, however; maybe it will help those in the future.

I had one of my parathyroids removed recently by Dr. Stickney in Seattle, WA. From what I understand... she studied with Jim Norman of Parathyroid.com. She does the radioguided type of surgery. She made a tiny incision which I believe when fully healed, I will not be able to see. I beleive she is well educated in parathyroid disease and is very competent. At the pre-op appt. she was very informative, clear and concise in explaining everything and she is a very nice lady.

My only complaint, that the office is not very adept at dealing with out of town patients. Scheduling was not easy, it takes days for them to call you back.... and they don't send you any pre-surgery info, such as schedule, what to expect, nada, nil, zip! (they do of course send you paperwork to fill out and have your local Dr. send them your medical history.) So...make sure ahead of time what the instructions are and the time you are scheduled for the Sestamibi and Dr appointment. I only found out that my Sestamibi scan had been rescheduled, (2 days before scheduled to leave) by calling and finding out. I did mess up my travel plans as I had to go up a day earlier.

So.. if you are planning to fly, have your time sealed in concrete. Speak to them a couple of weeks in advance.....Do not take Ibuprofen in large amounts a week before surgery, as I almost did not get my surgery because I was taking ibuprofen, though not in large enough amounts. Large amounts btw, are really not that large, so DON'T take any the week before.

All in all, Dr. Stickney did a great job and her nurses are very nice. Office staff leaves more to be desired..... Nice but not very organized for the out of towners, IMO. Also, I have not spoken w/ Dr. Stickney since surgery, didn't find out the size of tumor taken out, and even though they got the pathology back, no one called me with the results... your kind of on your own before and after the surgery.

As I am 6 days post op, I can't say I feel much better yet... I am still VERY tired and weak. Just vaccuming makes me exhausted... I am however, able to sleep better than before..... I can actually take a nap and sleep, not just lay there. I am happy about this <grin>. I am still having bone pain, muscle weakness, brain fog and am a bit depressed. Hoping the issues will resolve soon....

my_parathyroid? · Newbie Joined: 04 Apr 2008 Posts: 1

Wow! I just made an appointment with Dr. Stickney's office. Where did you have the Sestamibi scan done? I had a CT scan but there was no adenoma seen. Can you tell me how you were diagnosed? My calcium levels are high normal 10.2-10.3 but parathyroid hormone is in range 27. Vitamin D is low less than 20. I have the fatigue, horrible bone pain in my hips, muscle weakness, brain fog and depression (probably from not being able to find the problem?). I have not got a diagnosis yet.

Did you have a definite diagnosis before you saw Dr. Stickney? If you don't mind, what were your blood levels like?

Geez! I am hoping this is the issue so it can be resolved! I didn't find the office staff overly friendly either but maybe they are just very busy? It is hard when my emotions are upside down. Confused

Thank you for any help you can share.

mrln · Newbie Joined: 05 Apr 2008 Posts: 1

I was just diagnosed with Hyperparathyroidism. I was referred to Dr. Laura Szynter, a surgeon at Long Island Jewish Medical Center in Lake SUccess, outside of NYC. She is a graduate of washington university med school, and undergrad at MIT. SHe's taught at Harvard Med, Brigham and Womens, and currently at Albert Einstein. SHe recently published a study on MIRP that included nearly 400 patients operated on by her and two other doctors. She seems to get good results. I'm looking into how good the Sestimibi scans are at LIJ; I've emailed Dr. Norman about that, and if he's heard of Dr. Sznyter. I'll keep you posted.

parathyroidpatient · Newbie Joined: 03 Apr 2008 Posts: 8

To answer my_parathyroid's question....

My blood calcium range was between 10.3-10.5, PTH 85 and vita. D 16. I too have a lot of bone pain, achey muscles, sore popping joints, fatigue, hair falling out, brain fog, depression, etc... I did not have calcium dumping in my urine nor did I have kidney stone problems.

I went to OHSU and had an ultrasound done by Dr. Koslin the radiology Dr. there. He is very good at locating w/ultrasound. He did find an adenoma on my upper right parathyroid. I did not have a CT scan..... We had a pretty good idea that all the tests were leaning towards HPT b4 I made the appt. with Dr. Stickney.

Once I got all my levels tested and had ultrasound, it took a month to finally get an appointment. I'm sorry, it is a long, depressing process.... You know you have something wrong, feel like crap and want it taken care of yesterday, but it is very much a hurry up and wait situation....

I had thought I would go to Dr. Norman in Tampa, as I really wanted to have the MIRP and recognize this as leading edge technology for HPT. However, I did a lot of googling trying to find somebody in the NW that was doing it and finally found Dr. Stickney.

My Sestamibi and a second ultrasound test was done at Swedish Memorial there in Seattle. Dr. Stickney's office scheduled it for the same day as my pre-op appt. How they usually work it is: have tests and pre-op appt. Wedneday and then surgery on a Thurs. Plan for a full day, I was exhausted, testing started at 7:45 am, and by the time we were done with the pre-op it was 4:30 pm. Swedish radiologist was very good with locating the adenoma, in fact he told Dr. Stickney he had located "The Beast," LOL! I guess he hadn't referred to an adenoma like that before... it was throwing of so much PTH it was very easy to see.

Yes, I think the staff at Dr. Stickney's office are very busy..... but it would be nice to have a little nicer bedside manner for the staffer's as I felt like I was such an imposition each time I called.... they were very short on the phone..... wouldn't call me back for days..... I guess they just don't realize how long we have been dealing with these issues and how much we want to get the problem taken care of ASAP, they don't seen to be in much of a hurry to help get things going...

The other problem is that once you get your appointment, they really don't send any paperwork, like what to expect, pre-op info, hotel info or any other info, nadda, nil, nothing...... and if you call them to ask info, again you feel like an imposition.... But, I would do it all over again <g>, Dr. Stickney seems very educated and has a great bedside manner, her nurse Carol is sweet, but very to the point, no extra conversation here.... But I wasn't there for a sit down and a warm cup of coffee..... they took care of the business at hand.

I stayed at the hotel Max, which was a nice, however, small rooms and further away from everything. I suggest that you book at the Silver Cloud, pretty new, and easier access as it is right across from the Poly Clinic.

I don't come to this website very often and I thought that if there was a response to my earlier comment, that I would recieve an email, which didn't, so..... it may be a couple of days b4 I check back here.

Best of Luck ~ L.

parathyroid PT · Newbie Joined: 06 Apr 2008 Posts: 3

I am so glad to hear that other doctors are being found. I in fact did finally find several in the Denver Area. And one great one at LA's Cedar Sinai. Babak Larian is the guy from LA and was so helpful in getting me started in the right direction. I wish he was not so far away because I would choose him over every one!! Google his name and you can find him or look up the hospital. His office is helpful with out of town arrangements and he called me personally several times to see if I needed more information. He has a lot of experience with this surgery which made me feel better too.

I also found a Doctor at Swedish in Littleton Colo and another at the University of Colorado in Aurora. I am going with the him just because he is closer. What I found is there are a lot of Doc's that do the sugery. Just about any good cancer center is going to have a good head and neck tumor person. Good luck to you all. My surgery is April 21 and I can not wait to feel better and be a whole person again.

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parathyroid PT · Newbie Joined: 06 Apr 2008 Posts: 3

I just called Dr Collins office in Fort Collins and they DO NOT do the MIRP. They do Not use the Gamma Probe. That is fine in itself but his incisions are larger than the other doctors I talked too. The nurse said it was about 3 inches- compared to the others that are around 1-2cm at the largest. So now I really hope we hear from the person that posted the info on him to see how her surgery went on 3/12/08.

CHERYL12 · Newbie Joined: 16 Apr 2008 Posts: 1

I am trying to find a surgeon in the Dallas/Ft Worth, Texas area that does parathyroid surgery, does them often and is very good at it. I found one that I like, but I don't think he does the MIRP procedure. Does it really matter. Is that procedure that much better than the old Standard kind?

Leida · Newbie Joined: 22 Mar 2008 Posts: 22

Find out if he does the old fashioned kind, or the mini surgery using intra-operative assays - that's still a mini-surgery, but instead of using a gamma probe, they check the PTH hormone levels while you're opened up - not as bad as it sounds, because it drops rapidly, so might add on 10-minutes to the procedure.

That I'd go for.

I came to America to avoid the old fashioned kind of operation. They couldn't localise my tumour, said it would be an 8-10 inch scar, a 6 hour surgery, and a 40% chance of success - and a much higher risk of complication than with mini-surgery.

The deciding factors for me were the low chance of success (it's a lot higher if they can localise the tumour), followed by 1) severe complications - the old fashioned surgery has a much higher rate of wrecking your recurrent laryngeal nerve (never being able to talk again, and needing a tracheostomy to breathe), and killing your good parathyroids, so you go hyp0-para permanently after the operation (you do not want this, trust me), followed by six hours is a looong time to be under, and I really wasn't keen on the scar, either.

Mini-surgery is a whole lot safer from just about any way you want to look at it. Now, granted, if it was a choice between the old fashioned surgery with a surgeon who's done 2000 successful parathyroidectomies and a mini-surgery with a guy who's done 3, I'd go with the old-fashioned. But if it's at all possible, go to an experienced surgeon who's experienced in mini surgery - you'll be laid up a lot less from the operation itself, and it's far less risky than the old-fashioned kind.

Looking for a referral for a parathyroid surgeon

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