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Anyone told they are not a candidate for surgery after scans etc?

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Anyone told they are not a candidate for surgery after scans etc?

Post by patcsw on Thu May 22, 2014 12:40 am

Hello all...

I had a consultation with the chief of parathyroid surgery at Columbia U yesterday (in NY) and after reviewing all my tests, scans etc., he said that I dont fall within the guidelines that call for surgery to cure this disease.  Apparently the rate of cure falls to around 50% with my levels...There seems to be a concern (more than I was aware of) of being thrown into hypoparathyroidism permanently..
I read on Dr NOrman's site that the reason people end up in hypo parathyroidism is that the surgeons are not experienced enough...but these people at Columbia are experts in parathyroid disease...
They told me that its possible that some of my symptoms....low energy, lethargy, imbalance/dizziness/anxiety/depression/sleep problems/reflux might be from re-activated Lyme disease as well..
which I dont buy....my calcium levels have never been above 10.1 and often have been below 10...but they say I definitely have the disease..but dont recommend surgery... They say they will watch me.


Im going to follow up with sending my stuff to Tampa...but Im wondering if anyone else has been told this and what did they do going forward?
thanks!!
Pat

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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by Kathi209 on Thu May 22, 2014 2:12 am

Hi Pat
I am pre op, I also have inconclusive scans, I do think it set me back, My calcium is always over 10.3 up to 11.3 my pth is mostly normal. Sometimes when your labs are not staying elevated they want to watch and wait. There have been a ton of people with negative scans that had successful surgeries, Scan are often worthless, Doc's mostly dx by what your calcium and pth levels are. What is your pth level?

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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by patcsw on Thu May 22, 2014 2:21 am

you know, Im embarrassed to say I dont know what the latest tests showed...but what I gathered from what they are telling me is that none of my levels are high enough, I have no osteoporosis, no kidney stones...even though Im feeling pretty crappy that doesnt fit the parameters of cure...
They told me that they think that Dr Normans group will probably offer me surgery, but given their readings, the possibility of cure is not clear at all, and, according to them, I could come out worse than when I went in....

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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by Little Audrey on Thu May 22, 2014 2:43 am

Pat, I never had osteoporosis, and I never had kidney stones. I never had an elevated urine calcium. I never had an elevated ionized calcium. Some of my serum calcium and PTH levels were normal too, but my PTH was always inappropriately high for my calcium levels. I had 2 tumors removed in November! Had I had any scans before surgery, they would have more than likely been negative, because the 1 that was done the morning of surgery in Tampa was negative. Yes, please do email Dr. Norman! He will diagnose you solely by your serum calcium and PTH levels. You will need several sets of labs, though, for him to be able to diagnose you. He dismissed me the first time I contacted him. I only had 3 sets of labs at that time. He couldn't be certain. I waited 2 more years and contacted him again. That time I had a whole slew of labs for him. He diagnosed me immediately! Good luck!

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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by Kathi209 on Thu May 22, 2014 2:45 am

I know some people have said they e mailed Dr N without paying his fee and he has responded. If you have to pay his fee I would get a new set of labs and get copies of all the labs you have done so you can fax those to him. Always get copies of your labs. There is always a risk of going hypopara low calcium no matter what your levels are. If you trust your endo stay with him or see a good local endo surgeon. Dr N is a good surgeon but he could refuse to do surgery on you also. I would hope not but he has refuse some before and then accepted them a year or two later. Good luck to you , I do know how desperate this disease can make you.

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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by Kathi209 on Thu May 22, 2014 2:48 am

Audrey I think we were typing at the same time. Your faster lol

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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by Tigerlily on Thu May 22, 2014 10:29 am

Patcsw - you can have a blood test for Lyme Disease which should show if you are still making antibodies to Burgdorfia Borellia even years after being bitten (and you might not know you had been bitten) - that would be Chronic Lyme Disease.

Check it out on line and get the blood test done. Some people say it is inconclusive but I think it's still worth doing. I thought I might have Lyme instead of pHPT, but my Lyme test was negative.

At least you will have ruled that out as far as possible, when they next say "it could be Lyme".

Love Tigerlily xx

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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by Admin on Thu May 22, 2014 1:18 pm

It's always a good idea to ask for a printout of your results, as this enables you to get alternative opinions.

Also, with your symptoms, have you had your Thyroid hormone levels checked?

Edwin
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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by patcsw on Sat May 24, 2014 1:07 am

Thanks all, for your support....I had lyme and eurychulosis twice about 15 years ago...almost all of my lyme tests have come back low positive...Ive been on one regimen of longer antibiotics after a bout w pneumonia a couple of years ago...I will have another test...my primary (who is a lyme specialist) is saying its easier to go on a regimen of anti - biotics and see if I feel better, than going to Florida for surgery - which is true in a way...but this just does not feel like Lyme to me...
Ive never felt dizzy and had imbalace problems w Lyme...even chronic lyme...
re thyroid levels..yes, I have had them checked..normal...
I have two more quesitons:  has anyone taken antivert for diziness?  and if you've had anxiety symptoms has anyone taken an ssri?
thanks!

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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by Lucycatnaps on Sat May 24, 2014 6:26 pm

Hi Pat, 
I was given cyclizine tablets a few years back for vertigo but they just knocked me out and felt so tired on them I had to nap in the afternoons.  I stopped taking them and finally worked out the reason I had vertigo was due to anaemia.  I am a great advocate of Floradix tablets for iron as it is gentler on your tummy etc.  I was prescribed some Citalopram back in January but have not taken them yet as was very anxious at the time as HPTH had not been mentioned then.  I think they are supposed to be non addictive.
Sue
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Re: Anyone told they are not a candidate for surgery after scans etc?

Post by shery on Sun May 25, 2014 7:10 pm

Hi pat, I had severe anxiety with parathyroid disease. I  was prescribed 10 mg cipralex=lexapro and 0.25 mg xanax before sleep. They were absolutely not effective,I continued on 10 mg cipralex though.The anxiety continued after surgery,so I increased the dose to 20 mg after 2 months post surgery.I found considerable improvement in anxiety after the 4th month postop. The depression did not improve considerably though.

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Re: Anyone told they are not a candidate for surgery after scans etc?

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