Parathyroidectomy

[kitkatz]

Well it finally happened the doctor noticed the rising PTH levels and fairly uncontrolled phosphorous levels and decided to refer me to a surgeon.   Oh Geez.  Please tell me this is simple and uncomplicated???And it is a quick recovery time with little pain???  Anyway whatever the truth lay it on me.

Katherine

[tamara]

I had my parathyroids removed on the 26th May.
Woke up from theatre with a drain tube draining any "gunk" away from the site, and a drip with calcium.
I was given some morphine when I was taken from theatre to recovery, the rest of the time I was just on paracetamol.

The pain wasn't too bad at all, and was discharged two days later, which is about the norm here in Melbourne, Australia.

You will most likely be on a lot of medication after it for a while though, just until all the calcium is resucked up in your bones after it having been depleted.

Still waiting for my meds to go down, currently on 15 calcitriol a day and 12 caltrate.

Small scar on my neck, but hey just adding to my scar collection, we all have one of those don't we ?

[Epoman]

Well it finally happened the doctor noticed the rising PTH levels and fairly uncontrolled phosphorous levels and decided to refer me to a surgeon.   Oh Geez.  Please tell me this is simple and uncomplicated???And it is a quick recovery time with little pain???  Anyway whatever the truth lay it on me.

Katherine

Well I had the procedure, but they could not find all the parathyroids, most people have 4-6 paras. So they had to go in a second time, and by doing so the surgeon cut one of my vocal cords, so I had to learn how to speak all over again using just one cord. The amount of calcium pills they will have you on will make you sick to your stomach and it will take some time for your body to adjust. They will leave some parathyroid in (you can NOT live with no parathyroid function. They most likely will put a piece in your arm for easy access in case they need to take out a little more. If you have a good surgeon the scar will be on a fold of skin and be unnoticeable after awhile. The pain is minimal. You run the risk of the surgeon cutting your cords, both of them, then your screwed, so ask the surgeon how many of these surgeries does he do yearly, he should do at least 50+ a year in you are in or by a major city. Sometimes the surgery can take an hour sometimes it can take a few depending on how hard the parathyroids are to find. Sometimes the paras even move or drop into your chest (like mine did) and that makes it especially hard to find. They should be the size of a grain of rice, so you see that makes them difficult to locate. One of mine was the size of a golfball, believe it or not. My PTH before the surgery was 3,500+ off the chart. Once they remove the parathyroids your PTH will DROP within minutes, they use special machines to monitor the progress during the surgery so they will know if they got them all, like I said before everyone is different some people have 4,5,6 or even more parathyroids. You will do fine as long as you have a good surgeon. A general surgeon can perform the surgery however a specialist is preferred. Understand that you will be on ALOT of calcium pills 2 different kinds most likely and I am talking taking like 15-30+ a day. And your calcium will still be low until your body adjusts. Hope this helps.

You might also want to check out this thread: http://ihatedialysis.com/forum/index.php?topic=298.0

- Epoman

[kitkatz]

Thank you all for the info

[Rerun]

After your parathyroids are removed can you drink all the milk you want to?

[Epoman]

After your parathyroids are removed can you drink all the milk you want to?

Well Milk still has Phosphourus and it is still a liquid, so not really. But you definately don't have to worry about your calcium being to low.

- Epoman

[angieskidney]

After your parathyroids are removed can you drink all the milk you want to?

Well Milk still has Phosphourus and it is still a liquid, so not really. But you definately don't have to worry about your calcium being to low.

- Epoman

I still have to take calcium (I get the calcium in my tums) after I had all mine out.

[Mom3]

When my son had this surgery a couple of years ago the surgery seemed to go well but he required an IV following surgery that infiltrated and seriously burned his hand. It was the worst thing he has been through to date, without question.  If your levels drop and you require an IV be very careful if you feel any infiltration. Apparently the nurse working knew nothing about this and she gave him a pain shot when he complained his hand was burning terribly and knocked him out. If I hadn't noticed redness and swelling and demanded she do something, he would have completely lost his hand.

As it was he required months of PT and if he were active would require a skin graft. They were very afraid his tendons were damaged and that he'd lose a potential fistula site. He has impaired circulation in that hand, two years later! Worst of all, the parathyroid was not implanted in the arm so the fragment left in the neck grew back and his PTH levels are soaring again.

Not trying to scare you, but no one warned us about these post surgical IVs and we had no idea how serious an infiltration could be--and had an ignorant nurse on duty.

Good luck with yours!

Mom3

[angieskidney]

When my son had this surgery a couple of years ago the surgery seemed to go well but he required an IV following surgery that infiltrated and seriously burned his hand. It was the worst thing he has been through to date, without question.  If your levels drop and you require an IV be very careful if you feel any infiltration. Apparently the nurse working knew nothing about this and she gave him a pain shot when he complained his hand was burning terribly and knocked him out. If I hadn't noticed redness and swelling and demanded she do something, he would have completely lost his hand.

Wow!! Are you serious?? Man!! I mean, even without me having any nursing degree I know enough from years of being in hospitals (since I was 9 years old) that any nurse who is told that any medication is causing a burning in the hand is an allergic reaction! Of course this should not shock me ... when I was in the hospital last year for 6 weeks and started having allergic reactions the nurse didn't believe me because I wasn't having the exact reactions that she learned in school to be "allergic reaction"!! The doc came in later and said it definately was.

[Panda_9]

I think thats the calcium that causes burns like that. I remember being told this in the ER recently as I was having a calcium drip to lower my potassium. If you ever notice pain, swelling, redness, puss, anything like that with an IV, report it!

[Mom3]

Yes it is the calcium.
It causes a chemical burn that literally destroys tissue. No one warned us. Had no idea at all and clearly the nurse had no idea either. She treated it just like a saline infiltration--when it was burning away tissue inside his hand.
Even when they realized he had been burned the hospital was very slow to start the emergency measures called for with a calcium burn. he suffered horribly and more than necessary. Really none of it was necessary. As soon as he complained the nurse should have pulled the IV, to save tissue.
The doctors were initially afraid the tendons had been destroyed. Fortunately I insisted on an excellent hand specialist who was very conservative and did not rush to operate, the way the hospital doctors initially wanted to do. My son's fingers were swollen like smoked sausages and the hand really wasn't recognizable AS a HAND anymore... he was hospitalized 11 days with the hand, and could not use it at all for a couple more weeks after that, and he is right handed. i took a month off work he was in such awful shape... He had a huge patch of black necrotic tissue even after it was officially better and had to be checked weekly by the surgeon  to make sure infection wasn't setting in. He couldn't drive and had PT on the hand three times a week. During the course of therapy,we saw THREE different had experts since different doctors were telling us different things about surgery.
It was really the worst thing he has been through so far, so be really careful with calcium IVs. And I really hope your surgery works for you!!

I'm curious, is it common in most places for the remaining piece of the parathyroids to be implanted in the arm? The first surgeon my son saw wanted to do that, but my son hated the thought of it! Now that he is facing the prospect of another surgery on his neck since his PTH went back up, he feels he made a mistake. Just wondered what standard practice is in other areas. I'm between two fair sized SC cities. In one, they implant in the arm most of the time and in the other, they don't. These places are THIRTY miles apart and we are in the middle!

[Panda_9]

When I did my training if I was setting up an IV, I always red the information leaflet that came with the drug I was drawing up. If it didnt have one, I went and looked it up. Pity hardly anyone seems to do this these days.

[angieskidney]

I'm curious, is it common in most places for the remaining piece of the parathyroids to be implanted in the arm? The first surgeon my son saw wanted to do that, but my son hated the thought of it! Now that he is facing the prospect of another surgery on his neck since his PTH went back up, he feels he made a mistake. Just wondered what standard practice is in other areas. I'm between two fair sized SC cities. In one, they implant in the arm most of the time and in the other, they don't. These places are THIRTY miles apart and we are in the middle!

I haven't heard of that but in Canada they don't do as many options that there are in the States. All I know is that when I had mine removed I read about the optional getting only some of them out instead of all 4 (usually 4 but some people have more or less). I had no option. They took all 4 out. My mom was really worried because she felt this was just a dialysis-related thing and that once I would have another transplant that it would be better if I kept my parathyroids because they would be needed again / or work again. But they tested them and said they all had to come out anyway.

I never heard of having them implanted in your arm.

[Panda_9]

I have heard about part of them getting implanted into the arm, not sure how common it is.

[kevno]

Just had a half of one left in my neck. PHT result creeping up just over 500 now.

[Rerun]

Just had a half of one left in my neck. PHT result creeping up just over 500 now.

YEA!  Your back!!!  I'll have to look for your post!  I just had to day "hi."

[Riki]

I had 3 and a half parathyroids removed last June... I don't recommend having it done unless it's totally necessary.. they told me that it would take a month for phosphorus and calcium levels to level up.. took over a year, and they're still not right... I was hospitalized twice because of it.. once for high phosphorus, the other for high calcium...  I was told I had something called hungry bone sysndome, which caused the bones to suck up all the calcium, leaving none in the blood to counter the phosphorus... as for implanting the parathyroid in the arm, i asked the surgeon about this during the consultation.. he told me that I should never have that done, he considered it malpractice...
I didn't know that calcium could burn the tissue.. I'll have to remember that one.. I've had calcium interveinously a couple of times... it was how I was stalbized when I first got sick... until I could be dialyzed.. I had high phosphorus levels which caused lockjaw.. and I couldn't move voluntarily..

[angieskidney]

I was told I had something called hungry bone sysndome, which caused the bones to suck up all the calcium, leaving none in the blood to counter the phosphorus...

Ah that is what it is called. I had that too!

[Bajanne]

Yesterday I asked our supervisor to let me have a look at my last results.  Since I have been reading many of your posts, I realise that I really have no idea what is going on in my body [we don't get reports as some of you do].
She showed my my last PTH results and they are 409.  How bad is that?

[angieskidney]

Yesterday I asked our supervisor to let me have a look at my last results.  Since I have been reading many of your posts, I realise that I really have no idea what is going on in my body [we don't get reports as some of you do].
She showed my my last PTH results and they are 409.  How bad is that?

I just looked through my dialysis bag where I keep all my dialysis records and thing I take to dialysis with me .. and it was getting so big that I cleaned it out and I must have thrown out all my old records I guess I will have to wait until after labwork so that I can get the new results to know my PTH numbers ..

[Panda_9]

bajanne2000 my last level was 660, and they arent real worried about it. They upped my calcitriol and are going to see how it goes. 409 is high, but its not tooo bad. Normal is 14-72, but for a kidney patient the higher side of normal is higher than 72, I cant remember exactly, I think it is 270, but dont quote me on that. I posted it somewhere on the forums but no idea where.

[kitkatz]

Well folks, the parathyroidectomy is being scheduled for around the first of November this year.  I am a little scared and worried, but Id id read about it on line. I have the head surgeon of the department doing the surgery.  he was very nice when I talked to him and answered my questions.  He gave me all of the bad news then said it is usually a month to recover with few days spent in the hopsital.  He says it is not very painful.  We shall see.  I am NOT looking forward to having my throat slit and being operated on again.  Oh well another scar to add to the collection.
  I plan to be back at work the end of November. I have a break from the end of October to the last week of November, then three weeks of work and the Christmas break.

[goofynina]

Hey Kitkatz,  our thoughts and prayers are with you always.  If i remember correctly, there are several members here that have had the procedure done and they seem to be doing fine.. so no worries, ok.  (i know, easier said than done) but we are here for you

[Rerun]

Katz, so the Sensipar didn't work for you hua?  How long were you on it.  What did they say about it?

[Bajanne]

Here goes our superwoman, flying onto another challenge.  We know that you will come through this victoriously.  You have to; you are a vital part of our resident superhero team.  How is Victor doing, by the way?  How will he cope with your being away?
You are definitely in my prayers and caring thoughts.