Just arrived in Tampa - new member

Hi everyone. Absolutely delighted this new forum has started as the old one has been a lifeline and a mine of information, but I couldn't join!! After years of feeling increasingly unwell and suffering so many of the symptoms that have been written about in the old forum, I was persuaded by my daughter to ask for blood tests in January. Results showed calcium of 2.8 and pth of 106 and Vit d 34 which led me to discover you folk and Dr Norman's site. Two further sets of tests in January and February found much the same thing though pth went up to 146 in February, so here I am, in Tampa, booked to have surgery on Tuesday. Tired but so happy to be here, and to have avoided the lengthy run around so many of you poor folk have suffered. This would never have been possible without you all. Your posts have been central to our decision to by-pass the usual slow, often tortuous process of diagnosis, and come directly to Dr Norman. Thank you everyone. I know this may not be the magic cure but it is the first step in trying to get well. Jen

Hi jen and welcome to the new forum. It may take a little while for members to move across but do keep popping in to see who is around.

Do you live in the USA or have you made the journey to Tampa from elsewhere in the world ? as you know a few from here have recently been to see Dr Norman for their surgery.

Your story will be familiar to many so there will be lots for you to chat about on here especially after your surgery if you have any questions or worries, lets hope you don't!

So i hope you are resting up now in readiness for your big day on Tuesday, a mixture of nerves and excitement no doubt.

I will zip over to the other forum now and tell people they can sign up here and get posting.

Will chat more later and do post any questions you might want answering now, i can always put them on the old forum for you while this one is getting going.

All the best
Nelly

Hi Nelly. So good to get your welcome. Just managed to get wifi connection! I'm from the good 'ol U of K and live in the North West.

Hi again Jen

I had thought about flylng to Tampa if needs be but I seem to have found a very good surgeon over here so will be staying put for now.

Will you be having a post op holiday while there ? I'm sure some sunshine would go down well after the wet time we have had over here.

Do keep us posted on progress and I'm sure your experiences will be helpful to others considering the trip.

Nelly

Hi Jen,
I just wanted to say hello and wishing you all the best for your op on Tuesday. From all that I have read you are in excellent hands!
Sue in Lincs

Hi Jen

Welcome to our forum - at last! Sorry you couldn't join our old one but that was beyond our control and we are SO grateful to Mr and Mrs Admin for all their hard work in starting this one up.  Superstars, both ......!

If you have been following posts on the old forum Jen you might know my story, but I had my surgery at the Norman centre on 18th Feb, having had an unsuccessful surgery here in the UK last August.  Drs Norman and Tores did my surgery - who are your surgeons?

Good luck with your surgery on Tuesday, please give my best regards to Dr Norman, I'm guessing he will be doing your op as he likes to 'do' all the overseas patients.  He will know me as Lyn Smith.  Keep in touch and let us know how you are when you feel up to it.  Lovely weather in Tampa huh?

Jasmine x

Hi Jen, so glad you could join us all!

I too had surgery in Tampa. Mine was on November 14th. Dr. Lopez performed my surgery. If you happen to see him, please tell him I said hello. He will probably remember me. If you tell him my first name is Audrey, and my last name is the same as his wife's maiden name, I think he surely will remember. My last name is 12 letters long. It is not a common name. I was very surprised to learn his wife's maiden name was identical to mine. Oh, his wife is also from Pittsburgh here in the US, right where I am! How strange is that?

I'll be thinking of you on Tuesday. I remember how excited I was to finally be in Tampa after fighting with my doctors for so long to get that diagnosis! Good luck, and please keep us posted! We'll all be anxiously waiting to hear from you.

Audrey

Do you know what time you'll be going in on Tuesday?  The only real advice I have to give at this point:
1. Sestamibi scan is a little uncomfortable and boring.  It's only 20 minutes, so just come prepared with some stuff to think about during the scan.

2. When you first 'wake up', don't try and touch your neck.  I think it's everyone's first reaction.  As I was in recovery, everyone they wheeled back had to be told not to touch their necks (including me!)  It hurts at first but the pain drops pretty quickly.  

3. Look up the video "Tour of Parathyroid Center at Tampa General Hospital" on youtube. Dr Norman shows you how to drive up and find the place. It's not hard, but, it's nice to have it already visualized.

Well, Chris, I didn't mind the Sestamibi at all. After they took care of the power outage that delayed it for about 20 minutes, the rest was a snap. : )

And I have to say that touching my neck was the very last thing I had any urge to do after surgery! Not because it was painful, because I had hardly any pain at all. I just sure as heck did not want to touch a new wound, even though it was bandaged!

I do agree that it was very nice already knowing ahead of time exactly where to go once we were inside the center. When we walked into the first set of double doors at the front of the center, my sister started walking through the double set of doors. I corrected her and reminded her that Dr. Norman said you only go through 1 set of doors, then turn left. We had a good chuckle there at 5:00 a.m.! My sister has always been my guide throughout life. Oops! It was funny!

I would like to say not to be afraid to use your ice bag after surgery. I didn't bother for several hours. I didn't think I needed it, but once I tried it, I thoroughly appreciated it. It did feel awfully nice!

By the way, Chris, if that is your little girl in your pictures on Facebook, she is absolutely adorable!! : )

Audrey

I get neck pain very quickly and I had a minor cold so it was just building up in the back of my neck. I was also INSANELY WORRIED that I didn't have a tumor at all. My coping mechanism for this was to think of my life insurance policy. I was in a bad spot and my neck was uncomfortable. It was so awesome when Dr Politz rolled up and said I had the brightest tumor he'd ever seen. wooo

You were lucky, Chris. My scan was negative, so I had to wait til after surgery for proof of my tumors. Even though Dr. Lopez told me he knew there was at least 1 tumor in there because of my lab results, I would have felt better had SOMETHING shown up on the scan.   

By the way, how are you feeling?

Audrey

Wow I can't believe we are all here and now new members , I think we are missing tigerlily. Jen good luck on your surgery, keep us posted.

What is this disease like?? I couldn't log on to the forum, then hubby reminded me of how I had actually spelled my username!! Bingo! Here I am.

Oh wow!!! I can't tell you how GOOD it is to be in conversation with all you lovely folk from the old forum. I have been following all your stories avidly. My previous love of reading books seems to have gone out the window for the time being!!

Thanks for all the advice for tomorrow. I haven't watched the tour of getting to the Centre yet, but will do. Thanks too for the ice pack advice. I need to get one! Also, one question? Citracal? Where did you buy it? We've bought something similar but slightly lower calcium and Vit d in case I can't find it.

Hi Jen, you can get Citracal from any branch of Walgreens, that's where I got mine from.  Not sure whereabouts you're staying in Tampa but we stayed in the Hampton Inn & Suites in Ybor City and the receptionist gave us directions to the nearest Walgreens.  Good luck for tomorrow, be thinking of you.  What time do you have to be there?  Audrey and I both got the graveyard slot - 5.15am!

Brilliant! Thanks jasmine. Yes I've got the 5.15 slot too. Actually I was awake this morning so early that it should be ok. I'll probably zonk out once we get back here afterwards. We're staying at the Quality Inn and suites in the Fairgrounds district. Absolutely fine and the pool is warm! All tne recommended hotels were full! We'll get onto finding walgreens ...

Good luck for tomorrow Jen, hope it all goes well.

Look forward to an update when you feel able to post   

Nelly and admin man !

They give you an ice pack at the hospital. I didn't need one beyond that.

Hey Chris, I believe you got ice lollies (Popsicles) too?  I feel cheated, I didn't get one ......!  

Jen, you won't need to buy an ice pack, the parathyroid center will give you 1.

Yes, I was up around 3:00 the morning of my surgery, so that 5:15 time slot worked well for me. We actually arrived at the hospital a bit early at 5:00. It worked well, as we were the first ones there, so I was the first surgery of the day. Seems like we all got that early slot. Strange!

Audrey

Oh, sorry, I didn't notice that Chris already told you about the ice pack! Yes sir, MY brain is just fine!    I got a popsicle too. Jasmine, how did you not get 1?   

Audrey

Thanks folks for the advice on the ice pack. Just back from a visit to the harbour area. Got the Citracal! Had really nice lunch at Jacksons then walked to TGH and went up to the Centre itself. We'll be old stagers by tomorrow!! Heard Dr Lopez debriefing with a US husband whose wife had been squeezed in for today. Didn't see the pic of the tumour but it was large, emitting over 900 units of PTH. Same old story with endo delay, delay, wait and see until she got to the point where she was in danger of fracturing her femur!! Ah well . . .its uo to us to get the word out there when we can. Hubby loves boats, water, the sea so it won't be too much of a hardshio waiting in that nice area overlooking the harbour.

Trying to stay awake now though utterly dog-tired, as we want to close down early tonight if we can.

I'll post here as soon as I can, or hubby might even post. I'm not a great fan of popsicles but i might just love one tomorrow if I get offered one. We've both laughed till we've cried with some threads on the previous forum.. Thank you all for sharing so much and so freely. X

Sounds like you're all set to go, Jen! We'll all be praying for a quick, easy surgery and a quick, easy recovery. I'm sure all will go very smoothly, and just think how relieved you will be to be on the other side of this dreadful disease!

Yes, Tampa is a beautiful city. My sister and I decided we are going to go back some day just for a fun visit. Hopefully, no surgery next time!

I'm not a big fan of popsicles either, but it did taste awfully good that morning at the parathyroid center.    Enjoy!

Again, so glad to have you with us here!

Audrey

I got two popsicles. I would have kept asking for more until I got grape no grape no peace

Oh, no, Chris, cherry is the way to go!  
Well, you must have been an extra special patient to get 2! I guess they liked you better.   

Audrey

Well, now here's a thing....I got a bit hung up on the Popsicle thing, and the fact that I didn't get one, so I said to hubby "not fair, they all got Popsicles...." and he said "so did you, that's the first thing you said to me when they let me in to see you, that you feel OK and just had an ice lolly......." OK, so I take it back, seemingly I did get an ice lolly.....I just don't remember it......

Jen, it's 8am here in the UK (our clocks went forward an hour on Saturday so are you four or five hours behind now?) so I guess you'll just be getting up to go to Tampa General..... good luck, be thinking of you, post when you can.

Jasmine x