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Parathyroidectomy – any success stories?

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Parathyroidectomy – any success stories?

Post by bridggar on Mon Jun 30, 2014 3:04 pm

The internet is awash with folks trying to secure a diagnosis for their ailments and is therefore a minefield of misinformation. (and I count Dr Norman’s website amongst this!) I have a very simple question – can anyone post details of a success story following a parathyroidectomy? I appreciate many people may stop posting on internet forums once they’ve found nirvana – and I really don’t want to pee on anybody’s hope for a cure but I can’t seem to find anyone who can give a proper account of successfully going through the procedure and being completely cured.


 
Since my op in Feb 2014 my calcium is now normal but Vit D is low. I’ve had tingling, confusion, numbness and bone pain for 80% of the time since and I’m now taking Calcium & Vit D supplements to try to combat this with varying success.


 
I guess I’m just looking for some affirmation that this will eventually recede and I can get my life back.


 
Thanks in advance.

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Re: Parathyroidectomy – any success stories?

Post by Jasmine2 on Mon Jun 30, 2014 4:28 pm

Hi Brigitte

Can't speak personally as my levels have yet to return to normal following two PT surgeries, but I believe that Linney has been having similar problems to you since her second PT surgery earlier this year. I think she does dip in and out of the forum from time to time so I'm sure she wouldn't mind if you PM her.

Not sure if you're a member of the closed Facebook group but there are a LOT of success stories on there, but then they do have over 1000 members, mostly from the US but from all around the world, including some people here in the UK who are doing really well since their surgery. I dip into it occasionally but I much prefer our forum for the level of caring and support, the FB group always seems very clinical and very informative but I don't 'feel the love' if you know what I mean.

Jasmine x
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Re: Parathyroidectomy – any success stories?

Post by Tigerlily on Mon Jun 30, 2014 7:22 pm

I think Audrey has quite a bit of success to report, Brigitte, but I think she's busy with a family reunion this week - 4th July etc.

I'm sure once she picks up with the forum again she will post on her success for you.

I remember a Jan posting about her success with her op in Birmingham and Donna who went to Mr Sharma (and Dr Panalhoo) at St George's, Tooting.

Try putting some of these names in the search box top right and some of their posts might pop up.

You're right, though, that those who had successful surgeries do seem to have faded away from the forum somewhat - can't blame them really - probably don't wish to be reminded of all that they went through!!

Love from Tigerlily xx

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Re: Parathyroidectomy – any success stories?

Post by Brigitte0 on Mon Jun 30, 2014 8:44 pm

Jasmine and Tigerlily, just a heads up that bridggar and Brigitte0 might be two separate people  Embarassed  I wish I'd had my op, but alas my "fast track through the system" has come to a stop currently. I'm impressed you can both spell my name since at the moment I can't do that myself most of the time  Wink 

bridggar, I hope your symptoms improve so that you can banish HPT from memory! Did you have all your parathyroid glands checked during your op?

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Re: Parathyroidectomy – any success stories?

Post by Tigerlily on Mon Jun 30, 2014 9:16 pm

Ooops, Brigitte - well spotted, sorry about that - reply was for you briddgar - and hello there, Brigitte.

What's happening at the moment then? When you're ready - sounds like things have slowed a bit.

We're all ears when you want to post about it.

Love from Tigerlily xx

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Re: Parathyroidectomy – any success stories?

Post by Jasmine2 on Mon Jun 30, 2014 9:40 pm

Oops! Took my eye off the ball, so sorry! The annoying thing is I do actually know that you are two different people, and that you are pre-op Brigitte, but this by-passed my cognitive processes for some reason - well, we know the reason ..... deep sigh! So sorry, I'm very embarrassed .....and the most bizarre thing is that as I was typing 'Brigitte' it actually crossed my mind that this wasn't Brigitte and yet it didn't occur to me to change it. Bl**dy HPT brain grrrrr.... Apologies Brigitte and Briddgar! Hope the reply was helpful though.

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Re: Parathyroidectomy – any success stories?

Post by Kathi209 on Tue Jul 01, 2014 1:34 am

Hi Briddgar,

Sorry you are still feeling unwell. I am pre op so no first hand info. I know a lot of post op people still have some issues after surgery and it takes longer for them to feel better some feel great from day 1. Some take tums when the tingling starts even if there taking calcium supplements they say Tums work faster. Have you had you cal/pth checked lately. just to make sure thats not a problem. Hope that helps.          
                                                   Take care Kathi

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Re: Parathyroidectomy – any success stories?

Post by bridggar on Wed Jul 02, 2014 10:43 am

So I found a rather interesting old forum (apologies if you've all seen it before) which gives some insight into the journeys some have gone through and a few things strike me:-

1) For some, it's a 1+ year recovery process (this makes me feel better) and it's certainly not a linier process
2) Vit D seems to be a common theme which takes a while to take effect
3) Some are reporting weight gain post operation

I've since up'd my dose of Vit D to 50 microgrammes (rather than the 25 I was taking) with the Vitabiotics Osteocare suppliments and although it's very early and I may well be imagining it, I seem to feel a bit better.
I've noticed a marked increase in weight over the last few months (I thought it was beer!) but I'm now wondering if there is a metabolism inbalance whilst the body adjusts itself?

Link to old forum:-
http://www.steadyhealth.com/parathyroidectomy_side_effects_t84147.html?page=1

Hopefully we can all record our continued recovery post op for future reference - I can't see there being many case studies being organised elsewhere!

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Re: Parathyroidectomy – any success stories?

Post by Little Audrey on Wed Jul 02, 2014 8:17 pm

Well, I guess you could say my surgery was a success, but my recovery is far from over.

My IBS symptoms disappeared the day of surgery. I still have a day here or there when it will bother me, but it's NOTHING like it was before surgery, and it was nonstop before surgery.

My shin bones which, according to Dr. Norman, should be the first symptom to resolve, continued to ache for probably 5 months afterward. They haven't hurt at all now for 2 months. Well, some days I might get a faint twinge of pain, but it's gone in a flash.

My hair is no longer falling out at an alarming rate. It continued falling out for a couple of months after surgery, but from the looks of new hair growth that I noticed at 2 months post-op, it had started to grow back immediately after surgery, even though more hair continued to fall out. It all normalized shortly after.

My heels and feet aren't quite as painful as they were for the year preceding surgery. I no longer walk with crutches, and most of the time I walk without even a limp. However, standing still is still VERY painful, and I'm always looking for a chair in those cases.

I no longer have terrible issues with my sinuses. My nose used to run nonstop for maybe a week at a time, take a couple of week's break, and then start up again. And I don't mean it would run, and I would wipe it, and it would be good for a few minutes. I mean, it ran NONSTOP like a faucet for about a week straight. I couldn't leave the house when this happened because there was no way I could walk around with a tissue plastered to my face. It would pour out the instant I removed the tissue.

My left eye is still very dry most mornings. I can't open it for about 15 or 20 minutes because of this. My eyes still want to cross a lot, causing double vision. And my left eye has had floating, cloudy things in it for a few months now. This may be totally unrelated to HPT. I'm not sure at this point.

I still have trouble with acid reflux, and I still have to take medication for that issue.

I am still VERY exhausted all the time. Today I am so wiped out, I can't think straight, my head feels like it's buzzing, and I keep losing my balance. This is so embarrassing when I'm out somewhere. I was out shopping today, and it kept happening. I know people must think I'm drunk!

My upper arms and thighs are still stiff and sore. They have been this way for a little over 3-1/2 years now. This never stops, but for the past week, the arms seem to be feeling a bit better. The fingers of my left hand have been very stiff and sore also for the same amount of time. For the past week, they have been feeling great!

My wrists no longer hurt. That stopped about a month ago.

My thumb joints still ache some days. However, I did have arthroplasty surgery on the left one to correct the arthritis issue there, so I'm guessing at the age of 61-1/2, this might all be totally unrelated to HPT and more likely being caused from my age. I am wondering, though, why the left one is hurting again, since I did have that surgery to stop the pain. I am not sure if the results of that surgery were to last forever or not.

For some reason, my left knee has been killing me! Again, it could be arthritis, but it is not just the joint hurting. The tendons behind my knee are very painful and stiff, and they sort of pull and click when I stand or turn. I do have popliteal cysts behind each knee due to arthritis.

My left hip still aches some days. The right one seems to be ok now.

My little toe joints will still hurt some days, but it's not constant like it was for the past year or so.

The twitching I've had in all 4 eyelids for a little over 3-1/2 years has subsided. Before surgery, at all times I would have at least 1 eyelid twitching nonstop. They would twitch for several months and take a little break. At time, all 4 lids would be twitching at once. After surgery they continued to twitch. At 4 months post-op, I started twitching all over my body nonstop! This was VERY scary and very annoying! This lasted for 3-1/2 months. A couple of weeks ago, the twitches started letting up. I no longer have them constantly in my eyelids or all over my face. I still might get a few in 1 eyelid or another some days, but it's not constant. The twitches in my upper arms, thighs, and around my knees are no longer constant either. Most days I don't have any in those locations. The twitches in the backs and on the sides of the lower portions of both legs are still pretty much nonstop. The left leg is worse than the right. Most times I don't even notice them in the right anymore, and the ones I do feel are not nearly as intense as they were for a few months. I was having a lot of trouble with what I will describe as something shorting out in my arms and legs, causing them to jerk. That sill happens occasionally, but doesn't seem to be as bad as it was. Again, not sure if this is all related to HPT or the recovery. I will be seeing a neurologist for the fist time tomorrow. I am looking forward to discussing all of this with him.

The extreme muscle weakness that I have been experiencing for a few months also has also greatly subsided. My arms were so weak, it was hard for me to even type. The weakness was to such a degree, it would make me nauseous. My legs were so weak, it felt like I was going to collapse when I stood and walked. Going down stairs was AWFUL! I was very afraid my legs were going to give out on me, and I was going to tumble down the steps. I would like to say here that I have always had VERY strong, healthy muscles. I have worked out my entire life to keep my muscles strong. Having them this weak was terrifying!! My arms and legs are still weak, but not nearly as weak as they were. Most of the time I don't even think about it now. I'm not sure if this is normal for HPT recovery or if something else is going on. Hopefully, the neurologist can shed some light on all of this.

So, I am not sure if you can say my parathyroid surgery was a success. I think it was. I think I have just had a very rough recovery, and I'm also thinking there might be more to my symptoms than just HPT. I am very grateful for all of the symptoms which have resolved.

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Re: Parathyroidectomy – any success stories?

Post by Little Audrey on Thu Jul 03, 2014 2:47 am

Forgot to mention that I still can't sleep for more than 5 hours a night, but I no longer wake up every hour and struggle to get back to sleep. Now I can sleep for 3 hours, wake up, and go back to sleep for 2 more hours.

Also, my neck is still very stiff and painful. It has been like this for a little over 3-1/2 years also.

Gee, I guess I forgot several things. I still have trouble with my head hurting at times. It doesn't hurt as badly, and it doesn't hurt as long now. It might hurt every several days for maybe an hour or so. Not bad at all compared to how it was before surgery.

I think that's it. I'll probably think of something else as soon as I finish this.  Laughing 

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Re: Parathyroidectomy – any success stories?

Post by Tigerlily on Thu Jul 03, 2014 8:23 am

Hi Audrey

Have you ever had an MRI scan of your head for all this pain?

Just a stray thought!

Love from Tigerlily xx

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Re: Parathyroidectomy – any success stories?

Post by Little Audrey on Thu Jul 03, 2014 10:18 am

Tigerlily, that sounded funny when I first read it. I thought maybe you were saying I needed my head examined. As in, maybe I'm nuts, and it's all in my head! I'm still laughing here.  Laughing 

To answer your question, I did have an MRI to check for pituitary issues a few years ago. I can't remember if my PA, my endo, or my internist ordered it. I have been thinking maybe it's time for another. I wouldn't be surprised if the neurologist suggests one at my appointment today. Thanks for the suggestion.

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