Just a little update as I am now 3 weeks post op.
I am still getting the odd tingles, muscle cramps and twitches but they are easing off a bit now. The weirdest ones are my stomach muscles just under my ribs suddenly cramp up which always makes me jump!
It is hard to guess how much energy I have as it still varies. Yesterday I went for lunch with a friend and spent and hour wandering around a garden centre (I know, I’m getting old and a day out to a garden centre is now suddenly really appealing) before eating and then then still felt like I could have done some more. My friend was very sensible and told me to take it easy and not to push it so we came home for a cuppa and a natter instead.
The strange novelty of being able to walk normally has not worn off. I have an urge to strut around and nudge other shoppers and say “Hey, look at me walk! See no stick! See no waddle!” - I manage to restrain myself. My friend suddenly said “My god, I never realised you were that much taller than me!” so it’s not just in my head that I seem to have grown an inch! No longer hunched over, no longer feeling like all my muscles are made of mush means I can stand upright naturally.
The last two days have been an up and a down. On the downside I had one bad day when I was getting lots of low calcium symptoms and felt a bit foggy again which was scary but it passed – I just need to trust my body is trying to adjust and this is going to take time. On the up side though, it has become clear that something has changed a great deal with my eyesight. I realised quite early on that it has improved and everything was much clearer but over the last two days seeing things further away from me has been quite different. I can only describe it as if you had a rotten old television for ages where the picture was ok but a bit rough and then you suddenly buy a top of the range plasma high definition model with bells on…
I knew I was having trouble focusing on things, especially if they were moving, but wondered how much was down to my cataracts (if I close my left eye I still have double vision in my right caused by a split cataract) Suddenly I am amazed to see everything has become very 3D again and it is making me wander around gazing at things (and probably looking a bit simple). I noticed it first in my garden while hanging out the washing – the garden just looked incredibly beautiful and, well just very 3D if that makes any sense. I’m guessing my eye muscles are working much better now and are able to focus, in fact my friend yesterday commented on how I was actually looking her in the eyes when I was talking to her rather than just kind of gazing at her (obviously I have been wandering around with a vacant glazed stare for the last three years folks).
My sense of smell seems to be coming back, it never completely went but was very subdued - boiling peas mad me notice that, wow it made such a strong scent suddenly. I am so less irritable too, times when I KNOW I would have nagged the boys or got grumpy with someone come and pass with me just not feeling like that at all – is that just the stress lifting or is it true that, as I have read, that parathyroid disease actually affects your personality?
It is a bit overwhelming to be honest and I am sure partly it is because my hormones will be bouncing around too at the moment but I keep getting a little emotional. I have spent so long feeling like the life was being sucked out of me that to have these moments of clarity of thought and vision, to have the calmer me and the energy returning is too good to believe. Still early days, still tiring after a while, still problems with low calcium, still no guarantees this is going to work but today I am feeling good.
I am going to drive everybody insane (“Hey look, I can walk!’” “Wow, have you noticed how 3D everything is!” ” I don’t feel utterly exhausted and like I am dying today!”) but for now they will just have to put up with me. I just hope I never forget this feeling, never forget how the simpler things in life we so easily take for granted and how good it feel just to feel simply ‘ok’.
Soooooooooooo excited for you hon, all sounding so good even the bad days xxx Onwards and upwards lass xxxAnn
Hi foggy,
Great to hear from you again. It really is making me feel positive about how I will feel after my op. I’m excited about seeing my consultant as this should be the final hurdle but also a bit apprehensive incase he tells me things might be complicated. I can’t see how though but I suppose we all have a little bit of doubt in our minds when the light seems to be appearing at the end of the tunnel.
Have you found that you have gained a little bit more confidence now? I was thinking about going a bike ride tonight but I talked myself out of it as I wasn’t sure I could make it round the 11mile route I normally do. I’m gald I didn’t because after changing the bed, putting some washing out and dusting the bedroom after a day at work (although I’ve mainly been at my desk today) I have jelly legs, feet ache and am exhausted. I’ve even had to have 2 days off work this week because of muscle pain and nausea. I felt awful.
How have the boys reacted? Have they noticed a difference in you?
Did you really suffer with low moods before the op? I was wondering if the depressed feeling has disappeared. How often are they checking your calcium levels?
Keep telling us how you are. You’ve made me feel very positive about the outcome after a parathyrodectomy. I’m so glad you started this blog. I felt so alone before I found this. I even got my hubby to read your post ‘A catious wow’ just so he could see that things will improve.
Take care and enjoy life. xxx
Hi KAB,
How are you feeling at the moment? I know you were finding it a struggle a few weeks back and felt you were quite depressed.
I am starting to be confident going out but I still can’t quite guess how much energy I will have yet so I am not venturing too far. It is terrible to not know if you are physically going to manage to do what seems to most people a quite simple task, isn’t it? As it varies so much it is always hard to guess as well, that is bound to knock your confidence somewhat.
Be gentle on yourself and realise that sometime you just can’t do the bike ride or go to work that day, it’s not you but this unpredictable fluctuation of calcium in your body. I came to accept after a while that I could only do what my body was up to each day, I never committed to anything and if I felt bad then I just rested and gave my body time to rebalance. I really think you need to think of this as something that is happening to your body that is out of your control for now and not feel that it is somehow you that is ‘not managing things’. You are doing everything you can to get the right medical treatment for what is quite clearly not a commonly understood condition for many doctors…just keep doing what you are doing and you will get fixed.
I felt low before the op, just from the illness itself, the worry of the op and from sheer physical exhaustion. I feel so, so much happier in myself now, I am enjoying seeing things gradually improving, I have loads more energy and mainly because I just don’t feel permanently crap from dusk to dawn!
People are commenting on happy I look and sound, like the old me is coming back and I can feel it too. Can’t wait until you are saying the same KAB!! xx
Hey Foggy,
I was starting to feel better in myself and my depression seemed to have lift but as soon I was ill again,at the beginning of the week, it was like a big black cloud was hanging over me. I have had to conclude that it must be my condition and after it is sorted I shouldn;t have these feelings again.
I’m having a bit of a bad week and anything is setting off my muscle pain and bone pain. I had a really bad headache from Wednesday but it seems to have gone this morning. I had a dream last night that I went to see my consultant but when I got there I had taken loads of pieces of paper with me about PHPT but had forgotten to take my list of questions. In my dream I couldn’t remember what questions I wanted to ask him and there was a clock that was counting down what time I had left with him. I had also forgotten to take my private healthcare details so he couldn’t book me in for an operation as I didn’t have the papers. It was one of those anxiety dreams. I hope I don’t have too many of those.
When do you go back to see your consultant again?
I try and do all the things I do and find it hard to just except I can’t do that as some people around me (mainly work colleagues) don’t believe how just having raised calcium levels can make me feel so bad. They aren’t interested in finding out or even care anyway. So being surrounded for 9 hrs who don’t believe that you could be fine when you arrive in the morning but be in agony and exhausted by 12pm is very upsetting. I then started wondering if it is all in my head , all of these symptoms. Am I only noticong them because I have read about them on the internet so then I push myself and the symptoms are very real.
sometimes all I need is a hug but people seem to be too busy nower days for hugging (also there’s probably a policy at work that prevents people from hugging)!
I know I shouldn’t care what people think but I’m sure you’ve had the experience yourself where people don’t believe you.
Anyway, what are you up to this weekend? Skate boarding??:-)
Take care. xxxxx
KAB
Hey Foggy,
Just a quick update. I didn’t even get to see my consultant today. It was one of his colleagues. She was very nice and showed me my mibi scan (perfect example if I do say so myself). She’s convinced that it is just 1 gland and I will only have a small incision. She even mentioned that they would use a glue rather than stiches, unless I misheard her and I would have a few stitches too.
I asked when My Consultant would be free to do my op so I could see if my private health care will pay for the op. She said she didn’t have access to his diary and so she would have to talk to him and then write to me.
So, apart from having my bloods done again for calcium, vit D and PTH (June’s result was 117 for PTH, what was yours?I presume it was quite high with all 4 being enlarged) and I’m going to be booked into ENT for a camera to look at my vocal chords thats that. I’m no futher forward. I’m so impatient. She said the NHS waiting list is 8-12wks at the moment. Just in time for Christmas then!
How are you at the moment?xxx
So pleased for you that things are looking up!
The improved eyesight will help no end with your work.
It’s funny how we all have how different capabilities isn’t it? I can manage 4 hrs of salsa dancing no problem – but I can’t, & never could, cycle more than half a mile. It would kill my knees!
We all have to listen to our own bodies – we do ask an awful lot of them! X
Hi there, havent seen any posts for a while and wondered how you were feeling?
Audrey
Ditto! Hope you’re well and happy Foggy. xx
Yeah, long time no hear. How you doing?
Still thinking of you & hoping things are looking UP! X
Hello Foggy,
Sure you’re busy getting on with life! Good for you. Finally seen a surgeon and should be going under the knife in about 8 weeks time.
Hi Ashleigh – Hope you’re reading this … I said hello to Mr. McLaren for you last week when I saw him, as soon as I mentioned your cat he knew who you were.
All the best to everyone.
Simon
Hi Foggy,
Meant to post last week. How are you. I hope you are feeling fantastic. I have a date for surgery…25th November (hopefully the 25th of a month is a good date).
Write soon, we’re all eager to know how you are.
KAB xx
KAB
All the very best for tomorow – hope all is successful for you! x
Claire
How you doing? X
Ashleigh x
Thanks Ashleigh. I’m hoping I feel like a brand new me in a few weeks time. Fingers crossedxx
Hope you’re ok Foggy. xx
Wondering how you are Claire???
- and how did your op go KAB???
Would love to hear from either/both of you.
Ashleigh xx
Hi Ashleigh,
My op went well and the scar is healing nicely. However, I don’t feel completely cured. I still have bone pain in my feet and I still have alot of muscle pain in my neck, shoulders and upper arms. Its only been 10days since the op and so I maybe expecting too much. The brain fog has certainly cleared and I have less lower back pain and more energy so I’m wondering if my muscle pain is due to something else, although blood tests I had done a year ago said everything else was ok.
I’m currently posting on a blog that a guy called Simon has started. He’s going to have surgery on 4th Jan. He uses wordpress for his blog and the blog is called Do I have Primary Hyperparathyroidism?. We could prob do with you advice as to how long it is before you started to feel well after your op.
Like you, I hope foggy is well.
How are you doing?
Thanks for thinking of me. xxx
KAB, just to say I remember visiting my gp for tests 3 months on from the op as I was still experiencing bone pain. However, a year on and I actually dont recall when I last felt anywhere near that level of discomfort. I hope you feel better soon. X
Hi Ashleigh,
I def feel there’s something a bit wrong as its only my left shoulder and the burning sensation goes all the way to the top of my skull sometimes. I’m going to my GP tomorrow and hope he will take me seriously. I’m still getting bone pain in my feet but thats more bareable than my shoulder. I can just be sat in the settee and my shoudler, upper arm ,neck and back of my head will start burning (like a hot poker has been shoved into my shoulder.
I’m sure my GP will send me away but I need to try cos, apart from that, I feel great. I want to do loads of stuff but my shoulder is still holding me back.
Hope you are ok and prepared for Christmas.
Karen.
xxx
Hello Foggy,
I’m now 3 days post op and feeling great, still room and time for improvement but I’m feeling 90% better the other 10% will no doubt come in time. 2 Days after surgery I power-walked down to the GP’s surgery to hand my discharge notes in and power-walked back up the hill, no muscle pain and no weakness! My legs feel like they belong to me now. The old brain kicked back in a few minutes after the operation. No brain fog, no hunting for words, I now have a train of thought!
So great to be in the post-parathyroidectomy club!
Once again, I’d like to thank you for your support and kind words and for the encouragement to set-up my own Primary Hyperparathyroidism blog – it’s been great therapy and I’ve been able to help other sufferers in the process.
I know you haven’t updated your blog for a while and we all know that that’s because you’re happily busy with your new healthy life.
I wish you all the best for the future!
Simon xxx
Thanks for your input. Very helpful. I am considering surgery with Dr. Norman and was really turned off by some of the comments. Began to wonder if the “positive” postings were plants. Your post was very insightful.
It is good to hear from uncensored patients who have gone through the process. I have you beat by a few years, I’m 60 and don’t expect to have more than 1 Parathyroid involved. I can’t imagine what it’s like recovering with small children. I am very involved with my grands, but can step out if need be. God Bless you. I pray that you continue to have a full recover