Post-op 5 months. Not what I expected, but there's hope!

First topic message reminder :

Ok, I am finally here to update everyone on my progress 5 months after my surgery.   It has been a very rough 5 months, but I am still hanging in there and praying things will still get better.    A couple of symptoms resolved the day of surgery, others resolved afterward, and some still remain.    I really thought after those 2 tumors were removed, I would be feeling great.   That hasn't happened.

My labs since surgery have revealed a calcium of 10.2 with a PTH of 26.8; calcium of 10.0 with a PTH of 38.0; and a calcium of 10.2 with a PTH of 31.7.    I'm wanting with all my heart to feel I have been cured of this disease, but if Dr. Norman is right in saying adults don't live with calcium in the 10s, something is still wrong here.   My PTH is now half of what it was before surgery, when my calcium was at these same levels, so I hope all is well, but I still wish my calcium wasn't in the 10s!

Before I go any further here, I guess I will finally let you all know the good news I was speaking of yesterday.    The 7-month non-stop twitching of my right upper eyelid has FINALLY stopped!!!!    I also have been having twitching in all other eyelids and all over my face all day long.    At any point of the day, something would be twitching along with the right upper eyelid.    Those facial twitches were also completely gone for 2 days.   Yesterday they started again, but not nearly as frequently.    This is VERY big for me!   I was starting to imagine I had all sorts of diseases due to these twitches.    Now there is hope that SOMETHING is going right in my life!      I still have the intermittent twitches in my upper arms and thighs and nonstop twitches in both lower legs, but since the eyelid and facial twitches have resolved the way they have, at least now I can hope the others will be gone at some point also.       I do have a bit of a concern with this latest improvement though.    I had increased my thyroid medication several days ago.   I am wondering if that might be why the twitches subsided.    The reason I am concerned about this, is because when I increased the thyroid meds, my eyeballs started aching.    This happened once before when I tried to increase the dosage.    So I had to cut back to my regular dosage.    I am hoping it wasn't the extra thyroid medication that caused the twitches to stop, because if that's the case, they might come back now.  : (    

Now I will go through my symptoms and explain where I am with each:

The first symptom to go after surgery was the IBS.  The day after surgery, that was GONE, and that is a biggie for me!    I have suffered with this for about 33 years.

Next to go was the unrelenting running of my nose!    For about a year before surgery, my nose would pour nonstop for several days to a week or more, and I do mean POUR!   I couldn't leave the house when this would happen.    I also had extremely congested sinuses, so bad my teeth would ache.    My ENT doctor suspected the HPT as the cause for all of this.  She told me she had seen some very strange symptoms caused by this disease.    I think she was right on the money, because it was also gone within a couple of days after surgery.

My head had hurt every day to some degree for 3-1/2 straight years.    After surgery it hurt terribly for a couple of months.   It still hurts now, but it's not as painful, and it's not constant.  

I had a lot of trouble for a few years before surgery with an extremely dry left eye upon awakening every morning. It felt as if the eyelid was stuck to the eyeball.  I couldn't open it for about 15 or 20 minutes.     It is no longer like this every morning.   Most mornings I have no trouble at all, and the mornings it is dry, it is not as dry for as long.

My ears had been clogged up for a couple of years, and I'm guessing that is related to all of the added congestion of my head.   My ears are now clear.   I also have had trouble for a few years with my ear canals itching intensely and peeling.   This problem persists.

My neck pain has been 1 of the most painful symptoms.    For 3-1/2 years my neck has been VERY stiff and VERY sore.    At times it will cramp up very hard and stay that way for a couple of months before it will let up.    It will wait a little while and then repeat.    It is very painful to turn my head to either side.   It seems this will be 1 of the last symptoms to resolve.

My shoulders and entire back have been cramping very hard for 3-1/2 years also.     When they do cramp their hardest, it is very painful.  This will last for a few months, and then it will let up some.    I also would get very sharp cramps in my sides every time I would reach for something.    For a couple of weeks now, the severe cramping has stopped.    My back still cramps up when I sit to put on my makeup or when I stand for more than a few minutes, but it's much better than it was!

My upper arms, thighs, and fingers of my left hand have all been very stiff and painful for 3-1/2 years.    My arms and thighs are still very painful, but the fingers will have some good days now.

I had a lot of arthritic-type pain in my thumbs and wrists for a couple of years before parathyroid surgery.    This stopped completely since, except for the arthritis pain in my right thumb, but a few days ago, it all started again.   I think some of the pain in the right thumb is due to aging.     Twelve years ago I did have arthroplasty surgery on my left thumb.   I was hoping that pain was gone for good after that surgery.    I am very disappointed that I am having pain there again.    I guess time will tell if I need more surgery for this problem or it it is being caused from the HPT.

Another VERY painful symptom I've been dealing with is the plantar fasciitis.   I also have severe burning, throbbing pain in the big joints of both little toes.   And I can't forget the pain on the bottoms of my feet.  It feels like I'm walking on golf balls most of the time.    This all started exactly a year ago, and it is still going strong!   Although, I am now able to walk without crutches, so I guess I'm a little better off than I was.   I still have to limp when I walk, but I have noticed a few times I was not limping at all, so hopefully this will continue to improve.   Standing is much harder than walking, even though walking really hurts.  I still can't stand for more than a couple of minutes without needing to find a place to sit down.

My shins and forearms ached a lot before surgery.    The forearms have stopped, and many days the shins don't hurt at all, but they still do hurt a little some days.

The acid reflux is finally improving!     I thought that would never stop!   I was hoping immediately after surgery, when the calcium was supposed to drop, this symptom would resolve.    Since my calcium didn't really drop all that much, I thought it was going to last forever, but it is finally calming down.   I stopped taking all proton pump inhibitors a few months ago when I learned they could cause muscle cramps.   Muscle cramping has been 1 of my worst symptoms, and I didn't want to add to that problem!      I now take Gaviscon on the days that I might get some burning.   Most days I don't take anything.   For several months after surgery, I would have severe burning every time I ate.  It didn't matter what I ate; I would still burn badly.    That doesn't happen anymore.  

My hair had been falling out badly for about a year before surgery.   It continued to fall out for about a month after surgery, and then it stopped.   However, from the looks of the new hair growth after surgery, it looks like the majority of it started to grow back in immediately after surgery.   I know that doesn't make much sense, but my body never makes sense!    

I had a lot of trouble with ocular migraines before surgery.   The week before surgery, I was having 1 of these things every day.   The day before I left for Tampa, I had 2 of them!    During the 5 months since surgery, I have only had 1.     Quite an improvement!!

My hips and knees used to throb at night when I would try to sleep.   I know, that makes no sense either.    They would ache so badly, I wouldn't be able to sleep.   That is all gone.

For a few years before surgery, I had a lot of trouble with hot flashes.  Yes, you could probably blame some of those on menopause, but I was having a hot flash every 20 or 30 minutes all day and all night long!!     That is 1 heck of a menopause, wouldn't you say?!!     After surgery these greatly diminished.   I now have maybe 1 or 2 most days.  

I'm still not sleeping normally, but I am no longer waking up every darned hour all night long!    Since surgery I have slept for 5 hours straight once and 4 hours straight maybe half a dozen times, but most nights I sleep for 2 or 3 hours at a time.   Still only sleeping about 5 hours total a night, which I am hoping will improve soon, but, hey, 2 or 3 hours at a time is MUCH better than waking up every hour, so I guess I will survive!

My weight is finally starting to come off.  I don't know if this was HPT related or not, but before surgery no matter what I did, the weight just wouldn't budge!    I don't know if this will continue or not, but for a few pounds have recently vanished.

I think this pretty much covers where I am 5 months after surgery.      If I get a chance today I will take a picture of my scar and post that too.   It is barely noticeable now.    The big golf ball-sized lump is completely gone.  That took a few months to go away.   I know they say it is normal to have this bump after surgery and that it will go away in time, but when it's on YOUR neck, I guess it's normal to think it just might not.    It does!  

So even though my journey is not over yet, I am better off than I was before surgery, and if I know if I can keep marching, I will eventually reach my goal of good health again!     And I WILL keep marching!!

Audrey

Chins up, Audrey - hope it all goes better than you expect.

Love from Tigerlily xx

It might even be a genetic problem:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847765/

Do any siblings or children have the same thing?

Love Tigerlily xxxx

Chins up, Audrey - hope it goes better than you expect.

It might be a genetic problem:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847765/

Do any siblings or children have the same thing?

Love from Tigerlilyxxxx

Hi All 
Audrey good luck with your appt hope you get some answers.
Tigerlily how subtle is your medic !!!! good job you are a strong lady otherwise you could have worried yourself to death  
The only time I've had anything similar was a recall on a smear I had done just after my Daughter was born. I got emergency phone call to come in, he explained that it had shown up pre-cancerous cells and I would need to have work done to remove them. then he proceeded to tell me that I probably wouldn't die of it but some people its too late for them !!!! My Mum had died of cancer 3 months earlier, what an idiot, I did write and complain when I'd got everything sorted !
Jasmine yes it was a bit scary I didn't know boilers could do that, Its horrible when you can smell something worrying and no-one else can, I'm like that with gas after we had a leak in the road outside the house. I kept driving everyone mad sniffing for another one every time I went out side.
I really hate roller coasters and I want to get off this one now.
I have my 2-3 hr blood test tomorrow drinking Glucose gloop, it apparently is very good at making you gag        so I shall be looking forward to that  
Amanda xxxx

Thanks, Amanda - my copy of her letter to my GP has just arrived.

She's shot herself in the foot again (how many times do these people have to do it before they realise) by saying that my biochemistry "has now normalised" as she is talking about a serum calcium of 2.43 with a PTH from the same blood draw of 5.94. But of course she never takes serum calcium into account, only adjusted calcium. My adjusted calcium is always lower than the serum because my albumin is always high (42 this time). And the PTH is of course "within range" at 5.94 because the Addenbrookes' range is 1.48-7.63.

So she sees a Ca (adj) of 2.36 (range 2.1-2.5) as normal, and a within-range PTH of 5.94 (range 1.48-7.63) and this is all normal to her.

The main problem here is that she is the Dean/head teacher at the Cambridge Medical School, so is passing on this error to medical students!!  As I said, I'll deal with her later....

That was so insensitive of your medic, too, Amanda. They have no idea really, so they?

Good luck with the Glucose test, Amanda. The cat's just thrown up here as I wrote that - we call her Upsy Daisy!

Love from Tigerlily xxxx           

Hi Tigerlily
I maybe doing the same tomorrow............hair ball    
A xxxx

Hi Audrey
 
Glad you are see a neuro hope he can get to the bottom of it. My mother in law tried Lyica for her neuropathy and after 5 days on that she threw the pills in the garbage. She felt very sick taking them. She said she still had pins and needle feeling in her hand and arms while taking it. Hope you feel better soon. Let us know what the uro said.

Amanda sorry about the boiler, I so glad it didn't burn your house.
 
                                                Take care Kathi

Ok, I'm back from my appointment, and I am very happy to say it went MUCH better than i expected!

First, I would like to say that there seems to be a lot of strange brain activity going on here, and I'd like to add to that.   Actually, I guess this is a bit psychic.  I had to fill up my car with gas before I left for my appointment this morning.   There is a gentleman there who has been pumping my gas for several years.  I think he's around 70 years old. Last year this poor man became ill and had a 28-pound tumor removed from his mid-section.   He had a kidney removed, part of his liver, part of a lung, his spleen, part of his intestines, and I can't remember what all.   They told him they thought they got all of the cancer.   They also told him not many people who go through that survive.    He was back working at the gas station as of a couple of months ago.    He is truly amazing!!   Well, yesterday when I started thinking about stopping at the station today, I started having very strong thoughts about him (and I hate to say this!) dying.   I thought how awful it would be if someday when I went over there, the owner would have to deliver the horrible news to me.   I was thinking how awful that would be.   There was no real reason for me to be thinking this since he was given a clean bill of health several months ago.   So today when I pulled up to get the gas, this man came over to the car to take care of that for me.    He told me I was rather early today.   I told him I had a doctor's appointment.   He told me he also has an appointment next Friday.   I asked if it was just a checkup.   I'm always asking about his health and asking him how he's doing.    He told me it is not a checkup.   His latest tests have revealed more cancer in his liver, the large muscle of his side, and several other places.   The doctors told him they are going to try something very dangerous, because for some reason he is unable to receive regular chemo for this.    That is why they removed so much from his insides the first time.    He said the doctor told him this new chemo is called hot chemo, and it will either cure him or kill him.    Oh, my gosh!   The poor man is obviously not doing well at all, and this is his last hope of a cure and survival.  I am afraid it doesn't look good.   I had never really had to deal with cancer or cancer treatments, so I was not aware of this treatment.   I just checked it out online.    It's very interesting, and I sure hope it works.  I would appreciate all the prayers you all might pass along.  

I am having a real problem with people dying lately.  I had gotten on Ancestry.com a few years ago.   I found a tree there which I was very interested in.   This person had something in his tree that was relevant to my family.   I contacted him.   It turned out he was a distant cousin on my mother's side of the family.  He was 10 days younger than my mother.    He and I started "talking."   I had mentioned that I was going through this crap with HPT.   He knew I was feeling very low very often.   He started sending me cute, little notes to cheer me up and encourage me to go on.   He never complained about any health issues himself.  He just kept telling me he was just thrilled to wake up every morning and still be here.   He and I started playing Words With Friends on Facebook.   A couple of weeks ago he stopped making any moves.   That was not like him at all.  After a week or so, I contacted his son.  He said he was sick but was hoping to be back on the computer soon.   He died three days later.    So very sad.  

I hope my gas station friend is able to pull through his ordeal, but it's going to be rough! I'm tired of losing people.

Ok, now for my appointment today.    It was not what I expected.   At my last appointment, my urologist was very terse and had no time at all to listen to anything I had to say or answer any questions I wanted to ask.    Because of my frequent UTIs, she told me I needed to start taking that darned daily antibiotic and using estrogen cream.  I told her I wasn't comfortable taking an antibiotic every day OR using that cream!   She was clearly upset that I was not willing to jump at her suggestion.   I just needed more time to discuss all of this with someone and determine if that really was the best solution for me.    Today I did not see the doctor.  I saw her PA.   She was WONDERFUL!   She told me they did not expect me to do ANYTHING I was uncomfortable with.   I told her I have contacted the owner of a health store, and she is shipping me a few more natural products to try.   I thought the PA was going to scold me for going outside of their urology practice looking for help.  She didn't.  She smiled and told me she understood perfectly why I was thinking the way I was and why I wanted to try all of the options possible.   Wow!   This really was not what I was expecting!  

I asked the PA about the advantages of taking a daily antibiotic as opposed to just taking the stronger antibiotic when an infection occurred.  I pretty much knew that answer myself, but wanted to hear her point of view.  

I talked to her about HPT and about my recovery.  I mentioned the muscle twitches and the muscle weakness, and I told her I recently saw a neurologist who thinks it is all being caused from HPT recovery, but that he is running some tests to be sure.   She agreed with that.   I told her I had heard elevated calcium irritates all mucous membranes of the body, and I asked her if she thought there was any chance my elevated calcium is what has been irritating my bladder for the past 13 years, causing all of my UTIs, since an irritated bladder is much more prone to infection.    She agreed with me that I probably had HPT for at least the past 13 years, but didn't think it would have anything to do with the UTIs.     I appreciated her input, but I don't dismiss any theory just because a doctor disagrees with it.   If you recall, I had 3 doctors tell me there was no way I had HPT!    Two tumors later, I proved them all wrong.    I am not always right, but neither are they.  

So I left the office today feeling VERY relaxed and confident that the PA is more than willing to work WITH me to resolve the UTI problem.   I do not feel defeated and lost anymore.

Oh, by the way, my blood pressure today was 135/83.   This is not bad AT ALL for a doctor's appointment, and I was really dreading this one, so maybe my BP is finally starting to come down some.    That is still higher than I'd like it, of course, but I don't think there's any real problem.    Two weeks ago when I checked it here at home, it was 85/59.   I was actually starting to worry because it was so low.   I'll keep monitoring it here.

So, other than the fact that my good buddy at the gas station is going through a very rough time, and I am very worried about him, it was a good day for me.  Thank you all for your good wishes.   I have no doubt it was those wishes that brought on such a good appointment!!

Amanda, so sorry to hear about the boiler!     Sorry you are without a boiler for a while, but VERY happy there wasn't a terrible fire!

Yes, my brain gets jumbled often.   I can't seem to keep anything straight, and I can't seem to concentrate on anything or follow stories when someone is telling them.   Sometimes I'm afraid my family looks into my eyes and wonders if anybody is home, if you know what I mean!   I thought this was supposed to get better!   I really think there is something else going on causing my brain to still be out of whack!    I'm sure the lack of sleep alone is not helping with this!   How long can a person survive on 2-5 hours of sleep a night?    

Onward soldiers!

Audrey

Oh Audrey, I'm sorry about your gas man buddy and your distant cousin too. One of my oldest friend's dad recently died of prostate cancer and I was so upset because he was part of my life as a teenager and such a lovely man. Cancer hasn't touched my family much, but it affects so many of my friends' families. You feel like you're so lucky that you "only" have a "fixable" (haha) illness (plus everything else you gather alongside it). Sometimes it can be so difficult to be grateful. 

I can't sleep tonight and I'm so tired, so it will be difficult to concentrate tomorrow, but hey ho, that's normal, isn't it! 

I'm glad your urology appointment went well That must have given you a boost and cheered you up! I'm a great believer in giving an opportunity to natural products, though I'm also sure that a positive outlook and belief is important. Good luck with that, I really hope it will be positive. 

I know what you mean about people looking at you and wondering if anyone's in, because that happens to me a lot. My daughters look at me strangely all the time as they repeat something I've forgotten ten times or something they said half a moment ago. I frequently feel like I'm so out of sync with myself that I'm behind me, if you see what I mean and I feel as though I'm slurring my words because I can't get them out in the right order and have to concentrate so much. Very weird. I can't even spell my own name and I've been telling other people how to spell it all my life! Following things is difficult, especially threads in this forum, since I can't remember everyone's stories and get confused. 

Oh well, such is HPT (and other associated/non-associated diseases) apparently. Tomorrow is a new day and I haven't forgotten anything yet! 

Love and hugs 
Brigitte xx

Thanks for the kind words, Brigitte. So very much appreciated! Yes, today's appointment did give me a very much needed boost. I was starting to think that nothing was ever going to go right for me! You know that feeling? Yes, I'm sure everyone on here knows that darned feeling, unfortunately!

Yes, I am very upset about my gas station buddy. He is such a sweet, old guy. And you are right; I felt so silly that I was so upset about my recurrent UTIs, after hearing about his on-going, awful struggle. I even told him that. I didn't tell him I was struggling with UTIs; I just told him I felt like an idiot worrying about my problems, when he is dealing with so darned much. I'll keep praying for him and hope God hears.

I'm sorry you can't sleep tonight, but since it's only 7:30 here, I sure appreciate the company. If I have another bad night myself, I just might be on here bugging you in several hours.   

And I understand fully about your name issue. My last name is 12 letters long. I have had that name for 42-1/2 years. I have been spelling it since I was 15 and first met my husband. That was 46-1/2 years ago. Through the years, I always had trouble spelling it if I would stop in the middle and try to start it up again from that point. I know that sounds silly, but it's true! However, for a little over a year before my parathyroid surgery, when I would be writing it out, I would get to the middle and just totally forget the second half!!! It was so embarrassing! It got to where I would just scribble the second half and hope people would accept it. I guess they did. Nobody ever said anything. Ha, I started feeling like a REAL doctor!!!    I don't have any trouble now that I've had my surgery. Oh, I still might get it all jumbled up if I stop in the middle and try to pick it up again, but I can write the entire thing with no trouble at all now.

Well, it is fun talking to you, but I do hope you can get to sleep soon! It's no fun waking up in the morning when you've had no sleep. Actually, even when I think I sleep, I still wake up just as tired, so maybe it doesn't really matter. Nah, try to get some sleep.

Audrey