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

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

Hi Audrey,
Any forward progress is good news!  It must be such a relief to finally and hopefully see the back of very annoying symptoms, I have had the twitchy eyelid thing odd times in the past and can only imagine how annoying it must feel to have it constantly.  I know that you are still suffering a fair few symptoms but I do wonder as well if it is also thyroid related.  One of the first symptoms I had when I became hypo was plantar fasciitis, I had never heard of it before but went to GP  where we lived in London.  She advised me to get Scholl foot inserts which did not do anything to relieve the morning agony.  I also had an incredibly painful right eye which used to ache for weeks at a time.  A  year later we moved house and I could not stay awake in the afternoons, the skin on my palms were splitting all along the creases like paper cuts and I thought it was the ink from newspapers as had been packing china.  Turns out it was all thyroid related, once I started Thyroxine my foot pain went, my eye pain eased although I still get episodes now and then and use dry eye drops and my hands stopped cracking along the creases.  I know that plantar fasciitis is a drying out of the fascia that runs under the foot, which is why it is worst in the mornings after being in bed, the pain is the cracking and stretching open when we rise.  I suspect that being hypo has many more effects than just on our metabolism.  Throw into the mix menopause as well and no wonder our bodies just go into freefall.  I am so happy for you that at least a few of your symptoms are deciding to settle down, long may that continue.
Hugs from Sue

Hi Audrey
 I'm sooooooooooo happy for you, it's brilliant that you are finally seeing some improvements if anyone deserves this it's you. I hope you continue to see these improvements and finally get your life back.
Love Amanda xxxx

Audrey
Glad to hear some of your symptoms have gone away , that is a blessing. The twitching you have almost sounds like low calcium but you don't have that. When I told you about my sis in laws plantar fasciitis I didn't mention she is hypothyroid didn't think it could be related to that, till Lucycatnap mentioned it. I still hope you see a foot doc for it. You can still wear your flip flops if you want.  Hope more symptoms will just go away for you. Take care Kathi

Audrey I did google pseudogout, pretty interesting as it is caused by hyperP. It said caused by deposit of crystals called calcium pyrophosphate. I found it on web md, I hate to say it, I don't know how to post a link. When you have time check it out and see if it fits. Sorry my computer skills suck.

Keep on truckin', Audrey!

You've seen off a fair few of your old symptoms since the op. Great to get your full update.

Love from Tigerlily xx

Thank you all so much for the kind words of continued support. Without you all I could have never gotten as far as I have! You have kept my head above water for the past year. If not for you all, I'm afraid I just might have sunk!

I forgot to mention a symptom in my post. Hard to imagine since the list is already so long, but there was another 1. My eyes used to burn and water all the time. That was very annoying. That has also resolved completely.

Sue, thank you for sharing your thyroid issues with me. Yes, I have now heard of people with hyperparathyroidism complaining of plantar fasciitis that resolved after surgery, and I've also heard of people with hypothyroidism having the same problem. I just don't know what to think. Since I have trouble with my eyes aching when we increase the thyroid meds, I'm hoping it is not the thyroid causing the plantar fasciitis. I take Armour thyroid, which is supposed to be better for the body, but I am wondering if a different medication might work better for me. I guess I'll be discussing this with my PA soon. I am very happy you got some relief from your symptoms after starting Thyroxine. Relief from any symptoms is reason for celebrating!

Kathi, I have heard about HPT causing pseudogout. I have wondered if maybe that is what is going on with my toe joints. It would make perfect sense. I have checked it out, and it sounds very possible. Thank you for the suggestion. Yes, I know I should make an appointment with a podiatrist. I'm just so tired of appointments right now. I am thinking if these twitches in my arms, lower legs, thighs, don't decrease soon, I will probably have to see a neurologist. That will be another appointment! I have been having little twitches all over my face again for the past couple of hours too. Thank goodness, not the eyelids, but in my cheeks, chin, and around my mouth. If this is being caused from the thyroid, I don't know what I'm going to do if we can't find a medication to work more efficiently for me. I'm sure we'll figure it out eventually. Seems like for the past 3-1/2 years, all I do is research health issues!!! I guess this what it's like getting old?

Amanda and Tigerlily, thank you too! Yes, I am happy to at least have some symptoms resolved. I know everyone here is struggling terribly. We will march on together!

Audrey

Hi Audrey,  I've not been able to access this forum for a few days, but finally I'm here, and so pleased to catch up on your progress as I have been thinking of you.  Sounds like, even though it may take more than the magic 6 months, you'll get there in the end.  Very best wishes,
Rosie

Thanks, Rosie. Yes, it has been a long road, but at least it seems I am getting somewhere now. Still have quite a way to go, but I'll get there, darn it! It looks like I might be 1 of those people who will take at least a year to fully recover. This disease sure stinks, but it's smelling a bit better now!   

Audrey

Well, I've been trying for a couple of days here to post a picture of my scar, but so far I've been unsuccessful. Any help would be greatly appreciated.

Audrey

Hi Audrey
Good to read your post..... Dr Normans hares and tortoises analogy. You must be a tortoise but you are slowly improving and that's great news. Long may it continue.
Love Lynn  

Thanks, Lynn. Yep, It looks like I am the queen tortoise of recoveries!    Just happy SOMETHING is improving! All I wanted was some hope, and I guess now I do have some.

Audrey

Little Audrey wrote:Well, I've been trying for a couple of days here to post a picture of my scar, but so far I've been unsuccessful.   Any help would be greatly appreciated.  

Audrey

Ok I've figured it out, maybe, it's not very user friendly or intuitive or however you want to say it.
 On the top of this post or post reply box there are two buttons, "host an image" and "insert an image".
 First you have to set up an account with the host an image button. After you choose a image and click the host it button, you do your email and password.
You need to then go check your email and open the confirmation letter and go to the servimg.com site and log in with the email and password.  EDIT: It appears you will need to logout and maybe restart the browser or you'll get a password error
Click on My Images and the image will have a list of image sizes with a URL next to it. For some reason URL for the image wont post, but the one for the Thumbnail and Direct link does. The Direct link gives a full size pic, and the thumbnail is a wee tiny one.
Copy the URL you want and go back to the posting and click the Insert an image button. Paste the URL on the designated line and click the insert button at the bottom. It will put the image at your cursor location.

It seems you have to go through that process every time. The image site saves them but doesn't give the URL again, so you have to delete them and upload the images again every time you want to post it.

Well, yesterday when I attempted this, I did set up an account, but when I tried to log in, it kept telling me I had an incorrect email address or password. I think I just figured out the problem. I decided to have them send me a new password, and that was when I saw my mistake. I hadn't activated my password! I just did that, and I was able to log in. Now I'm going to try this again. I might wait til tomorrow though.

It looks like you're having fun with this! Nice pics!

Thank you VERY much for your help!!

Audrey

Ok, either I'm too tired tonight, I'm stupid, or there is something wrong with my computer, but I can't make this work!!! I have the picture saved in my account. I got to the part where my big picture came up, and it tells me my picture is ready for download. When I click on "Download," it tells me I need to install a new version of a video player. I click in "Install," and it asks me if I want to save the file. I click on "Save file," and nothing happens!! The little box at the bottom left of my screen is telling me to click on the top item in the download box, but there is no $%^#$%# download box!!! I am really getting ticked off here! Why the heck can't we just do this like we do in our emails? It is a heck of a lot simpler!! I think I'm done messing with this tonight. I'm too tired. I might try again tomorrow, or I just might give up!

Audrey

Ok, let's see if this works.   Hopefully, you will see a picture of my scar at 5 months post-op.    The scar is about an inch and a half below the second big neck wrinkle.  There is a tiny mole to the right of the scar as you look at the picture. The scar is 1-3/4" long.

Holy cow, that's one LARGE picture!!!   

Well, I didn't have to install anything after all to post pictures. I don't know why I kept being prompted to do so. It finally just worked. Took some figuring though! You are right Dieselwrangler, it is certainly not very user-friendly! Or I'm just a stupid user!   

Audrey

That's a fine bit of sewing he did there. If you hadn't pointed it out, I'm not sure I would have found it.

Yes, he did a very nice job, didn't he, Dieselwrangler? I wasn't so sure about it for a few months when I had that darned golf ball-size lump there, but once that went down it started to look pretty nice. There was also a little bump at 1 end of the incision, which I wasn't sure would go down, but it eventually went down too. I think it is still a tad raised, but barely noticeable. Now if I could just get rid of all the muscle and tendon pain and all the twitches, I could put this all behind me and move on with my life. Hopefully, that will all happen too.

Audrey

Audrey
That is a brilliant picture, you really can't see that scar at all. Fingers crossed that all the pain you have had for so long will finally go and you will feel like a new woman  
You deserve that so much.
Amanda xxxx

Thanks, Amanda. I am very pleased with it now. Actually, I didn't really care if the scar was visible. That lump was rather odd looking. I'm happy that's gone, but I wasn't really worried about the scar. It was a pleasant surprise when it started to fade though. All I keep thinking about is, what if I should need more surgery? Who knows what it will look like then? Would I get the big lump again? Would it go away again? Would the scar fade again? I guess I'll just deal with it when the time comes, if it comes. I'm ok for now!   

Audrey

Boy that really looks good.

Thanks, Kathi. Well, I guess Dr. Lopez gets the credit for this, doesn't he. All I did was let it heal.   

I mentioned this in another thread, but if anyone is following this one, I wanted to post this here too.

It looks like I might be able to add lowered blood pressure to my list of resolved symptoms. For most of my life, my BP was always around 100/60. When I was in my late 20s I was in the hospital, and the nurse had trouble getting a reading. She finally got one at 85/58. I always remembered that because of the inverted numbers. Over the past several years when I would go to a doctors' appointments, my pressure would jump to anywhere from 165 to 185 over 90 to 100! My PA kept telling me I needed to be on BP medication. I kept telling her my pressure was around 100/60 at home, so I didn't think I needed any medication. True white coat syndrome. I mentioned on the other thread that Dr. Norman mentions some people will have an even higher elevated blood pressure for a while following surgery, but then it will normalize. Over the past few months my pressure was no longer 100/60 here at home. It had risen to 125 or 130 over 70 or 80. Still normal, but higher than I was always used to. At first I thought it was just age related. When this started happening I finally agreed with my PA that maybe I did need BP medication. All was well for the first week or so, but then, as I mentioned on the forum recently, my pressure dropped to 85/45. The diastolic number was dipping to the 40s for several days. My PA ordered me off of the BP meds and prescribed a different medication. I really didn't think I needed any medication. I was wondering if maybe my pressure had dropped as it had, because I was 5 months post-op, and this symptom was finally resolving. I never took the new medication, and my pressure is staying around 100/60. So I think we can add that to the list now! And, by the way, I did discuss this with my PA, and she was ok with me not taking the new medication. I didn't just decide not to take it on my own. I now am keeping close watch on my pressure to be sure all is well.

So even though my body is taking its good old time recovering, I guess eventually I'll reach the end of this very long journey. Hopefully!

Audrey