Suzanna,

Wow - you had a real ordeal, I'm sorry to hear that.

Yes, I felt a sensation of my head for some weeks after surgery (especially the first two weeks), and was worried about a CSF leak. The nurses and the doctors did not seem so concerned about this, so it's likely that I was just being over-worried.

Hydrocortisone (at the doses they tend to give post-surgery) can lead to hypo-manic (or other psychological responses) in about 10% of patients, peaking in likelihood at about the two-week stage. Things return to normal after hydrocortisone is stopped. I had "an episode" which I blogged about which was very frightening, but my rational mind somehow managed to hang on.

I had a nose-bleed in the middle of the night, and I though it was a CSF leak. The medics came, I was taken to hospital for observation, but all was fine.

It's totally natural to feel very very tender after surgery. Just really pamper yourself, and don't be too hard on yourself.

At the end of the day I have a 'cure' and in reality the hurdles were worth it, and in looking back I wonder what I was worried about.

Trys
www.acromegaly.wordpress.com

I feel much better today, after a day in the ER yesterday. I was having what the almighty google defined as respiratory depression, and google also said that it could be caused by the vicodin I was taking, and that it could be fatal. At the ER they said my blood oxygen looked fine, but my salt was really low. They sent me home with salt pills and a new prescription for tylenol 3, and I feel great today. I haven't even needed the prescription pain pills, just some OTC tylenol. It's weird how the most unexpected things can mess with you. Apparently, the Vicodin (aka Hydrocodone) can also increase intracranial pressure.

Trys - they didn't have me on hydrocortisone at all - I never was hypopituitary, I guess. Your blog, by the way, has been an excellent source of both information and inspiration during this ordeal. I'm curious - have you noticed many physical changes since the surgery? It seems from your profile pic that your face definitely changed a lot due to the acro, and was wondering if you had noticed things going back to normal. Since the surgery my jaws have been aching like crazy and my teeth fit together (or not, as it were) differently every day. I'm especially hoping to get rid of the big line down the middle of my forehead :)

I'm still having some slight nose drainage, but the docs don't seem concerned. I meet with Dr. Gardner on Tuesday to look at my new MRI. He isn't testing GH that day, I'm not sure why. They said they think they got the whole thing, and used the words full remission immediately post-op, even though my GH was 24. I trust these guys, and I guess I'll know more on Tuesday. Thanks everyone for all the support!

One question for you guys: after the surgery, did any of you have jaw pain?

I'm having upper and lower jaw pain. It feels like it's either rapidly getting smaller or rapidly getting larger. Since I know the bones can't ungrow, that makes me worry that for some reason they're suddenly growing!

I haven't had any real jaw pain, just some popping. I have felt my teeth shifting. My biggest issue has been cold. I'm cold natured by default but this is insane. I'm almost always freezing to death. Not just cold, but freezing! It's crazy but my endo doesn't seem to be concerned. He said I've gone from having a disease that raises the body temperature and on top of that lost 40 pounds.

The line down the middle of my forehead has significantly gone down. It's not gone, but is for sure smaller.

Be sure to let us know how your appointment on Tuesday goes!

Suzanna,

I thought for some reason that "Hydrocordone" was a tradename of "Hydrocortisone" - so I misunderstood you. Silly me!

In the hospital I went to they give hydrocortisone to all pituitary patients after surgery as a protective measure just in case the surgery has resulted in some loss of pituitary function (hypopituitary). I wasn't hypopitutary either, but they only found this out after blood tests and an "insulin stress test" (that was interesting!).

My jaw ached a little for a few days after surgery, as did my skull. I put it down to the clamp they used to hold my head, and presumably a clamp to keep my jaw open and my airway clear during anaesthesia. That's just me guessing.

My profile picture (the animated one) was the fictional work of photoshop, I was trying to figure out what I might have looked like without acromegaly at all! I've put up an old pre-treatment picture again now.

It sounds like you're doing much better now, which is excellent!

Trys
www.acromegaly.wordpress.com

Suzanna, I too had a couple of days of low sodium. At one point I felt I was either going into a coma or about to see the tunnel and the light. Of course this was a Sat so I spoke with the doc on call who told me there really wasn't much they could do at the hospital that I couldn't do at home which was restrict my fluid intake to less than 500cc per day. That equals to about 2 cups of coffee. I took small sips of things throughout day. I had to do this for a week but started feeling better within a day or two. I was taking percocets for pain and wondered if that accentuated the effect of low sodium since I am not use to narcotics and I was so weak. I didn't take anymore after that, it was too scary. I tried ibuprofen but it didn't seem to touch the headaches but even they are pretty much gone now.
Trys, I wasn't put on hydocortisone either but still having the mood swings at times. I was put on prozac prior to surgery and would like to be off it but thought I would wait til I had recovered a bit. I don't like taking meds for anything but will if I have to. Today I am feeling quite shaky in my muscles and tired. Maybe because I worked a couple of 12 hour shifts this week but I am 7 weeks post op. Hope this doesn't hang around long. I too found your site very helpful and am so glad you are "cured". I've wondered what I would have looked like without acro. I didn't look too bad in my 20's. I do look better now and everyone says I look 10 years younger so I'll take what I can get.

Well, I feel much better in general, but am now freaking out about two things:

My jaw is aching and has definitely increased in size AFTER the surgery! My teeth suddenly don't fit together and I have a noticeable gap between my front teeth. All in the past week. How could this happen????

My skin is as oily as ever and the sweating is still bad. I think these signs mean I still have active tumor, despite what they said immediately after surgery. I hope I'm wrong, but I don't see how.

This stuff sucks, guys :(

You have got to remember dear that your body just suffered a major trauma! It's still healing and changing. Your poor pituitary is struggling to work correctly after who knows how long of not working right, you're going to have some stuff going on. If it makes you feel better, I had bouts of sweating (now I'm freezing to death!), went through about a week of skin I could fry an egg on, now it's dry as a bone. My eyes watered like crazy. Mood swings like crazy, even still and I'm at 2 months post-op tomorrow. The teeth might be shifting because the soft tissue swelling is going down, same with the jaw adjusting. It took years of small changes to get where we are, but some of them go away pretty quickly and take us by surprise.

Mention these things to Dr. Gardner and Stephanie tomorrow when you go see them. It's probably nothing to worry about so try not to.

Monica

Suzzanne,

My skin still felt oily after my operation, and my eyes still watered loads, which convinced me that the operation was not a success. I was wrong though, as the test results showed, even the ones the same week as the operation.

Some things take time to change back, if at all. We all have different reaction, and a simple thing like a stress response can give you sweats.

Your pituitary function will be all over the place at the moment. Don't worry. it's just "finding its feet", and everything will continue to settle to normality.

You may have a pleasant surprise.

Trys
www.acromegaly.wordpress.com

My mouth/jaw felt funny after the op, but this changed over time. Some things shrank/changed straight away, others took a time to settle down. Your body has got hooked on too much GH/IGF-1, and is now suffering withdrawal symptoms!

John

So how was the appointment with Dr. Gardner?

Actually, I didn't meet with Dr. Gardner - I met with Dr. Miranda-Fernandez. He was on my surgical team (and restarted my heart when it stopped during surgery). They'e not sure if they've gotten it all or not - the MRI show's something very small and they're not sure if it's residual tumor or things that need to settle after surgery. My GH levels dropped immediately after surgery from almost 400 to 24, so they know they got almost everything. They didn't test GH and IGF today, I have to wait a couple of weeks for that, and they want another MRI in two months when everything will have stabilized.

My biggest concern right now is my heart. It's been kind of pounding since the surgery, and occasionally it speeds up to around 110 bpm and stays there for a while. It stays around 90 as is. The neurosurgeons said it would probably resolve on its own and is likely due to all the carotid manipulation that happened during surgery. The cardiologist has me wearing a holter monitor for a couple of days, and he thinks it might be adrenal. Everyone seemed sure I wouldn't have a heart attack, so I guess I'll carry on.

This is really a bitch of a disease, isn't it??

Dr. Miranda-Fernandez did my post-op too. He's amazing. Sounds like they have a positive outlook right now. Hopefully your heart will settle down with lots of rest. I know you are anxious to know what your numbers are but try to be patient. You've been through a lot and it's going to take time for things to even out.

I'll be making a spastic call tomorrow to my local neurosurgeon because I've been having short but very very painful headaches for the last week. They only last about a minute but I can barely move when they hit. I'm almost scared to call and part of me wants to ignore it, LOL that's a little effed up isn't it.

Yes this disease is a bitch. It's so much more than a brain tumor. Even when the tumor's out, the effects linger forever.

Well, it's two weeks post surgery today and I'm gonna make the call: not cured.

My fingers seem more swollen today and my lips are feeling more puffy than yesterday. I have the feeling my bloodwork next week will have some bad news. I know it's not the end of the world, but I definitely don't want to wait 2-3 more months to start another treatment. I'm so impatient!

Ohhh Suzanna, I didn't see the Dr. in front of your name when you posted before. =P Silly. You are impatient sister!

Don't borrow problems honey. You are worrying entirely too much about every little thing. You need to stop letting this disease beat on you like this and go live. I think the worry and doubt will always be there in the back of your mind. Wait until you have something to worry about, worrying now isn't going to help or fix anything, it's just making you miserable.

I fight down anxiety/worry every time my head hurts, the sun is too bright for my eyes, my hands feel puffy, I sleep badly, etc. I don't think it ever really goes away but we can't let it defeat us.