I have a "Fiona Face" now. My lower jaw increased considerably. I have a great deal of difficulty with TMJD.

My ears are huge and my cheek bones and brow bones are different. My eyes went from being one of my better features to seeming lost under the brow ridges.

Maybe we can expand this discussion a little, if you don't mind. I was thinking about JaneyBell's comment about we acro's looking alike. I would be interested in hearing not only how people's faces have been changed by acro, but what changes they observed after reasonably "effective treatment". While my face is certainly not back to my pre-acro features, it is a lot better than the last couple of years before my surgery. Have the rest of you seen that? It might give some hope to the newbies.

Great discussion and YES, I have seen lots of changes in my appearance. People continually tell me that I look thinner (I haven't lost weight) and my best friend who is very honest & open said my nose is more narrow. My lips are not as full and I've mentioned this before too....the shape of my skull has changed (is smaller) I feel ridges where before there were none. The gaps in my lower teeth did not improve. My ring size is about 1/2 size smaller and shoe size is 1 full size smaller and my feet aren't as wide. My wrists are smaller (had to have watch band made smaller). I still have the not so pretty smile and I find myself not wanting to smile because of it. The excessive growth hormones have done so much damage over the years that cannot be reversed but I do see a positive difference. I just now have gotten up the nerve to put my picture on here. Those of you that I have seen pictures of, do not look like you have or have had acromegaly. Good discussion...to those of you that are just beginning treatment, there is hope for much better days. Janey

For myself the acromonster was working more inwardly.I think Im the only one whose got the knockout allergy no one else has seem to suffer this one.The only signs I showed of outward was my fingers getting wider.. feet larger size hair and nails thicker growing long very quick.Im drug option and went to a class reunion now thats a good test and I suppose the funniest thing was people said you look more glamourous now than at school ok they were a little drunk LOL but it did me good as the drug Im on has slimed and my fingers down.For myself I so feel Im battling inward so much.The best thing though is I dont look like a walking corpse with dull eyes with dark rings round people say you look so well.Outwardly Im ok but inwardly not so sure yet

Before diagnosis, my bottom teeth had mysteriously straightened out - I had always had one slightly inset that was virtually impossible to keep clean, well it came forward a bit and seemed to be getting clean. Odd, I thought.

I had previously found it impossible to use dental floss as my teeth were so tightly packed together. I used dental tape (which is much skinnier and easier to use). Well, I was finding more and more bits of food getting stuck in my mouth and was using more and more tape and dental sticks. After diagnosis, I tried some of my girlfriend's dental floss... well I could have got *string* between some of the gaps! It was a bit of a shock.

My slight overbite is no longer there.

My jaw cracks now, aches a bit sometime, and I find it less natural to shut my mouth (no comfortable position).

Smiling is less natural too.

After surgery, my face has slimmed down (my boss thought I had lost weight); my sister (after not seeing me a few months) said that my face was slimmer. In addition, I needed a new photo for my library card... sitting in the same position to have the photo done, I can compare the two cards. Yes, the bottom part of my face is definitely slimmer-looking.

The changes are subtle if you don't look hard.

JohnD1, how long did it take for your jaw changes to improve?

Here is my story. Before I self-diagnosed myself, I had most of classic acromegaly changes - bigger shoes, bigger hands and nose, tissue swelling. But the most obvious thing was spaces between my teeth. The spaces became so big, that they had to put in an additional tooth between two original ones. When I tell this story to endocrinologists, they usually get very excited, because it is such an obvious manifestation of acromegaly. None of my dentists (and I had many) ever mentioned the word "acromegaly".

My lGF-1 levels have been under control for about five months. (I am on the largest dose of Somatuline.) I had less tissue swelling and those who haven't seen me in a while think that I lost weight. My shoes are much smaller now, but the bone changes have not occurred yet.

I am thinking of installing a few veneers into my mouth so that to have a nice smile again. But not sure whether the spaces between my teeth will get smaller. So perhaps I'll wait until December.

Ohhhhhhh the dentists horror stories. One said I should get all teeth pulled and get dentures. A cosmetic dentist said he could make all teeth great with veneers and crowns for $ 38,000. Another dentist who did 3 crowns (my bite was so off for the impression) yelled at me because I said I don't know how to bite down, I had to hold my jaw in position. He said :"Why don't you just bite down with one of your bites" !!!

I had lots of facial changes and you can see a huge difference in my face before and after acromegaly. Large ears, my nose was wider, my lower jaw grew and my teeth spaced out. My eye lids drooped and the last three months before surgery took off with swelling and drooping even more, large forehead. My fingers went from size 4 to size 7.5 my shoe size from size 4 to size 6.5 to 7. Three years post surgery, my swelling has decreased, my eyelids look a bit more normal. The ears are still the same size and the forehead is still the same size. The skull is still larger. I look more like I have a waist now and not just one big round bulk. Unfortunately my swelling has started again in fingers and face because growth hormone has started climbing again. Yes there will be changes after surgery as time goes on. You will look and feel better but it will never be the same as before the surgery I think. This is a nasty condition.

My face changed considerably and this is very clear when I look at pictures in the past 2 years. However my endo said that the acro was present by looking at pictures of me 10 years ago!!!

The major changes: bigger nose (which went down after surgery), bigger lips (especially bottow lip - which improved with the first sandostatin injection and is now back to normal following surgery), puffy and watery eyes (which are OK now but my eyelids still look 'tired'), big forehead (no changes), big cheekbones (no change) and just a big head!.

The major challenge for me remains my smile and teeth. My smile is just not the same, don't know how to explain it. I think because my lower jaw has increased, my smile just doesn't look natural. Feel like the Joker in Batman. In the past year my bottow teeth have spaced out and flared out. Which means that I always close my mouth when it's picture time. Am looking now for an orthodontist willing to find a solution.

The acro really changed my facial structure as well. My lower jaw started portruding, and I had spacing between my teeth, and my brow started lowering and my eyes looked deeper set. I'm 3 years post surgery now, and on Sandostatin LAR 40mg, and everything has slowly been going back to normal. Thinner nose, lips, lower jaw not portruding as much, brow looks normal, shoe size decrease 1.5 sizes, ring size decreased 1 size.

My face has definitely changed. I have the low brows, larger nose and ears and my lower jaw has grown significantly. I now have about a half inch under-bite and the width has grown to the point that it appears I am missing an entire tooth! The upper jaw is now starting to separate. I had to have the teeth in the back removed because they were being crushed by the way my jaw sets now. When I get my injection I notice a reduction in facial swelling but by mid month the swelling creeps back.

I don't have the jaw issues, but my face has definitely gotten slimmer, nose is better, sometimes I can see the acro more than other times. I just had my 3-months-after-starting- Sandostatin-LAR-20mg followup with the endocrinologist. IGF-1 is 534, down from 732 post op, but still too high, so I'm going to get 30mg Sando LAR next visit. Ring size is smaller, shoe size is probably 1 size smaller, though I can't afford new shoes just yet (still will have to special order women's size 12). I got into some clothes last Sunday that I had planned on giving away, thinking I'd never fit into them again...down 2-3 sizes. I'm still a bit thick in the middle compared to what I used to be, but it's better. I can tell the ribs are still the problem there. I am having trouble with my knees, however, as they want to swell if I do any walking much, as in exercise.

Hi!
Do you have a pituitary tumor or was it removed? This is good news for you with the feet and ring size getting better. How does this work? Does the tissue overgroths skrink with medications?
Do you know if a growth hormone of 4.1 is normal?
My situation here has become so complicated. My pituitary surgery was scheduled for September 11 th, then my endocrinologist recommended to wait and cancel the surgery.
Ulrike

I know this is an old thread, but I can't tell you how reassuring this is. My feet have gone up 1-2 sizes, I haven't been able to wear my wedding ring for a year, my waist has completely disappeared, and my face looks incredibly different. I've posted an older picture of me in my profile, if anyone's interested. I get my blood results this week, but my endo is 110% sure that this is what's wrong. I hope I feel like a brand new person soon!

Hello everybody!
Did any of you ever look on the internet. The faces look like monsters. I think none of us look like that. However, the changes are obvious. The first endocrinologist I saw 12 years ago wrote in my medical record "she does not have the typical facial feature of acro". She must have look at the faces on the internet.
U