You describe perfectly what I have. Thank you for letting me know that I am not the only one, Fay.

That is just one more reason for me to suspect that things are getting active again, because I am getting some funny feelings in the scalp :-( There are also those funny feelings in the back, in the hands and in the feet. I wonder if I should ask about having that blood work done earlier than the recommended date??????

I was looking at some acromegalics stories on the web today and saw how much their skulls and their skeletons grew. I wonder if our scalps are tender and bruised just because of that?

There were also several references to severe pain and one person, I think it was the guy from Louisiana, the makeup guy, died from liver complications from taking too much tylenol trying too deal with the severe pain that comes from the AcroMonster. One woman from England spent her life in carnivals and was considered the ugliest woman in the world. Most of us very very fortunate to live in our day and age and to be treated and to have been discovered before things got to the point they did for her. One of the men I read about was voted most handsome person in his senior class and then later, in Holliwood, was considered ugly and was cast in monster roles for most of his career because of the AcroMonster. We are not dealing with a kind disease. It was a different Frenchman than Andr the Giant who was the model for Shrek, too.

Hi Rose, I still have it on waking this morning so I'll take some panadol and see how I go, don't think mine is because things are active again my igh levels are at their lowest 29 since I was diagnosed.
I think it has something to do with the hormone levels though.
What does your specialist say about them?

I'll have to try to remember to ask one of them the next time I see one of them.

I'm anxious to see if any one else responsds to this post that they have the same experience, too....

On 3 occasions, I fel that tenderness in the scalp almost like my hair roots where sensitive.....I am trying to recall when it was but I know someone else had this becasue at the time I recall reading about it and was amazed! How is that symptoms that you dont' even bother reporting casue you think no one wil understand or is this really happening....or they will think I am over reacting.. so these symptoms...seem more common place in our acro system....i will try to recalll whoe else

I remember having this same feeling before the operation as well and often thought it might have been some type of sensitive reaction to a hair colourant,
You hit the nail on the head there mctrjt it is like it stems from your hair roots.
it's weird I haven't really kept an account of when it happens, now that I'm a part of this group should be easier to monitor.
It's karma for sure I rang into work the other day saying I was sick with a migraine (when I wasn't) because it was my youngest sons final school Liturgy he is in year 12.

I know my skull changed shape,and not just around my forehead. I can't prove it, but the bumps and dents are definitely different from what they were before. Rose, where did you find these stories? Sounds like interesting reading.

Jeri, I started at Wikipedia (via Google), looking at data about Sun Ming Ming, then there was a page I hadn't seen before that had only 13 famous acromegalics. Only one of them was a woman (and Yao Defen was NOT on the list and Sandy Allen wasn't there either), although at first I couldn't tell because some of the names were so unusual I didn't know if they were masculin or feminine. I followed those links and one link led to another. The one from Shreveport LA is someone w/ a French name that is about 2 syllables and starts w an A and he was born later than most of us and died around 2002 from that tylenol toxicity. There was a link to a TIMEs article from around 1946 that gave physical dimensions for one of the French guys, NOT Andr the Giant, but the other guy, the one that was the model for Shrek. The "dopamax" is active at the moment and I'm feeling too lazy to look up the names my memory is fuzzy about. I'll try to remember to make a post with links if I come across that site again. I couldn't do it while I was exploring at school.

Jeri,

I have bumps and craters that I didn't used to have, too. My hair dresser can vouch for it. I had my doctor doing exrays for them around the time we were starting to get concerned about the headaches that wouldn't go away and before we discovered the tumor. I was wondering I had some weird cancer on the scalp or something. Now it makes some sense when I think of changes with the skull itself, as the endocrinologist empasized and as would be evident from the article I discovered Friday about Maurice Tillet, the French model for Shrek.

I still wish we had an acromegaly expert to advise us on this site and help answer our questions for this type of situation and others, or even had an expert somewhere else in our lives available for consultaions....

Rose

I have the same pains...weird prickly pains all over my head. Occasionally located in one location, other times everywhere. I sometimes wak-up feeling like my head is bruised all over. I went to the extent with my Endo of having a vascular surgeon review my case and do an angio-MRI. They ruled out any vascular structure issues and told me it is probably related to bone pain, blood pressure fluctuations, or radiation side-effects....

I too have noticed the scalp pains ,not so much after surgury but before it,I used to have feeling like something was craweling in my hair and after I got a hair cut my scalp felt like it was really sore, I could not stand to lay on my pillow, I just thought it was because of the hair cut,but it happened again after my surgury, when I was losing a lot of hair.My scalp really does feel a lot different now when I run my hands throwgh my hair. I think maybe we had swelling and after the surgury it went away and left our heads feeling different, I know I had one eye that would swell up huge and almost be shut, which my doctor said was allergys but that has not happened since my surgury.

Debbie1253- I think you are on to something. I had the same thing going on with my eyes. If I cried, even momentarily, my eyes would be swollen almost shut for up to 12 hours. It was maddening. No doctors or opthamologists could explain it, so they blamed it on allergies, which I knew it wasn't. It went away after the surgery. My ENT that assisted on my surgery said no one had reported it before, but she wasn't surprised.

Isn't strange that it's not until someone else mentions a symptom that you start to think about your own set of symptoms and then you realise that your not going crazy it might actually mean something about the condition.

I have also noticed on the front right hand side of my head I can feel like a thick vein or something there which I did notice before the surgery,but I'm fairly certain that I never used to have it .

Another thing I have is my left ear appears to be constantly blocked, I've had it syringed in the past but have just put up with it,my GP says I have a very narrow canel in that ear, I read somewhere about a woman who had the same problem and that's how she was diagnosed with acro.

so true, so true...speaking of ears...that is how I was diagnosed...actually I only went to the ent doc becasue he had been so kind to a client of mine and not charged them....I am blessed w/good insurance so I decided to have my nose checked out and mentioned that I felt like my ears were always plugged....he is the one who commeneted on my physical features....anyway I wrote about the experience in one of my early journal entries...rjtmct

I can't believe that this is not just something I am imagining. I kept thinking that it was a problem from my hair not being washed in the hospital for a long time and it just kept feeling like my hair was sore so I washed it constantly and it would go away...only to reappear the next day. I thought I was sleeping on it wrong or something.

I have not had any scalp problems but before my drug if I was stressed I would get a rash under my eye as if someone had smacked me one.Since drug no problems with this still same levels of stress but no rash under my eye it is interesting when someone on here says something however small and then you realize what that sneaky acromonster can do.