I just so understand I call it the acromonster because it can affect your life and anyone who says it does not is lying to themselves.I came on here and no one was not around and I got a hug oh that felt so nice knowing someone understood.More people have come and we are on different treatments but I have found people share stories we try and laugh share what we think.Read some journals look at discussions I hope something helps everyone here understands wherever they are on the journey but for now heres a big Hi from the sensible one you ask any of the others they will tell you lol.

Dear Crippler, I am so sorry that you are feeling extremely depressed about your recent diagnosis of acromegaly. Its understandable to be feeling this low. The shock of diagnosis and the uncertainty of the outcome have been tremendously upsetting experiences for a great many of us. I can remember feeling the same way as you when I was first diagnosed. I hope, though, that you can find strength, from within yourself and from talking with other members of this group. There is great hope for your future, but you may have to be patient. The treatments can and do work and there are more and better treatments on the way. You are very young and there is so much to look forward to. I hope you can find yourself through the dark thoughts and see that there is a great deal to be confident about, despite the obvious disappointment and shock following your diagnosis and operation. I will be happy to correspond with you privately as well if you like. Its important that you seek out the best expert treatment you can and you may need some guidance to do that. Do please stay as strong and as optimistic as you can. I say that not as a platitude, but because it is true. Today there are more successful treatments than ever before for acromegaly and they are getting better and better. We all have a lot to be positive about.

If you had your surgury on Jan.28, 09 it is too early to tell anything about your blood test levels.It has not even been a month yet, can't believe they have already made you do three blood test.Your body was so full of GH that it takes awhile to get it out of your system. I think it is standard practice to wait until 3 months to take the first blood test and then go from there.MY first two blood test were still a little high and then went doen from there and then you should have a GH suppression test. Hope you get to feeling better and remember you are really young and are so lucky they found it now and not 10-15 years down the road.I felt hopeless, depressed and the suicide thing before I was diagnoised, I felt helpless because I knew something was wrong but we could not find out what..There are so many great people on this site to offer support and help, so don't be scared to ask questions you can make it through this,,You aren't by your self.

First up welcome to the group Crippler,yep I can also relate to what you are feeling, I came as a hell of a shock for me to find out I had Carpal Tunnel and practically the same time a brain tumour.scared, feeling isolated,withdrawing,sticking my head in the sand at first thinking it can't be happening.If it wasn't for the love and support of my husband and two sons I don't know if I would've coped in the early days of diagnosis.
As jon has said it is only early days since your surgery, things will take a little time to start to settle, I believe the key is stay as positive and optimistic as you can, Crippler you are so young and the whole world is ahead of you, you didn't mention if you have a partner, family or friends that can offer you support, that is a big step in your recovery.
This is a great support group with very caring, sincere people and we are here for you, there is no need to feel alone.

Hi Crippler: Welcome to this site.

I think for many of us, we have felt lonely and depressed because of this disease. Your surgery was so recent and i'm sure your fluctuating hormones are adding to your low feelings. I also felt frustrated after my surgeries (I had two). Your dreams will not be lost because of acromegaly: you have acromegaly, but it doesn't have to have you! You must stay strong. I am on medication now because my growth hormone wasn't normal after surgery. At least we have medication available. Even if you have to have RT, the results can be outstanding from what I have read. You are not alone. there are many wonderful and caring people on this site. We are all here for you!! Allow yourself time to heal.

I went to a shrink for 4 years and he MISSED my acromegaly....he told me my pain was due to being a "stressed-out housewife." Sounds like your shrink was on the ball. Perhaps you can ask him for some coping mechanisms? Take care, xx

Hello, crippler and welcome to a life support of friends here @ DS! I think you will find many helpful and inspiring stories. While we are all sorry to here that you have Acro... we are glad to have you with us! The best thing I got from this site is the fact that are people here that just get it...the anxious, depressing reality of it...and these same people will help lift you up so you can join us in the fight of kicking this ugly disease in the arse!! Give yourself time to get use to the new reality of having this and when you are ready start reading the journal entries and discussions. You will educate yourself and in turn you will probably find that you will need to educate your care team somewhat as well. You need to be your own best advocate to get the best care your can for this. We will be here supporting you, if you have any questions ask or start a discussion and you will be AMAZED at the help you will get. we are here for you!!

Crippler,

If you have already been on Somatuline (or Sandostatin) and it didn't work, you should try Pegvisomant before RT. It is supposed to be effective almost in 100% of cases. Don't hurry with RT - it takes a long time for it to take effect and the side effects are almost irreversible.

Just think that there are many people who are in a much wore position than you. I am sure you have good days too. I suspect that my IGF-1 levels have been more than 1000 for years, but the things are better now. I hope your levels will improve soon too.

I so hope when you come on and see the replies it helps make you feel that there is hope theres some brill replies.I have on my status I am burying something under the patio it was someone on DS only JK although I feel like it but its the acromonster its days are numbered when Ive finished I am sure you can borrow my spade if you dont have one or hey maybe you would like a boys toy a digger I know wheres theres one of them handy. You could dig a hole to put the monster in Oh so LMAO here they have normal on my notes crack up or what anyway welcome to the group Jokeyx

First of crippler dont ever let this thing get you down mate you can still live your dreams ,you will find on this site and within this group the most wonderfull people you will ever meet ,because every single one of us has been where you are (god knows i have) my igf1 levels are still over 950 and its been nearly 6 months since my op my gh levels are good but others arent so good . If you ever need to talk we are all here for you we are all on the same journey some paths are straight and some have curves but we all end up together mate .Keep fighting this thing dont give up you have a new family know the acro family

Acromegaly recovery occurs in S-L-O-W motion. A few lucky individuals have spontaneous recovery immediately after surgery for the rest of us it takes time. I am also surprised that you have had 3 blood tests already. My endo did not act on my IGF-1 results for at least 3 months after surgery. Everytime anything is changed it is another 3 to 6 months until the results are acted on. It takes time for your body to respond to the treatment. I was diagnosed in 2004 and have had surgery - not successful / cyberknife surgery (check this one out as an alternative to conventional radiation) which can take 5 years to produce results / Sandostatin - my hair fell out and my levels continued to be elevated / and now somavert which seems to be doing the trick. So this is a long road. In the meantime, I have worked 1.25 jobs and received tenure at my primary job. Some days are better than others but just roll with the puches and keep on going. There is life with acromegaly.

Hi,

Thank you all for the warm welcomes and kind words of support. It sure helps to hear from people who understand and are experiencing exactly what were going through. Since the surgery, I am feeling a lot better though - no headaches so far, better sleep, hand size reduction, but the main difference has been in my eyes. Im curious to know if anyone had blefaritis (eyelid inflammation) as one of their symptoms. Ive had it for a year and a half, and it was causing me extreme discomfort with that sandy feeling as well as light sensitivity. I had been treating it for 8 months with no success. Those symptoms
have cleared so far, Im only left with some slight inflammation on my right eyelids. So in a way Im feeling a little bit alleviated.

In response to some of your queries, AussieFay, I have thankfully the support of my family who has been helping me endure this. I havent started on Somatuline as Im still waiting for my endocrinologist to confide with my neurosurgeon as to where to go from now. He did mention the shots, so thats what Im expecting to go from here.
Also, my shrink explained to me that most doctors have been loosing what is referred here (Im from Portugal) as the clinical eye, which is the ability to look at the broader picture in a patient and not just focusing on the symptom. I went there complaining about my eye problems, and he immediately suggested that I had acromegaly just by looking at me. He went on to say that if I had been receiving treatment for blefaritis and not getting better, that something was definitely wrong. Mish, I cant believe your shrink attributed your pain to stress - its incredible the nerve and ignorance of some doctors out there. I guess all things considered I was somewhat lucky that it was picked up now. However, its still bitter to look back and think that all this could have been traced 5 years ago when I had to wear braces for the second time due to gaps in my teeth. I know its pointless to think about this now, but it still leaves an aftertaste.

Thank you for listening.

Glad to hear back from you Crippler. I sooo agree with that assessment of doctors! I'm a bit frustrated with them at moment, OK more than a bit....

I've had a few instances of blepharitis and a lot of trouble with light sensitivity. the blepharitis was prior to the resection and the light sensitivity is a continuing problem that I tend to attribute to migraines but at this point I am not sure how much the migraines are related to the effects of acromegaly - notably TMJD and skull changes that crowd my brain. Some recent treatments for the TMJD seem to prove that theory that the nerves are not happy with the crowding.

I'm glad you've found us. Please keep us informed and I sure hope that blepharitis clears up, soon.

Hugs,

Rose

So glad to hear from you again Crippler and you sound more hopeful now, that's great,family and friend support is so important and you know you have us now so please stay in touch.

Glad to hear back from you and you do sound more chipper now. The braces thing was a pain in the butt, I had my second pair when I was 40.I also went to an oral surgurion and he did xrays of my jaw and ear , if only he could have made one a little higher up than just my jaw he may have found my tumor(I don't know if it would have showed up on a regular xray ) that many years ago. I guess it wasn't meant to be.

Welcome to the group. I'm glad you found us. Please don't blame yourself for not figuring this out. One of the main reasons it takes 7-10 years for most people to be diagnosed is that virtually every symptom is easily explained by something ordinary. (Many of those who pushed the issue were labeled as hypochondriacs at some point.) While there were many doctors/dentists that could have picked up on acro, most usually haven't. Addressing that is becoming one of the goals of this group. Please try to be patient with your improvement. My IGF-1 level and body changes continued for at least 18 months after surgery, even when the surgeon believed he got it all the first time. I'll share a suggestion my ENT gave me- take a close-up photo of yourself. Then every couple of weeks take another. You really will be able to see significant improvements over the span of time. It is very encouraging. You WILL get better!