Scared and confused

Hi all,

I have been suffering from Galactorhea (not sure of spelling), lack of energy, weight gain and complete loss of periods for two years. I have been back and forth to my doc who never took it seriously. It took a nurse to take it upon herself to do a blood test to check my prolactin levels and discover they were extremely high to be taken seriously! Initially, due to my textbook symptoms, it was assumed that I had a pituitary gland tumour.

I went along for a scan at the hospital and waited patiently for the results. I was then called back in for another one. I rang the hospital and asked them why i was being recalled, was there a problem? did they not get a good picture? but no one would tell me anything. Soooo, I went along to my next scan and am just sat in the waiting room with all the other patients when my consultant turns up. Hi, he says, i assume you know why you're here? Nope. not a clue. Oh, you've not got a tumour but you've got an aneurysm so we need another scan. Ill see you when we get the results and off he goes!!! All this totally off the cuff, in front of the rest of the waiting room and i just wanted to throw up there and then. God knows how i contained myself during my scan. I was there alone and now i was absolutely terrified and in shock.

Turns out I have an 'annie' on the carotid artery which is compressing the stalk of my pituitary gland. I am now waiting for an angiogram to see if it is suitable for coiling or whether it will clipped. Im told its not possible to avoid surgery due to my age, size and location.

I would really really love some comments from others in this position as I am completely, utterly terrified and feel really really let down by the way I was told about this.

I am 39, and a single mum to a gorgeous 6 year old and want to see him grow up.

Kerry xx

Hi Kerry,

I am new to BAF but can assure you that those of us who have been through the finding out about our annies then going through surgery to repair, know exactly how terrified you feel. As far as the way you were told, if it were me, if I did not feel comfortable with the doctors treating me, and I was told that way, I would find another doctor ASAP! It is most important that you be in a state of ease, being comfortable with a treating doctor, before you begin the process of dealing with your annie. I was lucky that when my annies were found, I had the best doctors and hospital care I could have ever asked for. My annies are in the internal carotid artery near the ophthalmic artery. I am just 10 weeks post op, having recently had the 9 mm annie on the right side repaired with the pipeline embolization device. I have found several support groups which have helped me immensely to get through everything from the surgery to the post op things. I would suggest that you read as much as you can and gather as much information as you can arm yourself with, and most of all talk to other annie survivors, we've "been there, done that" and can tell the deep dark secrets and the different experience based on whether we were clipped, coiled, or stented, such as myself. I have found that speaking with both survivors of ruptured and unruptured annies such as myself, has made a great deal of difference in my continuing recovery.

Here's hoping that you get the best care possible and please reach out if you need someone to talk to.

Best wishes,

Linda

Welcome...to BAF...!

It is so hard to receive the news of having an anerysm...least of all, in such a non-caring way you were told...I am sorry...but now you know...and the journey begins...a step at a time...

You will receive great support and information from others at this site...

Gotcha in my thoughts and prayers...Colleen

Linda...I am so glad to see your response here...I had read yours and left you a brief message...and, was coming on here to ask / suggest Kerry connect with you.

Pat

Kerry, welcome...my first comment is that you are blessed with early(ier) diagnosis...

If you are not comfortable with the mannerism of that neuro...please think it thru...let him know what made you uncomfortable because it may help him, and other patients, in the future. And, he may be one of the most highly skilled...so check it all out...

I was going to suggest you read Linda's Pipelne strip below... she has already responded to you here...

Prayers to you for your decisions and your comfort with the neuro... and, that you have close family/friends for your support and your son...

Pat

Thanks Pat! I've been trying to post around BAF to try and get everyone familiar with me and the PED procedure. It was my lifesaver!!

Thank you for thinking of me!

Best wishes,

Linda

Thank you all for your kind replies!

I'm still waiting for an appointment for the angiogram. NHS takes forever!

Went to the doctors today for something else entirely and just found myself in floods of tears. Hard to explain but felt like i'd been holding it all in and the dam just burst. She promptly signed me off work for a couple of weeks and told me to go back then to see how im feeling.

I feel like such a drama queen, why am I taking this so hard? Thousands of people are worse off and Im a strong person. I've had to be, ive lost my mum, im a single mum, i work and im doing a law degree and ive coped with it all but this little things has floored me...

Kerry,

First and foremost you are not a drama queen but a very scared person!!! Believe me, we have all been there. I'm such a strong person that it took me 3 weeks after my surgery before I broke down and shed tears ... then I could not stop for a whole week. I'm 10 weeks post op and I still am very emotional at time. It does take time and you will get through it. Let your brain and your mind process everything that has happened and has yet to happen. Sometimes, tough ones like us, are the hardest falling when we find out we are truly vulnerable.

Best wishes for your journey ahead. My prayers and thoughts are with you!

Linda