I picked surgery over medicine. No regrets!

On the off chance there is anyone else struggling with this decision I thought I'd share my journey! I felt like I had a lot of choices to make and wish I had had more clarity in the beginning.

30F diagnosed this past summer. I had about five miscarriages and finally got referred to a reproductive endocrinologist. We did the whole fertility work up the we found I had elevated prolactin coming in at 86. I did a re-check a month later and it was at about 69. My doctor sent in the MRi order and it came back with a pituitary macroadenoma with signs of hemorrhage. In hindsight some of the signs I had included inconsistent menstruation, nipple discharge, fatigue, and weight gain but my doctor actually assumed PCOS or hormonal issues of another nature.

I was referred to Johns Hopkins in Baltimore and first met with an endocrinologist. He was wonderful and we discussed the different options primarily cab or surgery. I asked to speak to a surgeon too and he referred me to a neurosurgeon there. After speaking to both doctors I decided against taking cabergoline especially when the surgeon explained it can sometimes make removing the tumor more difficult in the future. Between that, side effects, and knowing ultimately I wanted a successful pregnancy I opted for surgery. I also didn't feel good about being on a long term medicine that may stop working. We scheduled it for December because I had a hiking trip planned and I also wanted a quiet time of year to take time off of work.

Prior to surgery I had several pre-op appointments. I met with the ENT surgeon, had a new MRi done two days before that had fiducials put on my face, and a CTA to map. I learned my tumor was touching my carotid so they were going to leave a margin and we'd evaluate options after. My surgery happened on a Monday morning and it took about 6 hours total. They did in fact get the entire tumor, it cleanly broke off my carotid on its own with no damage. I woke up with a terrible headache and exhausted but that was about it.

I was in the hospital for three days which was the worst because of the every hour neuro checks. Hours after my surgery my prolactin was checked and it was already down to a 20. While in the hospital they monitored me for adrenal issues and other side effects but I had none. My pituitary was also undamaged. The headache was manageable with tylenol and I was able to smell and taste which surprised the ENT. I had some nose bleeding but nothing crazy and I barely noticed the packing. There was some facial swelling but no bruising. I had an MRi again while there that showed everything looked great so they released me.

I went home and within two days I felt incredible. My post op care was saline sprays to start until my post op appointment a week later with the ENT. Also lots of sleep. He took out the packing and everything looked great. Still no loss of scent and taste for the most part. I also signed up to do scent training for a clinical trial they were running which is very cool. I started saline rinses then.

This part is where I'm a one off. Exactly two weeks post surgery I suffered a posterior nosebleed. I ended up going back to Johns Hopkins to get an artery in my sinus cauterized. I lost about 12% of my body's blood because my local hospital wouldn't intervene but also wouldn't send me home. My ENT surgeon (who is incredible) got involved and got me transported back to his hospital where they took care of it. I was released same day as my second surgery. This surgery was MUCH harder on me than the first but I suspect that's blood loss more than anything.

I'm back to feeling incredible. No more headaches, no more fatigue, and I've lost almost twenty pounds since surgery. I have more mental clarity than I've had in years and I actively want to engage in my old hobbies and activities. I took six weeks off of work so I'm heading back next week and personally feel capable. However I encourage everyone to take off what time they feel they need!

Feel free to ask me anything! I'm an open book!