I went to 3 specialists in Utah to see what is up w/ my head. The tumor is definitely pinching my optic nerves, but not too much yet. It is growing rapidly. It has tripled in size in the last year and a half. Most of that probably has been occurring since I started nursing, so in the last 5 months. Here are the results in a nutshell....
1)Endocrinologist (hormone Doc): My prolactin is out of whack(we already knew this)I can take pills the rest of my life or have surgery.
2)Eye Specialist: I did a field of vision test and I am not losing my eyesight yet....I will be doing these tests every other month while I continue nursing.
3)Neurosurgeon: It would be best for me to get surgery sooner than later. As the tumor grows it will be harder to operate and get everything and not get stuff that they don't want to get. (Sorry I didn't word that better...)
Options:
a) Quit nursing immediately, Medication, blood tests and MRI's the rest of my life monitoring the tumor and hope it starts to shrink. If it continues to grow I will have to have surgery anyway.
b) Brain Surgery. If surgery goes well I will not have to be on medications the rest of my life and it will be much easier to get pregnant in the future and I will be able to nurse. If they don't get all the tumor, it will grow back and I will continue having the same problems. If they get too much of my pituitary gland w/ the tumor I will be on hormone replacements the rest of my life and I will never be able to nurse and it will be hard to have kids.
So, there is my predicament. I will continue nursing for the next few months while getting blood tests and vision tests every other month to make sure the tumor is not affecting me until we decide what to do. I will also be taking herbal supplements (Vitex) while we are deciding and while they are monitoring me to see if that helps. If that helps, I will probably do vitex long term and have another MRI in a bit to see if it shrinks on vitex. That way I can nurse and hopefully keep this thing from growing at the same time as nursing is the main thing that makes it grow.
Currently I struggle with headaches (almost 24/7), lack of energy, and out of control milk production.
Thanks for the link and the information. I am not having fertility problems but I have been suffering from a constant MAJOR headache since Oct 2008...yes 8. I am waiting for the next step but I am concerned about how long it takes to be headache free (from the meds) and I have heard that some ppl are unable to drive if they are on the bromo. Is this true. I am a single mom of a tween...and while I need to get back to work I also need to be pain free and able to drive.
ReplyDeleteHello,
ReplyDeleteI am a physician with inherent interest in your condition. Has it been explained that if you have the surgery, the chance of recurrence is pretty high still and the medication may be a reality.
Although there are side effects associated, I would certainly recommend you consider Dostinex in the interim if you are ever to gain control over your condition. Seeing how you are a believer in the concept of Vitex; I would encourage you to abandon that particular supplement and use high-dose Macuna Puriens (standardized for as high a percentage as you can get of L-Dopa) which would inhibit prolactin even in the presence of potential "stalk effect."
Please keep me abreast of your case (medicalmuscle@hotmail.com). Thank you, Dana Houser, MD, MHSA, CISSN
Laurie,
ReplyDeleteI had a hard time on Bromo. It made me nauseous, stuffy and out of sorts. I usually took it at night before I went to bed so I had a hard time breathing at night, but the nausea wasn't as bad. I probably would have had a hard time driving. I've heard that cabergoline is much better as far as less side effects and you only have to take it a couple of times a week. When I quit breastfeeding I think I am going to try it...
Dana, I've never heard of Macuna Periens. Is is ok to take while nursing? Where can I get it? My main concern with the Rx is that I cannot nurse and Vitex helps with that supposedly. I do not know if I am a believer in Vitex per se, I am trying it to see if it will help....I would like to know more about the Macuna Perians. If you could inform me, I would appreciate it! I do know that recurrence is high with surgery and that is one of the other reasons I am looking into other things. Thanks for your help!
ReplyDeleteHi! I just stumbled upon your blog so I know this is a now ancient posting. ;) I'm curious to know how you learned about the idea of trying essential oils & Vitrex? Feel free to reply to me via email: jello_im@hotmail.com
ReplyDeleteThanks in advance!