NF 1 and Implanon (birth control implant)

I'm 19 and I have NF 1. I know when I was pregnant everything seemed to get worse. My OB/GYN impanted Implanon, the birth control implant. So what I really wanted to know is if birth control can make NF 1 worse. Cause my DR. won't take it out cause he said it wont  cause it to do sanything. I know my headaches have been worse and I can tell my vision is getting worse, not to mention I blood pressure was up when I went for a checkup and Ive gained almost 30 pounds since Ive had my little girl in Sept.

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.

As you may know, neurofibromatosis can affect various areas of the body including the brain, spinal cord, skin, and bones. if you are having worsening headaches and vision, I strongly recommend you be evaluated by a neurologist, and if you have not recently had an MRI of the brain, I recommend you discuss this further with your doctor. Also, for your blurry vision, I recommend that you also see an eye doctor soon.

Regarding the effects of hormones on neurofibromas, research has shown that neurofibromas do have hormone receptors on them and may have growth changes related to hormone exposure. Neurofibromas may first appear and/or grow during pregnancy due to the hormonal changes that occur. In general, the hormone that is felt to affect neurofibromas most is progesterone. There has not been a substantial amount of research related to the effects of hormonal implants such as Implanon on neurofibromatosis, but in general, if non-hormonal methods of contraception are available and possible they may be preferable to hormonal therapies. However, as contraception is not in my area of expertise, I do not know if Implanon has hormones that are systemically absorbed significantly; if Implanon works only locally within the cervix etc, then it may not affect neurofibromas elsewhere in the body.

I again recommend evaluation by your neurologist for your headaches and vision symptoms, as well as by an opthalmologist. Discussion of the use of hormonal contraception with your primary doctor and neurologist is important. If you are able to establish care at a Neurofibromatosis treatment center, which would offer care by many different specialists, this would be ideal, as NF1 is a complex disease and evaluation by many specialists is often necessary. There are several of these located across the country. Further information is available from the National Neurofibromatosis Foundation and local Neurofibromatosis support groups.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.