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I had the Mirena put in six weeks after having our daughter, on J...

Posted at 7:33 PM on May 09, 2008 by mamarose, #30348
I had the Mirena put in six weeks after having our daughter, on June 30th, 2006. I never was able to loose weight, and felt very bloated, moody, with pains in my sides (ovary level), and then in the Fall of 2007, I noticed a significant loss of vision in my left eye. I went through $40,000 worth of hospital visits, and one 8-day stay, to figure out that the Mirena had caused a rather large blood clot to form on the outside of my brain in the main vein that crosses over the top outside brain. I have suffered from multiple ER visits with migraines lasting up to 72 hours, even after shots and meds. I have been going to the University of Colorado Hospital for treatment and it has taken over six months to get me on a medication regiment that will hopefully alleviate my debilitating headaches and now am living with the possibility that my vision may never get better in my left eye. The Dr.'s I have seen: an eye surgeon, a Neurologist, a Neuro-ophthalmologist, a Retinal Specialist, and the multiple local MD's. The tests run on my body and head have been very extensive, including blood tests, multiple MRI's and the final MRVenagram that tests the flow and drainage of and around my brain that found the blood clot and have ruled out everything from MS, to Pseudotumor Cerebri (which is a lifelong disease offering only pain management for the most part), as well as a macular deterioration related with people over fifty, not 24, they have also ruled out any pre-existing tendency for being prone to blood clots . This has been the scariest thing of my life and so consuming and debilitating, that I would never recommend the Mirena to anyone. I have missed so much work and the traveling to doctors have been a drain on our financial situation. This kind of information needs to get out there because Dr's are denying any relation to the Mirena. My Dr's have definitely diagnosed my problem as the Mirena. The swelling of spinal fluid was my body trying to protect itself and that swelling caused such great pressure on my optic nerve that my macula, where a person has central and fine detail and focusing, wrinkled in a layer of my eye that cannot be operated on. I can no longer read out of my left eye and the stress that created for my right eye is a contributor to the migraines. I also see double at night, when lights or signs are illuminated by the headlights of my car. I am seeing two images! This is very hard to accept and not being able to read for very long also upsets me. The likelihood of my vision repairing on its own is slim to none. Thanks Mirena. SO please, please help the word get out!!!! Also caution anyone you know who is planning on getting the Mirena, or who has one in to be aware of any changes. My experience has been very extreme but maybe women out there are going through the same things I have been and no one will recognize the relation to the Mirena. I am only glad my Dr. was willing to admit the Mirena was the cause.
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Reply 8 months ago on Mar 13, 2009 by takethe5th, #17947

Your post is ringing bells with me .My optician picked up a problem last week and got me an appointment with an eye specialist yesterday.I asked him to be frank with me as he wants me to have a scan asap.He said tumour or pseudotumour cerebri was his guess.I have not had the scan yet but have been looking up info on the web and have found the causes of this problem could be amoungst others levonorgestrel implant.I have had a mirena coil for 10 years.Untill the last year or so it has been ok.But on looking at all your syptoms here realsise that i have other syptoms too.Hair loss ,ovarian cysts, low tummy pain ,weight gain and no sex drive.
Oviously my big worry is the brain problem. The treatments sound horrific.
I really am at my wits end and think i should have the Mirena removed but the reason it was put in was to stop really heavy periods of 3 weeks a month bleeding.It sorted this out perfectly i have not had a period since it was put in.Will it go back to that?

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