Thursday, February 16, 2012

My update on Pseudo-Tumor Cerebri

I thought that I would give an update on my journey toward investigating if I have Pseudo Tumor Cerebri.

Quick back story....I was one of the lucky ones who, after having the Mirena inserted, I lost most of my vision in my right eye (within the first couple of months). I went from great vision to legally blind in that eye (20/80 vision) virtually overnight. Anyway, after seeing the connection between Mirena and Pseudo Tumor Cerebri (click to learn more), I thought that I'd better make sure that wasn't something that I was dealing with (since it can back you end up permanently blind if not treated).

After researching it, it seemed like I needed to see a specialist called a Neuro-Opthamologist to accurately diagnose it. I also read that it was diagnosed via MRI and spinal tap results (Quick description: Pseudo Tumor Cerebri is when there is too much cerebral spinal fluid in your head, and it can crush the optic nerve from behind, causing blindness). I wasn't looking forward to a lumbar puncture, but I was willing to do it to find out.

After contacting a Neuro-Opthamologist, I learned that I had to have my Opthamologist send my information to him to be "accepted". I set up an appointment with her so that I could explain what I was trying to do.

At my Opthamology appointment, I was told that she firmly believed that I would be wasting my time getting checked for this...for two reasons: Number one, I was showing no signs of Optic Neuritis (a swelling or damage of the optic nerve--again, click for further detail), and I was showing no signs of Papilledema.  She said that, if a person has PTC, they almost always show signs in one of those two areas.


That is as far as I got. In her opinion, I don't show any signs of having it, and she says that, with the extent of vision loss that I experienced, I more than likely would if that is what caused it.

So.....I guess I am at the point where I just have to accept the blindness in that eye and move on with my life.  It is time to make the adjustments necessary to live with it. I'm sick of the glasses--mainly because every time I take them off, I literally become nauseous due to the extreme difference between both eyes (they start fighting one another), and it makes me dizzy and sick to my stomach. I don't have the money for Lasik surgery (nor do I know if I even qualify for it.  I haven't checked because I don't see the point in doing to the consultation to see if I qualify when I know that I can't even pay for it right now. So, next week, I am going to be fitted for contact lenses so that I have something in my eyes all day to keep my eyes "equal". Hopefully, that will help....and I'm hoping that--one day--I will be able to do the Lasik surgery on that right eye so that I can see again from it. Fingers crossed....tightly.

As frustrating as this is, I am at 17 months post removal, and--overall--I am doing so much better that I am beyond grateful. I think about where I was a year ago, and it still makes me cringe. I remember praying that it wasn't going to be my last Christmas with my family and wondering how I was going to have that conversation with my husband....what we were going to do to plan for the worst-case scenario of mom no longer being in the picture (because I would either be physically gone or so "mentally gone" that I couldn't function). Remembering that, I will accept the blindness in that eye as something frustrating and unfair, but something as as "hiccup" in my otherwise healthier and happier life than this time last year. What else can you do, right? Dust yourself off and move forward....we know that all too well, don't we?

I hope that explains my latest process clearly enough. I am still praying for all of you, and keep fighting.....I can tell you that I still feel myself getting better and better as each month passes. It's been hard (I've never taken so many supplements in my life! Ha ha), and it has been frustrating, but it is moving in the right direction.  What I'm doing is working....and I choose to focus on that.

My love to you all.

28 comments:

  1. Best of luck to you i know what you are going through im having the same issues!!!!

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  2. I wish you had your contact information on here somewhere. It is a breath of fresh air to have someone else know what I am talking about. Four years ago I had my new Mirena in (first one, no problems). This one was totally different (I even had a period with this one and didn't with the other one, but that was the least of my problems). A couple months after the Mirena was implanted I would wake up and as soon as I would stand up, my whole vision would black out and then s-l-o-w-l-y come back like a tunnel and then I'de be good...until I sat up too fast, stood up too fast, hung upside down (pilates), ran or worked out, etc. I was scared and thought that I had some sort of brain tumor...but I was just too scared to see a doc...I just didn't want to hear the news. Long story short...MRI said no tumor...no bleeding. I wasn't dying...so I exhaled. Then I had the dreadful spinal tap...not fun at all and was horrible. Yep, I have extra fluid building up fast in my brain. I said all along I thought my birth control had something to do with it...but three docs denied it. So, I did some more research and googled the right thing this time and found a direct connection with Pseudo Tumor and Mirena (well the main ingredient in Mirena)...I had no idea others were going through this...I felt all alone because four years ago there was nothing on the web about this.

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    1. can you email me? Cposorski19@yahoo.com this is exactly my current situation i got mine in may 2012 june i started having issues i just now got the official diagnosis and my primary doc obgyn and the nueorologist think im crazy

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  3. This sounds like exactly what happened to me!!! In September 2010 I had Mirena inserted. (my first one) I noticed problems with my vision in the summer of 2011 but I kinda put it off thinking my blood pressure medication was bringing my pressure too. I would loss my vision when I stood up, bent over, or even getting up in the morning from laying down all night. In August 2011 I had my routine eye exam and the doctor was asking me some really weird questions. (but now they made sense) She was asking if I had problems with losing my vision at all. My response was "yeah". She then told me I had papilledema in both eyes and wanted me to see a specialist. At my next appointment I had MRI, MRV, and MRA no tumor found. (thank god!) Next up was a spinal tap and my opening pressure was 36. By this time I had done lots of research about pseudotumor cerebri and its causes. I kept coming up with Mirena (levonorgestrol) is linked to PTC. With this information I took it all the doctors I was seeing at the time. Over and over everyone told my the same thing. "Oh that's not the cause of your PTC, I've never heard of such a thing" Even my OB/GYN! I am a firm believer of you are your own advocate. I had my Mirena removed soon after my spinal tap and will never look back. I still am living with all the symptoms of PTC. I currently am taking Diamox Sequels 1500mg daily, Potassium 20 meq (because the Diamox removes potassium from your body) and pain medications for the headaches. I wouldn't wish this on anybody!!!

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  4. I have experienced the same problems with the mirena. Was fine..., had one placed in September 2005. Not long after, tons of headaches. I was prescribed Topamax and went on with life. Had daily headaches, some days really bad. Vision changes etc. Then in September 2011 I had that one out and another one placed. OH MY GOODNESS! I can only say that I am living a horror show with the headaches that I have. I had it removed because we were considering having a child..... only recently did we learn of the link. I can't get it under control now. In two days, going to see a neurosurgeon for possible VP shunt. Can't take it anymore. And I agree.... would NOT wish this on anyone. You can find me on facebook at www.facebook.com/minisfree

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  5. I'm a victim as well. I did have a VP shunt placement in December 2008 but I did not want to remove the IUD... When I did well I got pregnant:) The thing is when you go into labor you actually are supposed to have some increase in cranial pressure... which i'm not capable of due to the shunt. Not my favorite thing but I do have a really cute boy out of the deal. I see so much on the lawsuits for Mirena but nothing in there for people like us... feels wrong.

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    1. What is a VP Shunt? And after you had the Shunt put in do you now have less Spinal Fluid going to your brain?

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  6. I had the mirena coil fitted in dec 2014 and started getting headaches, then weakness in limbs, neck problems then my optic nerve in my right eye went. I am still waiting for the neurological doc appt have had mri and blood test done. My gp said no tumours in brain but cant give other results.

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  7. I had the Mirena inserted Dec 2009, 6 wks after the birth of my second child. Unknowingly, I suffered many of the side effects of the Mirena in the first few months, but chalked it up to post-partum issues. 4 months after insertion, I woke up one morning with blurred vision in my right eye. I went to my eye doctor thinking I needed a new prescription. With my glasses on, I could barely see the "big E" on the eye chart. My eye doctor was freaking out almost as much as me. He did a bunch of testing and then referred me to a Neuro-Opthomologist for additional testing to rule out brain tumors, MS, ect. My MRI showed damage to my optic nerve. At first, they thought I had Optic Neuritis, which is an early sign of MS and transient ,but it never resolved. After some experimental testing and new results, I was referred to a Retinal Specialist. The first question he asked me, is if I was on birth control (no one had asked me that). I told him that I had the Mirena and he said that was it! I had the Mirena removed the next day! He also sent me to a different neurologist, who after doing a spinal tap, ruled out MS. My official diagnosis is Ischemic Optic Neuopathy (mini-stroke to my optic nerve for my right eye), which usually only effects elderly people. 4 years later, there is still no correction for my vision problems. At the age of 37, I am legally blind in my right eye thanks to the Mirena! I am thankful that the stroke was not worse and that I still have my left eye, but lawyers are saying that because they haven't heard of many similar cases and because I didn't require a surgical removal of the IUD, I don't really have a case right now. Very frustrating. What I found interesting from reading some of your earlier blogs, is about the Vitamin D deficiency. I also suffer from this and now take supplements...

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  8. I can't believe I just read my life so eloquently written. I've been through so much and today I googled "Life After Mirena" because I had mine removed only a few hours ago. I worried that it would hurt as much as the insertion did, but it didn't! I was hoping to find out what kinds of benefits would befall me now that I've gotten rid of the tiny little foreign object that was ruining my life. In addition to the numbness in my brain and in my limbs, several MRI's and the fear of severe neurological issues and MS, I've been on 5 pills a day (including prescription pain killers) just to manage the migraines. When I left my doctor's office and got into the car today and as my husband drove me home, he asked me how I was feeling and I could honestly tell him that I felt "lighter". That was my overall feeling and as we got closer to home, I swear I could feel my head tingle and a sense of something awful leaving that part of my body. These are the strangest sensations I've ever had, but even a few hours later, my joint pain is better and I'm getting around so much betters than even yesterday. I'm getting ready to walk the dog and I can't wait for the rest of the good stuff to happen in my life after Mirena! Thank you so much for your blog :)

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  9. Wow, this is so interesting! I was diagnosed with PTC about a year and a half ago. I had no idea that there was a link to the mirana until now!

    I have an upcoming appointment to remove the IUD now, however, am wondering, did any of your symptoms go away after the removal??? I'm terrified, what if this is permanent?!

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  10. Wow, this is so interesting! I was diagnosed with PTC about a year and a half ago. I had no idea that there was a link to the mirana until now!

    I have an upcoming appointment to remove the IUD now, however, am wondering, did any of your symptoms go away after the removal??? I'm terrified, what if this is permanent?!

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  11. I was 21 when I had the iud implanted it was 2006 and my on told me it was this new wonder birth control no periods no side effects so naturally I said sign me up at that point after my first child I didn't know what I was saposed to feel like looking back now I felt like crap the whole time after awhile I started having bad pain in my feet and I let it go making excuses I gained weight or I work on cement floors .,, until it got to the point where I was having severe difficulties walking so I went to the docs they said I ha plantar fashieitis and sent me to a specialist who took a look at my feet and said there was nothing he could do because I had high arches and then tried to sell me hundreds of dollars worth of crap that, and I quote " might help for a little while" he didn't do any testing or x. Rays ....so I manned up. What else could I do? Then a year or so later I saw all the law suits rolling and got right on having it removed it had been about 6 years at this point. After my periods were terrible and my feet would get really bad right before (I blamed water weight) then I started having problems with swelling in my arm every now n then dos would say tendinitis and I would carry on ... Then a year ago my arm swelled up and did not stop the pain was awfull and they sent me to a hand specialist he put me through the ringer with tests and would schedule my appointments months apart and my last appointment after an mri I was sitting in his office he examined my arm. I told him about the numb tingling pain and the weird little shocks and he said hmmm... I do t know maybe one of your bones is longer than the other ... Needless to say I didn't go back I was so angry I cried and scheduled an appointment with my regular doctor at this point I noticed my arm would also get really bad right before my period and stay bad during I'm pretty sure those are the worst 2 weeks of my life every month. All my doctor could say was that's weird and finall I ended up seeing a pa and tried a low dose birth control thinking maybe it was my hormones messed up from the iud .... It was the worst expierence of my life everything escalated 100% and I linked the pain in my feet to my hand so she sent me to a neurologist who it took another four months to get an appointment with so last week she diagnosed me with neuropathy ... I still can't shake the feeling that this iud had something to do with it I'm seeing the pa again on Monday because my blood pressure is high but I plan on having her run the silicon testing and see what happens maybe one day I will feel better

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  12. I had the IUD in 2008, 9 weeks after my daughter was born. I started having headaches, blurry vision, ringing in the ears, little things floating in front of my eyes, etc. I went to the Dr more than once and was told that it was low B12 or some other issues so I quit going to the Dr and just decided I would have to deal with it. My vision kept getting progressively worse. I finally found an eye doctor who did not cost a lot so I went to him. By this time my vision was horrible. Due to how bad it was he suggested I do the peripheral vision field test where you click the button when you see a dot. I bombed it. He then looked at the optic nerve and it was swollen. He started asking what sounded like weird questions at the time but later made a whole lot of sense. Then he told me that I had "a goofy optic nerve and he was unable to assist me with my issues". That was not a fun thing to hear. I was referred to an opthalmologist who performed a battery of tests. He said that he was almost certain I had PTC. I was referred to a neurologist who did a MRI, lumbar puncture, etc and diagnosed me with PTC. I have been taking Diamox 1,500mg since July 2014. Most of the symptoms are better. The swelling of the optic nerve is better but the vision loss is still there. I now have 20/400 vision without glasses.

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  13. im just now seeing this post, I had no idea until today that my pseudotumor cerebri was caused by the Mirena I had in 3 years ago. 1 1/2 years ago I had to have a VP shunt placed in an emergency situation to keep me from going blind due to the papillary edema and pseudo-tumor cerebri. All thanks to my optometrist catching it nearly 6 months before that, that my eyesight was declining, but had to do further testing to get my insurance to cover everything. I have been living in excrutiating pain for the past 2 or so years, dizziness, nausea, lights flashing, pulsing tinnitus, etc. Just found out my shunt is malfunctioning and I am back on Diamox until I can get a replacement VP shunt in my head. Not a fun experience with a 3 year old, being a single mother, and you can't work. Hard to get on disability, etc.

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    1. I feel this so much :( 2 and a half years later im so dizzy. Pulsatile tinnitus in my left ear. My spinal tap two years ago said i was negitive for IIH but i dont see how when im still super dizzy.

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    2. I have spent years in horrible head pain. It turned out to be a csf leak, brain fluid leaking from a hole that blew through my dura. I had surgery to fix it 2 months ago. I now realize it was my Mirena. That Mirena is out..never again. The hell its caused me and others..it should be taken off the market!

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    3. I have spent years in horrible head pain. It turned out to be a csf leak, brain fluid leaking from a hole that blew through my dura. I had surgery to fix it 2 months ago. I now realize it was my Mirena. That Mirena is out..never again. The hell its caused me and others..it should be taken off the market!

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  15. Wow... I haven't even had my Mirena in for a week and I am making an appointment to have it removed tomorrow. I seen the lawsuit commercial on tv tonight which actually scared me and made me want to research more info. Glad I did cuz now I am terrified! I didn't want the mirena in the first place bit my obgyn assured me it was safe and most effective. I actually wanted the "rod" (placed in the arm) anyone has any thoughts on that?

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    1. I seen that lawsuit commercial too but it was already to late for me! Tbh I recommend not getting any birth control! All birth control is bad for our bodies being the fact that God didn't create our bodies to be able to bare a child for us to put something in it we know nothing about to stop us from barring that child. My best recommendation is to download the flow app and keep track of your periods and when you ovulate or to use protection orrrr you can wait until marriage to have sex....

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  17. I have been having problems for the past 4 years with headaches in the back of my head. I have gone to several different types of doctors and have also had several different types of tests. I have even resorted taking medication for anxiety, as one of the doctors indicated that stress can manifest itself in the form of headaches in the back of the head. Recently, I have experienced problems with my vision. I have tried to get the IUD removed a couple times by different doctors and they have all discouraged me from getting it removed, stating that the IUD is one of the most effective forms of birth control out there. After reading information today on the internet about how the Mirena IUD can cause Psuedotumor Cerebri, I am going to have it removed immediately.

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    1. Girl get that demon birth control up out you!!! If your obgyn is telling you not to get it removed you need to change your obgyn! It's your decision to get it taken out just like it was your decision getting it inserted all they can do is recommend things based off their own opinion, but what they cannot do it make a decision for you!!!

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  18. I had the exact same problem!!! I got the Mirena 5 years ago, but only had it for 3 years because I was reading on how a lot of females that get it end up miscarrying or become barring because of that birth control, so I was scared and got it removed. I started experiencing really bad headaches, loss of vision, getting light headed while standing up too fast, tingling in limbs, ringing in the ears and dizziness, but didn't even think it had anything to do with the birth control. I didnt think nothing of it until I went to get my contacts and glasses renewed and they did the eye exam and told me that I had papilledema in both eyes and that it might be because I may have pseudo tumor but I need to go get an MRI to make sure it wasn't a real tumor and thank God it wasn't. So then they told me to go see a neurologist. I didnt need to get a spinal tap thank God. My neurologist told me that it was strange that I was diagnosed with pseudo tumor because usually its common in people that are over weight...so for the longest time I was wondering what may have caused this to happen to me..when one day I was watching TV and a commercial came on and it was one of those lawsuit commercials that was like "if you had the Mirena I.u.d and have gotten pseudo tumor you may be entitled for blah blah" I was like omg!!! Now I'm reading all of these stories and it gives me clarity and relief ! Stupid birth control. I'm glad I took it out within 3 years instead of keeping it the whole 5 years. I should of gotten it removed sooner but what's already done is done and I can't go back and dwell on the past but I can continue to share my story and warn people about this killer birth control! God bless you and all going through the same thing!!! We may be the unlucky ones that had to go through this but we are the blessed ones that survived it to live on and tell people about it!!!

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  19. So are you saying your Neurologist diagnosed you with the PsuedoTumor Cerebri without doing a Spinal Tap?
    And, did you contact the lawyer?

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  20. I am so glad that I found this, I thought for sure I was alone in what was going on with me. I had the Mirena put in after my first child and had horrible problems, when I had it taken out I found out that it was not placed properly and causing major bleeding at the time. Well when I had my second child, my OBGYN suggested that I try thee Mirena again. I agreed and we placed it. I thought all was fine. I suffer from Migraines and thought nothing of the "headaches" I was getting, but now that I look back on things, they changed drastically, mine have ALWAYS been on the left side of my head and they changed and were more focused on the right side and especially behind my eyes. I worked with my doctor for about two years with many medication changes and no relief. I tried EVERYTHING, I even went and had the piercing done on my left side to try to help and OH my that solved my pain on the left, but not the right. So within the month of getting my piercing I went and had my right side done, and the next day all hell broke lose in my life. I could not get out of bed, I could not work because everything spun and I got horrible double vision and tunnel vision when I would stand up. I kept getting pain in my right arm above my elbow and then my whole back and neck hurt. I went to the Urgent Care clinic and the ER in such pain, but once they saw I suffered migraines that all they wanted to do was give me pain pills and muscle relaxants, even though I kept telling them it was not a migraine. My primary doctor was trying everything to help me, he sent me to physical therapy to try to relieve the pain in my neck and back, but nothing helped. This about the time that I started to have blank spots in my vision and he suggested I go to my Opthamologist and get checked out. When he looked at my eyes he saw the papilladema and immediately knew what it was. He contacted my doctor and we got an MRI and Lumbar puncture and referred me to the Neuro-ophthalmologist. The MRI was clear, but my Lumbar reading was extremely high. The Neuro doctor put me on Diamox and Potassium to bring the pressure in my head down and ordered an MRA to rule out a blood clot. Well fun times for me, I have a blood clot and the medications put my Iron and Potassium at dangerously low levels and I was hospitalized for a week and given several blood and potassium infusions. I am now out of the hospital for 2 months, but am still battling everything. The medication is not bringing down the pressure and they are hesitant to put in the VP shunt because of the blood clot that I have. I have been told that it might take anywhere from 6 months to a year before my vision will stabilize. I am so frustrated with all that has happened, I am now told that no matter what I cannot get pregnant again because of the risk for blood clots and I cannot do any type of birth control because of the risk for blood clots. What am I to do, I am now having to look into having my husband get a vasectomy because they will not tie my tubes or do a hysterectomy on me because of the blood clots. My medical bills are piling in and now I get to come up with a way to pay them as well as all the bills for my husbands Type I diabetes. I am lucky to be here and I am grateful for that, but I should have never had to be in this position, This is something that needs to be out there and women need to know the risk. I have even seen another IUD out there that is basically the same thing as the Mirena and doctors are suggesting this to women. I wish there were more answers than just the questions that we all are left with. Even with all that is going on, none of the doctors are willing to say that the Mirena is the cause of any of it.

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