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Blog: Pseudotumor Cerebri and Pregnancy
by grace118

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  • Pseudotumor Cerebri and Pregnancy by grace118
    • Pseudotumor Cerebri and Pregnancy by grace118  10 y
      • Re: Pseudotumor Cerebri and Pregnancy   by  santeria     13 y     2,359     1 of 1 (100%)
      • Re: Pseudotumor Cerebri and Pregnancy   by  MRamos2262     10 y     1,923
        Subject:   Re: Pseudotumor Cerebri and Pregnancy
        Username:   MRamos2262     contact MRamos2262     email MRamos2262
        Date:   3/13/2012 9:48:54 AM   ( 10 y ago )
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        Hi Grace... I must say it's really great to hear about someone going through all the things I've experienced, but luckily for you, no where near as bad as myself. Unlike yourself, I've always have normal periods and I didn't really know what was going on when the headaches began. At first it was just a headache here and there and they grew more intense with each minute. I grew sensitive to light, lots of floaters and what I like to call my "Crack"... (there is an ending where one of my optical nerves actually died so I have this crack so to say in my vision, kinda like a windsheild with a crack in it... always in view never going away. I worked ALOT of hours and assumed that the headaches and vomitting was because of the stress I was under at work and all the reading and writing that was expected of me on a regular basis. I called and made an eye doctor appointment thinking that maaaaaaybe I just needed some glasses to help. I will NEVER forget that appointment... it's changed my life! Well like yourself I was told that my optical nerves were swollen. I was told that all the floaters and "foggy" areas was because of how bad they were swollen. The eye doctor with a horribly concerned (very scary for myself) handed me a letter and said I need you to go to the closest ER and give them this, they will know what to do. Sometimes looking back on that day it's hard to know whether it's saced my life or ruined it... I didn't open the envelope, not like I could even begin to attempt to read it with dialated eyes and I had to call a ride... someone to get my car and drive me to the hospital. In the ER I handed the doctor that came into the room the letter. Boy did they look worried when they read it. I had some piercings... those were all removed and the CT Scans and MRI's began. The doctors explained to me that I had a condition called Psuedo Tumor Ceberi. WOW Smack in the face let me tell you. I felt completely helpless and devistated. I just kept thinking I'm only 24 how did this happen... They doctor then explained that there were no visable masses seen in the scans and that the next step was a spinal tap. I've had a lot of medical things happen to me so the whole hospital thing wasn't anything new for me, just had been a real long time since my last admission. When my spinal tap was performed my spinal fluid level was 59. Once that fluid was removed it was like an instant relief... the pressure was gone and I felt so much better. Or so I thought. Over the next year in a half I had at least 14 spinal taps. Because of the amount of spinal taps I needed to begin getting what was called a blood patch. Once the needle was removed from my spine the blood wouldn't clot, causing me to be in even mooooore pain and the symptoms to be even more overwhelming. The doctors would take a vile of my blood and once the spinal tap was completed, the blood is injected into the hole where the spinal fluid is removed, forcing a clot. I've had about 7 blood patches to go with my 14 spinal taps. With my vision still slowly fading away I had no choice but to quit my job and seek more treatment. I finally found some amazing doctors in Cleveland. After meeting with the neurologist it was determained I needed to see a brain surgeon. In August of 2010 I had a brain shunt put in... 2 weeks later due to complications I underwent my 2nd brain surgery. The shunt seemed to be helping, until the headaches and vomitting returned. After all these signs began showing up again I also because having seizures. My life really was ripped away I thought. After being placed on medicines and rounds of trying this and trying that, my neurologist finally suggested a third and fourth brain surgery. This time it would be for a "brain grid." They want to put this thing in my brain which will provide the doctors with lots of information about which part of the brain has died and is seizing... When the grid is removed, the part of the brain that has died and is causing the seizures is removed when the grid is removed during what would be my 4th surgery. Scared but understanding that I had an extremely horrible spinal tap go wrong 5 months ago... my fiance and I sat down and determained that this brain surgery would be for the best... well at our doctors appointment 2 months ago we were told that the surgery can't be done because we're pregnant and everything will need to be placed on hold. Topamax is one of the meds I was on, due to the risks of birth defects and everything based around it we decided to stop that med along with others that could potentially harm the baby. I'm 4 months pregnant with my first child and will be 28 when I give birth. Besides being completely scared day in and day out, I feel completely hopeless. I've tried to keep all my doctors where I live because once I began having the seizures, my license was taken away. I was referred to a high risk doctor because of my medical history and I can understand why. What I couldn't began to understand is why this doctor repeatedly told me I needed to consider an abortion and that I need to have one. Beyond upset especially because the first time that came out of her mouth she was told it wasn't an option... after hearing it said 5 times later all my fiance and I could do was get up I polietly said I wouldn't be scheduling a follow up and I left her office in tears.... so here we are today... ALL my baby's needs have been switched to Cleveland. I am hoping that the visits with my doctors that already know me and my conditions as well as the high risk doctors at Rainbow Babies and Childrens will be able to help and be more for my having my baby. My only recommendation to you Grace is to most definitely see about a different med to help besides that topamax if you are trying to concieve. Oh.. and my pregnancy (besides being told a long time ago I couldn't have a baby) was completely accidental. No meds were used to concieve and it was beyond unplanned. It just happened. I hope this isn't too long and a bore for you. Good luck

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