Tuesday, January 18, 2011

11 days since shunt surgery for pseudotumor cerebri

Well today has been 11 days since surgery. It has been an up and down road for me. My family has given me patience to help me in this trying time. They were just as scared as I was before I had surgery. This procedure is supposed to help with my headaches to be reduced and vision to come back in small doses. Good news i had my staples out today, my daughter counted I had 39 staples, between my belly, head and neck. My condition is rare according to my doctor. I keep seeing more and more cases every day on line. I am an overweight, white, female with vision loss and suffers with severe migraines; also have a few other medical issues like polycystic ovarian syndsome and metabolic syndrome. So I was diagnosed with pseudotumor in november for sure by my neuro surgeon. My neurologist thought I had it all the way back in August of 2010. I had a six week migraine from July 4 th all the way to Mid August. I was a pain and very moody with my family. The task of functioning on a daily basis was very hard. So over the last few months I coped with the migraines and did my best to act like nothing was wrong. I wanted to be that strong willed woman who could stand through anything. I was wrong. This is one thing I can stand alone in.

All my walls came crashing down. I could not do this alone and still work, take care of my family and keep mentally stable. The last one was tricky. I had a few breakdowns at work and at home. i am not one to cry and whine that I am having issues or that I need help. But I did just that. I cried at work and showed my boss I could not traverse this alone. I asked for some extra time off to handle things and to rest and for Dr. appointments and ct scans and mri's. In October I was so sure I was going to have surgery I googled pseudotumor cerebri. Not a pretty site to read about on line well those linked  to Youtube.com and the  images were even more disturbing. I tweeted and facebooked that I was losing my mind. I cried myself to sleep while my loved ones were none the wiser. I found out about the way my head could look after surgery and thought they might open all of my head not just one side. I was set on this due to test saying I have small ventriculars.

My coworkers, god bless them calmed me down from my freak-out episodes. I love each and everyone of them for their concern and calming effects. My family was aware of the situation but not apprised of my mind being so out there. My partner worked nights so he was unaware misgivings. Being on two separate schedules made him think I was very well aware of the situation and there was nothing to worry about.   In December, my neurosurgeon so get ready for surgery. So I mentally prepared to be strong and stable for my family to keep them calm. I think I was the one who was more freaked -out. It was my head they were going into and my life that could be lost if there was a mistake. So my partner and I talked about the surgery and when it would be. After Christmas in the new year to make it easier on work and my family.We could spend the holidays together relaxing and enjoying each other's company.

So Jan. 4th rolled around I cut my hair all off for the procedures the next day. I decided to donate my hair to Pantene for their wig program. I went out with my coworkers for a hoorah. Then the next day I went to the hospital for a ct scan and some fiducials. These are markers on your head where they line up the scan to make sure they are in the right spot. To make sure your Dr. goes in at the right location. So i went home after my scan and spent time with the family. I didn't feel well. my stomach was upset I just had a light dinner. Then I read a book and went to bed. On the 6th , my daughter and step-son went to the hospital with me and my partner for me to have surgery for the shunt.

I checked in at the desk and had to wait for 30 mins to be taken back to the preop prep room. I got hooked up to an IV and then my family came back to visit. I watched some television and chatted with them. I then finally got rolled back to or. I remember my nurses telling me to breathe the oxygen and then them discussing oxygen bars in vegas. Next thing I know I wake up in the recovery room and asked for my partner I wanted him. I felt like I had to know he was there. They said no one was allowed back there in that area to visit but I insisted, i visited as coherently as you can just out of surgery and then they took me to my room.


My head felt like the skin was stretched so far that a gremlin would come out yell surprise. I still think my skull looks like a klingon with the ridge from the box and then the tube coming down the side. I was in the hospital for one night and then I was able to go home.I was so happy about going home. I looked like a drooling person in the car looking out the window. I hit my head getting out of the car. That was painful. So I spent the next week in the house resting and sleeping the entire day away  healing. The swelling went down I look a bit less tragic in my opinion. The pain subsided, well most of it, I would occasionally have pain in my side and belly from the shunt. Then they called and said I needed to go to my primary care physician at the original hospital I go to for a sonogram because they found ovarian cyst during my ct scan at the hospital after the surgery checking on my shunt placement.  So I drank too much water and my shunt started hurtung but hey they could do the sonogram apparently the pain in my abdomen was from the cyst one had ruptured. Owwe.

So today I visited my dr. I had my staples removed. They did not react well to my skin. I turned pink in certain areas. I have to keep the incisions clean and let them dry to form a better scab. I go back in 3 weeks for a check up. But this is day 11 now 12 now headaches. My vision got better up close I have to take my glasses off because my vision gets blurry unless I take them off to read. Good signs.

Time for some real improvement during my time off from work for the next few weeks. Apparently I do not go back to work until March. according to my short term disability.

7 comments:

  1. I am truly moved by your strength and bravery. I too have had pseudotumor cerebri since April 2010. Mine announced itself during pregnancy and has been a nightmare since! I meet with my neurosurgeon on Thursday and am mortified! I actually have been searching for pictures online and thats how I came across your blog. I would like to give you my email in hopes of corresponding this week, maybe I can find some strength through what you have already overcome. RANDM.MOSELEY@GMAIL.COM...Michelle

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  2. Do you have any headaches from the shunt? I was diagnosed when I was 7 and I am 26 now. I have had 4 LP's done and doctors in california are quacks but I was born and raised in N. Carolina. I keep havin headaches all the time and won't prescribe me any narcotics for the pain cuz it gets so bad that I'm at the hospital once or twice a week. My primary and neurologist won't do crap and I'm seriously considering having a shunt put in. Please contact me at 562 395 8587 or by email/FB at unccgurl2005@yahoo.com. Thanks, Sarah

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  3. I thank you so much for sharing your story. I have pseudo tumor also. I am losing my vision and they want to put a shunt in I am so scared and cannot decide what to do.

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  4. I am better for having the shunt. I have regained my vision. I still get occasional headaches but far Less often and less painful. For me it was the right decision, much better than having spinal taps all the time.

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    1. Hi Coresa
      My daughter was recently diagnosed with this horrible condition and lost all her vision in a short amount of time. She ha had an optic nerve sheath fenestration and now we head back to the neuro for consult on a shunt. Just a couple of questions. How bad did your vision get and ow long did it take to come back and to what extent is your vision impaired? Had any problems with your shunt?

      Thanks for sharing your experience! Lisa

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    2. Lisa,
      My vision changed.quickly over a six month period. At fist i noticed minor.changes like glares and.fuzziness. Within four months i almost gave up my drivers license. I could not do well with distance and side vision. My blind spots were throughout my vision and growing larger quickly. If i had not had surgery when i did my physician said i would have been blind in another month or two. My shunt has been the best thing for me. I have had occasional checks with the neuro surgeon on my shunt and things always come back positive

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  5. I will getting my shunt pseudo tumor very soon....I am so beyond scared but its good to know im not alone :)

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