My story

[LBM]

I am a 30 year old female living outside of NYC. I am in my third year of residency in psychiatry. I am having a really hard time dealing with everything that has happened to me and just wanted to share it with others who can understand what I have been through because I don't feel as if anyone does. I had terrible right sided headaches for years that continued to worsen in intensity and frequency. I had been seeing a neurologist at my hospital for over two years and asked him for an MRI. He said I didn't need one and that I had stress/migraine headaches. He had me on at least three different migraine prophylaxis that did not work. My headaches were getting worse and I went to seek a different opionion. The first thing the doctor asked me was when was my last MRI. I told her I never had one and she ordered one for March 28th 2005. I had my scan and the next day I was called that I needed to come in that day. As a doctor myself I knew instantly something bad showed up on my scan. I have never been so frightened in my entire life. I saw my whole life flash before my eyes. When I went to meet with the doctor she told me I had a tumor but it was benign. As soon as I heard benign I took a big gulp of air and said, I can handle this. I didn't care, as long as it wasn't brain cancer. I had a dear friend of mine die two years ago from a malignanent brain tumor. My tumor was 3 cm and I had no symptoms other than headaches. I had surgery in NYC a month later. I went through so much more than I ever could have anticipated. My surgeons told me I would probably be in the hospital about five days. I was there 22 due to such severe pain. The pain I felt in my head is inconceivable and inhumane. I had spent so much time in bed I had to learn to walk again and when I did I threw up. I came home from the hospital and continue to this day to have pain in my head. It has gotten so much better. Now my new neurologist says I have occipital neuralgia. I lost all my hearing in my left ear and have tinnitus in that ear as well as mild facial paralysis. Nothing noticable except to me and my neurologist.  I often log on to this support group and find so much comfort in knowing that there are others who have been where I have been.I feel so lucky to be alive and no longer take things for granted that I used to like being able to walk, dress myself or brush my teeth. But at the same time I feel so overwhelmed by what has happened to me and every day I feel extremely traumatized and every day I feel like I am reliving a trauma. None of my friends understand how I feel. I've never looked better they say. I've lost weight due to stress and mostly do look happy on the outside because I am so grateful knowing things could have turned out so much worse and every day people are faced with more difficult challenges. But I still feel traumatized and anxious and alone. I just want to talk with someone who understands how I feel. If you have read this I appreciate it. I hope you are doing well.
Best wishes,
Lauren

[Sandyrat]

Lauren,
  I do understand how you feel.  I'm 27 in Baltimore, married and a professional and working on a masters in psychology.  I can identify with how frightened you felt, and yet so relieved.  Several weeks ago I had a routine CT scan (I've gotten migraines since age 6).  My doctor called me at work and said there appeared to be a mass, and that I needed an MRI.  I took off work and had the MRI done that day, but had to wait three days for the results.  Those were the longest three days in my life, as I ran scenarios through my mind.  On the third day I called the neurologist only to discover that whatever they saw was smaller than it appeared on the CT scan, and that it was either an AN or an aberrant vascular structure.  That's where I am now, waiting to see a neurosurgeon for his opinion on which it is.  Like you, I felt that as long as its benign, I can deal with it.  In fact, I'm preparing for it being that, because as a teen I had a benign tumor removed from my arm that the surgeon said I'd be prone to getting more. And my mother's side of the family has had several brain tumors, one cancer, two benign.  Thank GOODNESS my should be benign.  So my heart goes out to you, and I know just how you feel (well, not post-op, but I CAN identifiy with the horrible headaches, i.e. lifelong migraines).  Best of wishes to YOU! 

Sandy 

[jw]

Wow!  Hi, Lauren.

That's quite a story.  You've suffered for quite some time.  The good news is that the cause was discovered and fixed, and that your headaches are getting better.  However, you're still going through quite a bit, and there's still a lot from the past to deal with.  (I'm waiting for an MRI to see if I have AN.)  You can't go through years of severe headaches, surgery, 22 days in the hospital, and everything else you've gone through afterwards and just put it behind you.  Of course, you're in your third year of residency in psychiatry, so I'm not telling you anything new.  It's good to have a good outward appearance, and know that people think you look so well, but inside is the true story, isn't it?  It's unfortunate that your circle of support (like friends) can't understand what you've been through, or that you're not through it all yet.  Of course, there's always people worse off and, yes, it could have been much worse for you.  However, that doesn't minimize your experiences.  And, with your educational background and everything else, you're no dummy.  Sure you're grateful for the good fortune you've had.  But your healing doesn't just involve thinking of how it could be worse.  You've had some pretty bad things happen to you, and the fact that you look so good doesn't change everything you've experienced.  I think, perhaps, your friends just have no ability to comprehend everything you've gone through.  Not that it's their fault, but if they hear you had terrible headaches, they only relate to their worst headaches.  I have no comprehension about what everyone here has gone through with surgery and recovery, but I try to imagine just how difficult it must be.  It's not that you're having your leg fixed up, it's major surgery around your brain.  Everything that it affects (hearing, balance, vision, etc.) is a major issue to deal with.  I'm overwhelmed just thinking about what happens post-surgery.  For the people like yourself who have gone through it, I can't begin to emphasize with you.  However, you have made it this far, and you're keeping a positive attitude.  Don't let that keep you from dealing with the trauma you've been through, though.  From where I sit, you sound like the type of person who will come through this ok, and take the steps to make sure it happens.  I'm sure that people here who have experienced what you have can offer much better support than someone like I can.  Your message was very moving, though.  I'm inspired by your strength and  courage to get as far as you have!

John

[wind6]

Hi Lauren, While reading your post some of your words struck that part of me that is hidden away from the people around me. Words like inhumane,inconceivable,traumatized, and overwhelmed. Those are powerful words and I believe very descriptive of the way I feel. Of course I do not show that on my outside but, I know that part of me lies just below my surface. In many ways I have become my own therapist and nurse. I have taken extra measures to surround myself with soft, comforting things. I allow myself time each day to curl up in that softness and focus on healing...internally and externally.
I am so glad you came here to post your story and my deepest wish for you is that here with people that truely understand you, you will be able to find ways to heal the traumatized inner person. I believe this experience will help you become an incredible doctor.

[okiesandy]

Dear Lauren,

I just read your post. Your story tugged at me. I am feeling so down and scared. I don't think there is anything I could say or do that would make you feel better. If I could I would. I will tell you that from the six months I have been dealing with this I have found nothing normal about this. Barberic is a work my daughter uses.

I really know what you mean about looking normal. I have yet to be treated and now as of today it has become urgent. I am so stunned I can't make a decision and turned to this forum for a little comfort with some like kind of people. Everyone tells me not to worry you will be just fine. How do you say you will never be just fine again? I am not saying you you can't be happy and have a full life. Sherry (Wind6) is still looking for the person she was. Who knows who we will be when the race is run? As for my self, I want to be normal and at point I'm not.

All through this I have had a very bad feeling about the outcome. Nothing has even approached normal for me. I lost hearing in 3 days in the AN ear. Then got Autoimmune Inner Ear disease that caused me to lose 50% of my hearing. Treated with steroids and got alot of the good ear hearing back. None in the AN ear. Today I had the second MRI and it came back as fast growing and cystic. The doctor told me that being cystic made the suregery easier. Then I got home and read there is more of a chance of perment facial damage with a cystic AN. Insurance has turned down out of network payment and the difference in time and outcome between here and HEI is like night and day.

What I am getting at is, you are not alone. Your friends may not understand, even your family and doctors ( I am ready to choke my husband tonight). However there are some of us that do understand. Sometimes on this and other forums we don't feel like we should vent. My perosnal opinion is it is the perfect place to do that. We should be able to with out fear of being labeled. You have every reason to be reaching out and talking about your outcome. As you may have read, sometimes it is time to weed our garden of friendship and find others who are more understanding. Enough of this. I am sending you hugs and good wishes. We all need those.