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  1. #1
    Join Date
    Mar. 11, 2011
    Posts
    386

    Default Running scared (Craniotomy)

    There really isn't any point to this thread, I just needed to write down my feelings and put them out there. Something theraputic about just letting the words out...

    I’ve always prided myself on being a very brave person; even when I was younger I never ran away from things that scared me and always owned up to my mistakes be damned the consequences. But a month ago I was diagnosed with a brain tumor… a low-grade glioma, probably benign (thank God) in my right frontal lobe. Finally I feel like my bravery is failing me. My neurosurgeon wants to go straight in and remove it, and though I am tempted to agree with him I can’t shake the fear that something will go wrong… that after surgery I won’t get better, or I’ll be worse.

    I've been debating a second opinion, but it doesn't matter what that person has to say. It's a tumor. We know this to be true. We either cut it out now or wait and watch. If we wait, I'll still have all the symptoms and be miserable.

    If I get the craniotomy, I have a chance to set my life back on course. I was dismissed from University because my grades were so poor. I want to go back... going back with letters from my doctors would give me an advantage I wouldn't have otherwise. A promise that I'm better now the tumor is gone.

    I don’t feel as though I have anyone to talk to… no one who understands what I’m going through, to whom I can explain all of my thoughts - all of the confusion and uncertainty that comes along with brain surgery. My parents are on board with Dr. Hotshot and want me to get the surgery. I’ve tried expressing my feelings to them, but they can’t seem to “get it.” We don’t have a great history of being able to talk about things. When I was sixteen and told my father I wanted to see a therapist (for depression) he laughed at me. Ever since I just haven’t been able to talk to them, and it’s been a recurring pattern that they don’t ever take me seriously.

    My best friend and I started to drift apart when she changed her major in college, and now she’s moved out of state. We don’t really talk anymore, and I don’t have a “best friend” anymore. The moms at the barn are always wanting to know how I'm feeling, and it's easy to talk to them about all the basic stuff... the conversation usually ends in "I don't know what I'm going to do."

    If I do get the surgery, I run the risk of losing my job. My boss just hired a new girl from the university to take my place. She’s nice but is grating on my nerves (very long-winded and likes making excuses for herself) and I know it’s because I feel threatened by her. My saving grace is that she’s inexperienced. While I’m recovering, my non-horsey father is going to take care of my four beasties for me and that makes me completely uncomfortable (one injured, one geriatric, one super hyped-up TB)… I don’t know how long it will be before I can manage barn chores. I’ve heard of people getting straight back into work within a month, but some who were out for five or more.

    My inner ten-year-old which has been hiding away for all these years is screaming at me to run away and ignore it all. I’m not sure I’m brave enough for this.



  2. #2
    Join Date
    Dec. 31, 2000
    Location
    El Paso, TX
    Posts
    12,589

    Default

    Sending hugs. It IS scary to face that.
    I'd suggest the 2nd opinion. And really TALK to the DR. Try to come up with a list of questions for him/her about what the procedure entails, recovery, complications, success rates, how many similar surgeries they've done etc. See which DR you feel more comfortable with. And google the DR's name and contact the medical licensing board to ask about complaints/malpractice suits, any license suspensions, etc. And I would check on the same in any other states they were licensed in. And find out if they are on staff at other hospitals in the area to make sure they are in good standing.

    There used to be an organization (US Rider? SafeRide?) for equestrians that would provide assistance with horse care for injured riders. They had people that were horsey that would help care for people's horses while the caretaker recovered. Maybe try to look into that, and see if that is an option for you. Or put an ad out for someone horsey that could help out in return for small pay/riding priviliges, etc.


    2 members found this post helpful.

  3. #3
    Join Date
    Jun. 14, 2006
    Location
    VA
    Posts
    11,372

    Default

    Jingling for you. I have nothing. No experience, no words that would be good. I can only jingle for you.

    I wish you the very best.
    A good horseman doesn't have to tell anyone...the horse already knows.

    Might be a reason, never an excuse...



  4. #4
    Join Date
    Mar. 11, 2011
    Posts
    386

    Default

    Thanks, jingles are appreciated

    The Dr. I'm seeing is Ali Krisht; he's ranked in the top 1% of neurosurgeons, and the only complaint I've heard is that it's a long wait (almost always an hour behind). I would also complain that his students who follow him around make you feel like a bug under a microscope.

    He's done a lot of craniotomies. When we spoke to him, he admitted that he'd only seen one other like mine (between the two hemispheres), that the surgery was successful, and that it would be easy to get to. So sort-of reassuring, but at the same time, not.

    My neurologist recommended either Mayo or Cleveland for a second opinion. He's out of town until March, so it'll be another month until I can see him to talk about that. I don't know what he's doing for a month, but I hope he's having more fun than I am



  5. #5
    Join Date
    Aug. 11, 2008
    Location
    Northeast PA
    Posts
    1,456

    Default

    Ditto the second opinion.

    I am going for a craniotomy and a laminectomy (yeah, that might be spelled wrong!) on the 18th for a Chiari Malformation. I also have a shadowy bizarro thing on MRI right between some sort of axis that they will investigate while in there a bit better. I cannot/will not live with these symptoms, and am a big "let's fix this" type of girl.

    I however have full faith in my neurosurgeon as he has done a ton of my procedure, and has operated on numerous family members for other things as well.

    Jingles to you with whatever you decide.



  6. #6

    Default

    If you don't like the students, you don't have to allow them access to you, even if it's a teaching hospital. You have to right to allow only the attending to see you. I've done both, depending on the circumstances.

    Even if this neurosurgeonn is the best in the country, there are other excellent surgeons in the country that you may feel more comfortable with, so that second opinion is crucial.

    Do you have a pastor/rabbi/other religous support person you can talk to? That resource could be an excellent sounding board for you. Or maybe there are support groups out there for people who have gone through this.

    As for the horses, maybe try to find a 4H'er or Pony Clubber who could help.

    And with regard to your job, check with your state's Labor and Industry department. It may be illegal for your boss to fire or downgrade your position if you are on medical or FMLA leave.

    This IS scary, and it's true no one else understands exactly what you are going through. But that doesn't mean there aren't people you can lean on and get support and love from. You always have COTH.
    http://www.tbhsa.com/index.html

    Originally Posted by JSwan
    I love feral children. They taste like chicken.


    1 members found this post helpful.

  7. #7
    Join Date
    Feb. 6, 2003
    Location
    NorthEast
    Posts
    24,508

    Default

    I know nothing about brains and/or tumors...but maybe this will help:

    2 years ago my sister had an enormous brain tumor removed. It all started with her complaining to her dentist that she had chronic jaw pain. Thankfully he insisted on an MRI after xrays showed nothing. Tumor over her right ear/top of the jaw.

    She had it removed...I'm sure it's not spelled this way but it was a shwanoma. 2" long, little bigger around than my thumb. Her complication was that it was wrapped around the nerve to her ear and the nerve had to be severed. So she did lose hearing in one ear and had some dizziness afterwards as her brain and body got used to that.

    Other than that...she was out of surgery 2 hours while her surgeon was reminding us she'd probably be out for a long time and may even be put into an induced coma. As he was explaining it she said, "I'm fine, but thirsty." Scared the crap out of everyone in the room!

    I have no idea how the types of tumors and locations compare...but I do know she was told mostly all of the worst case scenerios. But those aren't always considered the average...just worst cases. She's fine. And we can now make fun of her shoes if we stand on her right side.

    Anyone would be worried...a wreck...with brain surgery on their horizon. Anyone. But please also know that brain surgery does not always equal really bad things. My best thoughts for you!
    You jump in the saddle,
    Hold onto the bridle!
    Jump in the line!
    ...Belefonte


    1 members found this post helpful.

  8. #8
    Join Date
    Nov. 13, 2004
    Location
    City of delusion in the state of total denial
    Posts
    8,550

    Default

    I can't imagine what it's like to be in your position, but it might help to hear about one of my relatives, who had a successful removal of a malignant brain tumor a few years ago. In her case, it was "either it comes out now, or your life expectancy changes," and given that it had metastasized from her primary cancer there was no reason to expect that anyone would tell her differently, but she still got a second opinion. I can't say if it would be the same for you, but I know that she felt relieved in her choice after she had consulted two very good neurosurgeons, and it made us relieved as her family members that the homework all got done beforehand. Her surgery was very successful and she recovered well. I don't know whether a second opinion would possibly give you different treatment options, but it may very well give you better insight on the process of the surgery, the recovery, and any side effects. I second the suggestion to take a list of questions with you.

    Check with the labor board, as well, as dismissal from your job while you are on medical leave (and neurosurgery would definitely count as medical leave!) might not be legal.

    As for the four-leggers, I can understand your concern about leaving them with the non-horsey father, particularly the injured one! From your mention of "barn moms" I'm going to assume you're at a boarding barn. Would you be able to pay someone at the barn that you trust to take care of the horses for you? Maybe a couple of someones would be willing to help you. One of the wonderful things about the horse community is that we tend to take care of our own. It might be worth seeing if you can lean on your local barn community for help.

    Best wishes, and best of luck to you, whatever you decide.
    "I'm not always sarcastic. Sometimes I'm asleep."
    - Harry Dresden

    Horse Isle 2: Legend of the Esrohs LifeCycle Breeding and competition MMORPG



  9. #9
    Join Date
    Sep. 7, 2009
    Location
    Lexington, KY
    Posts
    17,784

    Default

    Second opinion, top surgeon in your area and let us know where you are. I'm sure some of us would be happy to check in on your horses periodically to make sure that horse novice Dad is on the right track. You'd be amazed how a non horseperson can step up when needed though.
    "We can judge the heart of a man by his treatment of animals." ~Immanuel Kant



  10. #10
    Join Date
    Jan. 4, 2008
    Location
    Columbus, OH
    Posts
    732

    Default

    Quote Originally Posted by Personal Champ View Post
    Ditto the second opinion.

    I am going for a craniotomy and a laminectomy (yeah, that might be spelled wrong!) on the 18th for a Chiari Malformation. I also have a shadowy bizarro thing on MRI right between some sort of axis that they will investigate while in there a bit better. I cannot/will not live with these symptoms, and am a big "let's fix this" type of girl.

    I however have full faith in my neurosurgeon as he has done a ton of my procedure, and has operated on numerous family members for other things as well.

    Jingles to you with whatever you decide.
    I also had a decompression surgery for Chiari Malformation, in 2004. Recovery was short but miserable. The only lasting pain I had was when I would sneeze and cough I would nearly lose vision and have a piercing headache for a few minutes. That would happen for the course of a month and then finally went away.

    While the surgery did not fix any of the pain I was having, it was a needed surgery to preserve my health into the future. OP, I can totally relate to you in that I was also dismissed from college for a period of time because of grades, due to pain, lethargy, depression, etc. I can only hope that whatever you decide helps you get your life back.

    FWIW, I went with Dr. Kosnik at Children's Hospital in Columbus, OH. Although I was 18 when I went in for surgery.



  11. #11
    Join Date
    Apr. 21, 2010
    Posts
    2,483

    Default

    Nothing I've been through even compares to what you are going through but I can relate on some level to how you are feeling.

    When I was 19, I got very ill at college. I went to the hospital and ended up there for 2 weeks, with a diagnosis of Crohn's/Colitis (an autoimmune disease). I was discharged and went home to recover. I spent a day at home and had to be readmitted for an additional 3 weeks, for a total of 5 weeks in the hospital. I weighed less than 100 lbs, and I was constantly teetering on the verge of having surgery. I didn't. Instead I was on so much prednisone that I gained 60 pounds and looked (and felt) like a non-human. I was so depressed. I stayed home that year, went to a local college. Didn't have any friends.

    I actually met my husband towards the end of that first year.

    I went back to school, and got sick again. This time, they said surgery was a must. Best surgeons around.

    Had the surgery that would change my life, better or worse. At the time, I questioned whether it was the right decision.

    I had 2 surgeries that year, and was out of commission for about 5 months.

    I recovered, got a job, and finished school at night. Got married, had a child.

    After having said child, I had complications and 2 years after she was born, I was in the hospital at least 4-5 times in a span of 6 months. Each one resulting in a 4-7 day hospital stay, a few day recovery, and then back to work.

    Surgery got tossed around time and time again. Dangling. I pushed it off. What am I going to do, how can I take care of my daughter, my horses, my animals, my family? Whats going to happen to my job? What if I end up worse off?

    I finally decided I needed to have surgery, which was successful, but set me back a few months.

    I'm fine for about 2 years and then became ill again, and had ANOTHER surgery. Another recovery.

    2 weeks after I went back to work, I became ill, and had an emergency surgery, which was done laproscopically and I only had to be out of work for 2 weeks. The easiest surgery by far.

    Yet that one rocked me the most. I felt like "WHY ME" I wondered why it kept happening, and for the first time, I wallowed in self-pity. Every time I got back up, something knocked me back down.

    I'm happy to say that in 2 weeks, I'll be 1 year surgery-free. And I am going to CELEBRATE!!!!

    I don't really have a "moral to the story". I do believe that I am grateful for all the things that I've gone through, all the things that have happened to me. It allowed me to be the person I am today, and I'm stronger than most people because of it! I appreciate things more. I try to live a better life. I'm not perfect but I really do try to see perspective.

    All I can say is don't look at all those things (school/recovery/horses/job) as roadblocks for getting the surgery. Eliminate that stuff in your reasons for/reasons against list. Get to the heart of it, and make a decision.



  12. #12
    Join Date
    Jan. 4, 2007
    Location
    TX
    Posts
    40,858

    Default

    A second opinion may not change what you have to do, but it will maybe explain to you what is going on with a different way to understand it, one that will make you better at coping with it.

    Getting your horses provided for while you are out of the picture would happen no matter why you are not there for them.
    Manage that right up front and let go, don't worry.
    It is time now to look after you first.

    Good luck with whatever you decide and try to live one day at the time.
    Provide for the future, but don't fret over it.



  13. #13
    Join Date
    Jul. 19, 2007
    Location
    Michigan
    Posts
    10,405

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    Quote Originally Posted by MyGiantPony View Post

    And with regard to your job, check with your state's Labor and Industry department. It may be illegal for your boss to fire or downgrade your position if you are on medical or FMLA leave.
    If I read the mandatory posted labor information at work correctly, if you give proper notice, it's illegal under FMLA to fire you. And you definitely have reasonable advance notice to give.



  14. #14
    Join Date
    Oct. 18, 2000
    Posts
    22,434

    Default

    I have no advice; I just want to wish you a complete and full recovery.
    Brothers and sisters, I bid you beware
    Of giving your heart to a dog to tear.
    -Rudyard Kipling



  15. #15
    Join Date
    Nov. 18, 2010
    Location
    california
    Posts
    4,221

    Default

    OP I'm sorry. I have something that always presents as a brain tumor but is not one. So I have read up on procedures today and it looks very promising. Remember Sheryl Crow had a brain tumor, she had it removed as well as Elizabeth Taylor many years ago. And no you cannot be fired or laid off when you are sick.

    Wish I could help with your horses.



  16. #16
    Join Date
    Jan. 10, 2002
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    Area VIII, Region 2, Zone 5.
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    6,678

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    Quote Originally Posted by JSwan View Post
    I have no advice; I just want to wish you a complete and full recovery.
    Same here. Your courage is in there; you will find it if you need to.
    Quote Originally Posted by Linny View Post
    Those martingales were so taut, you could play Ode to Joy on them with a comb



  17. #17
    Join Date
    Aug. 10, 2010
    Location
    Western NY
    Posts
    1,641

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    I've had a craniotomy. Seven years ago I got rear-ended and my truck got totaled and I got a concussion and whiplash. Just by chance, a brain aneurysm was discovered (not related to the crash). I was lucky! It had not ruptured, and was successfully clipped shut. I went back to work after 6 weeks and do not have any lasting effects. PM me if you want to know more.



  18. #18
    Join Date
    Nov. 17, 2006
    Posts
    3,904

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    Good luck with your decision and recovery. Remember there is a new thread on the Giveaways forum titled something like COTHers helping COTHers. See if someone in your area can lend a hand or supervise your dad. You could even post a help request and I know you would get some responses!

    Keep us posted.
    “Be yourself; everyone else is already taken.”
    ¯ Oscar Wilde



  19. #19
    Join Date
    Aug. 30, 2011
    Location
    Massachusetts
    Posts
    1,330

    Default

    RL- don't know about crainiotmy, but I do know about feeling alone, feeling like no one understands, and being unable to reach out to family.

    You are doing the right thing here Keep reaching out to friends (COTH counts!) let people know whats going on with you.

    If your anywhere near me, lemme know. We can grab coffee.



  20. #20
    Join Date
    Mar. 11, 2011
    Posts
    386

    Default

    Thanks, everyone

    For those of you who wanted to know, I'm located in northern Arkansas.

    FWIW, I really like Dr. Hotshot (just not his 5 students who piled in behind him lol). I would feel comfortable having the surgery with him, it's just... everything else. The what-if's. The during/after recovery. I can't stand to not be doing something. I don't like other people taking care of me or doing my job - it makes me feel icky.

    My dad... bless his soul, he's just determined to do it all himself. No matter how much I say I'd rather find someone else, he's adamant that he's going to move into my house (all of my horses are there, not boarded) and do everything. I'm trying to find a rider for my TB, so hopefully this person can keep an eye on things.

    Honestly, I'm stressing about nothing. I know it, I just can't help it.

    Thanks again for the reassurances Makes me feel a lot better.



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