Ok, I realize that no one can truly make this decision without having to stare it straight in the face, but I am curious how my friends out here would make the decision I have been faced with. I will lay out all the details in this entry and I ask you to fill in the poll on the right hand side. Don't worry, I won't know who you are and you don't have to comment on your reasons unless you want to.
Here are the details (Note that I am basing this off of getting a third opinion that agrees with this second doctor. Meaning my tumor is half the size of an orange and he recommends surgery):
1. You have no problems that are in any way related to the brain tumor that was discovered. Furthermore, you've had six doctors now TRY to break you neurologically and can't.
2. You are a completely healthy 28 year old who has a wonderful husband and a 10 year old son at home.
3. You value your ability to go out in the yard and kick a soccer ball around, wrestle with your son, play football, ride roller coasters, and overall just live life. Your favorite past time is square dancing... all of which require that you be physically well and mentally cognitive.
4. No one can tell you if the brain tumor they've discovered will cause you problems in 6 days, 6 months, 6 years, or ever. They can not tell you how your brain tumor will affect you if and when it ever does.
5. The doctor believes with 85% certainty that he can remove the tumor in its entirety. Based on your own research, you know that even if this tumor is removed entirely, it can and WILL return.
6. The risks of surgery include 1% chance of stroke, 3% chance of death, 5% chance of paralysis. The chances of you coming out of surgery without some sort of deficit are slim to none.
7. You have problems with anesthesia that, even if they are aware of it, will complicate matters.
With these details in mind, I'd like to see what you would do and I'd love to hear your comments on it. I have been "asking" those around me these very questions and I'd like to see what you all think.
Thanks in advance.
Tuesday, October 23, 2007
I Am Curious of Something
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This is what I have: http://www.pseudotumorcerebri.com/
ReplyDeleteBased on the past 8 years of my life, I can tell you that having something in your head that does not belong there affects a lot more than than some docs would like you to believe. You don't have the spinal issues I do (the increased fluid goes throughout my brain and entire spine, and I now have issues with my lower spine because of it), but I do have vision problems, headaches, digestive issues when my pressure is REALLY high, mood issues, reproductive system issues, forgetfulness, confusion, fatigue, dizziness, weight gain, etc. The list goes on and on and on. My symptoms, though, are miniscule compared to others I've talked to.
It's an "orphan" disease (meaning very few people have it), so practically no research is being done to find out WHY it exists or how to treat it. They can't even tell me if it is an overproduction of spinal fluid or an inability to get rid of it the way most everyone else can. The treatments they tried on me were almost worse than the symptoms (I say "almost" only because those week long completely debilitating migraine-like headaches that could not be eased by anything short of a spinal tap or decapitation were the WORST). Some symptoms are very subtle and others sneak up on you when you aren't looking, but they are there and you can find them if you look.
I've talked to people who are now homebound and have to use a walker, people who have gone completely blind/deaf, people who have lost their families/jobs and essentially their lives from having to live with chronic pain...people (men and women) whose loving spouses eventually left them because THEY couldn't stand it anymore.
We don't have the option of removal surgery, only shunt placement (which I cannot have due to my allergies) and those shunts fail constantly so those people have to go back in every few years (on average) to have the old one removed and something else put in...much like you'd be facing.
I can tell you for an absolute fact that even without the allergies, I would NOT opt to get a shunt, but only because they CAN cause more problems than they would fix. Does that mean that I would recommend not having a tumor removed? No. I don't think anyone should have to live with these symptoms (my "false brain tumor," literally translated, is just like having one).
Would I wait for symptoms to show up before treating? Again, that's also difficult to answer because you may be having symptoms and just not know it. Infertility IS one of the side effects since that particular gland, located in your head, is easily squished (I didn't even have periods for a year). You don't feel any physcial pain with infertility, so it wouldn't be something you would associate with something growing in your head.
Flulike symptoms are also easily explained away, but they are a side effect, too. So is fatigue (especially for those who have kids and jobs).
My recommendation would be to journal everything...write down when you're tired, emotional, any aches or pains, anything that would indicate that you are less than 100%. Take your time and really examine your own body. Do you really not have any symptoms, or are they there but not something you would have associated with a brain tumor if you did not know you had one? Have them monitor the size regularly.
If it grows, cut it out..even if you have to keep going back in the future to have it done again. The life you enjoy now will NOT be the life you will have if it gets larger. I can guarantee that with 100% certainty. It's amazing what you can learn to live with, but there are some things you just do not want to have to try if you have the chance to avoid them.