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Old 01-18-2011, 07:24 PM   #1
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Brain Tumor Removed at Age 9, is it back? (I'm 23)

Hi everyone, my name is Ryan. I am 23 years old and I am finishing my last semester in college. I want to give you a little bit of background information about myself:

I was born premature. My due date was March 15th, but I was born December 1st. I was only 1 pound and 13oz, and had to spend three months in the hospital before I could come home. When I was about 8 years old, I started getting dizzy spells which were triggered by darkness. For example, if

I was sitting in the classroom and the teacher would turn the lights off, I would immediately become nauseous and dizzy. I had to be led to the school clinic several times. I also suffered from extreme motion sickness.

I went to an ENT who told me I was making everything up and should seek therapy. Now, this is an 8 year old child that he was talking to. Luckily, my mom did not believe him and we went to different specialists. I suffered from these spells of dizziness for close to two years before I was diagnosed with an epidermoid cyst on my left side of my medulla. From what I am told, it was “wrapped around my breathing nerve” and if it would have grown more, it could have killed me instantly one day. The size of the tumor was 1cm x 1cm x 0.8cm.

After the surgery, I made a full recovery (eventually) and a follow-up MRI was done. The results were fine, and I was not scheduled to have ANY more follow-up MRI’s. I believe they did a complete removal of the tumor.

Right now, I am 23 years old. Lately, I have been experiencing slight dizziness (almost as if I were rocking on a boat) which has made me EXTREMELY anxious. I have had a few panic attacks and convinced myself that the tumor was back. I went to the family practitioner, who felt the back of my neck and said that I have a fair amount of scar tissue, but since it does not interfere with my head movement it is not a problem.

I also went and saw an ENT, because I had pressure inside my ears which I was attributing to the dizziness. The doctor said that I probably have an inner ear virus which would work itself out on its own. However, when I visited the ENT and described my symptoms, he said that this is not an ENT problem. If my dizziness were attributable to the inner ear, then it would be more of a spinning sensation than a swaying sensation.

So now I am still very scared. I went to the family physician to get some blood tests done (I’ve never had them before), to make sure this isn’t some sort of nutrient deficiency or blood-sugar problem. I would like to get an MRI, just to have the peace of mind that this isn’t the tumor returning. However, everyone seems to think that this is all in my head, and the tumor is gone.

My family doctor and the ENT have me believing that all of this is attributable to anxiety. It’s been going on since the first week of December. I am scared, and wake up thinking about this in the morning, and go to bed thinking about it at night. What do you guys think I should do? Give it time? Or try to schedule an MRI? Thank you in advance and I hope this is posted in the correct section.

 
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Old 01-19-2011, 09:18 AM   #2
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

Quote:
Originally Posted by Kasey443 View Post
Ryan, if all tests come out fine, I would suggest getting your neck and shoulder area checked out. This is the main cause of the symptoms I have, which is an off balance feeling, not feeling with it mentally, and only sometimes, a dizzy spells. The docs always miss this when checking me. The off balance feeling and feeling out of it mentally symptoms came on slowly and got worse. After a few weeks of suffering, I went to a doctor where I live, a GP, thinking there was something terribly wrong with me, this one did not know what the problem was. I suffered some more, before seeing the 2nd, I noticed my neck and shoulders, and upper back, were very stiff and sore when I went to rub my shoulders and brought on some of the symptoms, I then went to the 2nd doc, this one argued with me saying a problem with my neck and back would not cause the symptoms I was having ( did not even check my neck and back manually ) and put me on a muscle relaxer, I took these but they did nothing for my muscles. I already had an appointment with the 3rd doc, ( for my back ) a specialist in the spine, he actually checked my neck when I told him about my muscles and my terrible symptoms, and referred me to PT. The only doctors that I have had actually know this can be the cause of symptoms, were neurologists, orthopedic, and physical therapists. So please get this checked if the tests come out fine. Many people have a hard time believing this can be the cause, and just keep running to the doctor having everything else checked, and still find nothing, when it is simple to have this checked. I am not saying this is always the cause, but it is many times the source of the problem, and most often overlooked, yet simple to fix. There was a guy on these boards years ago, I was on here under the name Kamden, I felt very bad for him, he had been diagnosed with menieres disease, inner ear, and he could not work. He was still searching for help I think it was 2 years after being diagnosed. Long story short, because of his symptoms, it sounded to me like the problem lay in the deep muscles of his upper back and neck. I asked him to go back to his neuro., and what to have checked, he did, and was shocked and thrilled at the same time, when the neuro. pressed on certain areas and it brought on his symptoms full force. He found out that day that he did not have it, and was then referred to physical therapy. Like I said, I am not saying this is always the cause, but it should always be ruled out when nothing else can be found, as it is simple to fix. Good luck to you.
I figured I would stop taking over wildcat's thread with my issue

I have had stiffness in the left part of my neck, to where I have to "pop" it multiple times a day. When I start rubbing around my neck bone, I find a place that sort of pops into place when I push against it. However, none of this messing with my neck seems to change any of my symptoms, and I have had these neck problems for a few years now. However, it still could be a pinched nerve, or something of the sort.

I had my GP feel around on it, and he touched a few places and asked if it hurt, which it didn't. I also got him to feel the area to the left of my neck (where the bottom-left portion of my brain it), where the surgery occurred. There is a bump which he said is scar tissue, and as long as it's not restricting my movement at all, then it shouldn't be worried about. This "tight" sensation is not so much in the area where I had the tumor operated on, but below it, in my actual neck muscles and bone.

Should I go to a neck doctor? Or a neurosurgeon? Or a spinal doctor?

I am tempted to go back to my GP (this will be the third time) and just ask for an MRI for peace-of-mind. I don't think they just give-out MRI's on a hunch, though.

 
Old 01-19-2011, 09:34 AM   #3
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

I would definately ask for another MRI......
this isn't necessisarily a HUNCH, it's a follow up!
do it! you will feel better once you know what's going on!

 
Old 01-19-2011, 12:34 PM   #4
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

That's exactly how I feel! Part of me DOESN'T want to ever have to go through another brain surgery again though, and that part of me would rather NOT know the results.

 
Old 01-19-2011, 01:04 PM   #5
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

I understand, but you've done this before....you've survived it.
that ALONE would be comforting to me.....
I know you don't want to do it again, and maybe (fingers crossed) you won't have to....but get the MRI and then go from there.....
above all....don't worry!
you're strong! you weren't even 2 #'s when you were born....you came into this world at a disadvantage and you conquered it.....
you're a lot stronger than you realize!
you ARE a survivor.....you have a lot of life ahead of you.....get this out of the way so you can relax and enjoy the next 60 or so years!

 
Old 01-19-2011, 07:11 PM   #6
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

Ryan, you have a conundrum. You may or may not have a problem and if you get an MRI, you may not want to know the answer but if it's all caused by anxiety, won't an MRI tell you one way or the other? And if it's okay, then your anxiety will go away? But if it shows a problem, then you have to face that all over again and you don't want that either.

I know your conundrum. I broke my neck 4 years ago and the surgery almost killed me. But every time I get more pain in my neck or head, I fear I have another injury or they'll have to open me up again and so I don't want to know what is wrong but at the same time, I know if I don't find out, the anxiety will cause more pain than anything else.

So I get the MRI. And so should you. Not getting it is like trying to swat at invisible flies...you can't see them so you can't get them. It is an exercise in total frustration. But if you get the MRI, then you can at least see the problem if there is one. It's concrete. You're no longer swatting at invisible flies.

If the news is bad you come here and get all the support we can give you. And I know you'll get lots of support form your college too. But if the news is good and it's all anxiety, then you are home free and can finish college and get on with your life.

Tell your primary doc that you want an MRI just to make sure and to give you some peace of mind so you can be the college senior you want to be. If he won't agree, see a neurologist ASAP. You deserve to know one way or the other so you can stop swatting those darn invisible flies!

hugs..........Jenny

PS...I got my MRI last summer and they did find a problem but it is not operable so I won that round...kind of. Let me know if you win this round....you won the first 2 but life is a 15 round fight!

 
Old 01-19-2011, 08:39 PM   #7
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

Thank you both SO much for your responses. I am going to speak with my primary doctor (hopefully tomorrow) and see if I can get a recommendation for an MRI. My parents think I'm crazy for going this far with it, and I even offered to pay the co-pay. I just want the piece of mind.

I think that this could be a problem in my neck, more-so than in my brain. So when I get the MRI, will it include my upper-neck as well? (Like the area RIGHT under my brain, to my shoulder-blades). Or would I have to specifically ask them to include this?

I just want to know one way or another, whether or not I have anything to worry about. I hope my GP will not try to fight with me over this, because as you have said this is just a follow-up MRI, even if it is 13 years later.

I was thinking about the surgery. I know they had to remove part of my skull to get to the tumor when I was 10. So if I DO have to have another surgery, won't it (ideally) be easier to get in there this time around? And if it is a part of my neck, I'm hoping that they could do some sort of minimally invasive surgery to get in there. I live a pretty active lifestyle: I love rock-climbing, being outdoors, hiking, and camping, and could not imagine my life without these things.

How have brain-surgery techniques/equipment advanced in the past 13 years? Surely some vast improvements must have been made in the past 13 years...does anyone know much about this?

I'm preparing for the worst, but hoping for the best. And I get my blood-work results tomorrow. I'll let you know if I have a nutritional deficiency (which could be causing the majority of these symptoms). My ears still haven't felt completely right since all of this started, so I'm hoping that my ENT just didn't have a close enough look to diagnose me with something. Hopefully this will all turn out well! Until then, I guess I just have to keep attending school, doing my Spanish homework and working towards my undergraduate degree!

And I know I have been through so much; my mom is ALWAYS telling me how tough I am, and how I am a "survivor" and how God has a plan for me...but I just don't think I'm that special! And if there was a specific plan for me, I feel like I would know it by now and be pursuing it. So I am in a very confused place right now.

And I forgot to mention: from age 16-18 I was smoking cigarettes, then I quit for nearly a year, and then I started back up at age 19, and smoked until I was 22. I have been off of them for a year and 19 days though . I feel stupid for ever picking one up, and I hope that since I did quit at a semi-reasonable age, that I won't develop lung cancer (or brain cancer) from it. I should have never jeopardized my life like that, but was pretty healthy otherwise. I am active, not overweight, and I TRY to eat healthy... that's a whole other topic in it's entirety; growing up in the 90's and eating microwavable hot-pockets every day after middle school was probably a terrible thing to do to my body.

Last edited by Ryan484; 01-19-2011 at 09:34 PM.

 
Old 01-20-2011, 06:29 AM   #8
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

one more thing out in left field here.....have you ever had your thyroid tested? a thyroid problem could be the cause of some of those symptoms too....the dizzyness/swaying feeling....
one other thing i thought i'd throw out there....i wonder if a chiropractor would be able to help?

 
Old 01-20-2011, 08:55 AM   #9
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

I just got my blood work results back, and everything looks good:

Chloesterol is 149 – should be under 200

HDL is 74 – should be over 40
Triglicerides are 63 – should be under 150
LDL is 62 – should be under 130

Sugar is 104 – she said is just over the high mark – nothing to be concerned about
Kidney, liver, Thyroid are all normal

And if I still have concerns I can see a neurologist. If I get an MRI and everything is okay, then I will probably try to quit worrying about this.. but that's a pretty big IF!

 
Old 01-20-2011, 09:00 AM   #10
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

those are some beautiful numbers on your bloodwork!

 
Old 01-20-2011, 09:06 AM   #11
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

Well thank you! And my doctor left a message; she said that if I was still concerned, she would recommend me to a neurologist.

BUT should I ask for an MRI before seeing the neurologist, so I have something to walk in with? I feel like it would help expedite the whole process.

 
Old 01-21-2011, 07:49 AM   #12
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

Ryan that wouldn't hurt.....why not call them and explain the situation, explain your concerns....

 
Old 01-21-2011, 09:55 AM   #13
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

I have an appointment with a neurologist next Wednesday at 10am. We'll see what happens!

 
Old 01-21-2011, 09:56 AM   #14
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Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

good luck and keep us posted!

 
Old 01-26-2011, 08:09 PM   #15
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Smile Re: Brain Tumor Removed at Age 9, is it back? (I'm 23)

Well I saw the Neurologist today at 10am. He laid me down on his table, made me look straight up at his finger, then held my head in his hands and moved it side-to-side, and backwards, asking if any of that made me dizzy (it didn't). I described the fullness of the ears, and how they're always popping, and told him that I had been completely asymptomatic up until this point.

He did another quick neurological test, and told me that he doesn't believe it is a recurrence of my brain tumor (in fact he's pretty positive about it). He said that if I want, I could have an MRI just to ease my mind. He did say to watch the dizziness, and if it gets worse or is accompanied by nausea or vomiting, then we should pursue an MRI and go from there.

He believes that it's just my inner ear problem still clearing up, and prescribed me some Alegra to help with that. But he told me that if I ever do want an MRI, I could just call his office and he would be able to schedule me one.

So as of now, I feel pretty confident that I do not have a brain tumor. If I have any doubts or fears in the future, I can get the MRI done and have my mind eased, one way or another.

I also got him to feel the back of my neck, which he said did not feel out of the ordinary. I do have scar tissue from where the incision was on the neck (the scar forms an upside-down L shape on the back of my head), but it should not be anything to lose sleep over. So I will now take it day-by-day, assessing my dizziness and seeing if this Alegra works to clear up my ears! Please wish me luck!!

And thank you guys SO much for being here and supporting people like me, through tough times such as this. It really means a lot and you are all a fantastic group of caring individuals. You guys don't know how much you have helped me through this entire process!

 
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