Hi, I'm hoping to get some answers on what this could possibly be based on my symptoms and what my chances of survival are if it is a brain tumor. I'm really scared.
I'm 22/female now. When I was 14 or 15, I went to bite into my lunch one day and noticed that I couldn't taste anything. Then at 17, I started having random dizzy spells, which weren't really "dizzy" spells, but I didn't really know how to describe them. I'd just feel really off-balanced all of a sudden. Then, over the next 5 years, more alarming symptoms started showing up. I have a really bad stabbing pain in my head almost 24/7, and it almost always occurs around the same spot on the right side of my head. I feel off-balanced most of the time, have trouble concentrating (usually when under fluorescent lighting, I think), have memory problems (mostly short-term, but long-term as well), have had a few episodes where I smelled things other people didn't smell, have trouble remembering words and often will type the wrong word, have pressure or pain in my chest a lot, sometimes have shaky hands (this used to happen a lot more often, now it only happens once in a blue moon or when I get really scared about something), sometimes bright lighting makes my eyes hurt and sometimes it makes them feel unfocused (that's the best I know how to describe it), etc.
I know these symptoms all sound neurological in origin, but are they almost entirely certain to point toward a brain tumor? :/ I've had people suggest epilepsy, but I never had even a hint of issues with epilepsy as a child or throughout most of my teens.
Sorry to hear about your symptoms. Hard to say if they are due to brain tumor or not. I had a lot of hormonal problems with my pituitary cyst (no cycles, low thyroid, weight gain etc)
Have you ever seen a neurologist about any of this? If so have they ever ordered an a Brain MRI? Your could have symptoms of an inner ear/or sinus too because of the dizzy spells. Ever seen a Ear nose throat or ENT? The headache that you describe could be a migraine with a aura (the odor thing). If it is a migraine it is possibly treatable with medication and trigger identification/avoidance. A neurologist might be able to help you to at least rule things in or out, sounds awful.
I would be inclined to guess no, given that in that many years, more symptoms would have happened - it sounds to me like you have a massive sinus issue or something going on in that area though and it can happen without a runny nose. This is pure guess - you really need to see a doctor. Plus you have classic migraine symptoms - agree with Horsey. I get those - they bite.
I would go see an ENT. He is going to order a CT which is going to see the head anyway and pick up any tumors if they are there.
Like Horsey - I think and ENT is your best bet to start. Half headed headaches are classic for migraine and then you can work from there to get those treated. It takes a while to get the right set of meds - one to prevent and one to treat but then you should feel ooodles better!
Hi, Thank you for the comments both of you. No, I haven't been to a doctor about any of this. To be honest, I've put it off so long because, at first I was scared of what it was and my stupid teenage self thought that if I just ignored everything, it would all go away. Now I'm scared to get checked out because I figure that my body has to be complete trash inside after putting everything off for 7 or so years. I have this vision in my head of the doctor freaking out and asking me how I'm not dead yet with virtually every body system being screwed up inside of me. I know it's illogical, but it's where I'm at right now. I don't need people to tell me to go to a doctor; I already know I need to .
I am curious why people suggest an ENT for something that seems so neurological in origin. I had a few people say the same thing when I posted my question on Yahoo! Answers, and I don't quite understand where that's coming from.
Oh, and also about the more symptoms appearing, more HAVE appeared. :/ It was the loss of taste first, then a few years later the dizziness, then a year and a half later the headaches and balance problem, then the sensitivity to fluorescent lighting, then the phantom smells, etc. It didn't all just show up simultaneously.
While I personally have not experienced those symptoms, I do read often of other people who do on another forum that I belong to. For some, it is attributed to migraines. For others, they are attributed to seizures. And for some, they are attributed to tumors.
If you do not know where to start, your primary care physician could be a good place. He or she can order an MRI of the brain, with and without contrast. Based on those results, they can send you to the proper specialist. If you don't want to start there, you can see a neurologist. S/he would also probably order an MRI, and they can do quick, simple and noninvasive tests right there in the office to see if there are signs of problems like 1 sided weakness or balance problems.
As for your fears- there are many things it could be. Some benign, others more serious. Speculating about what it may be will drive you crazy and stress you out. I honestly think you need to go ahead with testing and get answers, good or bad. However, know that even if it is something like a tumor, it is not a death sentence. The world is full of people like us walking around with them. The most common type of primary brain tumor, a meningioma is benign. Doesn't mean it doesn't cause problems, because depending on the location and size it can. But many people go through life not even knowing that they have them, and they are often found incidentally or in autopsies looking for other things. Not saying you have a tumor, but want to encourage you a little to know that it is not a death sentence, especially if you find it, monitor it, and treat it as needed.
Honestly, and I know it doesn't really matter what my fears are if I have a brain tumor, I'm more afraid of the idea of brain surgery than the idea of it being a death sentence, although that of course scares me a lot as well. Any other area on my body aside from I guess my heart (but I'd even prefer that to my brain!), I wouldn't be so fearful about having surgery on, but the thought of someone messing with my brain, which controls virtually every function my body carries out, scares the heck out of me. My brain's kind of all I ever had; I was never good at anything other than schoolwork and more "cerebral" activities growing up, so if I lose my intelligence, I might as well lose everything. I think that if I had to have brain surgery, I'd rather just leave whatever's in my brain in there. But anyway, as I said, my fears don't really matter if I have a tumor growing inside of my brain.
Alas, we get a lot of *I think I have a brain tumor posts* and so far, knock on wood, no one has come back to say that is what they have.
If you posted the exact same think in neurology, then it is considered a duplicate, and duplicate posts are a violation of the TOS. Or if you put other stuff like links etc you have to read the TOS. The neurology board is very busy sadly, some posts go overlooked - it is not you. Most of us responding are felling patients - with lives etc. so it can take a while.
I think what actually happened was that I posted in the ask an expert neurology section. Still, at the time, the doctor over there was answering everyone else's question other than mine. It wasn't a duplicate post at the time it was deleted.
While we are certainly not lucky to have our medical issues, we are lucky to live when we do, as we have many options. Some on here have had endonasal surgery. I had to have an open craniotomy (8 inch incision) and it wasn't as bad as I had feared. There are neurosurgeons who specialize in specific types of tumors and specific locations of the brain. They even used GPS in my surgery to help guide them. It's amazing what they can do. There are non-surgical options like radiation and stereotactic radiosurgery. There's Gamma Knife, Cyber Knife, and proton beam therapy.
Once I knew what was causing my symptoms, I wanted it OUT. I do have another, but since it is not causing symptoms, we are just watching it.
I'm not trying to downplay the troubles brain tumor patients have, but I again want to emphasize that this fear should not prevent you from seeking answers. The reason my surgery was as successful as it was is because it wasn't in there too long. It hadn't had a chance to develop vascular connections to the optic nerves or adhere to the carotid artery. It was considered an early find, although it had been growing probably for at least a decade. And I am thankful that we found it when we did.
Thank you for your reassurance and an explanation of how many options are available. It's interesting that you say your tumor was growing for probably a decade since I've had several people tell me that there's no way I could have a brain tumor because it would have killed me after all of these years. I know that it's not the case since I've suspected that I may have a brain tumor for at least 4.5 of the 7 or 8 years I've been having symptoms and have been researching all of the possibilities, but it's amazing how many people think all brain tumors operate the same. I guess a large part of my fear of surgery is that I saw my mom relocate to have treatment (not for brain cancer) at a reputable cancer treatment center, and she only got progressively worse. I haven't heard too many brain tumor/cancer success stories, but I guess that's because the deaths that occur get more attention. I'm glad to hear that your surgery went so successfully! I'll report back here if I find out what's going on with me. Thanks again, everybody.
My daughter has a brain tumor and I agree even though it is very scary it is not always bad news . My daughters tumor is not cancerous even though they have not seen anything just like hers. She has had symptoms for a while before it was discovered but her pcp sent her in for a ct scan and a mri with and without contrast and I suggest you request one of those tests. I am not experienced on what is best for you as far as tests go but I know some of the people who have already commented on your post have helped me in a difficult time and they are very educated on this. I would request the scans that will be the only way to know for sure :) good luck and I hope you find answers and I hope there is nothing serious wrong with you .... My daughter goes to see the surgeon on October 5 and hopefully hers will be able to be removed and there will be no more problems and I am hoping and praying if you do have one that it will be able to be taken care of as easily and yes brain surgery is very scary luckily my daughter is only 5 and doesn't really understand but just imagine how great life would be without the symptoms if you do have one because her symptoms really disturb her day and she doesn't have all the symptoms you have so I can only imagine how it can effect your day.
Whenever there is dizzy/balance issues seeing an ENT is a good idea. The inner and middle ear plays a role in that area. If you have allergies your eustachion tubes can swell and fluid disturbances can result. It's very common. I just wanted to make sure that you had thought of this because many people don't and start the "I have a brain tumor" thought" cycle which can paralyze them from fear.
Since that is one of your more major symptoms that is why I asked, more to see if that was ruled out or in.
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