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Is it possible to have a brain tumor that a CT scan doesn't pick u...
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Is it possible to have a brain tumor that a CT scan doesn't pick up?

I've been progressively developing neurological symptoms over the course of the past ~nine years. There's a spot on the back, right side of my head (about two inches behind my right ear) that hurts excrutiatingly bad pretty much 24/7 (it does let up occasionally, though) and has for the past five years. Other issues that I have include feeling like I can't balance all of the time (I have to fidget around because if I stand still for more than a few seconds, I feel like I'm going to stumble), difficulty recalling words, writing the wrong word when writing something (like, I'll mean to type "minute" and wind up typing "clinic." Weird stuff like that), smelling a burning smell that no one else can smell, involuntarily biting my tongue when I'm drifting off to sleep, hallucination-like episodes when either really tired or about to fall asleep, vivid dreams that I don't think really are dreams because they occur within like 2 minutes of falling asleep (I've fallen asleep at 10 pm, had a really frightening vivid dream, and then woken up to see that it was only 10:08 pm), really poor concentration, a sensation of liquid in my head, episodes where my skin goes numb all over (more of a rubbery feeling than a complete lack of sensation), times when a random part of my body will go numb, and trouble processing new information. It's very difficult for me to read books or watch films because I forget which character is which and what has happened so far in the plot line. I just feel very cognitively deficient all of the time, and I wasn't always like this. I used to be so sharp, and now I find myself forgetting what I was doing in the middle of things.

My neurologist didn't detect any tumors or lesions on my CT scan, so he's basically concluded that I'm just making it all up because he thinks I'm too young (23) to have as many issues as I claim. He did say that he saw volume shrinkage on my scan and asked if I have a history of heavy drug or alcohol use. I told him that I have neither (I've never been drunk a day in my life even and have had maybe a total of 5 glasses of wine in my life), and he just said "Well that's okay, though. Some people just have that," and that was that. Personally, I think that, if I have brain atrophy, something has to be causing that and it didn't just happen on its own, but he doesn't seem to think it's anything to be alarmed about. He also completely shrugged off my concern that some of my issues may be related to a seizure disorder. I've also been to two GPs, an internist, a psychologist, a cardiologist, and an acupuncturist; with the exception of the acupuncturist who gave me herbs to try, they've all just kind of nodded their heads at me and then sent me home. It's remarkably similar to talking to a brick wall.

I'm so frustrated and don't know what there's left for me to do. I'm not convinced that there isn't something going on in my brain, but apparently trying to convince doctors of that is like trying to convince Rush Limbaugh to vote Democrat.
35 Comments Post a Comment
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171768_tn?1324233699
i would suggest a second opinion from another neurologist. Your symptoms do sound neurological but the possible causes are countless, ranging from benign to serious. So, it's not really worth speculating about what it can be. Was the CT with and without contrast? I wonder if an MRI with/without contrast would be helpful in ruling out certain conditions. How do you perform on the basic neurological functioning tests that they administer? Have they tried an EEG to rule out seizures?
To answer your original question, I know that for the type of tumors I have, MRI is more efficient in detection. However, without contrast, mine were completely missed. I do think that most tumors would be seen.
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Avatar_f_tn
The CT scan was just done without contrast because I didn't want them to inject the contrast into my veins after the nurse freaked me out telling me about all of the weird side effects it had...
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Avatar_f_tn
Sorry, submitted that before I was finished. No, I tried to explain to him that I was concerned about seizures, and he just said "Okay." I guess I perform on basic neurological functioning tests..he didn't do much. Just told me to smile, follow his pen while he moved it, and told me to resist while he put pressure on my arms and legs. His nurse also asked me some questions like the county we were in, the date, and how to spell world backwards....I was unable to successfully spell world backwords but did alright on the rest of them.
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657231_tn?1390151580
You probably passed the basic testing. CTs can show some things but MRIs can show other things - so an MRI with and without contrast would be ordered if the doc is worried. That contrast is different.

They have to freak you out - the real odds of issues are pretty low (and I tend to get a lot of side effects!) and it makes a real difference in the quality of scans. Just make sure you drink after to flush the system.
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Avatar_f_tn
They did order an MRI initially, but they ordered a CT scan instead because I had a massive panic attack when confronted with the idea of being in the MRI machine for so long. I just asked my GP for a referral to another neurologist yesterday because I feel like my current neuro rushes me and doesn't really listen, so when I go to the new doctor that I requested to see, I'm going to ask her if we can try an MRI again.
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Avatar_f_tn
They did order an MRI initially, but they ordered a CT scan instead because I had a massive panic attack when confronted with the idea of being in the MRI machine for so long. I just asked my GP for a referral to another neurologist yesterday because I feel like my current neuro rushes me and doesn't really listen, so when I go to the new doctor that I requested to see, I'm going to ask her if we can try an MRI again.
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171768_tn?1324233699
Honestly, the neuro probably doesn't have much to tell you since you refused the test he wanted- the MRI with and without contrast. Without that, trying to determine what you have is just speculating. It sound like the neuro did take you seriously and do the standard stuff and request the best imaging.
You can talk to the doctors about anti anxiety meds for the MRI. Lots of people take them.  
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Avatar_f_tn
No, if he took me seriously, he would have listened to all of my symptoms. He doesn't even know about half of them because he wouldn't listen long enough for me to list all of them during my initial visit. Thanks for siding with him, however.
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657231_tn?1390151580
Unfortunately, in this day of insurance and all - docs only get a few minutes per patient. It happens to us all that we only get a limited time and I find myself sometimes afterward kicking myself that I forgot to bring up x or y. What you can do is print up a list and hand it to him to scan - try to limit to very important points. Sadly, we only get a short time. You can try to send a fax to the doctor now that you are an established patient and ask more questions and see if he has more input, ask for the MRI and perhaps something about the seizures. If you are calm and put in data, and bring in someone with you to an appointment to back you up, sometimes that helps as well.

A lot of people cannot do the MRI without help from an anti-anxiety pill - it is pretty routine to have someone take you and get you relaxed while you are there. I don't do that but I fall asleep in the machine anyway.
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Avatar_f_tn
Interesting you should say that because I was advised by several people on a neurology forum NOT to bring a list with me. They said that doctors tend to dismiss patients who present a long list of symptoms as hypochondriacs early on, and honestly, this has rung true in my experience. I tried it with my GP, and she told me that all of my symptoms were just due to anxiety. I tried it again when I saw an internist, and he didn't even want to look at the list.

I'm not going to see the neurologist I've seen in the past anymore. I don't like him. I'm waiting to hear back from my GP about the appointment she's going to schedule with the new neurologist I requested to see.
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171768_tn?1324233699
Sorry you took my comment as though I am siding with the doctor.

Here is my experience-
With neurological symptoms, there are literally thousands of possible causes. To list symptoms without diagnostic imagining to back it is not useful to doctors. I have been in your shoes. I do sympathize. But until I had that MRI with and without contrast, there was no diagnosis and nothing else the doctors could do for me. They speculated MS. They speculated brain tumor. They speculated that it could be nothing. All of those options and thousands more were possible. I performed well on those basic neuro function tests that you received so I was sent on my way with the script for the MRI w/o contrast. I chose to not follow up for a year and a half. That was my fault, not theirs.

I think a new neurologist can be good to have a fresh start. But I honestly wouldn't expect a different outcome because what you describe is what I have experienced, and not just with a neurologist, but plenty of other specialists. As Rumpled said, it is unfortunately how the system works. I am sure that in your readings and discussions on forums, you have seen that so many people are dismissed as hypochondriacs and not even offered the MRI. I'm not telling you to allow the doctor to dismiss your concern. I am just saying that if you do not take the diagnostic tool they offer, they will dismiss you.

I can't tell you how many times I have had to take my healthcare in to my own hands and advocate for myself. My story is actually alarming.  My quality of life was deteriorating and in the end I was the one who found the right doctors and therapies on my own. My case is NOT typical so most specialists who work with my tumor and problems did not recognize what was wrong. But along the way, to get to this point. I had to play the game. I had to do the standard tests to rule everything out. I have wasted a lot of time and money to rule them out. But it was worth it in the end because it got me closer to answers. By the way, I also had to go the psych route to rule anxiety out as well. Now if it is suggested, I am armed to say that no, it is not anxiety. Any anxiety I do have is from not having doctors understand my problem!
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657231_tn?1390151580
It can depend on the doc for the list and it can depend on the content. Some docs want to have details. Some want highlights. It can also help to break down things into categories such as GI, gyne, etc type symptoms and track that.  

It does pay to get a feel for the type of doc before you hand out data as some may yes, see you as seeking or a hypochondriac but others will not.  I too went for evaluation to rule out anxiety and all but like many was put on anti depressants and stuff that really did not address the real problem.  

In the end, it is you that has to battle it all and decide who and what to do and  when you can put it together. It took me a long time.
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Avatar_f_tn
Thanks for the responses. I think what I'm going to do is just mention the symptoms that I'm most worried about and then continue to list more if she wants me to. I'm most concerned about the cognitive issues; I don't care that much about the headaches and chest pain and such, but the cognitive problems are pretty devastating. Quality of life...I have none.

Unfortunately, I already have anxiety disorder written on my file thanks to my GP. When I went to a psychologist, she attributed everything to anxiety, too. I told her I wanted to go home because I felt really sick, and she told me that I was just having a panic attack (I wasn't). So that contributes to my issues getting doctors to listen to me forsure. And it's not completely inaccurate. I am an anxious person, but I'm an anxious person because my body has been doing things I don't want it to do for almost a decade.
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657231_tn?1390151580
You have a couple of options.  Find another doc who will contradict thar diagnosis.  Go along so to speak, try the meds see if they work and if they do, that can help some symptoms and take that part off the table but will be unlikely to take all.  Of course the docs still tend to just look at the old diagnosis and go the easy road, sadly.

It is also helpful to bring along someone who knows you well so that person can vouch for you in a way that what the doc sees is that you are unhappy and anxious with the situation not with everything.  A good counselor should bring that out.  Mine did.
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171768_tn?1324233699
I can also relate to cognitive problems and its impact on quality of life. That can also contribute to anxiety. If that is your biggest concern, you can try to get them to send you for a neuropsych evaluation. That can potentially give insight into  where the problem lies. It missed the mark for me, but did give a lot of insight nonetheless.
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Avatar_f_tn
I think it would be kind of hard to find someone to vouch for me that I don't just simply have anxiety disorder because so many people in my life, after I've told them that my GP diagnosed me with anxiety, have been like, "Well maybe you should trust her since she's the doctor." It's easier for them to just think that it's that than entertain the thought that something more serious is going on, I guess.

Perhaps, however, I can get the new neurologist to counteract the diagnosis. I now have an appointment with another guy from the same neurology group because he can see me next month, whereas the woman I wanted to see can't see me until next year. I'm not mentioning the anxiety diagnosis to him. My guess is he'll see it on my record anyway, but I've made the mistake in the past of straight up telling doctors that I was prescribed Xanax when they asked if I was on any medications (although I explained that I've never taken it a day in my life. I kind of want to try it to see what happens). I feel like their ears close to other possibilities once they hear that.

I also saw that the guy I'm seeing is associated with some neurology & psychology association, so perhaps he'll be more apt to do the neuropsych eval.
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657231_tn?1390151580
I would also like to suggest that you get your GP to run hormone tests - hormones can cause a lot of anxiety symptoms and so getting those tests as well as basic minerals, vitamins, and blood counts - it can be weird things that cause anxiety. If your GP won't - find another GP.

Alas, your people have taken the easy way. Hear that a lot. Sadly, no one is perfect and while they have a lot of training - they are busy and they can overlook things at first and go for the *easy* thing to throw pills at rather than really drill down to see the cause.
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Avatar_f_tn
I like the idea of doing that. I also want my thyroid checked, which I guess is part of hormone testing? I don't know. I'm just at a loss for how to ask for these types of things because I feel like my GP is beyond sick of me asking her to try things with me only for everything to come back normal. The more that happens, the more convinced she becomes that I just have anxiety. Oh well, though; it's my body, not hers, so she can deal with me trying to get to the bottom of all of this.

The taking the easy thing out makes such little sense to me. I understand it when the symptoms are less severe, but I've already had pretty weird things happen like my left leg going numb for three days straight, not to mention all of the times I almost wrecked trying to drive home because my depth perception and concentration are so shot. It's beginning to seem as though I could have a cerebral aneurysm rupture or something, and I'd still be dismissed as hypochondriacal.
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657231_tn?1390151580
Thyroid is good just make sure it is not the normal panel of TSH and T4 which is useless.

Have you seen an eye doc - I see a neuro-optho and she sent me so someone to help my depth perception (which has always been a problem for me) as it is a muscle issue. But I have not heard of it just coming on.

It can be just anxiety too - when you get so focused it is hard not to obsess over every little thing. Some things are simply not that serious and some can be - you have to work to find the solution.
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Avatar_f_tn
I went through the same thing for 6 years I hand a ct scan in the er when it first happened complete numbness and tingling on my right side. I was told it was sciatica then anxiety and stress. I went from doctor to doctor the Ct scan were all negative then in January of this year I had an MRI with and without contrast and the tumor was spotted in the 4th ventricle of my brain stem and they saw it with and without the contrast it still hasn't been removed and I haven't had any treatment other than for pain well my symptoms have gotten worse and I went to the ER last night and they sent me for a CT scan without contrast. And guess what they didn't detect any tumor so I asked a nurse why since I had brought all of my results from my MRI(nobody believed me in the past so I carry proof all the time now) and she said the CT has to be done with contrast and even then they won't catch Brian tumors until they are so large that it will require emergency surgery basically you have to pass out or seize from the immense pressure in your brain. My tumor was the size of a cherry in January when they found it in an MRI.I would think that is large enough but apperently until it the size of a tennis ball or grapefruit a CT sacn won't find it. Ask for something to put you to sleep and have the MRI because you are not imagining any thing you know how you feel and change doctors until some one listens that's what I did. Buy the time a CT Scan found the tumor in a family member of mine's brain he had already gone deaf and blind in one eye. His vision returned after surgery but he lost his hearing and still has partial paralysis on the left side of his face. The tumor was invading the area behind his ear. They don't listen to patients anymore so many people do fake things and these doctors are forgetting to treat each individual as such. It's sad but you have to force them to listen and get the MRI no matter what you have to do to relax for it because your life is dependent on it.  I wish you well and don't give up.
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Avatar_f_tn
I just saw a neurologist (a Bulgarian one, educated in the US, but one with a heavy accent), at a well known neurology center in Seattle. I took the first appointment I could get because frankly my symptoms were alarming, facial numbness with some paralysis, growing steadily worse for about 2 years, facial swelling, numbness in eyes, tongue, back of throat, difficulty swallowing, severe pain in the back, top, and sides of the head, eyes, ears, sinuses, somnolence (I can't wake up, no matter how much sleep I get), same mental confusion, dizziness, equilibrium problems, tinnitus, neck pain (cervical disk bulging, and arthritis, cyst on facet joints), pain in right eye gets worse with high altitude and barometric pressure, but CT of sinuses shows no sinusitis. I've seen a neurosurgeon, and told her about my symptoms, she ordered an MRA of my brain and neck and an angiogram, but the insurance company won't pay for it because they say I have Sjogren's syndrome and its a pre-existing condition (what does it matter it's an autoimmune disease?). They are appealing the insurance decision, but it is a slow process full of red tape, and frustration, this is a State run program, which I pay for.

The neurologist fist suggested I take Lyrica, I said FORGET it! That's been shown to lead to brain decline and is linked to sudden death syndrome.  It just masks symptoms, makes you think you don't have pain. When I refused that, she suggested, Cymbalta. What a joke. A medication for depression, that off label may help chronic pain. I went to her to find some answers about why I was experiencing all these symptoms, which would scare anyone. She also suggested I do calisthenics, which is I guess the Russian word for exercise. With a headache, dizziness and blood pressure in the triple digits (I'm not overweight and my cholesterol is perfect). She said my symptoms were unspecific. What, excuse me for swearing, but what the hell does that mean? Unspecific? Too many?  She's confused?  Over her head? I should have done some research and found a good doctor, but who can you trust?  You have all these services that you pay for, but in the end, are they paying to get recommended?  I went to this hospital because this was where my rheumatology work-up was done, and I liked the doctors there. This is my brain we're talking about. I think I will try to go out of network and fly down to California and Stanford next for a second opinion because I feel that so frustrated by this system and these doctors. I just went to my primary care doctor today and she ordered an x-ray of my sinuses because my face was so swollen, I asked for a copy of it, and I looked at the images, and one side of my skull looks a lot different than the other, its bigger on one side than the other, above my eye near my sinus. You'd think a neurologist would be able to see SOMETHING if it was that glaring. Now I'm waiting for them to call me back, its been an hour and a half and I've had to call them back twice already.

So what I'm trying to tell you is just because they have MD by their name doesn't mean that they are Einstein, or better than you or me. It could mean that they got some good test scores because they're a lot stricter in some countries than they are here, and if it means coming to the US and getting a free education and political asylum, to escape a life of drudgery in their homeland, some people will do just about anything.
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657231_tn?1390151580
As far as I know, cymbalta and lyrica are also pain medications. But I am not in favor of tossing pills at a pain unless you know the source of the pain as a patient myself.

As for the unspecific - I think she meant non-specific. That your set of symptoms does not point to any one thing so naturally she is just going to treat a symptoms or set of symptoms. Having had that hurdle myself, I can tell you that means there is no way to pinpoint any one disorder from your set of symptoms. It *should* mean that the doctor should work from the most common to the rare to rule things in and out, but it seems she is not going to do much at all.

If your skull is changing shape - just as a lark - get your IGF-1 tested. You may have the beginning of a growth hormone issue? Just guessing.

Do you get copies of all your testing and reports?
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Avatar_n_tn
I have found that after a doctor gets past his 5th year of being in practice, he gets desensitized and just seems to lose interest in digging, researching and REALLY discovering what is wrong with you. I ignored a bad gall bladder for 7 months because Doctors treat you like a whiney hypochondriac whenever you go to them. My doctor chewed me out . He said, "You HAD to have known you needed help" !!!  "You could have set up gangrene !" But, I, like you, am afraid to be treated like it's ALL IN MY HEAD. Ive had some of your same symptoms and the doctor referred me to a psychologist. I think its IMPORTANT for you to keep at it until you FIND a Dr that actually CARES and TELL HIM/HER what you want done and what YOU THINK it is. Dont worry about looking like an idiot to them.....they are going to TREAT you that way ANYWAY. Good luck!!!
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Avatar_f_tn
Hi all,

I didn't realize this thread was still receiving responses 2 years later!

Since I posted this thread, I have had two more MRIs, both with contrast, and been to three more neurologists, in addition to a long string of other specialists and generalists. Nobody has figured anything out; nobody really seems interested in digging past an MRI to figure out what's causing my symptoms, so I've basically given up. I don't have the money to blow on anymore useless, 5-minute-long doctor's appointments. It s.ucks, though, knowing I need help but having zero idea how to get anyone to try to help me.

I tried going back to school because I was tired of not doing what I want to do because of my mystery symptoms, and it's not going well because of the cognitive problems. It's really unlike me to struggle academically given that my undergraduate GPA was a 3.95, but of course, this still will not be enough to get doctors to consider that I really am experiencing cognitive problems. I wound up in the school psychologist's office bawling after an incident in chemistry lab where everyone else seemed to catch onto the topics instantly, while I struggled to wrap my brain around the basic math we needed to do to complete the experiment. She referred me to an outside psychologist since the school's counseling center can't see part-time students. I have an appointment on Tuesday. I'm going, even though this guy is outside of my insurance network and I'll most likely wind up paying a ton of money for nothing again, because I just don't know what else to do. I try to just ignore all of the symptoms, but it's really, really hard when they're negatively impacting every single aspect of my life. *shrug*
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657231_tn?1390151580
Did you ever have an EGD (brain wave test)?

It can be frustrating to be a medical mystery...
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Avatar_f_tn
Yes, I had an EKG. I wasn't able to fall asleep during it, so they weren't able to see if anything abnormal went on in my sleep. They said nothing abnormal showed up, though.
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657231_tn?1390151580
I don't have any suggestions - did you post in neurology?
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Avatar_f_tn
I have in the past. :) I'm not trying to make anyone feel like they have to provide me with suggestions. I just got an email saying there were new posts to this thread, so I came and provided an update.
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7698266_tn?1393440830
Hi, I'm so sorry that you've been through so much. I can relate. I have been in your shoes & have a VERY STRONG mistrust for doctors now. If it's a new doctor, they have to EARN MY TRUST!! You wouldn't believe some of the nightmare's I have to tell!  I do have  some tips if you don't mind. No offense, I am not trying to be arrogant or anything to you or Rumpled with a couple of possible corrections? If I'm wrong either you please let me know. I just want you to be fully prepared next time you go & Take Charge withe your doctor! :) It sounded like you had a EEG, not a EKG (that's a heart study) your EEG I'm guessing was asleep study cause you said you never feel asleep & they said nothing was abnormal. If they were testing for seizures of course it would be abnormal! Unless you seize in your sleep! You need to be awake, They put flashing lights, spinning wheels, all kinds of things in front of you to trigger a seizure. Not painful, just kind of weird. Oh, you'll only need a EGD if you're having stomach problems. It's not painful either, they sedate you & run a small scope through your mouth, esophagus & stomach to make sure everything looks ok. They even take pics for for you to take home....seriously they do!! LOL! Not in my photo album!! I hope some of this helps.
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Avatar_f_tn
Yes, you are correct. What I had was an EEG, although I have had EKGs too. I always mess up the letters. :)

The reason why I mentioned that I was able to fall asleep is that some of my symptoms suggest there might be something going on with my sleep, not necessary seizures, but something abnormal. Who knows, though.
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Avatar_f_tn
wasn't* able to fall asleep*
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7698266_tn?1393440830
It's SO easy to mess up the letters. At least you don't mess up the words!! We were going down the river & there was a Mama turtle & her babies sitting on a log & I said, "Awww look at those cute squirrels!! LOL!! I will NEVER live that one down!! My daughter's my translator!! :) I just laugh at myself & try to stay positive. As far as the sleep study, it is hard trying to sleep in a different environment & with all of that stuff stuck on your head. I didn't sleep long enough for mine to even get accurate results so of course it came back as, "Nothing abnormal". My Mom & I just started laughing. I come from a family of VERY ACTIVE sleepers! At some point several of us have actually left the house! My daughter did once. Thankfully, each time one of us has done this while someone else was awake & was able to catch us in the yard! My daughter was "Going to school" so she thought, at 11pm!! Point being, just because everyone is finding "Nothing abnormal" in the studies doesn't mean nothing is wrong, Don't give up. Remind the doctor to treat you & not your files. Bodies change, things get missed & YOU know YOUR body better than anyone. Unless he or she is psychic! If that's the case ask if they are (psychic), sit back & let them do their magic! Which would be awesome, right?! I've actually asked one of my docs before something like that. I've also reminded them to treat..." ME,HELLOOO the person sitting in front of YOU!" He actually laughed. It surprised him. LOL! Had to remind one of the Hippocratic Oath. My parents always said I was a "Smartmouth", not in a good way. As in "Shut up or else!" You know there's only so much a woman can take!! This is our Brain!! Not our TOE!! I hope some of this helps & isn't annoying & I hope the best for you.
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7698266_tn?1393440830
I felt like I should also say that not ALL doctors are terrible. I just read over my posts & there's a lot of doctor bashing in there! I feel bad because I did FINALLY find wonderful KIND, & CARING doctors. They ARE out there so hang in there! :)
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Avatar_m_tn
hey I am only 19 yrs. old  and I had an acoustic neuroma (abrain tumor that only older people get)  removed this past September but the only reason why they caught was because they decided to do my MRI with contrast ( when they didn't use the contrast nothing showed up). As for what you are going through, I am actually going through something similar to that. I am having changes in my vision, forgetfulness, my mouth and brain do not correlate, i try to write one thing and something else comes out, balance problems, fast onset headaches, etc. and my doctors are saying the same thing because my MRI or CTs have not shown anything so they believe i am perfectly fine and i am making it up.I know Im not because I have no reason to. I too have never been drunk in my life or even been around drugs. So You are not going crazy! There's probably more people out there that are going through this too. If i figure anything out ill let you know
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Avatar_m_tn
Your story does give me hope as well as her i am sure. I just had my brain tumor removed in september but all of the symptoms and more are beginnig to pop up again. My doctors dont believe me believe because my MRI and CT came back normal. However , i think they forget how fast mine grew but that is besides the point. At least I know I am not going crazy
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