Well, I just got my results back from a recent MRI. The good news is there isn't any tumor. The bad news is. The radiologist saw some area where he described it as "questionable". My next appointment is going to be with a neurologist. Anyone been to these guys and know what to expect ?
MRI Results
- Thread starter TomT
- Start date
MemberHey Tom: I am a stroke survivor, so I have spent plenty of time in neurologists offices. He/she will have you do some simple neural processing tests (sometimes these are just paper and pencil tests), will test your reflexes with a little hammer (no, it doesn't hurt). My guess is he/she also will order additional scans, like a PET scan, to get a better idea what the questionable area is all about. Have you had any symptoms other than tinnitus? Headaches? Blurred vision? Feeling dizzy? The doc will ask you these questions as well. Don't worry... you will be OK. Keep us posted.
I'll be watching this thread. When do you go back, TomT? I have my high-res MRI for Thursday next week. I had a CT scan recently, followed by another CT scan with dye. They said those came back looking like a healthy brain. Zombies be jealous. 
I have an appointment on February 28th. I have H and T with occasional mild ear pain and ear fullness with chronic headaches. The left side of my face is sensitive to touch too. It sends a shockwave to my brain it seems. The ENT wanted me to get an MRI to rule out any tumor. Luckily the test result came back negative, however he said there are questionable areas of the scan that he said only a Neurologist can provide me with more information. He said that is my next step. Maybe he tells all patients that so his Neurologist friend can make some money too? It's all business to them. I'm just guessing. I will keep you all updated.
TomT, have you seen an neutologist? they can check for an acoustic neuroma that a normal scan probably won't see. I went to neurologist first, then he referred me to the neurotologist for a more fine-tuned scan of the inner ear. I have H & T and fullness.
welcome to the club that nobody wants to be in!
(I try to have a sense of humor... )
welcome to the club that nobody wants to be in!
(I try to have a sense of humor...
)
so far, I've only received orders for vestibular physical therapy (from neurotologist and neurologist) and sound generators(TRT) (from audiologist). Where ya all from??
Well I had an MRI of the brain with and without contrast. I believe it has more details than a regular ct scan. They were looking specifically for soft tissues and masses. I don't know what the other details are. All I know is, it was a very expensive photo session. It was loud and I had to pay out of pocket for it.
OUCH - out of pocket??
In this area (Boston), the equipment available to the neurotologist is very specialized. The high-res has an ability to scan for teeny-tiny parts of the inner ear. The neurologists here don't have access to that.
In this area (Boston), the equipment available to the neurotologist is very specialized. The high-res has an ability to scan for teeny-tiny parts of the inner ear. The neurologists here don't have access to that.
my ENT didn't tell me squat. "It's just tinnitus... you won't even know you have it unless you are looking for it in a quiet room"... B-S!!! I have H and T and it IS a big deal, thank you very much!
Weirdly enough, I have my tinnitus to thank for finding my brain tumor! Because of it and other symptoms, I was sent for an MRI and that was how the tumor was discovered. It is believed the tumor has not caused the tinnitus. I have since had Gamma Knife back in 2008, doing well with no further growth, but continue to have tinnitus. I have MRI's all the time since and have no issues discovered to explain why. Meniere's is likely and I do have Vertigo episodes. I had vertigo daily for 3 months last summer and I do suspect it has something to do with my inner ear not tumor.
Tom, I am glad you were able to get the MRI, you just never know, and that piece of mind wonderful. I am sorry it was out of pocket for you, they can be horribly expensive without insurance. My last one was out of pocket, but I shopped around and you would not believe how price can vary! Shocking! I am in the Boulder, Denver area, and hospitals are the worst! Usually charging $2000-3000 dollars! I found an Imaging Place called Touchstone Imaging that only (still a lot I know) charged $600! I understand they have imaging places all over the country. Google it and see if there are any near you for future needs if it comes up.
Best of luck!
Tom, I am glad you were able to get the MRI, you just never know, and that piece of mind wonderful. I am sorry it was out of pocket for you, they can be horribly expensive without insurance. My last one was out of pocket, but I shopped around and you would not believe how price can vary! Shocking! I am in the Boulder, Denver area, and hospitals are the worst! Usually charging $2000-3000 dollars! I found an Imaging Place called Touchstone Imaging that only (still a lot I know) charged $600! I understand they have imaging places all over the country. Google it and see if there are any near you for future needs if it comes up.
Best of luck!
that's interesting! more than one doc has asked me about facial sensitivity... I don't have that, but now I wonder why the question!
@Susan Henderson
I'm happy to know that they got rid of your tumor and there isn't any new growth. Yeah just not knowing if you have one lying inside your brain somewhere can be very worrisome. I could probably shop around for a cheaper scan but I really wanted to know as soon as possible. I have a family with small children and to even think that I cannot provide or protect them is the worst feeling. My youngest daughter had cancer when she was only 2 years old. We didn't know how she got it because none of mine or my wife's family member ever had cancer. I was so sure that the MRI would prove that I have a Tumor in my brain. My daughter had it and I thought to myself. Maybe it came from me! The cancer she had is called Aveolar Rhabdomysarcoma. The tumor was on her left temple of her head. It had tentacles that were reaching down close to her brain close to the meninges. It was about a size of a golf ball or bigger. Only about 250 new cases a year, which is very rare. I live in Tennessee and we got very good hospitals at Vanderbilt Medical University and St. Jude Medical Center. Luckily they caught it on time to treat her. The chemotherapy worked really well on her. It reduced the size of the tumor to almost nothing. We also had to go to Houston MD Anderson for her Proton Radiation Treatment because it was only available in a few states and Tennessee wasn't one of them. She had to have 4o rounds of Chemo and 30 rounds of Proton Radiation. She is such a strong and resilient child. I was amazed at how well she took the whole treatment; hair falling off and shit well you all know what chemo can do to you. Anyway, she is almost 5 years old and almost 2 years cancer free. She is doing very well if you're wondering. I know we are not out of the wood yet and it can come back at anytime. I try not to think about it too much because it's depressing. When she was first diagnosed I asked god to please take me instead. Spare my daughter; I've lived long enough. I would give up my life for her. Now that I'm having these problems with my ears H and T and whatever, it is no comparing to what I've faced. If I'm willing to die at one point in my life, these problems are very minor to me. I Just learn to accept it and move on. Nobody has a perfect body. Oh BTW! On the side, My wife is 37 weeks pregnant and we are expecting our first baby boy! and this will be our last child!
I'm happy to know that they got rid of your tumor and there isn't any new growth. Yeah just not knowing if you have one lying inside your brain somewhere can be very worrisome. I could probably shop around for a cheaper scan but I really wanted to know as soon as possible. I have a family with small children and to even think that I cannot provide or protect them is the worst feeling. My youngest daughter had cancer when she was only 2 years old. We didn't know how she got it because none of mine or my wife's family member ever had cancer. I was so sure that the MRI would prove that I have a Tumor in my brain. My daughter had it and I thought to myself. Maybe it came from me! The cancer she had is called Aveolar Rhabdomysarcoma. The tumor was on her left temple of her head. It had tentacles that were reaching down close to her brain close to the meninges. It was about a size of a golf ball or bigger. Only about 250 new cases a year, which is very rare. I live in Tennessee and we got very good hospitals at Vanderbilt Medical University and St. Jude Medical Center. Luckily they caught it on time to treat her. The chemotherapy worked really well on her. It reduced the size of the tumor to almost nothing. We also had to go to Houston MD Anderson for her Proton Radiation Treatment because it was only available in a few states and Tennessee wasn't one of them. She had to have 4o rounds of Chemo and 30 rounds of Proton Radiation. She is such a strong and resilient child. I was amazed at how well she took the whole treatment; hair falling off and shit well you all know what chemo can do to you. Anyway, she is almost 5 years old and almost 2 years cancer free. She is doing very well if you're wondering. I know we are not out of the wood yet and it can come back at anytime. I try not to think about it too much because it's depressing. When she was first diagnosed I asked god to please take me instead. Spare my daughter; I've lived long enough. I would give up my life for her. Now that I'm having these problems with my ears H and T and whatever, it is no comparing to what I've faced. If I'm willing to die at one point in my life, these problems are very minor to me. I Just learn to accept it and move on. Nobody has a perfect body. Oh BTW! On the side, My wife is 37 weeks pregnant and we are expecting our first baby boy! and this will be our last child!
Tom! First I wish to say congratulations on you and your wife's new baby boy soon to arrive!!! How wonderful! He is blessed to have such a loving, caring father waiting for him. Your daughter's story really touched my heart. She is way too young to have gone through so much! I am so happy she is now doing well. What a relief! I do understand your feelings, there is nothing we wouldn't do or sacrifice for our children. It is NOT your fault even if you had a tumor found. Environment can play a much bigger role in cancer, especially in children. My grandson had a very aggressive form of testicular cancer when only 1 1/2 yrs old, very rare for someone of his age. That was what was told to us. Happily he is now 13 yrs old and doing great and cancer free.
You have a good, kind heart Tom. I wish you and your family a good and happy life. Your daughter is in my prayers.
I would also urge you to go to the neurologist and find out more since they have a question about something and he could tell you more with his expertise. The facial sensitivity you describe sounds like something to do with your trigeminal nerve, be sure to tell them about it. Please keep us posted.
Susan
You have a good, kind heart Tom. I wish you and your family a good and happy life. Your daughter is in my prayers.
I would also urge you to go to the neurologist and find out more since they have a question about something and he could tell you more with his expertise. The facial sensitivity you describe sounds like something to do with your trigeminal nerve, be sure to tell them about it. Please keep us posted.
Susan
Just came back from the Neurologist. Well, As far as the T , H and headaches go, He really didn't have an answer to it. He gave me a few physical and reflex test and said they were OK. I've also developed some twitching in my legs. I believe he was testing for MS. The questionable areas on my brain MRI was some spots that they've found. He told me that these spots may be causing my problems. These spots are called "unidentified spots" there are about 4 of them. He told me he sees them all the time and 95% of the time they are benign. He said some people are born with it.He'd asked me to get another scan in about 6 months to see if anything changes. I told him I don't think they are benign because it's obvious I'm having problems. He said if the symptoms get worse, then come back and see him.
It is good news he found nothing urgent but frustrating not to be able to give you definite answers to your problems! By any chance were the unidentified spots referred to as "White Matter" spots? I have those and it's always mentioned but never specific on what it means. I guess they don't know.
If you do get worse be sure to be the "squeaky wheel" and persist until you get answers! Twitching and constant headaches are not normal and just because they didn't find anything doesn't mean there isn't anything to find! Best of luck with this my friend!
If you do get worse be sure to be the "squeaky wheel" and persist until you get answers! Twitching and constant headaches are not normal and just because they didn't find anything doesn't mean there isn't anything to find! Best of luck with this my friend!
Susan I don't remember if he referred it to "white matter" spots, I think he just said white spots. They are kinda round and about half a size of a pea. They are in front of the brain left and right area. I did some researched online and it could be a number of things ranging from tumor, MS, Lyme Disease, Lupus, Migraine Spots just to name a few. These white spots could be the culprit of my headaches, Hyperacusis and Tinnitus. It could be pressing against my nerves. I guess it's time to get a sledgehammer out and open up my brain to see exactly what it is 
If I have to describe it, I would choose tension. It kinda creeps on me. It can start off as a pulse. It's almost like an on and off switch from the top right or top left. It can strike anytime. Sometime it does become a full blown headache. Sometime it starts at the temple area too. It doesn't feel like a migraine headache where you get the Nausea, flashing lights or dizziness. Someone told me once that you can have the anatomy of a Migraine headache without the symptoms. I'm not really sure and I'm not sure if the white spots in my brain are causing the headaches or the headaches are causing the white spots. Either way, it doesn't sound good. I will have another MRI in the future to see if there's any changes.
Once the anxiety about my situation started to go down, the headaches started to fade.
Here's where I usually felt the pain, not so much on the top of my head though.
I also had tightness along the sternocloidmastoid (sp?) because of anxiety. I'm still not 100% anxiety free. But a lot of the tightness is gone.
I also want to add that for me the controlling of the anxiety was somewhat due to a conscious realization of the situation and what was happening to me.
Here's where I usually felt the pain, not so much on the top of my head though.
I also had tightness along the sternocloidmastoid (sp?) because of anxiety. I'm still not 100% anxiety free. But a lot of the tightness is gone.
I also want to add that for me the controlling of the anxiety was somewhat due to a conscious realization of the situation and what was happening to me.
@NeoM Thanks for the valuable information
Yes I'm going through a lot of anxiety right now, but I'm one who refuse to take a pill to mask it. I know once the effect of the pill is gone my reality will come back. It's such a vicious cycle. I don't take anything for anything unless I truly have to. My drug of choice believe it or not, would be Marijuana. It personally helps me with a lot of things but I also am not using it atm. It is also illegal in my state. I don't want to go to jail.
I have been reading and practicing Meditation lately. It seems to help a lot with the psychological aspect of my illness. I am not an expert at it yet, but I feel it's getting me somewhere. I tried it a few times. It is hard at first, but once you get the hang of it, it really does make you feel well being. I think everyone should learn meditation if they have anxiety or stress in their lives. There are other benefits too. One should read into it. I truly recommend it.
Yes I'm going through a lot of anxiety right now, but I'm one who refuse to take a pill to mask it. I know once the effect of the pill is gone my reality will come back. It's such a vicious cycle. I don't take anything for anything unless I truly have to. My drug of choice believe it or not, would be Marijuana. It personally helps me with a lot of things but I also am not using it atm. It is also illegal in my state. I don't want to go to jail.
I have been reading and practicing Meditation lately. It seems to help a lot with the psychological aspect of my illness. I am not an expert at it yet, but I feel it's getting me somewhere. I tried it a few times. It is hard at first, but once you get the hang of it, it really does make you feel well being. I think everyone should learn meditation if they have anxiety or stress in their lives. There are other benefits too. One should read into it. I truly recommend it.
Due to some incidents that happened to me recently I've asked my dr for brain MRI. I kind of push him for it. Finally I've got one.Susan I don't remember if he referred it to "white matter" spots, I think he just said white spots. They are kinda round and about half a size of a pea. They are in front of the brain left and right area. I did some researched online and it could be a number of things ranging from tumor, MS, Lyme Disease, Lupus, Migraine Spots just to name a few. These white spots could be the culprit of my headaches, Hyperacusis and Tinnitus. It could be pressing against my nerves. I guess it's time to get a sledgehammer out and open up my brain to see exactly what it is
I was surprised by the result but my dr was ok with it. Agin i had to push him to refere me to the neurologist. The nerou dr checked on my nerologycal signs and asked me to walk back forth to him. So he told me that it had to be coloration between the imeges and the body symptoms. Which in my case there were none. But the thing that keeps me worrying is the "White Sopts" that were seen in the T2 hyperintensities.
If it's normal then why they are there?
Here is my result and I would appreciate anyone that could help me to understand it. And if anyone of you had a same kind of a result like mine let me know what dr told you.
Findings:
Normal Configuration of the intracranial compartment and posterior fossa. There is no hydrocephalus, intracranial mass, hemorrhage, diffusion restriction or significant abnormality demonstrated extracranially. Several nonspecific punctuate FLAIR in distribution. In pationet of this age, these are atypical, and could be
inflammatory-infections, demyelinating, chronic migraine, vascular, and not completely excluding Vasculitis. Intracranial dominant flow-voids are identified in usual fashion.
Impression: Tiny scattered frontoparieatal FLAIR hyperintensities are distributed largely peripheral. In a pationet of this age, with this MRI appearance, it could be due to variety of etiologies. Further work up is therefore recommended clinically. Further work up is therefore recommended clinically. Further radiographic work up may include MRI using Gadavist, cervical MRI if indicate, and follow up MRI for stability advised The thing is that I had headache but I don't remember I had migraines.
So how and why i got this spots I don't understand and how they can be normal.
If they are nonspecific then why he asked for second MRI? I am 37 years old and based on my age both my dr and the nerou were little surprised but they both dismissed other possibilities that radiyologyst suggested. Beacuse I don't have high blood pressure, I don't smoke or do drugs, no Lyme deaseas and migraines.
My dr ran many tests for inflammation and ANA test. ESR, C-receptive and many others all came back negative.
But the MRI result got me anxious and worried specially in the part saying for my age is atypical. I kept googling all the terms on the findings and I keep getting scary results.
