Possibly fibrous dysplasia or something else - brain compression

[Citizen T]

Hi, I'm posting this on behalf of my husband who hasn't been out of bed in 3 days.  He wrote this last week and asked me to post this on any doctor's forum.  So, this is his letter:

I would like to know if this lesion is probably or probably not causing my symptoms, in your opinion?  MRI, CT, MRA, SPECT, blood tests all done (extensive) all negative except this--

(Regardless of exactly what the lesion is, the compression against the brain is my area of concern)---

Each link below is a different picture, these are great photos please look...
(MRI May 2005):

http://www.angelfire.com/ab9/mriphotopage/mri/MVC-032F.JPG
http://www.angelfire.com/ab9/mriphotopage/mri/MVC-030F.JPG
http://www.angelfire.com/ab9/mriphotopage/mri/MRI_brain.JPG
http://www.angelfire.com/ab9/mriphotopage/mri/MVC-028F.JPG
http://www.angelfire.com/ab9/mriphotopage/mri/MVC-034F.JPG

***My symptoms:

1.  Constant pressure headache for 6 strait months now mainly behind forehead.   Tingling in lumbar spine.

2.  Feeling "spaced out",  "dazed",   in a severe state of "mental blur" (allways present)

3. Severe Dizziness / ONLY when laying down and it lasts until I sit back up (this happens 1-3 days per week)

4.  Odd tingling headrushes (not too often) along with dizzy spells/confusion

5.  Constantly, severely swolen turbinates in nose (sinuses are clear)    -no known reason

I have no history of psychological problems and strongly do not think that is my problem.  Symptoms became much worse 6 months ago.  

Please help It is impossible to see the neurologist soon!

thanks

[kimwn]

A related discussion, headache, fuzziness & forgetfullness was started.

[EANDJ]

HI DOC. PLEASE GIVE ME AN ADVISE. OR ANYONE. YOU CAN SEND EMAIL TO MY ACCOUNT AT ***@****

THANK YOU VERY MUCH///

[EANDJ]

HI. I WOULD LIKE TO SHARE MY EXPERIENCES TO ALL. AND IF EVER, ANYONE WHO'S LIKELY TO HAVE MY SAME CONDITION KINDLY GET IN TOUCH WITH ME BECAUSE UNTIL NOW I HAVE LOTS OF QUESTIONS IN MY MIND.
I KNOW I AM PHYSICALLY FIT THOUGH I WAS ALREADY OPERATED ON SCOLIOSIS LAST APRIL OF 1993. A HARRINGTON ROD WAS PLACED AT THE LUMBAR PART OF MY SPINAL CORD. CAN BE FOR LIFETIME OR CAN STILL BE REMOVED BUT HAVE TO GO ANOTHER SURGERY. I THOUGHT THAT'S THE END OF IT ALL. BUT LATE LAST YEAR I JUST REALIZE IT LATELY THAT I WAS HAVING VERTIGO, I JUST KNEW IT LATER THAT YOU CALL IT VERTIGO BECAUSE I THOUGHT I WAS JUST HAVING HEADACHE AND DIZZINESS. BUT WHEN 2005 OF MID FEBRUARY CAME I WAS RUSH TO THE HOSPITAL BECAUSE OF SEVERE HEADACHE THAT IT'S HARD FOR ME TO TOLERATE ANYMORE. AM A PERSON WITH A HIGH PAIN THRESHOLD.AT FIRST THE DOCTORS AND INTERNS IN THE ER CAN'T TELL WHAT IS WRONG WITH ME. THEY BROUGHT ME TO A LOT OF TEST. URINALYSIS, PREGNANCY TEST, BLOOD TEST AND THEY EVEN GAVE ME A MEDICATION FOR THE HEADACHE. THEY SAID THAT I AM FINE, I MAY GO HOME AND SHEDULE AN APPT. WITH AN EENT TO KNOW WHAT'S THE PROBLEM. I GOT HOME, I STARTED TO FIGHT WITH THE PAINS AM HAVING. ITS AS IF I WANT TO BREAK MY HEAD. I CAN'T EAT, BUT I TRIED TO SIP SOUP AND AFTER AWHILE I STARTED TO PUKE AND PUKE AND SO I WAS RUSHED AGAIN TO THE ER. THERE I WAS OBSERVED AND AFTER THAT I KNEW NOTHING AT ALL. I WAS ADMITTED AT THE 18TH OF FEB. OPERATED ON FEBRUARY 24, 2005. WOKE UP AT MARCH 5. AT FIRST, THE DOCTOR, THE HEAD NEURO OF ST. LUKE'S AND HIS COLLEAGUES TOLD MY HUSBAND THAT I HAVE A TUMOR IN THE BRAIN. BUT LATER THEY FOUND OUT THAT I HAVE AV MAL. IT'S SO DIFFICULT AND UNTIL NOW AM STILL HAVING IMBALANCE IN WALKING AND DOUBLE VISION.

CAN ANYONE GIVE THEIR OPINIONS OR ADVISE FOR THE DO'S AND DONT'S FOR MY CASE. WHAT THERAPY DO I HAVE TO UNDERGO. COZ MY DOCTOR SAID I DON'T NEED THERAPY ANYMORE AFTER MY 5TH MONTH. IT WOULD JUST COST ME.

THANK YOU VERY MUCH. GODSPEED TO ALL THE PEOPLE WITH SIMILAR CASES.

[EANDJ]

I FORGOT TO MENTION, THERE'S THIS SHUNT THEY PLACED BESIDE (RIGHT) MY HEAD DOWN MY ABDOMEN. DOCTORS SAY THAT WHEN THE CSF IS FULL (CAUSE OF THE COMPRESSION-HEADACHE) IT IS DRAINED THERE.

SO AWFUL TO SEE, A ROD IN THE SPINAL CORD AND SHUNT IN MY HEAD! IT'S OK WHAT IS IMPORTANT I STILL HAVE MY FAMILY AND AM VERY EAGER TO BE BACK TO NORMAL. IS THERE A WAY FOR AN EARLIER RESPONSE.

THANK YOU.

[Huna]

Hello all,
I am a 33 year old male and I recently had a seizure at work.  There is no family history of seizures.  I had an MRI done on Oct 3 2005 which revealed what the doctor called a spot on the left side on the brain.  He order a spinal tap (very painful) to check for viral encefilitis? and I have heard nothing about the cultures.  My next MRI was scheduled approximately one month from last.  I noticed on my denial letter for STD that it stated a "left temporal mass".  I'm not sure what this means, whether or not I should be more worried and what the future holds.  If anyone could answer these questions, I would surely appreciate it.

Thanks,

On pins and needles

[Ms2040]

I had a brain MRI done last week and it showed 3 small spot.  One on left front of lobe and another one on the right lobe and the third behind the right lobe.  The neurologist said it was nothing to worry about and dismissed me.  I however worry because of the right eye cramps and then bleeds.  Eye doctors said it was ok too.  I do have headaches, dizziness, stomach upset and pressure on my head but that is attributed to Meniere's Ear.  What concerns me most are the white spots on my brain, am going to get dementia, alzheimers, go nuts, tumor?  Are they white spots or maybe the cancer cells?  I Hope someone out there can answer some of these questions, I really appreciate it.  Thank you

[Citizen T]

Dear doctor, Thanks for the reply.   Would removal of this mass likely require a major craniotamy or could it possible be remove piece by piece through a small burrhole?   Is it worth the risk in your opinion?     Or does the answer to this depend on what the mass is?     Sorry for all of my questions i am quite desperate how wever, thank you again

[CCF-Neuro-M.D.-PW]

Please see my answer to your husbands same questions and my informal opinion on the scans in the response to his recent post

there appears to be some degree of mass effect or pressure but the films are not of sufficient quality over the internet, nor can I give a formal opinion on them - it may or may not be causing the symptoms, it is difficult to prove this without removing the mass and seeing a resolution of them.

thanks

[Citizen T]

I also forgot to mention that he is only 27 years old

[Citizen T]

I don't know about vasculitis.   he says that on the MRA to him the white colored blood flow looked "bubbley" but the test reported "negative".    Also he has mild upper-mid cervical spondylosis, and "fizzling" sounds when he turns his head in certain directions.

[BMR01]

Hello my wife has CNS vasculitis, I know you said you had an MRA but it could be of the small blood vessels which match your husbands symptoms,   but I'm not the doctor I don't know for sure.