Discussions By Condition: Brain conditions

?pseudo Tumor Dilema?

Posted In: Brain conditions 2 Replies
  • Posted By: dreamer13
  • March 2, 2007
  • 02:39 PM


Hi All:

4 Years Ago I Woke Up One Morning With My Right Eye Swollen Shut, Having Had Terrible Pain In My Head During The Night. That Day It Was Diagnosed As A Stye. The Pain Got Worse, The Swelling Got Worse. I Was Then Diagnosed At An E.r. With Cellulitis And Admitted To Hospital. They Took A Catscan And Found A Mass, Beween The Back Of The Orbit Of My Right Eye And My Brain.
They Discharged Me With A Brain Tumor, Saying They Were A "suburban Hospital" And Did Not Have Any Specialists For This.

I Went Home Against My Will, Wanting Someone To Help Me. The Condition Became Worse. I Started Seeing Double, Lost 80% Of My Sight And Both Eyes Turned Blood Red.

I Saw Dr After Dr Telling Me That Because Of The Location They Could Not Even Do A Biopsy Without Blinding Me. I Wound Up At Another Specialist, An Eye Surgeon/specialist. He Did Not Know How To Treat Me, He Was Going To Give Me Radiation But I Got That Bad That He Handed Me Over To His Partner. I Saw Him On An Emergent Appt, One Hour Before He Was Due To Leave The Country On Vacation. He Was Running All Kinds Of Tests But Also Running Late For Leaving For The Airport. He Left The Room, Came Back With A Big Smile On His Face And Said " We Have A Diagnosis. All You Have Is A Pseudotumor" (did Not Explain To Me What That Was Except Not To Worry) However, I Was Immediately Admitted Into The Hospital, Given Iv Steroids. My sight Started Coming Back, The Red Dissipating And After A Week I Was Discharged To Outpatient Radiation Treatment.

In The Meantime, The Mass Had Tripled And Now Went Across The Back Of Both Orbits Plus They Found A Mass In My Left Kidney And In My Left Thyroid Gland That Was New.

I Had Radiation, 6 Weeks Of It, Each Day. Nothing Changed Until About 4 Weeks Later, After Another Scan Of My Orbits, The Mass Started Dissipating Almost Down To Nothing. However, Everytime I Went Off The Steroids The Pain/pressure Came Back.

Nobody Addressed The Other Masses, Saying They Were "probably" Just Cysts.
Months Later The Mass In My Head Starting Growing Back. The Dr Who Diagnosed Me And Did This Treatment Became Very Angry With Me Everytime I Went To See Him After That Until I Could No Longer See Him Because Of How Bad The Situation Had Become.
(my social worker that i had, who had gone with me twice to the dr and saw his attitude, said to me "they blew the diagnosis and did not want you to ruin his track record so he is upset. drop him and because of the emotional stress, i did.)

i saw More Specialists, However My Records Then Reflected "the" Diagnosis And Nothing Was Ever Done To Look Elsewhere for anything else wrong with me.. After That Time I Also Grew Another Mass In My Left Thyroid Gland.
Those Masses Now Give Me Trouble When Swallowing And Give Me Oftimes Loss Of Speech But Still...
Nothing Done Because Of The Diagnosis I Carry Around With Me.

In The 90's I Had Surgery On My Face To Remove, What They Found Out To Be After Lab Reports, Malignant Melanoma caused by skin cancer from the sun. One Dr. , Out Of So Far 23 Specialists, Felt That Is How The Mass ?metastasized? From And That I Had Cancer And A Brain Tumor Not A Pseudotumor . However, I Cannot Have Anymore Radiation Because It Is Synergystic In Accumulating In One's Body And Also Because Of Location Of The Way The Mass Has Grown Back, Now Also Into Optic Nerves.

I Am Still On Steroids, The Only Thing That Keeps Me From Losing My Sight Again. However, Nothing Else Can Be Done For Me And I Still Have The Diagnosis On Every Medical Record "pseudotumor"
The Other Masses Are Ignored Because Oncologists
For Whatever Reason, Feel They Are "nothing To Worry About' And Since I "only" Have A Pseudotumor, Can't Possibly Be Cancer (even Though I Have A History Of It From The Melanoma)

I Live In The Midwest, Have Been To Every Small And Large Hospital Here. I Cannot Afford Transportation And Lodging To Pursue Help Out In California or anywhere far away, Where I Hear They Are More Aggressive Re: Conditions Within The Brain.

Has Anybody Ever Been Diagnosed With A Pseudotumor? Or Brain Tumor/cancer? Or Misdiagnosed With Something Like This? And These Symptoms?

If So, What Happened To You And What Did You Do?

I Am Starting To See Double Again, Even Though On Steroids Still I Am Losing My Sight More And More Again With Increasing Pain And Pressure.

I Am So Afraid That This Is Going To Either Blind Me Or Kill Me.

Sorry This Is So Long But My First Time Here And I Don't Know Where To Start Except I Am In Need Of Advice Of How To Get Help.

Thank You,

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2 Replies:

  • I am currently dealing with a "pseudo tumor".I've been having this problem with my eye for about 10 years now, never severe until 2009. In 2009 my symptoms of eye pain, swelling, redness and double vision when I look to the side progressively got worse and vomitting was added to the list of symptoms. I had a ct scan and was referred to a specialist about 5 hours from where I live. Before getting a call from this doctor my symptoms got so bad and I couldn't stand the pain anymore, I was taking tylenol 3's every 4 hours. I went to my local eye doctor and he made a call to this doctor that we had been waiting on. I went to see him and he looked at my ct scan, never telling me what exactly was wrong besides having eye inflammation and the only thing that he could treat me with was prednisone. I was extremely upset as I had been on prednisone previously for other reasons and I know what they can do to your body!So, after being pumped with 80 mg of Prednisone for a week I travelled the 5 hours again to see him and he started to cut me back on the prednisone. He sent me for an MRI 2 months later and I met with him a month after that. He told me the MRI came back normal, nothing to worry about and that everyone can get eye inflammation except some people have it worse than others. At this time I wasn't on any medications (this was september 2009).Fast forward to December 2010. I called the eye specialist as I was having some symptoms and wanted to catch it right away without it getting bad because I knew eventually it would become unbearable. After speaking on the phone to his receptionist that told me I had a TUMOR!! that I knew NOTHING ABOUT, I was severely upset and wasn't sure what my outcome would be. I made an appointment, drove 5 hours... had to bring someone else with me because I couldn't drive in the city that I was going to. I got there, and he looked at me (after coughing in my face!!) and told me there was nothing he could do because the symptoms weren't bad enough and the side effects of the steroids would be much worse than what I was experiencing now!So, I drove back to my hometown and woke up the next day with my eye completely swollen, so much pain that I can't stand it and I was vomiting again!! Not even 24 hours after I saw that doctor. Of course it was the weekend, and there was nothing I could do! So, on monday morning I went and saw the local doctor and he put me back on prednisone, 50 mg. I eventually worked myself down to 5mg a day without any symptoms and stayed on that for 6 months. In that time I saw an internal medicine doctor as my eye doctor said it is very unusual to have this problem occur so often. They tested me for lupus, renal failure, parasites among so many other things. Everything came back negative. And that was the end of my visits with the internal medicine.I asked my eye doctor to refer me for an allergy test, as I thought maybe allergies had something to do with it... so I just had my allergy test and yet again... everything came back normal!!! I was honestly hoping for an answer. While waiting for this allergy test, my symptoms came back twice. One time he treated me with the prednisone for over a month and eventually brought me off of the drug. I had to be off prednisone for my allergy test, so I was off for about 3 weeks when my symptoms came back YET AGAIN! I went back to visit my eye doctor today and he measured my eyes and said that it wasn't swollen, but I'm experiencing the pain and redness and double vision when looking left.. HOWEVER, he won't treat me!! So, here I am suffering again... ugh.. I totally share your pain, and I just want some answers!
    Anonymous 42789 Replies
    • November 4, 2010
    • 03:11 AM
    • 0
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  • The same EXACT thing is happening with me! They say it is pseudotumors behind my eyes but yet it happens too frequently. So I am guessing they have no idea whats going on with me. I am off to eye er in a near by city as I do not have them money for the eye dr (and i already owe them a bunch of money!) If you find out anything about your condition, let me know.
    Anonymous 42789 Replies
    • December 16, 2010
    • 03:52 PM
    • 0
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