I have many people trying to contact me regarding this show and have been able to help several. Apparently, they are finding it hard to get hold of me. I am happy to receive your questions through email at tkillarney@earthlink.net. The site will block emails if you are not in my address book but will offer for you to send a request to unblock. Do that and I should get your questions.

I just wanted to say how nice of you to care enough to reach out to people here!

I just happened to see that episode, I don't have Discovery Health anymore since Cox Cable took it out of the normal cable package. (I miss it dreadfully!) But I do get occasional reruns on TLC, and last Tuesday they aired this brand new episode.

It really gave me hope that if a person can find the right Doctor, they can be accurately diagnosed and treated. And I am so happy the surgery was successful, and there was no reoccurrence of the Cranial Nerve tumor.

I imagine once a person is on national TV, they would get deluged with contacts--so how very thoughtful of you to encourage people to contact you for help! Not everyone would do that, and I thought you deserved a nice compliment for making the effort.

Thank you for being so nice! )

PS: For those who have experienced tumors, there is a wonderful movie out called "Blue Butterfly"; about a young boy who had a terminal brain tumor. He collects insects, and asked a prominent Scientist to take him to the Rain Forest to catch the Blue Orpho butterfly, which was his dream. I don't want to ruin the ending, but I will say that a miracle occurred, and his brain tumor completely disappeared. It has never reoccurred. It's a good movie to see for inspirational purposes.

Thank you TheCFiles. I'm a nurse first, so of course I want to help. Even if only one other person benefits, its worth it. tkillarney

Hi Tracey
First let me say how sorry Iam that it took so long for you to be diagnosed. I have alot of the same symptoms that you had and now after 5yrs they say its a c5-6 herniation. I feel like it is more. I too have been treated for everything from depression to migranes. because Iam so smell and sound sensitive I feel it could be more than a herniated disc. I have a cold sensenation that contiunes to irritate my left side of the face. My cable went out right as the show was getting to the part about your neck, did you have the surgery for herniation? How did they conclud it was a tumor? Any help you can offer would be great Thanks

could you please tell me how to get a copy of the show. my mother has chornic pain, she was telling me about the show. i would like to see it so we could share info with her doc.

thanks for your help,
glomick

Dear Tracey
I hope you are doing well!
You story floored me . I have been experiencing the very same symptoms as you, except for the incontinence, scene 2000.
Lately its been so bad, I can hardly write this. I have been to several doctors and even to the ER all to no avail
Thank you for giving me a new avenue to look in.
QUESTION:
Is there any thing special i should ask for while exploring this possible cause?
My symptoms:
incompasitating headache
Fullness in ears.
Pressure and burning pain deep in ears (Center of my head)
Nausea.
Burning headaches (Burning sensation under scalp in addition to internal pain).
Hearing impaired.
Sudden unexpected noises very painfully loud.
Chills.
Daily Quick fevers.
Hair sensitive to the touch.
Facial sunburn sensation.
Facial numbness
Burning sensation on arms and legs
Aching shoulders and neck
Dizziness
Skin overly sensitive to hot and cold.
Panic attacks, (unable to handle anything stressful or watch exciting TV)
Weakness (as though fighting an infection)
Cloudy thinking
SEVERE TINNITUS (ringing in the ears)

Thank you for sharing your story

I'm still crying... life seems like it might make sence again. Thank god I saw this show tonight.

4 years ago, i delivered a baby while I was on leave from a management position of a job I loved. I lost my whole life. my house, my kids, my marriage, I ended up in a shelter, i have gained 55lbs, my self respect, my financial status, i'm in debt, I had to get on welfare, i lost my belonging, my kids baby pictues, my furniture, right now i'm homless & seperated from my kids. I'm so hopeful... that hurts too.

After delivery of my 4th, my troubles began... i did all the test, i was told I have a herniated disk & pinched nerves & it could have happen whenever. I've suffered from headaches since I was a kid, as an adult they returned, I was given pain medicine, nerve medicine, relaxers, steroids, after a year I kept trying to stop the meds because my stomach felt like hell, my house looked like hell, my marriage became hell, & my oldest began to talk of suiside as she got overwhelmed with trying to fill my shoes. The pain kept getting worse even when I took them, I was begining tobe treated like a drug addict. Nobody believed I was this ill at 34 yrs old, even my doctor said he didnt want to keep giving my pills.

I resorted to asking my niebors for thier painkilers. I even sold on ebay to help with the medical bills.

I had to give up my job, i tryed to work taking extra painkillers, I didn't last a month. I didn't even care about the other symptoms of peeing my pants, falling off balance in the middle of the street, the pain in my ears that was treated like tmj. I gotten so depressed & with all the meds, with previously diognosed Bi-Polar... I went into mania's & was even 302, four times in a month. that was 2 yrs ago.

I'd given up on doctors & hated all the pills, I even thought thats where the other symptoms came from, I just wanted to feel well. out of desperation I played my own devils advocate & went to a methodone clinic where herion addicts were treated. I told them how many pills I took & they took me for outpatient.

Never doing herion they took my up to 285 mg of methodone, I had them take me back down because it still didnt help my pain. i'm down to 30 mg & the clinic don't know why I'm not the typical patient but I still keep getting more symptoms, the one side of my face stopped moving & they dont know why, Over the past year I ve been to the er for chest pains, they never find anything. I forget everything. I did have 1 MRI that was inconclusive & no body would write the pre cert # for me & the noro dr is booked till May.

It's just 10 at night right now, but as soon as day... I've got something to look for & some to fight for. When tracy said she was a nurse & I could see the relationship between her family was so kind loving, I thought she was so perfect & if these things afflicted her, then I maybe i'm not crazy & Maybe now I don't have to carry this guilt around because I couldn't handle it all & maybe God could help someone like me too with an answer.

i hate long blogs but my soul started crying, God bless you & your family tracey... I wish they best for everyone else on here. I know i'm not alone.

I saw this episode a few nights ago while laying in bed. I went from laying to sitting up...and saying aloud, "Oh my God!" with each symptom described because I too have these symptoms, have had two MRI's to test me for Multiple Sclerosis and this time, also tested for Lyme Disease. Once again, both came up negative and my Neurologist had the bedside manners of a wild boar! You know an MRI scan has what...16 frames in it? He was flipping through each scan at the rate of about 5 second intervals, looked at the paperwork and said, "Both came up normal" and actually GIGGLED at me! (This all happened about a week ago) I am so mad at myself that I didn't have the courage to stand up for myself to him. Probably because I'm so physically exhausted and mentally drained by no doctors giving a crud about my symptoms and trying to figure it out. My supervisor had me apply for Short Term and it's been denied because nobody wants to approve it without a diagnosis. So, I've been at home with no pay. I cry now with frustration because I feel like i'm being thrown around by everyone. I have scanned a few shots of my MRI and have them stored on my computer. Here are my symptoms:

-Constant burning in the lower back of my head
-Ringing in my ears
-Hearing loss (most noticed when other sounds around aka: water running, tv on etc)
-Migraines (and have increased a lot past month)
-Tingling/numbness on right side of my face and occasional twitching.
-Vertigo, swirling room, tipping over feeling.
-Focus, confusion, memory problems.
-Feeling of "Flu" coming on (aches, pains, joints, nausia, vomiting)
-Depression (DUH)
-Floaters in my vision
-Fatigue beyond words
-Incontinence (and getting worse)

What do I do at this point. I've been going through this for six years and when I finally gained the courage to look into it again...when my symptoms began interfering with life, work...I recieved the same treatment. I'm lost, I'm tired, I'm overwhelmed. Does anyone have the same experience and have any advice?

Tracey Killarney, your story on Mystery Diagnosis caught my attention due to the severe headaches you had. Your symptoms are not quite the same as mine, but I have severe head pain.

This symptom started in 2006 after receiving the Meningococcal Vaccine. A few minutes after receiving the vaccine I fainted in the waiting room and since then I have had severe, constant head pain. The pain is worst in the back of my head and where the neck meets the head (although it is all over). When I wake up in the morning I have to get up because my head is in so much pain. My head also feels very tight like there is a lot of pressure.

Along with these symptoms I also have abdominal pain located right above my belly button. This pain is constantly present, though when I have my period I do not have cramps in my pelvic area, instead the pain above my belly button intensifies extremely and I get pain down my legs to my feet. Sometimes when the pain above my belly button is worse I also feel sick to my stomach in that area and sort of in my throat, a strange feeling. I also get pain in the right right region of my abdomen (where the appendix is located) every couple weeks. When this pain occurs it feels like a burst appendix.

I have also noticed the lymph node on the left side behind/under my ear to be swollen. I can feel sometimes it is extremely large and other times it gets smaller. Also, my left tonsil is enlarged.

Another strange symptom is that when I walk for more than about 15 minutes I begin to feel very dizzy and the ground and the sky look like they're moving. It's a very uneasy feeling. Also, when I stop walking, my legs immediately feel hard as rocks and tight. Also, my heart feels like it is skipping, or stopping a beat, more often.

I eat healthy, drink plenty of water, and try to exercise lightly every other day, but we have noticed my stool is sometimes very hard and other times shredded. We have also noticed blood in my stool which has been on and off since before the vaccine in 2006. When this first started it was light and not often, but in the past few months it is much more frequent and the blood is much more visible and there is more of it. It is bright red.

Also, after fainting after the vaccine, I lost 10 pounds and although I eat enough and healthy and throughout the day I am unable to get back to the weight I was in 06.

We have been to many, many doctors in search of an answer including: cardiologist, endocrinologist, neurologist, gastroenterologist, ENT, gynecologist, optometrist, tried alternative medicine, physical therapy, and been to pain management. Tests I have had done are: 3 head CT's, 1 head MRI w/ contrast, many blood tests, spinal tap, echocardiogram, EKG, EEG, EMG, stress test, heart holter moniter, neck x-ray, abdominal pelvic ultrasound, abdominal CT w/ contrast and barium, inner ear tilt table test, test to check for blood in stool.

All tests have shown normal except for that I have no flora in my intestines (which I'm now taking a probiotic for, though I do not notice any differences), slight valvular regurgitation in the heart, and they have seen that there is blood present in my stool sometimes. Doctors no longer take me seriously and do not know how my symptoms can be connected, if they even are, and none really know what to do next and I leave the doctors office not knowing any more than when I came in. The only thing we can think of next is a colonoscopy/endoscropy (though doctors don't think it will show anything), checking adrenal glands, or seeing an oncologist or hematologist about my lymph node. Do you, or anyone, have any idea what this could be or even what direction to go next. I would very much appreciate any help. Thank you.

Dear Tracey, I saw the Mystery Diagnosis episode on TLC this afternoon. I was diagnosed with a trigeminal schwannoma last May and had stereotactic Gamma knife radiation at the Mayo Clinic last July. I went for a 2nd opinion at John Hopkins this March as I was still having severe headaches that are impacting my life daily. The hope is that the tumor will, of course, not get larger, and that the cells in the center of the tumor start dying to the point of collapsing in on themselves. Unfortunately, this process is estimated to take 2-5 years and there is no guarantee that it will actually shrink and stop pressing on the nerve. As you know, the tumor is actually coming from the sheath that is supposed to protect the nerve, so, as the show indicated, it is really challenging to operate on successfully. The neurosurgeons agreed that due to my tumor being in the very center of my head, it was very likely an operation would do more harm. I was encouraged to see the show as I have been unable to find anyone else who even knows what a schwannoma is - let alone experienced one! I wish you continued health and thank you for sharing your story.

Greetings Tracey and All What a blessing it is to know when someone of long suffering, has found their answer! I am still in my journey and my heart aches for others who are experiencing,frustration,closed doors,discouragement,all while being sick and KNOWING IT! Without listing lengthy symptoms. I am greatly encouraged to keep fighting. Being in North Carolina, I have seen the Neurosurgeon that did Tracey's surgery. Her diligence to pursue the best is evident in her story. Now a year after being seen by this Dr. and now seeing the "show",has reminded me about his expertise. Tracey's diligence is also a good reminder that the "right diagnosis" came first, then the right Dr. with the solution. Thank you Tracey and all involved! Although, this Neurosurgeon, did...undiagnose me with my original diagnosis. I now have more hope in my fight to the right diagnosis. If indeed it would involved Cranial Nerve surgery,I will return to him and he will be the one to do it. Again...Thank You! There are many conditions/diseases, that mimic others. Resulting in confused/frustrated patients and doctors. May we all continue to fight to find that ONE(or more)doctors who have a passion to join us fight for an answer.

Can someone please tell me the doctor's name in NC

I just saw the show on TLC and I am still NUMB! I am shaking..... In July 2001 I had neurosurgery for a tumor of the Petris Apex. I had suffered for years with many of the same symptoms you experienced. The tumor finally eroded my Cochlea and I lost hearing. I persisted with ENT until they gave me a CT scan. Then they found the tumor and the rest is history. In my case the neuroradiologists all said it was malignant and told me to finalize my life. They said they could not remove it because of it's location to all the nerves. I found Dr. Hall at the Univ of MN and he said "it is not malignant and we need to identify it for radiation treatment. After 12 hours of surgery, I awoke to "it is gone!" They were able to remove it and after a long haul I am 90% and no sign of a returning tumor. God bless you for sharing you story and letting people know they need to be their own advocate and persist.
Thanks for your ear and feel free to contact me anytime.
Rog47@comcast.net

I saw this show last night and was really shocked at the many missed opportunities. Sadly this only looking at one symptom iso the whole picture is one of the problems I have seen too often.
What worried me even more is how someone who has incapacitating headaches for which she uses medication, has dizzy spells, has short term memory loss so she cannot remember a conversation from the day before, is still working as a nurse. I mean dedication is good, but isn't that a bit irresponsible?