My daughter has TN

My daughteter is 45yrs old. She was first diagnosed with TN about a year ago. She tried all the medicines and procedures the Dr. recommended and nothing helped. She finally had the surgery where they took a plug out of her scull behind her ear. It seemed to be working but, about 4 mos. later the pain came back with a vengence. She lives in a different state than I do. Twice when her boyfriend called me I could hear her screaming in the background. Then her screams turned to (Please somebody kill me.) I have never in my life dealt with Drs. with so little compassion. They told her boyfriend to take her out of there and don't bring her back as there was nothing they could do for her. I spent the week with her last week so I could help her and she had a few episodes that she was able to handle. I don't know what to do now. She has lost her job because they said she had used up all her leave time. The state where she lives is Arizona and they do not help anyone if cost them much.The cost for them to see her was $30.00. He had to leave and borrow the money to pay them. I am sure they had to look high and LOW for Drs. that care so little. If she dies or commits suicide I will not rest untill I ruin these Drs. What happend to the Hypicratic Oath. (First do no harm) When did Drs start caring about money more than human life. Shame on them.

I'm at a loss for words for your daughter --- the key here unfortunately is to research many hours for so many of us. Cannot depend on doctors to have the right treatment or right answers. Perhaps there is a support group near her--there is a tab above that it is under.

She may need an antidepressant, may need to file for disability --

there are 100's of things, choices, meds, procedures, alternative medicine ideas...... if she is unable -- somebody should get reallllly educated here and figure out what to do that is BEST for her - give her ideas and choices. ALSO the book "Striking Back" is our "Bible" here --- sometimes a second MVD surgery does the trick --- sometimes it's a combination of meds, not just one.

Pain management doctors are a specialty that she might look into

Lidocaine cream prescription is verrrrry helpful for me in between appts. My regular doctor can call that in.

Keep Posting!!!!

Thank you so much for your sugestions. She does have and appt. next week for pain management. I have never heard of Lidocaine cream but I will forward this to her and see if her Dr. will call in an Rx for her. Again Thanks.



Kc Dancer Kc said:

I'm at a loss for words for your daughter --- the key here unfortunately is to research many hours for so many of us. Cannot depend on doctors to have the right treatment or right answers. Perhaps there is a support group near her--there is a tab above that it is under.

She may need an antidepressant, may need to file for disability --

there are 100's of things, choices, meds, procedures, alternative medicine ideas...... if she is unable -- somebody should get reallllly educated here and figure out what to do that is BEST for her - give her ideas and choices. ALSO the book "Striking Back" is our "Bible" here --- sometimes a second MVD surgery does the trick --- sometimes it's a combination of meds, not just one.

Pain management doctors are a specialty that she might look into

Lidocaine cream prescription is verrrrry helpful for me in between appts. My regular doctor can call that in.

Keep Posting!!!!

Thanks for the info Arizona is certainly a chalenge. This is very good info.

Cleo said:

Praying your dr will be ok I had surgery today it went well I’m home resting thanks for my gift I will continue praying for your daughter we all in this together love y’all

I had to go through 44 doctors over 9 years before I found a doctor who knew what TN was truly about and treated me correctly. He has saved my life. A few other doctors said I had TN but they did nothing to help or so little. And now that I have been treated correctly for years I can see they had no idea what to do.

My doctor is in Houston and can help your daughter. Look him up on line.

Dr. Brian Loftus. Bellaire Neurology.com 713-■■■■■■■■

I will be thinking of you.

Arizona is challenging I live there You would not think it would with one of the better neurological center in the US (Barrows Neurologist Institute) it is part of St. Joseph Hospital. I have been through 3 doctors and am going on my 4th I think soon. Someone on this web site that is AZ told me that Dr. Eric Foltz is good but I do not know I left a message for them to call me and let me know how much experience he had with Tn paitents that was 2 days ago and I have not heard back from them yet. I also called Barrows Neurologist inst. they gave me the name of there go to guy Dr. Eric Ortega I do not know anything about him. There is also a doctor Zimmerman out at the Mayo clinic in scottsdale AZ Dr Zimmerman is on the board for the Facial pain Assoc. and is speaking at one of there conference in Sandiego CA soon neither Docotr Ortega or Dr zimmerman or Barrows Neurological Inst. is on my insurance. I know sometimes your insurance company will let you go to doctors that are not on there list if you can not find one on there list that know about your problem. What Doctors has your Daughter seen in AZ I am just curious if they are any the bad doctors I have found I to am thinking about going to a pain managment doctor. I would like to know the doctors name that told her to leave that they could not do anything for her Good Luck I would have her try the antidepressants I am on them they help

Let me tell you that Valium really helps one. It has been used for TN forever. It can be better than Vicodin, Oxycodone, etc. tell your doc you want to try some. The creams works for some really well but doesn’t help others at all. You have to try them for yourself.

Remember just because a doc is a neurologist dose not mean he knows how to treat TN.
Some neuro guys can prolong your pain by not treating you correctly because of their ignorance. And yes I know how very hard it is to find someone who knows what they are doing.

One thing I could suggest is calling a lot of neuro docs offices on the phone and asking if they treat TN patients regularly before you waste your time and money on a doctors appointment. Because if the girls in the office don’t even know what TN is it may be a clue that the doc does not treat TN a lot and that is where you do not want to be.

MY HEART GOES OUT AS I HAVE BEHAVED THE SAME. AND SADLEY THE DOCTORS WHO TREAT CANT FATHOM THE PAIN OF PATIENTS. I HAVE HAD THE SAME PROCEDURE AND EVERY DAY I WONDER IF IT WILL

RETURN BECAUSE IT WILL BE THE END. WHILE PROB. OF LITTLE HELP I FOUND A SURGEON WHO I TRUST AS

A CARING DOCTOR NOT LOCKED ON MONEY. I WAS REFERRED TO HIM BY JOHN HOPKINS AS WHO THEY REFER THERE MOST COMPLEX CASES. HIS NAME IS DR. JEFFREY BROWN IN NEW YORK CITY. I KNOW FOR FACT HE DOES MUCH JUST BECAUSE HE CARES. ANY CHANCE YOUR DAUGHTER COULD SEE HIM. I HAVE ALSO DEALT WITH THE GREED OF SOME BUT TRUELY BELIEVE IT IS ABOUT PATIENT. HE IS SO WELL KNOWN IF YOU GOOGLE HIS NAME AND NY HE WILL COME UP. GOOD LUCK



KATTHOMPSON4 said:

Arizona is challenging I live there You would not think it would with one of the better neurological center in the US (Barrows Neurologist Institute) it is part of St. Joseph Hospital. I have been through 3 doctors and am going on my 4th I think soon. Someone on this web site that is AZ told me that Dr. Eric Foltz is good but I do not know I left a message for them to call me and let me know how much experience he had with Tn paitents that was 2 days ago and I have not heard back from them yet. I also called Barrows Neurologist inst. they gave me the name of there go to guy Dr. Eric Ortega I do not know anything about him. There is also a doctor Zimmerman out at the Mayo clinic in scottsdale AZ Dr Zimmerman is on the board for the Facial pain Assoc. and is speaking at one of there conference in Sandiego CA soon neither Docotr Ortega or Dr zimmerman or Barrows Neurological Inst. is on my insurance. I know sometimes your insurance company will let you go to doctors that are not on there list if you can not find one on there list that know about your problem. What Doctors has your Daughter seen in AZ I am just curious if they are any the bad doctors I have found I to am thinking about going to a pain managment doctor. I would like to know the doctors name that told her to leave that they could not do anything for her Good Luck I would have her try the antidepressants I am on them they help

I am still very worried about your daughter. I wrote to you before and recommended my doctor, Brian Loftus in Houston. I still think he could help you. You can see him and pay cash for the first visit and he can start to get you on the right path.

Let me tell you every day, and I mean every day, during my TN attacks I would tell my husband that I would DO ANYTHING to get out of the pain. Well when it came time for my first gamma knife procedure I was so afraid and he reminded me what I said....that I would do anything.....so I went ahead with the first of two. I have TN on both sides of my face.

My point is do not let insurance keep you from getting the help your daughter the help she needs. I know it is not to much as I look into his costs because someone we know ask me to.

As I wrote you before It took me 9 yrs and 44 docs to before I found Dr. Loftus. I saw a number of neuro docs, reg docs, dentist, people who told me I was crazy, I had several teeth pulled that did not need to be because dentist don't know on the whole what they are doing, I had nerve blocks, spinal taps (so many I don't remember how many) and on and on.

But when I got to Dr. Loftus he does not just give you a pill and send you on your way. I have been seeing him for 12 years now and each time I see him he still tweaks my meds or tries new a approach he has researched that will help me. I am never just a patient. I am always someone he is constantly working to help so I feel that I have hope.

Also when I was first told I had MS it was by THE TOP MS doctor in Houston. So when I first went to Dr. Loftus he told me that he had not confirmed that I had MS. So he called in a favor to get me into a doctor that had a 8 month waiting period for new patients. When I left that doctor I knew I never had - and did not have MS. Dr. Loftus has given me a life worth living.

I pray for your daughter tonight.

Hi imperatriz- I was also very sad when i read this post--however- I looked at the date and saw it was posted almost a year and a half ago. There have been no updates since--so we can only hope the situation improved!!

Imperatriz said:

I am still very worried about your daughter. I wrote to you before and recommended my doctor, Brian Loftus in Houston. I still think he could help you. You can see him and pay cash for the first visit and he can start to get you on the right path.

Let me tell you every day, and I mean every day, during my TN attacks I would tell my husband that I would DO ANYTHING to get out of the pain. Well when it came time for my first gamma knife procedure I was so afraid and he reminded me what I said....that I would do anything.....so I went ahead with the first of two. I have TN on both sides of my face.

My point is do not let insurance keep you from getting the help your daughter the help she needs. I know it is not to much as I look into his costs because someone we know ask me to.

As I wrote you before It took me 9 yrs and 44 docs to before I found Dr. Loftus. I saw a number of neuro docs, reg docs, dentist, people who told me I was crazy, I had several teeth pulled that did not need to be because dentist don't know on the whole what they are doing, I had nerve blocks, spinal taps (so many I don't remember how many) and on and on.

But when I got to Dr. Loftus he does not just give you a pill and send you on your way. I have been seeing him for 12 years now and each time I see him he still tweaks my meds or tries new a approach he has researched that will help me. I am never just a patient. I am always someone he is constantly working to help so I feel that I have hope.

Also when I was first told I had MS it was by THE TOP MS doctor in Houston. So when I first went to Dr. Loftus he told me that he had not confirmed that I had MS. So he called in a favor to get me into a doctor that had a 8 month waiting period for new patients. When I left that doctor I knew I never had - and did not have MS. Dr. Loftus has given me a life worth living.

I pray for your daughter tonight.

I have to say I had a COMPLETELY different experience with Dr. Lofts and would never recommend him to anyone.

Vonni, I'm not of much help info wise as I don't live in the US re doctors and the like, but I do know that this community here is one of the best places (well, THE best, lol) for support, and information on a condition the average doctor just can't deal with that well...I lucked out, my GP's have worked with me to find solutions, and the best one right now for me is a 4 prong attack combination of Gabapentin, Efexor-XR, Baclofen and B-12 shots. Anyone that expects to just give her a pill/surgery and then send her on her way all 'fixed' just doesn't understand TN. No doctor will get it right first time, but being looked over, dismissed, treated in a condescending way, treated like a hypochondriac, drugs seeker, attention seeker/drama queen, or simply a cash cow just isin't right, and isin't fair. I'm so sorry your daughter is experiencing this type of thing...All I can offer is a big hug to her, and a prayer for a swift solution...


I am curious about your dr. as well. Are you still pain free or almost pain free? How did he treat you? Thanks so much
Imperatriz said:

I had to go through 44 doctors over 9 years before I found a doctor who knew what TN was truly about and treated me correctly. He has saved my life. A few other doctors said I had TN but they did nothing to help or so little. And now that I have been treated correctly for years I can see they had no idea what to do.

My doctor is in Houston and can help your daughter. Look him up on line.

Dr. Brian Loftus. Bellaire Neurology.com 713-■■■■■■■■

I will be thinking of you.

How awful! Some people DO have to travel to get quality care. I am lucky that I have a great neuroscience clinic not far away. And I see a great neurosurgeon there. I can call him anytime........I haven't, but he told me I could. I will pray for her......and you and her boyfriend. XXOO