Where I am at (updated)

General General TN & GPN (Old Site)
1

I am here because I am at a crossroads with my TN and it seems that it's been a challenge at every turn and that nothing that should go easily with this, has.


I had a very painful flareup in June that wouldn't fade so I went to see my regular doctor. Couldn't get in. Saw another doctor in her practice. He rushed me out with steroids and Vicodin. No restrictions on my work. Took the pills and went back to work when half way done with the pills. Blew out the steroids entirely.

Had to go urgent care because the swelling hit my optic nerve and made me dizzy and made my sight blurry. I got an injection of steroids in my left glute--four inch needle. It made the inflammation subside and I was given more steroids. I was also given more steroids and Norco. The urgent care doctor also recommended that I get coffee enemas for my TN because I had a "heavy metal toxicity". Uh, yeah. No.

So then I see my regular doctor a week later. Apparently, I had a deep inner ear infection the whole time that was triggering my TN that no one had bothered to look for. (This was at week three.) I was given antibiotics and ordered to stay home for five days. I was also ordered to get bloodwork and given a referral to a neurologist, my first time seeing a neurologist for this. I was told the referral would take up to two weeks to arrive.

My bloodwork was lost by an inept person in my doctor's office. (I am 100 percent healthy other than a high level of inflammation in my body from the TN.) I had terrible customer service at a Target pharmacy who didn't bother to look in their system before telling me that my doctor hadn't sent prescriptions when she had. When I received the referral dated the 2nd, a call to the neurologist's office was met by an answering machine message saying that he was on vacation and would be back on July 9th.

I had a bad flare two days ago---hit my optic nerve again. I didn't want to do the urgent care thing again so I fought it and cried and pushed through like I always have. I called the neurologist today and the message said that the doctor would be gone until the 16th now.

Called my doctor to get a referral to another neurologist. It's going to take up to two more days to get that.

I've been scared about my options and my treatment of this and whether the pain will ever go away. I have a wonderful husband and my work has been understanding of all of this but it's a lot to take. I am so scared of what the future holds with this.

I can only hope that the neurologist has something new for me on this that makes this all easier. Thanks for giving me the space to vent....

UPDATE: Was told today and my referral is with their medical director. Still frustrated, still in pain. I am so sad and scared today. I waited until my husband left for some errands to cry today. I am angry that my pain isn't a priority to anyone responsible for my healthcare. I am hostage to this pain and feeling hopeless. I should have gone to urgent care again this week and gotten more steroids. I didn't want to put my body through that but I guess that doesn't matter now.

2

Heidi, vent away, that is what this group is for! Where else are we going to do it and be met with understanding? All the best with finding and gaining an appointment with a neuro. Don’t forget we have a button on the home page “Dr’s We Love” , may be helpful.

3

Thanks, I think I am close on this. I was told I am one to two days away from the referral. Hope that's true.

4

I understand your frustration with Doctors, I called April 1st to the local neurologists here in Delaware (we only have one group) they gave me an appointment for July 27th. It is amazing how long it can take to get appointments and is more than frustrating. I hope you feel better soon

Wendy

5

Hello Heidi,

Oh how I understand your message. There's no end to the run around with TN for me. I am the tiger chasing it's own fiery tail. I saw that you live in Van Nuys, and I realize it would be a crummy drive, but there's a neurologist (in fact a whole team) in San Diego headed by Dr. Michael David McBeth. I think they're on Mission Hill. When I lived in Calif, he was the best neuro I was ever able to find. Back in 2008 he was treating me and he and his staff were outstanding. They always called back, they helped me in emergency pain situations, and were really dedicated to finding the best treatment in an expedient way. I lost my job there because of the TN, and had to move out of state. When I move back, that's the first place I'm going. I also saw a neurologist in Irvine, Dr. Markus, who was also very knowledgeable and responsive. I went to the Cedar-Sinai team in Los Angeles, including Dr. Graff-Radford, and wouldn't take my cat there for a flea-dip.

My new neurologist here in El Paso saw me 2 weeks ago, and administered amitryptyline and I had a very bad reaction. I've sent three faxes, called dozens of times, and still haven't had a call back - nothing. It's not like I can go down the list of neurologists and see the next one...there isn't a next one here. His staff is rude. He has two offices so I never know where to try to reach him and ask if he even got the messages. The next closest neurologist who treats TN is a four hour drive away. And the new neuro doesn't believe in giving his patients pain relief, even as a back-up plan! $&*@

It might be worth it to call Dr. McBeth's office and see if they can refer you to a good neurologist in LA/Valley area.

You would think that doctors who treat TN would have a heightened sense of urgency, considering the amount of pain we deal with, and be responsive, respectful and helpful. I've never been able to get away with not paying...however plenty of my doctors have gotten away with not treating me. What garbage. I apologize for venting on your vent, but I understand so well what you're experiencing and it makes me furious. So many times I've gone home in tears from appts, devastated and hopeless, only to start all over and venture out again when the pain becomes unbearable.

Best luck with your referral! I hope you a get a great one the first time. Please post with your results :)

6

Oh, how I understand the message and this reply. If not for my kid, I would have given up a long time ago. As it is, I just have to keep trying. Good luck to all of you.

Colleen said:

Hello Heidi,

Oh how I understand your message. There's no end to the run around with TN for me. I am the tiger chasing it's own fiery tail. I saw that you live in Van Nuys, and I realize it would be a crummy drive, but there's a neurologist (in fact a whole team) in San Diego headed by Dr. Michael David McBeth. I think they're on Mission Hill. When I lived in Calif, he was the best neuro I was ever able to find. Back in 2008 he was treating me and he and his staff were outstanding. They always called back, they helped me in emergency pain situations, and were really dedicated to finding the best treatment in an expedient way. I lost my job there because of the TN, and had to move out of state. When I move back, that's the first place I'm going. I also saw a neurologist in Irvine, Dr. Markus, who was also very knowledgeable and responsive. I went to the Cedar-Sinai team in Los Angeles, including Dr. Graff-Radford, and wouldn't take my cat there for a flea-dip.

My new neurologist here in El Paso saw me 2 weeks ago, and administered amitryptyline and I had a very bad reaction. I've sent three faxes, called dozens of times, and still haven't had a call back - nothing. It's not like I can go down the list of neurologists and see the next one...there isn't a next one here. His staff is rude. He has two offices so I never know where to try to reach him and ask if he even got the messages. The next closest neurologist who treats TN is a four hour drive away. And the new neuro doesn't believe in giving his patients pain relief, even as a back-up plan! $&*@

It might be worth it to call Dr. McBeth's office and see if they can refer you to a good neurologist in LA/Valley area.

You would think that doctors who treat TN would have a heightened sense of urgency, considering the amount of pain we deal with, and be responsive, respectful and helpful. I've never been able to get away with not paying...however plenty of my doctors have gotten away with not treating me. What garbage. I apologize for venting on your vent, but I understand so well what you're experiencing and it makes me furious. So many times I've gone home in tears from appts, devastated and hopeless, only to start all over and venture out again when the pain becomes unbearable.

Best luck with your referral! I hope you a get a great one the first time. Please post with your results :)

7

I'm sorry to hear about the delays! I hope the neurologist gets back to you very soon and can help you find some relief.

Take care :)

8

Hi Heidi! Suggest you see a neuro that specializes in TN. I myself have seen 3 quacks & finally got 1 that had a specialty in seizures but young & up to date on treatment options forbTN. Since 2008 I have had 3 surgeries , 1 was MVD others they thought were the problem but apparently not. Now back on meds & scheduled to see a new neurosurgeon 8/7 that has a specialty in TN. my pain is back fast & furious & the date seems so far away but feel it will be worth the wait. I am lucky I don’t need referrals but keep pushing & stay as positive as you can. good luck & this site has really helped me so much. It’s a great place to vent & somehow makes me feel more at ease with it. everyone is so honest & helpful.