I wrote awhile back that OHSU does charity care for the uninsured. I have filled out all the paperwork and forgot a few things. They called and I have been approved.
Additionally, the neurology department already seems phenomenal. They called me when they received my medical records so that I would know that they had them and were reviewing them. It seems that they do not take every case. OHSU is THE place to go in the state for many neurological issues. Sometimes they require that you see a neurologist in your town first, and get a referral from that person if they cannot help you. They explained all of this too me before hand but they said my GP had written a letter to go with the file that explained that he called several neuro's in my town and no one had worked with a TN patient before.... interesting.
OHSU then called me 3 days later to tell me they had reviewed my file and the doctor was interested in treating my case. Her words... interested.... I found that intriguing myself.
Now registration, where my charity care comes from, has to call the neuro unit since everything isnt' quite in the system and give the okay. Then I can be scheduled.... I am feeling so relieved, I cannot even tell you. They told me that I would be seen within 3 weeks of making the appointment.... This is a huge relief for me.
And, I really like how they do things and keep you informed so that you are not wondering where you are in the process. I was not expecting that.
I will keep you guys posted as I travel along the journey with this teaching hospital since they are one of the premier centers for TN treatment in the Northwest.
On Friday I had two messages from the hospital. One was because they needed more information for the financial assistance. The other was to schedule my appointment.
I called scheduling back and reminded them that I applied for financial assistance. I asked them what the normal wait was for an appointment. She said that it was only 3-5 days! Wow. If I went to the neuro in my town, it would be a 90 day wait minimum.... I was not expecting such a quick appointment time for a new patient.
So, now just waiting for my award letter. I can't wait to be seen.
justthefacts, there is a whole team at the facial pain center at OHSU. Dr. Kim Burchial is the doctor that heads the clinic. He also serves on the board of directors for The Facial Pain Association to advise on TN.
I opted to go with another doctor who had earlier availablity but is a part of the Facial Pain Clinic. I would prefer not to say his name yet, because I want to figure out if he is someone that I would recommend or not. If not, I won't say anything further:) But if he is great, I will let you know. I do feel like I am in safe hands!
Anyway, I wanted to update everyone in general:
I received my award letter today. The process took about 20 days all together from the time I faxed the application over, to my approval. They called asking for additional information on Thursday and explained with that information, they were issuing an award letter. I received that today. I called up to scheduling and I will be seen on Thursday...... I can't believe it is that fast! YAY!
OH! This is awesome news for you! Two days and you'll be better informed on the what, how of your treatment options. I'm rejoicing with you!
Did you happen to see the link on a cure for TN on the Forum yesterday? On my iPhone, I could not access the video from the site: facingfacialpain.org, BUT I was able to read about the research that needs funding for curing TN. Amazing site and efforts are being made on our behalf. I was so encouraged in reading it yesterday. And, now your good news! Totally stoked for good news for two days in a row.
Just got back from my appointment. I have to say the facility is one of the most beautiful hospitals/clinics I have ever been in. Huge sweeping views of the Willamette River, lots of full glass windows to view it all with. Getting to the building is a bit awkward, but all in all, not too bad.
I saw Dr. Gibbs. He was one of the BEST doctors I have ever seen before. Wonderful bedside manner. In fact, my mom even commented on it as well when we were leaving. I did not feel he was rushing me. He listened to each of my questions and explained his reasoning behind some of the decisions that he was recommending.
He said that I certainly am not the typical TN patient, and not even the typical ATN patient, even recognizing that no two patients are alike. He is leaning at that point between either ATN or TNP but he said that BOTH are "types" of TN, just not the classic TN. He said what makes me unique is that I have numbness and have lost feeling in one side of my face which really leads him to believe that I have had some kind of dental or blunt force trauma to my face. I can't think of ANYTHING..... I have an overfilled back tooth but have had it for years... had no recent dental work in the past couple of years. No recent blunt force to the face. What I did have happened over 12 years ago.... he said that that would be improbable but not impossible.
What he did say over and over is that I was in good hands. He wants me to go for an MRI next week (I will go on Thursday). He said he would call me the next day with the results. Told me that Classic and ATN are treated the same, though some treatments for the ATN are not as effective. We will be keeping in close contact in the next few weeks as I am put on a new medication. He said that if this does not stop the pain, then he is going to refer me to see Dr. Buchial as he is the area's expert on TN. He said if something shows up on the nerve in the MRI, he will also automatically refer me to Dr. Buchial.
Now for the bad news: He added Trileptal to the current dosage of gabapentin. So, I get to continue to be the non concentrating loon I am right now since we just uped the dosage of gabapentin. Also, I have a right hand tremor that he believes is due to the meds too.
I feel good on the one hand, but I also feel so frustrated. I am supposed to take the bar exam in a neighboring state -- Dr's words: "you probably will not have the mental functioning to do that." Yay for me. Sigh.
Okay, I am exhausted and off to take a nap... I feel as if I am on an emotional rollarcoaster.
Lisa, This is good news for you! To be in good hands is an awesome thing as you go through your trials of different classes of meds and their outcomes. Sorry for the inconvenience of the horrible drugs they designate for this monster, but there will we one or a combo of them that will help and it will be better than having no medication at all. It seems that every step of the way the LORD has been there to guide, direct and give you favor. Keep us posted on your journey. Take Care, LyndaS
Sounds like you are on the right road for some help, I hope so. I find it interesting about the facial numbness tho. My whole side of my face, scalp, tongue, cheeks, everything went completely numb first. complete numbness for approx. 1 1/2 years before it started getting slowly less. still not completely gone and gets more when I do strenuous work. After it went to about 10% numbness the pain in my jaw started. I did not have any facial trauma or dental work on that side for along time before it started.
I continue to remain in awe of this facility. I had my MRI on Thursday. Friday at 6pm, the doctor called me and told me that my MRI was back. He stated that there were no tumors and no reason to believe there was MS as there was no lesions..... yeah. He said that the trigimenal nerve looked good. He said there was a vessel very close to it, but not touching. So, as he put it, I have "garden variety TN." I had a good chuckle at that one. He wanted me to call him back and let him know how the new medication was doing next week as we "may want to adjust that."
My whole experience there has been so wonderful! I would totally recommend it to anyone needing excellent care.
Lisa, so pleased your now receiving such good care. I still dont understand ATN. What is causing your pain? Like you my MRI (without contrast) was normal. (I did have a lesion but they were not concerned) What is causing our ATN? Are you Classic TN also like me if so what is causing that?
My doctor said it is the wearing away of the protective coating around the nerve.... and basically it starts interpreting EVERY touch as a touch that is painful. Not sure why that is. They don't know why it is. I get classic TN shocks but mostly it is ATN.
Wow, I feel like I cannot stop raving about this place.... (and no, I am not some weird spammer.... lol). I am having some issues of moderate stomach pain with the new medications. The neuro has told me to check in with him after about a week. I have played phone tag with him for a few days now. Well, they gave me this sheet when I first saw him that was a "mychart" thing were you can log in and see what health information was in the computer about you.
I logged in and was messing around when I found a way to message the neuro unit questions. So I did just that. Within four hours, I had a response from my doctor. That was pretty cool! This stops the "missing the phone call" bit and gives you another way to contact the doctor.