Just out of curiosity and because I am seeing probably my 5th doctor regarding treatment for this, I was wondering how many different doctors other members have seen. I'm not just talking about a diagnosis, but to get proper treatment, be it medication or some type of invasive procedure. One thing that each neurologist/neurosurgeon brings up with me is the fact that they have to watch out for patients just trying to get on meds and using neuropathic pain as an "excuse" to get meds. This puts me on the defense each time. I am seeing a new neurologist, pain specialist this week and what do I say if he brings up this same comment/question during the initial interview? Here is my list of doctors that I've seen since this started:
3 different dentists
1 endodontist
1 facial pain specialist
2 neurologists
2 neurosurgeons
All I can say is: "Thannk God for insurance or I would be bankrupt by now".
An added note to this thread - I have never once asked for or been prescribed any type of opiod pain killer since this started. The dentists and endodontist gave me Vicodin during my treatment with them, but as everyone on here knows, it had absolutely no effect on the pain I was experiencing. I still have the pills left in my medicine cabinet.
One thing I was warned about: don’t get too many doctors involved. Each one has a perspective, and it may differ one from another. This could cause a problem. Two: either go to a neurologist to address your treatment or a pain specialist. Both have different approaches and YOU need to decide what is best for you. I had seeen an Endo, Dentist and a PCP to rule out the usual stuff. Then was sent on to a neuro (by my PCP) to confirm diagnosis and order MRI. I stayed with him until I began to have problems w/too much tegretol. This could have been avoided by simple blood tests periodically. I chose a pain specialist who is conservitive and careful in his treatment. I chose to go this route after two failed GKs MVD. This TN road is quite a journey, isn’t it?
D McGinnis said:
An added note to this thread - I have never once asked for or been prescribed any type of opiod pain killer since this started. The dentists and endodontist gave me Vicodin during my treatment with them, but as everyone on here knows, it had absolutely no effect on the pain I was experiencing. I still have the pills left in my medicine cabinet.
I have seen as many if not more Dr's about my TN in the last 7-8 years. I cannot think this a good thing and as Lynda suggests a more focused Dr approach can be better. I joined the group about 20 months ago in the depths of prolonged pain. A little while later I met my present Dr who has helped me so much. I read a piece that Red has written saying patients who feel well cared for by their medical caregivers do so much better, I can wholeheartedly agree with that. I have no intention of moving from her if possible.
Hi D, I saw 7 initially, but now only one, my neurologist. Although I do discuss it with my GP as well. He could also be included in the initial amount which would make eight total, depends on how you wanna look at it. LOL Min
I would love a more "focused" approach regarding doctors, but finding one who understands or at the very least, is familiar with this disorder is so difficult. I have stuck with one dentist (that I haven't seen again after this started because I am terrified of retriggering the initial pain). One of the neurosurgeons was a doctor recommended by the national facial pain sites. However, he has now recommended me to the new neurologist that I will see this week. My primary care was quite rude to me when I last saw her because she has never heard of TN. I think my biggest problem has been communicating my pain and my pain levels because I always ending up seeing a doc when I am in a mild pain day!! I am going to start a new thread about describing the pain here and that may help me communitcate better with the doctors. I keep a pain journal now too and will take that with me when I see the new doc.
Red just posted something in the ATN group about the Mcgill pain questionaire. It's a list that helps you describe how you feel you can google it and bring with you to your next doctor visit.
I am uninsured and unemployed.... can you imagine? I am blessed that a teaching university is treating me and covering the cost.
I saw a neuro in the ER who recommended I follow up with my doctor, who then recommended I see a neuro.... lol. The neuro I am seeing now, after the MRI, is recommending I see the "expert" neuro.... I am avoiding my dentist although I need dental work... I will be finding a dentist who knows about TN. Totally scares me to do otherwise!
What do you say? That depends on why you switched doctors? I don't count the dentists in your doctors. Simply because they serve a very different purpose. My answer to the doctor, should he ask, would be "the truth." For me, I need to feel comfortable with the man or woman that I am putting my life in his/her hands. I need to be able to have a working relationship with that person. I lucked out with my neuro. He has a FANTASTIC manner about him. I can't imagine seeing someone else, though he is referring me to someone within his facility. I trust him.
Oh, I want to say to... make sure everyone is communicating with each other..... make sure your neuro is sending the reports to your GP and even your dentist. My GP made it very clear that he could treat me, but that he would ask the neuro for advice because as the GP, this was not his specialty. However, he wanted to know what was going on and what was found out.
So, keep everyone in the loop. Everyone. That way the right hand knows what the left is doing. Taking a team approach and getting everyone work together can be tough at first, but I think in the end, it is best for you.
I saw 3 dentists, 2 ENT specialists, 2 Nuerologist, 3 Nuerosurgeons, an ear specialist and 4 GP's. It was the ear specialist who finally decided it was TN.
The pain specialist has by far been the most interested in trying to get at the cause and not just treat symptoms. He is sending me to an oral surgeon today to see if he has insight into anything that might be done. My pain is now everyday and settled deep under the bottom right teeth and into the jaw. It varies in strength, but it is always there.
2 Endodontists (3 times for the first, 6 for the second)
2 GPs (one for the first, twice for the second)
2 Oral Surgeons (once each)
2 ENTs (once for the first, twice for the second)
2 Orofacial Pain Specialists (twice for the first, too many to count for the second)
1 Neruologist (ongoing, before the ATN/TNP and currently)
1 Orthodontist (once)
1 TMJ correction specialist (once)
1 Radiology, MRI
2 Radiology CTs
For the doctors I've seen ongoing, I'll only count them once. I'll give a low estimate of 23 doctor appts. This was for a six month period. That's almost once a week. I was losing my mind.
But I finally found a doctor that can help me, or at least fully understands my problem, and that really helps.
Everyone just kept giving me Narcotics... nothing to "prevent" the pain until I saw the Neurologist I'm with now who told me to STOP pain meds... cus it was only creating more problems for me. Apparently I was getting rebound headaches on top of the TN/GN pain. It's been rough... but I've gone almost 4 weeks without ANY pain meds... (cus I started Tegretol and Neurontin) I'm trying to learn how to deal with pain other than pain meds... not gonna lie.... its hard...
Now I'm under 1 Neurologist and 1 General Pract... and I like them a LOT.
...Im in a lot of medical debt :((
Working 3 jobs trying pay everything off.... probably causing more pain from all the stress of working...
Everyone just kept giving me Narcotics... nothing to "prevent" the pain until I saw the Neurologist I'm with now who told me to STOP pain meds... cus it was only creating more problems for me. Apparently I was getting rebound headaches on top of the TN/GN pain. It's been rough... but I've gone almost 4 weeks without ANY pain meds... (cus I started Tegretol and Neurontin) I'm trying to learn how to deal with pain other than pain meds... not gonna lie.... its hard...
Now I'm under 1 Neurologist and 1 General Pract... and I like them a LOT.
...Im in a lot of medical debt :((
Working 3 jobs trying pay everything off.... probably causing more pain from all the stress of working...