Which doctor should I have manage my TN pain? Neurologist, PCP or pain management specialist?

General General TN & GPN (Old Site)
1

Hi all, I'm new to this site and I'm relieved to find people who understand what I'm going through. Anyway, I've been in so much constant stabbing pain that I'm not able to take care of myself. I do not want to be on opiate pain meds, but I'm wondering if I should be. Having ongoing severe pain is very exhausting for myself and for those around me.

Should I be seeing a pain management specialist? Currently I have my pcp and neurologist managing my TN symptoms. I am tired of ER and meds. However, I wonder if I should try different dosage (Lyrica) or something else as surgery is invasive. Considering gamma knife surgery but very hesitant. i'm am scheduled to go in for neurosurgery consult next month. For pain managment right now, I take Voltaren and Tramadol as needed but they don't help witht he sharp pain. Btw I also was recently diagnosed with fibromyalgia or nerve pain - on the same side as my TN pain. Voltaren and Tramadol seem to help with severe body pain. I'm starting to wonder if the body pain is related to the TN pain.

If anyone has advice or thoughts on my case, it will be really appreciated :) Thanks for your time.

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Hi, Hopeful. They say that opioids don't help TN/nerve pain. For me, it does. I take a low dose of Percocet because I have a herniated disc in my neck and my hands go numb. I'm a secretary and a pianist, so my hands MUST work in order for me to earn a living, and thankfully the Percocet works for me. I hate it when I read all the negatives about opioids because Percocet works for me, and at low doses I'm able to function very well. I feel normal, not high. And my pain is controlled. A pain management/spine specialist prescribes it for me. I'm sure I will have to have my neck re-evaluated soon, as I'm about to hit the year mark. I had a double cervical discectomy & fusion in January 2012 and don't want another neck surgery unless I have no other option.

When my TN/migraines flare (they seem to come together at the most unbearable points), I take Imitrex (a triptan generally prescribed for migraine) for relief. I also take a tricyclic antidepressant (amitriptyline) for the TN pain.

I had Gamma Knife surgery on March 3 and have had positive results. My pain isn't completely gone yet, but it is much better. I've read it's not a permanent fix -- I wonder if one exists. From what I've learned here, you're lucky if any procedure or medicine works forever. We all just take one day at a time. I tell people to live to the fullest on their good days, and rest on the bad ones.

My neurologist did not effectively treat my TN. After a couple of attempts, I realized I just couldn't get anywhere with her on the issue. After my GK surgery, she said she was glad I surpassed her on my own and saw a neurosurgeon. My neurosurgeon didn't jump right into GK. We tried Baclofen, which I reacted badly to, and then the amitriptyline. By my 3rd visit, he was ready to schedule the GK procedure.

GK is completely non-invasive, and you can elect to be sedated. I have to be sedated for just about any MRI-like procedure. I just flip out. I remember very little from the procedure. I have two scars on my forehead where they screwed the halo so tightly on my head. I rested for two days afterwards (mainly to sleep off all the sedatives) and then got back in gear. I had two bad pain days the following week, and the pain then began to subside. There are some who think it's a horrible destructive procedure. But remember -- Your neurosurgeon will determine what he believes is best for you and your pain. You cannot compare your pain to someone else's. No one's pain is identical. Perhaps similar, but not identical.

When you have severe pain just about anywhere, I think you tend to hurt all over after awhile. It's probably because your muscles tighten in response to the pain. Fatigue also sets in as a reaction to severe pain, as can depression.

Just my two cents. Hope this is helpful.

Cindy

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Hi Cindy, I really appreciate your response. Yes, I agree with you, and I am beginning to learn that pain is different for everyone and it does get me fatigued and depressed. Fatigued and exhausted is more of a fitting description. And that my body does ache all over in the aftermath of debilitating TN pain so I do have hard time differentiating what kind of pain I'm in. Of course depression is tied into fatigue and exhaustion. So I realize this is a cycle, and I already understood, before joining this community, that currently there is no cure for TN because it is relatively rare and less research is done on it. I am hoping for a cure though perhaps in the future :) However it is such a relief to find others who might be experiencing something similar to what I am going through. I appreciate, again, your response :)

What I gather from what you just wrote is that perhaps a neurosurgeon will be able to help me the best. Of course, I understand that each and every case is different since the human body is not a machine. I am planning to read up on the Striking Back handbook. I give you so much credit for what you've endured. Obviously you have endured a lot of different medical exams, perhaps more than what I've gone through so far. I have had my share of MRIs, and I certainly do not enjoy them :) I give you a lot of credit for being able to endure so much and I'm thankful I found this site.

Thanks for the info on what meds work for you. I don't think I will know what will work for me until I try them. I will, however, talk to my PCP and neurologist and see what they can do for me. Your reply definitely helped me. At least right now, it gives me much emotional relief, which means A LOT to me. Thanks again.

4

Hi hopefulforacure,

I am sorry that you are having a difficult time. I have ATN and my DR suspects that I may have fibro as well. It is a common story having a difficult time receiving proper help.

I suggest that you research neurosurgeons and facial pain specialists that are within reach to you. There is a list at the top of the page under the Doc Appointment Tab. Sometimes universities have specialists.

I have had this for three years and have seen a lot of different DRs. I have seen a neurosurgeon and a facial pain specialist neurologist. I currently work with my GP to try to manage medication while I wait to see another neuro for additional diagnoses and am on a waiting list for a pain clinic.

Each and everyone of us are very different with our experiences, treatments and DRs. The most important thing is to be your own best advocate, learn as much as you possibly can and do not stop looking for help until you find a DR that has a good strong knowledge of TN, believes you and wants to help with treatments.

Jane

5

Opiates definitely didn't work for me as I'm already on very strong ones for spinal tumours in the middle of my back in the cauda equina part and on my sacral nerves along with arthritis in my my spine and spondylolisthesis of the spine. The tumours are benign but give me a lot of problems pushing on nerves and blood vessels.

The opiate I'm on is when morphine no longer works so it's a controlled drug and very strong called Palexia (Tapentadol).

I'm also on Gabapentin so that didn't prevent it from happening either.

At the moment the Tegratol is working but I don''t know how long that will work for.

I'm now living on edge like never before waiting for the next attack. This year I've been on steroids twice for bells palsy but I'm thinking because it was the same side of my face as this that it might have been the start of TG.

I'm just off to do some research on cannabis because if this comes back I'll try anything.

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Ahhhh, cannabis ... What was stupid recreation as a teenager/college student may just prove to be useful. I'd certainly try it if it were legal!

jackson said:

Opiates definitely didn't work for me as I'm already on very strong ones for spinal tumours in the middle of my back in the cauda equina part and on my sacral nerves along with arthritis in my my spine and spondylolisthesis of the spine. The tumours are benign but give me a lot of problems pushing on nerves and blood vessels.

The opiate I'm on is when morphine no longer works so it's a controlled drug and very strong called Palexia (Tapentadol).

I'm also on Gabapentin so that didn't prevent it from happening either.

At the moment the Tegratol is working but I don''t know how long that will work for.

I'm now living on edge like never before waiting for the next attack. This year I've been on steroids twice for bells palsy but I'm thinking because it was the same side of my face as this that it might have been the start of TG.

I'm just off to do some research on cannabis because if this comes back I'll try anything.

7

HI what a good question have only ever seen a neurologist but have had gamma twice and mvd once. Gamma helped short term and seems to numb which helps long term with pain. When I had gamma they knocked me out to put on halo then woke up and did procedure. Halo didn't hurt just weird and then it was just like h having an Mri. When done increased halo and rested for an hour then went home. Thing to remember is procedures work differently for everyone but for me personally gamma was not bad at all. Hope you find some success with pain no matter what you try!

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Hello, HopefulForCure— I'm sorry that you found this TN road, but happy that you found this site! It has been such a place of refuge and help with all things TN. Unfortunately, I found this site after 2 Gamma Knife Surgeries, and an MVD with Dr Carson. Oh, how I wished that I had seen Dr. Carson first! By the time I saw him, 4 years into TN, the 2 GK shots of radiation actually cut the TN nerve leaving me with anethesia delorosa, which is a painful numbness. Dr. Carson actually found a vessel on my nerve and used muscle from my scalp to wrap around the nerve so that it would not cause the large stabbing pains any longer. And, he succeeded! The harsh stabbing pain has not returned in some 10 years, but the damage from the GK remains. There is no hope for my nerve to get better. The only surgical option is more damage to the nerve, and Dr. Burcheil (OHSU) said that if damaging it didn't work in the past, it will most likely not work now. So I get botox shots for migraine, which actually help the TN nerve stay calm for a month or so. I rotate the meds that I'm not allergic to. This way the body cannot build up a tolerance to them. I'm on year 14, so the trial and error of medication is well established by now.

Be careful to try one thing at a time, maybe two. Jot down your reaction to the meds, pos or neg. Note how long they help the pain, and how the pain is changed when using them. I have katemine cream mixed with gabapentin and baclofen that I love b/c it is rubbed on the exact spot that hurts, rather than medicating my whole body. There are lidocaine patches that are traded off with the cream. I also walk at home on the elliptical or rebounder for two hours each day, and go to the gym 1-2x p/week.

The pain management specialist that helps me actually worked with Jenneta when he lived in Ohio. He is an anesthesiologist and has been such a life saver for me and my family. He came into the picture after the second failed GK. He explained that with younger people, the nerve can regenerate, which is what happened to me 2x. It's an amazing surgery for elderly people who cannot have invasive surgery, and who are over the age where the nerve regenerates. I now realize that damaging my body was not an answer for me. At the time of the decision, I was in so much pain and we knew so little about this, even after researching it, we opted for the easiest way to freedom.

Today I eat mostly live foods, exercise daily, do my best to stay up and on my feet, serve my family, and work part time from home. My husband is amazing, as are my kiddos, extended family and my sweet friends. It's a very rough hand to be dealt, but when we understand that we are warriors in this fight for a cure, this fight to make our lives and the lives of those around us better, we can move forward—we can win. Don't get me wrong, there are many days where I cry about this because it is unrelenting at times, but it's important that I allow my tears to flow. There is great loss here. There is great gain also.

Please friend me here on this sight if you'd like an we can talk further. Take care HopefulForCure!

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Hi Lynda,

Thank you SO much for sharing your journey with TN. These days I am so consumed with being pain free, I wasn't sure if I would make the right decision. The pain IS unrelenting, and I am still trying to figure out how to deal with it as you can tell from my post. And also how to just get by.

Thanks for sharing your experience with Gamma Knife surgeries and MVD. our experience has me thinking if I am still young enough to have nerves regenerate. I have more direction as to what to ask my first neurosurgery consult, however. Thank you. It definitely helps me put things into perspective.

Lately I've been just curled up, often crying, in bed wishing the pain to go away. It is very hard on my family members as well because they can barely take care of themselves, let alone me. I like how you said it's important that you allow your tears to flow. My tears are flowing as I write this. I have to be careful, though, to not irritate the right side of the face as I cry lol I love how you said there is great loss but great gain also. I kept telling myself that when I was first diagnosed and sometimes because of the terrible pain, I often or almost always forget that, like you said, there is great gain also.

Thank you for putting things into perspective at this desperate time for me. Took me several hours to write this as I am struggling with just self care. At the moment, I feel utterly alone in this journey, and it helps to be a member to this site and for people like you.

I will friend you and see where it takes me. Thanks again :)

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Hi justjane,

Looks like we have things in common. Yes, it is a difficult journey but I am hopeful for something to work. I exhausted myself replying to Lynda(though writing my experience down helped me), so I plan to get back to this site and look at your reply and others as well. I hope you have a "good" day today. Off to rest now :)

justjane37 said:

Hi hopefulforacure,

I am sorry that you are having a difficult time. I have ATN and my DR suspects that I may have fibro as well. It is a common story having a difficult time receiving proper help.

I suggest that you research neurosurgeons and facial pain specialists that are within reach to you. There is a list at the top of the page under the Doc Appointment Tab. Sometimes universities have specialists.

I have had this for three years and have seen a lot of different DRs. I have seen a neurosurgeon and a facial pain specialist neurologist. I currently work with my GP to try to manage medication while I wait to see another neuro for additional diagnoses and am on a waiting list for a pain clinic.

Each and everyone of us are very different with our experiences, treatments and DRs. The most important thing is to be your own best advocate, learn as much as you possibly can and do not stop looking for help until you find a DR that has a good strong knowledge of TN, believes you and wants to help with treatments.

Jane

11

Being type 2 with no surgical options I personally have found working with my internal medicine dr (pcp) works best for me

12

I had Gamma Knife and would not recommed it to anyone. It damaged the nerve so badly and causes other issues. Do not consider.

1 Like
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Thanks for your reply! Really appreciate it :) Could you elaborate? Have you considered MVD?

14

hopefulforcure, I had 2 MVD’s, first one, I was pain free, 4 months, the second one for 11 months…not even worth the recovery.

I am glad they are thinking about euthanasia in IL, because I cannot picture myself an 80 year old lady dealing with so much pain :skull_crossbones: