When doctors don't believe you

General General TN & GPN (Old Site)
21

Shindig, I’m sorry you’re having to go through this…it hardly seems fair that so many of us have to advocate for ourselves while trying to get through each moment with TN.
After reading what bellalarke posted it reminded me of something I recently copy/pasted but forgot to copy the link ( med head) so I’m not sure where I read it… I’m sharing it anyway…
There is a reference to Love et al 1998, so you could possibly look up that reference.

“The role, if any, of remyelination in initial symptomatic recovery after microvascular decompression is unclear. Clearly, remyelination cannot account for the immediate relief from neuralgia. In the longer term, however, it is possible that remyelination helps to ensure that relief of symptoms is sustained. Remyelination may also be responsible for spontaneous remission of trigeminal neuralgia in some patients. Failure of microvascular decompression to relieve symptoms is most common in patients with very long-standing disease, in whom severe local depletion of oligodendrocytes and astrocytes may prevent effective remyelination after decompressive surgery. A further possibility is that the aberrant remyelination that is occasionally seen in the compressed nerve root (Love et al., 1998) may, by preventing the separation of groups of apposed axons after decompression, contribute to the failure of this procedure in a few patients.”

Either way, finding a Neuro or doctor to “walk” with you as you try to find solutions is priority 1.
Is there anyway to refute/contest what’s in your file?
I’m losing my Neuro of many years to retirement… Before him, I hadn’t had much luck with kind caring or compassionate Neuros…so I’m very nervous about this new Neuro I see in August.

Don’t look too far ahead!!! I’m trying not to do that either. In my case, my doctors all have said in as many words that there’s not much else…
But I don’t think about that, not often anyway.
We have to hold on to HOPE and keep truckin’ one moment at a time…
Positive thoughts as always, Mimi

22

Thx Mimi, I just schedule an appointment for June 4 with Dr. Gwinn at swedish who does the PNS units, I'm hoping he can see through the BS from the pain clinic. He at least has seen atypical TN before, which even my neuro wouldn't admit to. So hopefully he knows what we go through.

23

Positive thoughts my friend , sounds encouraging!
If he can’t see through the BS, then you’ll just have to guide him through with the “real” version of events!
; )

24

I just read up on your Gr. Gwinn. He sounds perfect for you. Try to let go of the bad experience at the pain clinic. The AP did not know you. She made a big mistake. Stick to your story and Dr. Gwinn will get it. So glad you got it coming soon(ish).

Good day for me too. Got a call from Dr.Honey’s office at UBC and my appointment is on July 21. He’s the Vancouver Functional surgeon, like your Dr. Gwinn.

Mimi…your new guy, does he specialize in this stuff?
I’ve been reading a lot about glial cell dysfunction too.

25

HinShindig,
Glad to see you are finally getting in to see a doctor that does the PNS. As you know, it has really worked for me since the failed MVD.
Best of luck, and please let me know how it goes!
Christine

26

Shindig:

I am so sorry that you have to go through with this. I agree with others, bring someone with you who can support you and help contradict the doctors.

I would almost file a complaint regarding the way you were treated at the Pain Clinic. As you know, we are all suspect because there are no physical signs of pain. The disease we share is a blind one. I've been lucky with my support system. My wife went with me to every appointment, and if I couldnt explain what I was feeling (due to being medicated, or my stupid pride) she would stand up and take over.

I also highly reccomend writing down how you feel. When you are in pain, write it down. Describe it as best you can. Then when you go to see a "Specialist" let them read it. You wont have to repeat yourself 100 times, and you get to rewrite it as many times as you want to ensure you get the point across..

I am so saddened to hear about the way you are being treated. I mean, come on, if you wanted "Drugs" I'm sure you can find them cheaper on the streets!

Best of luck-

Smash

27

Wow, I don't even know what to say to that. Obviously, not getting treatment is not an option, but I don't know what to tell you about the next move. I would go to the Mayo Clinic or some place to get treatment, but that is probably not your option.

28

Shindig, can you take tegretol (carbamazepine)? Just grasping at straws...........anything that might help you. Sorry you're going through this. ((((((HUGS)))))

29

Yeah the TN1 meds don't help, I started with gabapentin, then oxcarbazapine, but it ended up being the tricyclic and other anti depressants that help the most.

I wonder how long opiate withdrawal goes on for, it's been almost a week and I still wake up soaking wet with soaked blankets and freezing cold at the same time, every night. I did not want to be at work this week, it went soooooo slow, especially after lunch. And haven't been able to eat much. And normally I love being at work. Sucks.

30

Can you call your GP and have him prescribe enough to get you thru until you see the pns doctor?

31

Hi shindig, I’ve been there too, & truly sorry. I’ve been to a neurologist & my husband was in the room which he never acknowledged. All he said is I need new MRI’s & you probably don’t have TN. I’ve had another experience with my GP, I needed a EKG, cause I was getting a neuro stimulator, so when my Dr came in she gave me clearance & proceeded to ask me how I got this way, :frowning: I jus answered, they told me from my car accident. Proceeded to get dressed, & all she could say was good luck :frowning: so sad cause she doesn’t believe anything & I’ve been there with ear pain & I had a cold so I thought my ears were infected. :frowning: nothing. Idk how? It’s jus the response of insensitivity that comes across. I’ve also had other experiences with her when I was having such stomach pain all I did is go back & forth to her & the gastro dr, it turned out to be gallbladder I can say that went on for @ least 6mo, @ that time I was on 900 mg of gabapentin, & another stomach pill called dexillant, cause I have a hiatal hernia, that didn’t help me! & ended up in the hospital, all is good w/that. We’ll, I’m sorry to ramble & finally some oxycodone is kicking in so now sleep be for 2am is good. Feel better, have a nice day!

32

me too my physician never believed… At the end he discharged me I pleased him nit to do but since there is no MS or tumor no thing to do, he said ! I’m looking for another doctor… Life is so bad we are suffering but no one can see it !!

33

Hi Shindig, How are you doing this week?
Keep Heart
Bellalarke

34

Everything's back to normal, some pains are worse, like a boring feeling inside my jaw and sharp bursts that feel like getting lemon in a wound randomly across my cheek. But other than that things are good, lots of energy. I have an unopened month supply of oxy 20s and a prescription for 10s but didn't even have a desire to take any, nor would I ask another doctor for them and get labeled as a seeker.

It was a lot easier to quit oxycontin than tobacco.... I cut down dramatically but still can't quite stop myself from doing it. (tobacco)

35

Hey, way to go. That’s impressive. So I’m wondering, do you think the oxy was helpful when you were taking it?

Good to have it on hand. Fantastic your energy returned.

36

It knocked the pain down 10-20%. I think cutting down on tobacco has helped more.

Now on my opposite side of pain I have a wisdom tooth coming through the skin that hurts like hell. I want to get the one out on the top on the side where my TN is. I'm not sure if they do all 4 at the same time. I should probably schedule it for a thursday or fri so I can rest over the weekend.

37

My neuro has talked about the rebound effect of taking opioids. How they can take the edge off but later can actually cause more pain. Your experience has made me wonder about trying to do without my 12:30 tramacet med.

Wisdom teeth. Yikes. Buy lots of straws. Hang tight. But you’ve got this pain thing down…a few days and you’ll be good to go.

38

Aw Shindig…sorry to hear about the wisdom tooth! NO straws though that can cause dry socket and that’s more pain…24 hour recovery usually.
Hope all goes well! (( hugs )) Mimi

39

Sorry to hear of your trouble shindig, I would certainly write a letter of complaint to the duty manager, you should also contact your GP.

I seem to have the opposite problem regarding medication (drugs), I really don't like taking medication due to the terrible side-effects and how they can often make matters worst (I'm a bit OCD). Everyone is very quick to offer all these medications/drugs, but my worry is the damage these drugs can do to the body later on.

I have tried several drugs to control the TN, but all have made me feel dramatically worst, my GP and neurologist admire my determination and strength in how I deal with my TN type 2 pain.

My best medication is my family, sunny days, staying posotive and lots of laughing (even though laughing can trigger the TN pain), each day is hard, some days extremely hard.

I had all 4 wisdom teeth extracted about 4 years ago, this defiantly helped my TN pain. I do still feel the TN pain up in the jaw/gum area as if the teeth were still there (but the pain is mild).

I also had other molars extracted where the TN pain was located, this again reduced the TN pain. I suffer pain on all 3 major nerves on both sides (the ophthalmic nerve, the maxillary nerve and the mandibular nerve), the maxillary and the mandibular nerve are attached to the top and lower row of teeth.

It seems by not having the large rear molars present has somewhat reduced the TN pain, I still feel pain where the molars were, but its up in the jaw/gum area as if it were the ends of the maxillary and the mandibular nerve. I'm certain that if the large molars were still present, they would defiantly increase the TN pain levels as before, the nerves would still be attached causing the teeth to shout-out in pain.

As Mimi has said, no sucking through straws after a tooth extraction, this can release the blood-clot at the extraction site and cause a dry-socket (the pain from a dry-socket is terrible).

All the best.

Dallas