Just a few questions and thoughts. This history of brain tumor and post-surgical development of trigeminal neuralgia is interesting. Where specifically was the tumor located and what type of tumor was it?

I wouldn't imagine the removal of her SCM to cause directly the trigeminal neuralgia but rather that she has had neurosurgery of some unspecified sort. Without really knowing the details of the neurosurgery, I'm curious about the nasal dripping. Does this occur in conjunction with the pain, or is this a more constant issue? Is it only on one side?

Again, without really knowing what they did when they operated previously, it's really hard to say if this is something even medically manageable (including Kratom as medicine) to begin with. Considering her history of neurosurgery, physical irritation of her trigeminal nerve due to post-surgical changes is something that needs to be considered and may only be fixed with more surgical or radiotherapy options.

Point being, it is important to discuss with the neurologist the associations that occur with the pain and those that occur regardless of pain. As you mention, an MRI can help with some answers particularly when compared to her previous. The neurologist may recommend carbamazepine until the MRI can be done or answer found. It's a pretty widely prescribed drug for a variety of diagnoses, and its the drug with the most evidence of helping those with classical TN. That being said, there are a ton of medications used to treat TN. Another issue to be discussed is if she accepts traditional medicine and it doesn't work, how far do you go before the surgical/radiotherapy option is put on the table. As difficult as it may be, she needs to think about what that threshold is.

Good luck with both the appointment and thereafter treatment of your SO's TN.

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Posted by emboslice

Member since Dec 2012

4519 posts

Posted on 2/25/19 at 3:43 pm to DavidStHubbins

quote:
Just a few questions and thoughts. This history of brain tumor and post-surgical development of trigeminal neuralgia is interesting. Where specifically was the tumor located and what type of tumor was it?

The tumor was on the left side behind her ear, wrapped around her brain stem. Forgive me if that seems a little off, the scar is behind her left ear, that’s why I say that. But it was wrapped around the stem / on the left side. I can’t remember the exact tumor/cyst name. It wasn’t cancer. Epidermoid cyst perhaps? Basically something didn’t form while her mom was still carrying her.... it creates a misfiring of cells with nowhere to go so it creates the mass. The tumor will regrow (the CBD/THC intake will help slow down this process) ... it took 29 years to affect her. Most people who get this type of tumor get it in the back of their leg or the ankle. Hers just happened to be in the head

FWIW the SCM was cut, not removed. Post-op she wasnt given any physical therapy whatsoever so I’m often left wondering if that had healed up better and it’s strength was re-evaluated if she would be fighting fewer symptoms now.

quote:
Curious about the nasal dripping

So the nasal dripping started when she got original symptoms. It was when she was having an “episode” and only dropped on the left side. Her mom flipped out when she heard, because she thought it may be spinal fluid dripping. Was this your thought? As far as now, the dripping from her left side happened for the first 4 weeks of this latest bout. It doesn’t seem to be dripping now but sometimes when the pain is really intense she will drip. Or drool.

quote:
Traditional medicine

of course this is her first resort but after the info in this thread, an obviously her ongoing pain, she will have to do something more than traditional meds and Kratom. She doesn’t depend on Kratom for the relief but sometimes it helps her go to sleep.

IMO, she will have to do some type of surgery. As much as she doesn’t want to (and with the lowest healthcare it’ll be a bitch), in order to have a decent life without pain she’s going to have to give in to either the everyday medicine or the one time surgery. I would do the surgery myself. Then again, I am not in her shoes and I’ve never had surgery.

When a doctor goes into your brain, when it’s over you are different. I think that’s her biggest fear, since it was her reality ~3 years ago

You’re the second person to mention that medicine so it’s on my list of things to discuss with the doctor.

We are currently unable to go to the appointment because of snow having most of I-5 northbound closed

We have about 22 hrs to get there with a 6 hr drive. Hoping to make it.

I wanted to quote you better but my quote function was messing up during the response.

Btw, although TN seems like it’s the culprit we really don’t know. She says that she thinks something is physically moving, as if her plates were shifting. If you are in the position to know, she also gets a small “ball” that will come up behind her ear whenever she is in excruciating pain. You can physically feel it pop out. No clue what it is.

Part of me is wondering if the screws in her head are pressing on something

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