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re: Trigeminal neuralgia - dealing with severe nerve pain - 15 month Update pg3
Posted on 2/12/19 at 8:15 pm to emboslice
Posted on 2/12/19 at 8:15 pm to emboslice
If first line medications like carbamazepine aren't doing the trick, go see a radiation oncologist that does Gamma Knife. Highly targeted dose of radiation designed to ablate the problem nerve root. Very safe in well-trained hands. It's not invasive like a surgery (microvascular decompression oftentimes is only successful when there is an aberrant artery pulsating on the nerve root) and has pretty good success rates. Radiation oncologists can treat this with radiosurgery without a Gamma Knife (using a regular linear accelerator or CyberKnife machine) but it's not as good. Find someone who does this often.
1
Posted on 2/12/19 at 11:48 pm to metallica81788
quote:
metallica81788
Thank you
Posted on 2/13/19 at 10:06 am to emboslice
quote:
There’s only so much CBD/THC your body can process. Trust me
I've exceeded that limit a few times. He's great now. Surgery was a complete success, and he doesn't a single lingering symptom at all. Only thing serving as a reminder is a pretty wicked scar above his ear, but he couldn't care less about it.
Posted on 2/23/19 at 5:37 pm to JGood
Bump for new eyes. Our appointment is on Tuesday in Portland.
Posted on 2/25/19 at 2:56 pm to emboslice
quote:
my SO who had her SCM cut when she had brain surgery
quote:
numbness/loss of vision and hearing/drooling and nasal dripping on that side
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.
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: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.
Traditional medicine
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
Posted on 3/9/19 at 11:24 am to emboslice
After a 14 hr drive through ice and snow we made it to Portland in what typically takes 4.5 hrs.
Met with the doctor who was great. We didn’t get much accomplished but scheduled an MRI of her brain and neck for the beginning of April.
The doctor was more concerned with the regrowth more than the TN. He says he has patients who come back in like clockwork every 4 years... they open them up, clean them out and send them on their way. This is seeming more likely to happen for us but we won’t know anything until after the appointment.
What really has me believing the tumor is back is that 3 nights ago, (I was asleep) my SO walked outside for some fresh air and she was in such intense pain she had to lay on the ground for 15 minutes. This is the type of thing that was happening 3 yrs ago when the symptoms started. She says it feels like gravity is just forcing her to the ground, always on the left side. Kind of like vertigo or something...
He prescribed her Gabopentin (sp?) which we filled but have no taken yet. Does anyone have experience with the medicine they’d like to share? As of now, she more than likely will not take it due to the side effects of depression and the state of mind she is already in. Should I mention the other med mentioned in here to the doc? I did and he said Gab is what he wanted to try first without really saying much about the other one.
Thanks to those who will / have given suggestions
Met with the doctor who was great. We didn’t get much accomplished but scheduled an MRI of her brain and neck for the beginning of April.
The doctor was more concerned with the regrowth more than the TN. He says he has patients who come back in like clockwork every 4 years... they open them up, clean them out and send them on their way. This is seeming more likely to happen for us but we won’t know anything until after the appointment.
What really has me believing the tumor is back is that 3 nights ago, (I was asleep) my SO walked outside for some fresh air and she was in such intense pain she had to lay on the ground for 15 minutes. This is the type of thing that was happening 3 yrs ago when the symptoms started. She says it feels like gravity is just forcing her to the ground, always on the left side. Kind of like vertigo or something...
He prescribed her Gabopentin (sp?) which we filled but have no taken yet. Does anyone have experience with the medicine they’d like to share? As of now, she more than likely will not take it due to the side effects of depression and the state of mind she is already in. Should I mention the other med mentioned in here to the doc? I did and he said Gab is what he wanted to try first without really saying much about the other one.
Thanks to those who will / have given suggestions
Posted on 3/9/19 at 5:35 pm to emboslice
It's generally considered to be one of the most painful things humans are capable of experiencing. High rates of suicide among trigeminal neuralgia patients.
I find it odd that she is unwilling to take heavily researched and tightly regulated pharmaceuticals but will take a completely unregulated drug known for its unpredictable side effects.
I find it odd that she is unwilling to take heavily researched and tightly regulated pharmaceuticals but will take a completely unregulated drug known for its unpredictable side effects.
Posted on 3/9/19 at 5:43 pm to emboslice
The debate between carbamazepine (Tegretol) and gabapentin (Neurontin) is still ongoing and there isn't substantial evidence at this time that one is better than other in regards to trigeminal neuralgia.
If she agrees to take one of those medications and it doesn't provide relief, she could be tried on the other but in reality many patients will ultimately need gamma knife radiosurgery to address the culprit branch of her trigeminal nerve. It's not an invasive surgery and very safe when performed by an experienced radiation oncologist or neurosurgeon.
The scary fact is with this disease there's generally two kinds of patients long term: Those who undergo successful treatment and those who attempt to harm themselves until they either join the successful treatment group or successfully commit suicide. Some estimates suggest that up to 50% of sufferers who do not achieve a reasonable degree of symptom relief will attempt suicide within three years of diagnosis.
She needs to get professional, mainstream medical help and abide by their recommendations.
If she agrees to take one of those medications and it doesn't provide relief, she could be tried on the other but in reality many patients will ultimately need gamma knife radiosurgery to address the culprit branch of her trigeminal nerve. It's not an invasive surgery and very safe when performed by an experienced radiation oncologist or neurosurgeon.
The scary fact is with this disease there's generally two kinds of patients long term: Those who undergo successful treatment and those who attempt to harm themselves until they either join the successful treatment group or successfully commit suicide. Some estimates suggest that up to 50% of sufferers who do not achieve a reasonable degree of symptom relief will attempt suicide within three years of diagnosis.
She needs to get professional, mainstream medical help and abide by their recommendations.
This post was edited on 3/9/19 at 5:49 pm
Posted on 3/9/19 at 7:04 pm to Roger Klarvin
quote:we are, but for people who have medical history of depression, I understand why she has reservations.
She needs to get professional, mainstream medical help and abide by their recommendations.
It seems you are still stuck on the Kratom thing. She took it for about 3 weeks and hasn’t in some time. She is not depending solely on that. Acupuncture has helped a ton and so has massage/chiro
We THINK it’s TN but there is also a chance the tumor is back. we won’t know until after April 11
Good to know that carbamazepine (Tegretol) and gabapentin (Neurontin) are relatively similar. Perhaps the side effects of carbamazepine aren’t the same. She won’t know unless she tries.
Interesting that some that have taken it told her that when taking the gabopentin there’s a fine line between having relief and throwing up. I know this is hard to believe, but it’s the same problem she has with Kratom. Throwing up is extremely painful for her already throbbing neck and face hurting. Just saying she has her reasons for reservations.
This post was edited on 3/9/19 at 7:06 pm
Posted on 3/9/19 at 8:39 pm to emboslice
Can probably start with something like gabapentin or amytriptyline which have been shown to help nerve type pain. She can just see her PCP for this is she's willing to try meds.
This post was edited on 3/9/19 at 8:40 pm
Posted on 3/14/19 at 8:45 am to emboslice
Here's our experience - if it's too long, don't read:
My wife was having severe nerve pain in her scalp (like fire) for 3 years, and was diagnosed with Occipital Neuralgia. They put her on Gabapentin & Lyrica (so I can't really say if any side effects were due to one or the other).
They take a few days to build up in your system, and can make the pain more bearable, but they desensitize everything to a degree, and if you miss a day (which is likely because they're controlled and they won't refill your prescription until you've run out) it will leave you in pain a couple of days until it builds back up.
We wanted to try for another baby, but those medications were bad for that, and my wife was sick of being beholden to that crap every day, so she tried to start ramping down on it. That didn't go great either.
Eventually one morning she couldn't sleep at 2AM due to the pain, and she was searching online for relief. She came across some people that claimed to be cured by this oddball treatment. The guy calls it "Central Nervous System Restoration" and it's a mix of chiropractic work and skeletal plate adjustments in your head. He does some testing to see which plates in the skull are "locked" then he treats them, allowing it to heal itself.
It sounds like voodoo. I even laughed when my wife explained the treatments and testing. It wasn't covered by insurance, either. But after like the first 4 day session, my wife was back. Like 90% fixed. It was unreal. It was a legit miracle of God. She had quit her medications cold turkey the first day of treatment and by day 4 she was giddy and telling me how food tasted better and I seemed funny again.
We finished the rest of her treatments and she's been pain free for two years. Eliminated some allergies she had as well. Crazy stuff. God is good.
I'm telling you this because 1) Maybe that treatment will work for your SO, 2)Miracles shouldn't happen in a corner, 3) There is hope out there that this won't last forever.
If you want the doctor's name (I think he's still in the Dallas area) I can give it, but didn't want to sound like I'm pushing him. It seems nutty, but it absolutely worked for my wife.
Hang in there and keep searching!
My wife was having severe nerve pain in her scalp (like fire) for 3 years, and was diagnosed with Occipital Neuralgia. They put her on Gabapentin & Lyrica (so I can't really say if any side effects were due to one or the other).
They take a few days to build up in your system, and can make the pain more bearable, but they desensitize everything to a degree, and if you miss a day (which is likely because they're controlled and they won't refill your prescription until you've run out) it will leave you in pain a couple of days until it builds back up.
We wanted to try for another baby, but those medications were bad for that, and my wife was sick of being beholden to that crap every day, so she tried to start ramping down on it. That didn't go great either.
Eventually one morning she couldn't sleep at 2AM due to the pain, and she was searching online for relief. She came across some people that claimed to be cured by this oddball treatment. The guy calls it "Central Nervous System Restoration" and it's a mix of chiropractic work and skeletal plate adjustments in your head. He does some testing to see which plates in the skull are "locked" then he treats them, allowing it to heal itself.
It sounds like voodoo. I even laughed when my wife explained the treatments and testing. It wasn't covered by insurance, either. But after like the first 4 day session, my wife was back. Like 90% fixed. It was unreal. It was a legit miracle of God. She had quit her medications cold turkey the first day of treatment and by day 4 she was giddy and telling me how food tasted better and I seemed funny again.
We finished the rest of her treatments and she's been pain free for two years. Eliminated some allergies she had as well. Crazy stuff. God is good.
I'm telling you this because 1) Maybe that treatment will work for your SO, 2)Miracles shouldn't happen in a corner, 3) There is hope out there that this won't last forever.
If you want the doctor's name (I think he's still in the Dallas area) I can give it, but didn't want to sound like I'm pushing him. It seems nutty, but it absolutely worked for my wife.
Hang in there and keep searching!
Posted on 4/7/19 at 6:57 pm to Huck Finn
quote:
Hick Finn
Thanks for the feedback, and sorry for the delayed response.
It sounds like your wife had some type of Cranial Sacral treatment of sorts, and that’s amazing that it worked! My SO had a local CS guy who worked well, but he’s since moved to another place. We are looking for someone new, but on the west coast.
I’ll follow up again with her about finding someone else, she hasn’t had that treatment in a while. I don’t think it’s voodoo either
Chiropractor and acupuncturist are the only relief she’s gotten.
We have another appointment in Portland Wednesday & Thursday of this week for MRI and then a follow up with the doctor. Will keep y’all posted
Posted on 4/7/19 at 10:36 pm to emboslice
Has anyone suggested spinal cord stimulation?
Posted on 4/8/19 at 11:23 am to CorkSoaker
No Corky. Is that with type of machine that a PT would use or something a chiropractor would do? Will look into it regardless
Posted on 4/9/19 at 1:02 pm to emboslice
I’m not sure why she doesn’t want to try FDA approved drugs but Lyrica should work for her. It is the pro drug of gabapentin and a lot stronger. Research it.
Good luck.
Good luck.
Posted on 4/9/19 at 6:39 pm to emboslice
She needs a neurologist, ophthalmologist, or a surgeon in those professions
Posted on 4/23/19 at 8:05 pm to emboslice
Just for an update
She got her MRI’s done and there was no sign of regrowth from the tumor. This was great news!
The pain is coming from a blood vessel that’s resting on top of her left TN nerve. It’s in the exact spot where the surgery occured, but our doctor wouldn’t confirm the surgery caused it.
Originally she was prescribed gapopentin and recently he wrote her a script for tegretal (sp?). She has yet to take either.... as I have stated numerous times in the thread, we are hesitant to be on pharmaceuticals. However, she is considering starting to take the medicine just to clear her head (pain) long enough to figure out what she wants to do
It seems this will be a lifelong battle.
The other options were surgery. One was to reopen incision (behind left ear), remove the piece of skull to access site, and put a buffer between blood vessel and nerve. 70% success rate - she said no
Second was to put a needle in her cheek (going up towards eye) and injecting alcohol or inflating a balloon of sorts to kill the nerve. 50% success rate. But it would make half her face numb and she’d lose her smile - the only thing she has right now.
Just wanted to keep y’all updated and hopefully have an ongoing discussion here. I appreciate all the feedback and stories.
She got her MRI’s done and there was no sign of regrowth from the tumor. This was great news!
The pain is coming from a blood vessel that’s resting on top of her left TN nerve. It’s in the exact spot where the surgery occured, but our doctor wouldn’t confirm the surgery caused it.
Originally she was prescribed gapopentin and recently he wrote her a script for tegretal (sp?). She has yet to take either.... as I have stated numerous times in the thread, we are hesitant to be on pharmaceuticals. However, she is considering starting to take the medicine just to clear her head (pain) long enough to figure out what she wants to do
It seems this will be a lifelong battle.
The other options were surgery. One was to reopen incision (behind left ear), remove the piece of skull to access site, and put a buffer between blood vessel and nerve. 70% success rate - she said no
Second was to put a needle in her cheek (going up towards eye) and injecting alcohol or inflating a balloon of sorts to kill the nerve. 50% success rate. But it would make half her face numb and she’d lose her smile - the only thing she has right now.
Just wanted to keep y’all updated and hopefully have an ongoing discussion here. I appreciate all the feedback and stories.
Posted on 6/7/19 at 7:26 pm to emboslice
You guys should try peripheral nerve stimulation. Look up Dr. Jefferey Rowe in Philadelphia, PA. He has pictures of the procedure on LinkedIn..
Posted on 6/7/19 at 9:58 pm to emboslice
Hey Em
I had no idea that it was so bad. All I can offer is prayer. You know that we love you and we're looking forward to your next visit. I'm so sorry that your SO is suffering so badly. You've done so much for us. I wish that there was something that I could do.
I had no idea that it was so bad. All I can offer is prayer. You know that we love you and we're looking forward to your next visit. I'm so sorry that your SO is suffering so badly. You've done so much for us. I wish that there was something that I could do.
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