ANYONE HAVE TRIGEMINAL NEURALGIA?

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esoR
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   Posted 10/4/2011 9:31 PM (GMT -6)   
Hi,

Am new to the pain strand here. I usually live on the ostomy strand. Ostomy needed due to gut injury incurred during a surgery that on review was not needed, so am NOT up for more medical stuff.

BUT some severe attacks of electrical pain over a tooth on my upper right have been happening since summer off and on. Some very severe but so far short in duration. Tooth issues ruled out.

my dentist is on top of this and has me hooked up with a neuro who screens for this. Have had brain MRI and thinking of MRA which is supposed to show the blood vessels that may press on part of the trigeminal nerve that the sheath has worn off of. People with MS tend to have this but I do not have MS nor any brain tumor THank God for those favors.

There is a micro vascualr deconpression they can do and put in a teflon pad between the branch of the trigeminal nerve and the blood vessel it presses on but that is major brain surgery. BUT at worse case scenario they can at least do something. It is called the Jannetta procedure named for the doc who invented it. I am seeing one of the people he trained. Medical approach would be first of course and there are tons of less invasive treatments but with shorter acting benefit.

This is all new, but my mind is racing. This becomes a debilitating electric shock type facial pain syndrome and is also called Tic Doloroux as it gives people facial tics as the pain is so bad and comes in attacks. NOT a happy thing!!!!

Just wondered if anyone on here has it and how they dx'd and treated it. Thanks, Rosemary

Screaming Eagle
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   Posted 10/4/2011 9:50 PM (GMT -6)   
Hello esoR!

Welcome to our forum over here! We are here to support you anytime you need it. I did a quick search, and copied a link here for you to click on.

www.healingwell.com/community/default.aspx?f=16&m=1511577

You can do the same and use the search feature here on the forum, and Im positive you will fine quite a bit of information on this condition.

One of our members has this, and she went with a SCS unit, and if I remember right she got good relief with it. Have you checked on this type of treatment?

Take care, and let us know if there is something else we can do for you.

SE wink
Moderator Chronic Pain Forum

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momtofourangels
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   Posted 10/4/2011 10:12 PM (GMT -6)   
Hi Rosemary Welcome to our chronic pain forum. I don't have TN but I just wanted to welcome you to the forum and wish you good luck on getting your pain under control. Take care.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

esoR
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Date Joined Jan 2007
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   Posted 10/4/2011 10:13 PM (GMT -6)   
Thanks SE,

What is SCS treatment? I have only heard of the MVD Microvascular decompression.

I will click on the link you gave me. Thanks so much. Rosemary

Screaming Eagle
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Date Joined Sep 2009
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   Posted 10/4/2011 10:23 PM (GMT -6)   
Rosemary, it is a Spinal Cord Stimulator (SCS)…but it is used for conditions other than the spine. I think Skeye is the member I'm referring to, and she had one implanted somewhere around her eye and face. I remember her saying it was working very well for her.

Try the search feature, and plug in her member name, and it should bring some of her post up for you to read.

Take care,

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 10/4/2011 10:26 PM (GMT -6)   
Hi Loretta Thanks. I feel like I cannot go through one more medical thing. BUT we get what we get in life. I had to fight for 13 months to prove that my small and large intestine were basically scarred shut after a disaster pelvic floor "restoration" surgery was done. BIG misdiagnosis, unneeded removal of sigmoid colon based on wrong read scan (did not know it was wrong read at the time of course), then other internal prolapse procedures done on organs that were not internally prolapsing. I tangled unknowingly with surgeons who had been sued a combined total of 8 times for similar situations. I was unable to defecate without a gallon of colyte bowel prep due to basically scarred shut area where they attached my descending colon to my rectum, then due to massive scarring of my small bowel I had chronic small bowel obstructions and basically could not eat for about a year. Lost 1/4 of my body weight. Saw 11 surgeons at 7 medical centers across the country. All but one said I was too damaged to fix.

One I finally found said adhesions removed from small intestine and a permanent ileostomy (I pass waste out of my small intestine into a bag). There is danger that I may re-adhere, but so far so good and I have literally travelled the world in the past 4 years since this happened. A world cruise, circle south america cruise, africa, israel, greenland, iceland, you name it I've been there.

I am so glad I did that as now I have this new medical issue to deal with. THis is at least a known and I am connecting with some good docs who are in medicine for all the right reasons, so I feel more hope. BUT, after all I've been through, I assumed I would get a break for a really long time. Guess not. Gotta fight again. Thanks for welcome, don't know what I'd do without this board. We never know what curve ball life will throw at us. I'm having my share as are many on this board. Rosemary

esoR
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Date Joined Jan 2007
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   Posted 10/4/2011 10:30 PM (GMT -6)   
Thanks SE. WIll do. I am sooooo tired of medical issues. Do not know what I would do without this board. SUre wish I had come here prior to my who gut issue as members of the ostomy forum know more about the preop testing that should have been done for my pelvic issue than the docs I saw. It amazes me that as a group of patients who have been through or are going through something that collectively we have knowledge that far outweighs some docs. I speak from experience.

If I have anything done I sure am going to do more intensive research. For the pelvic issue I did consult with 3 top colorectal surgeons. These days that is not enough. We as patients have to dig deeper and educate ourselves, THEN go on our consults.

Rosemary

CRPSpatient
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Date Joined Mar 2011
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   Posted 10/5/2011 3:33 AM (GMT -6)   
Hi Rosemary, and welcome. I'm sorry that you have TN. I haven't experienced it, but I do know that nerve pain is the absolute pits. Thank you for your post to me earlier - I'm sorry that you have also experienced CRPS/RSD, but I'm so glad you controlled yours.

SE... don't quote me on this, but I have an idea that there may also be a variation on the SCS, called peripheral nerve stimulation that can be implanted to areas around the face. I think whether its possible to get the SCS in there depends on high up the spinal cord you'd need to go.

Laura

Post Edited (CRPSpatient) : 10/5/2011 2:36:31 AM (GMT-6)


Screaming Eagle
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Date Joined Sep 2009
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   Posted 10/5/2011 9:27 AM (GMT -6)   
 
        By Golly!....I believe you are correct Laura! smilewinkgrin   That is why we depend on members like you for support! wink
 
    Hopefully!.. Rosemary can find a little more information in her search here. I will take another peek later today and see if we can find more information on it as well.
 
       Thanks!
 
       SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

snobrdgrl321
Regular Member


Date Joined Jul 2009
Total Posts : 278
   Posted 10/5/2011 4:14 PM (GMT -6)   
Hi Rosemary,

Actually, I may or may not have it.... The Dr's are not 100% sure...
As for you comment regarding the electrical pain and tooth stuff, I know exactly what your talking about!! I get the worst electrical shocking pain in the tooth area and in the left temple... Not a tooth prob as almost all had to be removed years ago... Dr's tried all sorts of things. During an MRI they found I also had tethered spinal cord syndrome and from then they have been focusing on that. But the debilitating head pain is still there.

They have me on MsContin which is for my pain in my back, but sure does reduce the amount of head pain.
Just some info on it for people that don't know... It's not like a headache or migraine, mine feels like a screw driver being dug into my temple, twisted and attached to a car battery and spread thru my whole face. It's horrible.
Donna
Donna
Tethered Spinal Cord~1.5x1.2 cm spinal cord cyst at L5/S1  (Lumbar Laminectemy completed 9/10/09)~Scolosis~Migrains~Leg Deformity~Foot Deformity~Knee, Hip, Back, Neck Pain~Severe Depression~Insomenia~DDD~Artheritis (Spine)~Spinal Bone Spurs~NEW: Herniated Disc T5/T6 
"I'm not going to vacuum 'till Sears makes one
you can ride on"
~Roseane Barr~
 

momtofourangels
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Date Joined Apr 2010
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   Posted 10/5/2011 5:03 PM (GMT -6)   
Your welcome Rosemary. What a horrible ordeal you have had to go thru shakehead Those doctors should not have a license to practice medicine. I wish you all the best with getting your head and face pain under control.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

esoR
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Date Joined Jan 2007
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   Posted 10/5/2011 5:53 PM (GMT -6)   
Loretta,

Thanks, the original gut docs doing the unneeded surgery wrong then no f/u to complications is being "dealt with" if you know what I mean, but it will never get my guts back for me as they were. BUT, now new issues to deal with.

Donna, your description of your head pain is indeed very descriptive! I sure hope I don't get all that. Glad I'm getting on this. i feel 4 u.

Today I told a neighbor about what I am going through, she said "just get the root canal and be done with it and just live with your pain" This was AFTER I had explained to her what trigeminal neuralgia was, the fact that just to rule out a possible dying nerve in one tooth (this would be the easy thing) I was going to see an endodontist, but that my regular dentist is likely correct that I havve TN. I explained the whole thing. Not only was she not sympathetic she was downright rude. ONE of those who has NEVER had anything go wrong with any part of her body and likely never will is bullet proof yada, yada.

She COULD have said, "I don't really understand it, but I wish you well." Doesn't it get you how some people just don't care AND make some snide remark to boot?

I guess we just have to rise above them and communicate with those who get it. Rosemary

skeye
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Date Joined Mar 2008
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   Posted 10/5/2011 6:14 PM (GMT -6)   
Hi Rosemary,

I believe that I'm the one SE mentioned regarding the trigeminal neurostimulator. I'd love to talk to you about it & other things regarding facial pain. I don't have classic trigeminal neuralgia, but I do have something similar that effects the ophthalmic branches of my trigeminal nerve, among other things (they don't quite know what to call it because I'm such a rare & bizarre case -- after 5 yrs we still don't really know what's going on). My pain is actually in, around, and behind my eye. The neurosurgeon who put in my neurostimulator is actually a world-renouned TN expert. He's awesome & he put a lot of effort into finding a way to help me.

I haven't been around HW much lately because things in my life have been too crazy, but I do check in when I get a free moment every once & a while. Probably the best way to reach me is via email (listed under my profile), although bear with me if it takes me a bit to get back to you. I'm a first year veterinary student & most days I have less than zero free time! turn

If there is anything I can do to help in any way, I'm here for you!

hugs,
skeye

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 10/5/2011 7:24 PM (GMT -6)   
Hi Skye, Thanks I will email you after I get (what I REALLY wish would be only the need for a root canal) instead of TN ruled out with pulp test on the one tooth this pain is above. If a no go on that I will assume TN as my regular dentist thinks and that I really believe in my heart, but ruling out other things never hurts.

And after I meet Oct. 27 with TN neuro specialist. He is the screening neuro doc for a neurosurgeon who was trained by the inventor of the MVD procedure Dr. Jannetta in Penn. That is where they put a small teflon pad between the trigeminal nerve and the blood vessel that is pressing on it.

You must be young if you are in vet school. I read the Kate Cotter story where she was suddenly hit with TN at only 25 and was on all these drugs then finally had the Jannetta procedure and was freed of pain and drugs completely. Hers was the procedure I mentioned above.

Am just getting into all this health stuff in my 50's, now at 55. I had to get my ostomy at 51 to save my life due to injuries made by 2 surgeons at 50 (complex case, but not totally accidental injuries on their part, very weird case anyway...) so my trust in surgeons is shaky at best. BUT the ostomy surgeon saved my life, and so far so good with that and praying that stays that way. I had to see 11 docs in order to find one to save my life with an ostomy believe it or not. The others were just going to let me die. No doc likes to "clean up" another doc's error. I got caught in some unconsciousnable politics.

I have read so many on this board, ostomy strand too, who are so young, in their 20's who have actual disease and need ostomy. OMG!! When I was all the way to 49 I had not a health issue in sight. Of course I know many people who are 55 and are completely without any significant issues, so there is a definite variety.

Thanks for offer to email you and I will. Rosemary

Screaming Eagle
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Date Joined Sep 2009
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   Posted 10/6/2011 7:54 AM (GMT -6)   

 

        I wanted to step in here quickly and say a BIG HELLO!...to Skeye! smilewinkgrin ...and Thank You!...for your help!

  It was good to hear from you again, and we all hope school is going your way.

      Take care!

      SE wink


Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

skeye
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Date Joined Mar 2008
Total Posts : 3089
   Posted 10/6/2011 4:19 PM (GMT -6)   
Thanks SE, I owe everyone an update post, hopefully sometime soon.

Rosemary, I look forward to hearing from you, and yes I'm fairly young - 23 & unfortunately have been dealing with this since I was 18. Good luck with the TN specialist, I hope he has some answers & ideas for you. I know the surgeon I see does gamma knife surgery for TN (among other things).

Skeye

esoR
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Date Joined Jan 2007
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   Posted 10/6/2011 4:43 PM (GMT -6)   
Google abcnews.com then click health. Oct 5 was A dr. Lim who did microvascular decompression and got this lady totally out of pain. They put a pad of felt between the nerve and the blood vessel that presses on it. MicrobrAin surgery but it worked. Rosemary

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 10/6/2011 8:23 PM (GMT -6)   
Hi Skeye... I went through vet school not so long ago, so if there is ever anything I can do to help out or support on that side iPod things, please feel free to drop me an email :)

Laura xx
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

skeye
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Date Joined Mar 2008
Total Posts : 3089
   Posted 10/7/2011 9:40 PM (GMT -6)   
Thanks Laura,

I definitely may take you up on that. It would be great if there was a guide on "how to survive vet school," but I guess that would be too easy!

Skeye

esoR
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Date Joined Jan 2007
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   Posted 10/11/2011 9:45 PM (GMT -6)   
I just clicked on the video on trigeminal neuralgia and this doc from UCLA Medical Center shows how in typical Trigeminal Neuralgia there is a blood vessel that presses on or surrounds the trigeminal nerve. Using microsurgery in through the skull in back of the ear, he untangles the nerve from the blood vessel and puts in a piece of medcial teflon felt and the patients do well.

Anyone have this done. My appt with the neuro is Oct 27, but I had a really bad attack today. Typical of TN is attacks then pain free times like nothing is wrong. BUT the pain free times shorten and the attacks get worse. Many people go on many drugs, have tons of other procedures, and finally have the procedure shown in the video. It is called the Jennetta Procedure after Dr. Peter Jennetta in Pennsylvania who invented it.

My dentist said that 5 years after he invented it, he did not have a day off ever as people in total misery for years with this condition were lining up in his office. What a great contribution to lives this man has made.

Anyone ever have this done who has the typical TN, not caused by facial injury or root canal gone awry, but the real brainstem TN I described above?

Rosemary
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