Trigeminal Neuralgia Surgery: What You Need to Know Webinar

[@deevine1529]

I am a Trigeminal Neuralgia pain warrior 😢 and recovering from CSF leak surgery. I was leaking brain fluid thru my nose due to a tear in my skull. I believe it happened from the dental injury that caused the leak...and Trigeminal Neuropathy. The amount of suffering day to day is unexplainable. Completely depressed state of mind. You are no longer a normal functioning human and I feel wasting away my time here on earth. But I keep going. Survival comes with hard work, and does not come naturally. I am a patient at Duke University and was given opportunity for Rhizotomy treatment but so afraid my nerve damage 💔 once burned away by needle...will come back stronger. Do I leave my injury as is?, or suffer a lifetime going every 1-3 years pain free remission...to only end where I started, or maybe worse. Will I die sooner, will the continued treatment over the years cause my health to spiral to an uncontrollable state where I really am ready to die. 😢 Why aren't Trigeminal Neuralgia sufferers eligible for assisted ending of life. Why are we forced to live on this way like other humans, When we are NEUROLOGICALY disturbed IN OUR FACE. IF someone can help me or interview me, I will tell my story of suffering a spinal fluid leak thru my nose while dealing with numbing throbbing burning 24 hr pain in my left side face. Everyday I wake...I look forward to the day ending...at times rushing thru it with anxiety. To b continued...

[@deevine1529]

...by the way this was very very informative. Wish I had a chance to change Hospitals 😢 Duke is 4 hours so far away.

[@Lisa-tf3hl]

How long after surgery can you go off the meds 48:51

[@rockshanaqabazard178]

I have been fighting Trigeminal for over 6 years I live in VA I really need help

[@JohnsHopkinsMedicine]

HI, Please reach out to inquire about a new appointment by calling 855-695-4872. Please note, many of our offices are reaching out to patients to reschedule appointments as video visits; this will depend on visit type and currently, these are only available for existing patients. Please call the above number to learn more about what options may be available for your specific situation. You can see more on our patient and visitor guidelines at www.hopkinsmedicine.org/coronavirus/index.html#patient-visitor-alerts

[@wesporter2176]

Many neurological problems come from the C1 atlas bone in your neck being out of position and interfering with the brain stem. You should look into upper cervical care it really helped me immensely. They take precise X-rays to determine how to adjust the bone then do gentle corrections to fix the problem.

[@deevine1529]

I am also a Trigeminal Neuralgia Warrior in VA. Nice to meet you

[@kimberlyjones-barker9425]

Good Morning. I would like to set up a consultation if possible. I've had MVD 2/14/19 & Gamma Knife 3/30/22. My facial pain got worst after the Gamma Knife. It was never as bad as it was until I had Gamma Knife. I just need some help because I feel like the doctors don't care. The ER can't help at all... I was diagnosed with Trigeminal Nuerologia by my MRI about 5 years ago.

[@iballslide7604]

It means even Mvd did not cure it for long time and I have checked many studies on internet that displays that vascular contact is normal in many asymptomatic people with trigeminal nerve but don't know why it cause symptoms some and you had gamma knife after mvd that can be the issue ..it is better to go out for gamma knife as invasive surgery is risky as well as no guaranteed

[@yaraviera4444]

I try chiropractor poping the neck..an just over the years just got worse..

[@yaraviera4444]

Hope one day to find a good doctor an find a relief..from trigeminal an occipital which each day its worse..its bad

[@gloriajohnson3282]

How long should I wait to get another rizotimy , when minimal pain returns? Even when an increase in medication.

[@JohnsHopkinsMedicine]

Hi Gloria, we suggest speaking with your doctor about this.

[@tessroque1954]

I’ve been diagnosed with TN and meningioma September 2020. Neurologist stated the menigioma presses on the TN that causes the TN episodes. It’s now becoming very unbearable Does any of the surgical procedures you’ve mentioned possible with my condition ( TN with Menigioma) ?

[@JohnsHopkinsMedicine]

For specific medical advice or to request an appointment at one of our hospitals, please call 888-872-1408.

[@CharlesJones-mz1ll]

I’ve had 4 procedures in and none have worked, I have constant throbbing on my other right side of my face, MVD might be my best option of all the procedures I fall in 20% category, I’m kinda of scared because none of blocks, Rhizotomy’s or gamma knife has worked, I feel helpless

[@kimwardle8886]

Hi Charlie’s I had mvd 2yrs ago and no result that’s why I’ve just had trigeminal ganglion ablitaration v2 & v3 just wondering what the after care is only left hospital with no info

[@iballslide7604]

@@kimwardle8886 i have read many articles or researches in which it is shown that vascualr contact with trigeminal nerve is normal thing and occurs in asymptomatic individuals..just check internet or I can give you link so it means this can not be the cause of trigeminal neuralgia ...try to check you upper cervical posture

[@michaelpondo-nv9yy]

Get. Neuro mag. Magnesium. L threonate. Also take one ounce of. D. M. S. O daily with juice. It works greatly.

[@donaldknapp3723]

if you had gamma and radiosurgery can you still have the surgery done wherevyou go in and put the cushion in

[@laurajohnson762]

Did gamma help? I just got this crap and I'm scared to death

[@kimwardle8886]

I was told no so I had mvd first to no avail so just had needle in check to ablitaration v2 and v3 nerve

[@JDMc2.0]

@@laurajohnson762 Hang in there Laura! I've had TN for over 15 yrs. It's not a thing you get used to but whatever takes your mind off the pain do it. Suicide doesn't count!! I'm not going to get any surgical procedures because half of the patients are still in pain afterwards. I use Indica and it takes my pain and puts it 'on the back burner' if you know what I mean. I wish you well. ✌

[@iballslide7604]

@@kimwardle8886 who told you no, Gamma knife can be done in every case whether vascular contact with trigeminal nerve or not and mvd is not safe and risky too much and even recurrence is there in some years and ther is normal study that there is contact of artery or vein with trigeminal nerve in asymptomatic people too then how can this be the cause of trigeminal neurlagia

[@iballslide7604]

@@JDMc2.0 hi jd I can agree with you as first i have read some researches in which vascualr contact is frequent finding in many asymptomatic individuals and they don't have any facial pain so there are other factors too that contribute into trigeminal neurlagia and can you tell how you get benefit what is indica??

[@BillieBaber]

Yes I am a 69 yo female and have been scheduled to see a neurosurgeon but I am afraid

[@yaraviera4444]

I have both really bad.

[@abdulhaseeb-qj3kc]

For how many years psr procedure leats for....?

[@deevine1529]

Who is eligible for any Clinical Trials ? Please email me. I am up for any help

[@JohnsHopkinsMedicine]

You can learn more about our Clinical Trials here: www.hopkinsmedicine.org/research/resources/offices-policies/office-clinical-trials/

[@deevine1529]

@@JohnsHopkinsMedicine thank you , I just got lightheaded reading the link attachments. I sure wish I could spare the energy. Most TN suffering need care givers and have no energy and minimum cognition to get help understanding things anymore. We just sit in corners and hold our face from pain 🥲 thank you so much for responding ❤️ 😊

[@oliviaroseink]

Please, please help me. I am desperate.

[@JohnsHopkinsMedicine]

Hi, To make an appointment, please call 443-997-1808.

[@laurajohnson762]

Yes

[@kimwardle8886]

Just had trigeminal ganglion ablitaration v2 & v3 what are the after care recommendations plz

[@JohnsHopkinsMedicine]

Hi Kim, thank you for reaching out to us. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.