Trigeminal Neuralgia Surgery | Michelle's Story
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- Опубликовано: 3 окт 2024
- Michelle's debilitating facial pain from trigeminal neuralgia prevented her from working, speaking with friends and family, and simple pleasures like cooking and cycling with her husband. Watch as her life has turned around following microvascular decompression surgery at Johns Hopkins in 2013. Learn more at www.hopkinsmedicine.org/neuro/TN #TrigeminalNeuralgiaSurgery #JohnsHopkins
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I had TN since 2016.The pain was so debilitating that I cannot eat, speak, wash my face, shave, toothbrush etc..I had a surgery ( Microvascular Decompression) only last Feb. 2, 2024...Indeed! God is good..Im pain free now.
is there any risk in the surgery?
Have you got it ?@@iomary2074
@@iomary2074I must get this
This made me cry. I have this and it’s ruined my life.
Do you have TMJ? How are you doing now?
Have you look into getting the micro vascular decompression surgery? My mom had this and the surgery has change her life and is now living pain free
Have you ever heard of Kratom? I have had TN since 2005. I had 2 MVDs both failed. I spent years on prescriptions that were not working. But 2 years ago I discovered kratom. It's a leaf off of the mitragyna speciosa tree. It has saved me. Given me my life back. You can watch the RUclips documentary "A leaf of faith" and I get my kratom from a reputable company called Kreepi Tiki Ethnobotanicals. There's several reputable companies. Look for ones that test for mold, and heavy metals. It's very easy to take. I mix my.powder in with grapefruit juice..swig it down.
But please look into it, because I have gotten so much of my life back from this plant. It's the only thing that has helped me. I really want everyone to know about it. If it doesn't help..well you will be no worse. But if it helps a little.. you know how that would be. And in my case, it allowed me to get off of all my prescriptions for TN. Have a great day ❤️
@@yourfriendlyneighborhoodga562 my husband going to have that surgery this Monday thank you 🙏 & your comments give me strength!
@@Metasebiya4 please update us with your husband news after the surgery
It will bring you to your knees!!!!!!!!! It'll make you cry!! Medications are not working. Scheduled to see neurosurgeon in January!! The pain is very debilitating!!!
I had a flareup that brought me to my knees as I was walking my dog. I could speak I couldn’t do anything but stay as still as possible. I’ve had pain like this my whole life, since I was a child. I just want it to stop.
How did you go butterfly?
How are you?
Hi, how are you doing now?
I’m wondering too because I really need it
My friend has TN. She sent me a video of her symptoms...it was super painful to watch. Thankfully she had surgery at UCSF this past Spring and that has minimized how often the symptoms reappear.
Michelle you seem like such a sweet person, I am so happy you are well again
My mum who has MS is suffering from this and she is suicidal. I'm heartbroken and helpless💔
Try to take her chiropractor or surgery then pay all that back somehow sad to see people go through exercise somehow even if she's weak and too much pain I wonder if the pain comes and goes I cant imagine painful every second for 24hours straight
My TN is caused by a Cavernoma pressing again my T nerve.
Surgery isn’t an option for me without a very high risk of a bleed on the brain.
Medication is rapidly reducing in efficacy.
My next step is stereotactic radiology which carries the risk of numbing my right face.
This disease is horrible and my heart goes out to other sufferers x
@Jack Warner Yes, I wear varifocals but I’ve worn glasses for..ahem..40 years. I’d be really interested to see your findings.
@@TraceyAOKhow it's going and when it started for you
Dr Jaydev Panchawagh is a neurosurgeon based in Pune, India. He has done more than 1300 MVD surgeries for Trigeminal Neuralgia and more than 98 percent of his patients got excellent pain relief. His team is working for this surgery from last 20 years in very focused manner.
My father was suffering from Trigeminal Neuralgia from 2015. He was on highest possible dose of medication and uncontrollable pain when he went for surgery. He is pain free and drug free after the surgery.
Anybody reading this comment in pain please don't give up. There is a cure.
Hi there, i am suffering from atypical trigeminal neuralgia on left side of my face. Medications didn’t help me at all, i am thinking to consider microvascular decompression surgery, just wanted to know the cost of it and also if your father had any side effects from the surgery?
@@jash2199 Hi! Cost of the surgery in INR can be equivalent to $5000-$10,000 USD. He had pain due to surgical incision and mild facial numbness for few days which resolved gradually. He is absolutely free of trigeminal pain.
Glad to hear that your father got well. May The God bless him. How’s your father now? Is this surgery permanent according to your surgeon ?
@@HasanKhan-xz8ec according to the surgeon MVD surgery gives very long lasting relief. 10-15-20 years and even life long. It depends on the complexity of the vein pressing the nerve and how better it can be decompressed. In his case, as per doctor, decompression is sufficient enough to give very long period of pain relief which can be life long as well. He is pain free from the day of surgery. It has been 2 years
@@vasunagpal3098 Glad to hear that. More power to you and your dad. God bless you
I have this. I pray for the day i get operated. These meds are killing me and taking away my dignity
I had this and its the 5th cranial nerve they call it the suicide disease the pain is horrific i lost 80 pounds in one summer i was unable to chew! I took college classes that summer and passed thankfully without studying because i was in severe pain. I wouldn't wish this on anyone!
What about now
My TN began on day 3 of my COVID bout. I am my doctor's third patient who developed this from COVID
Are youaccinated? If you dont mind my asking.
First i want to say that every attack of this is God seeing how your character has developed.
Second, anyone who has this im sure can agree is willing to try anything. Capsaicin, soak a coffee filter in hot sauce(i used texas pete hotter hotsauce) place on gums for a few minutes. Try not to get it on fingers or lips, have milk ready. Dont swallow hotsauce. I ate(i was so hungry/hard to eat before) and slept ALL night. Please try this if you are suffering this much, please.
My aunt had this. She committed suicide due to the pain. I wish I could have done something. I wish I could have said goodbye. At least she’s not in pain anymore 😔
Your comment broke my heart. As a TN sufferer I can absolutely confirm it is a pain where you don’t ‘think’ you are going to die. You actually ‘want’ to die to escape the pain. It is crippling. I am so, so sorry for your loss 😢
I promise I remember asking asking God to please just let me die
@@TraceyAOKi can relate this😢
I had my MVD surgery at Stanford 2/23/2021. We were still in Covid lockdown here in California, so my husband couldn't even be there with me. However, after the recovery, I'm 90% better on the right side. Will have the left side done probably in the next 5 years (I have it on both sides).
It really irritates me when people tell me things like, oh, it's not that bad. So when they complain of a papercut or something, it look at them and say, oh, it's not that bad. Lol
Hi can you please tell me approximately how much you paid for the surgery? I’m thinking about doing it.
Is it effective I mean the surgery are u having attacks any more after surgery or any side effects after surgery?
@@angeladavid8683 I get soreness spots on the right side, but no electrical shocks anymore. I'm really glad I did it. Still haven't done the left side yet.
Wow, you are the first person I've come across that has it on both sides. You and I are of the very few in the world that have it bilaterally. I hope to have surgery as I have had it for 32 years. Maybe there's hope that I can be better.
@@yolandaschartner9345 I also have it bilaterally, but I have the most attacks on the right side
Can’t remember what it’s like to not be in pain
Can this be effective if there isn't compression with this.. I want to get the longest lasting and quickest pain relief possible.. the meds make me feel horrible
Lyrica changed my life
Is she painfree now??
Ive had trigeminal neuralgia since I was 18 or 19. I was started on tegratol and had to stop it due to a potentially life threatening reaction. Then I was on gabapentin and that made me feel like a suicidal zombie. Fortunately my flare ups haven’t been happening much and when they do, they’re not as bad as they used to be. I wanna try different options but idk if I can if I’m improving
Lyrica is a life change fo me
Gabapentin made you feel like that? I tried amatriptayne and that made me feel like a zombie with withdrawl symptoms
If anyone can help me, please. I’m not okay, I don’t know what to do anymore. I’m trying to survive.
I'm in the middle of a months long flare up I had to stop working and the meds are not stopping the pain at all I have appointments coming up and am trying to keep my spirits up. I'm so sorry for your pain 😢
CBD oil is a good help, also alpha lipoic acid, vitamin B-12, Ashwagandha. Good luck!
I want to know if you feel dizzy after the mvd surgery since i have anemia
How rare is this? I’m like scared I could get this
Hi, 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.
my mother had TN and we did treatment MDS.. then she was fine for 3 months then after feels like ...Abnormal sensations such, tingling, cold, skin crawling or impaired sensations-called parasthesia. now i am confused what to do next...????
Hi, 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.
She felt these sensations after mds or earlier too??
Hello there, I donot know if you will see this but my sister have been having TN for almost 10 years now the medication haven't been working. We are from Ethiopia, Africa there is no facility to perform the surgery here. We also don't have the money to afford to get the surgery abroad. Please if you can help in any way possible
Thank you for reaching out to us. We’re very sorry to hear about what your sister isgoing through. 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.
I need help I m suffering from immense pain of trigeminal nueralgia in one day more than 50 attacks each 5 minute I got attack I live in mozambique Africa and here they don't have such medical equipment and facilities to do such operations can anyone help me here 😢
Hi, [7/8/2022 10:01 AM] Sara Feldman
Hi, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. 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.
You can come delhi it's cheap and effective as compared to us or Britain
💜
Are there any misorders after MVD
No. Not at all.
Before my surgery I was treated with different drugs for more than a year. I was depressed, gained a lot of weight and the pain was still there. First it hurt only for about a few seconds, two or three times a day. In the end there was pain 24/7. I couldn't sleep, nor talk or eat. I felt miserable...
Then my doctor sent me to a surgeon who explained to me what he was going to do - microvascular decompression Janetta.
I immediately knew that this is the only way to get rid of my pain.
September 28th, 2018 I had the surgery. Since then no more pain, no headache or what so ever. And no drugs anymore.
I feel free!!!
@@petrakaltenegger1635 happy for you 😊
@@athayphom3551 😊👍
@@petrakaltenegger1635 what is your age
@@SandeepKumar-xl5jw I'm 61
Accupuncture