This is beyond hell

Hello,

Please comment and offer your perspective if your situation is/was similar. Plagued with TN1 for the last 15 years. Nothing really worked for too long. MVD lasted short of 2 years. Gamma knife did not really do much. Glycerol shot gave me 2 plus years of relief. Just had the second one a week ago and discouraged. The electrical shooting pain which came on spontaneously appear gone; however, I simply cannot touch the tip of my nose, side of my mouth, touching the left side of my face generates electrical shocks. Setting up a consultation with the functional neurosurgery team at Mass General this week. If anyone has Han any experience with them please share inputs. This is beyond hell.
Thank you. Sergio

1 Like

Sergio, I don’t have that kind of pain but I’m sorry you do. I hope you can get some responses soon!

Dear Sergio
I have gone through what you have. Thought many times of ending life. Ultimately decided to have the painful 2nd & 3rd branch cut at Trigeminal Ganglion. And I am absolutely pain free for last 55 years. Only drawback of this surgery is the right side of my face is permanently numb including gums teeth and tongue. TEGRETOL was not available in 1963 I had no choice but to go for this surgery.
Tegretol is the most effective drug to control this pain I am sure you must have tried this also. Wish you all the best. You can discuss this with the neurosurgeon about this option only if all other options have been tried.
Best of luck
Yakub

2 Likes

Hello Yakub,

Thank you for replying. Tegretol stopped working a while back as the nerve gets used to the medication. Currently on Trileptal and it is barely working. Thank you for sharing what you went through. So far, nothing as given me permanent relief. The electrical shocks alway return.
Next Wednesday I have a follow up with my neurosurgeon. Will discuss and hope to have a go forward plan. Right now, I have no quality of life at all. Unable to brush my teeth, shave, wash my face. This bastard beats you up physically and emotionally. I think you already know.
Thank you for your inputs.

Sergio

Hi Sergio
I am sure you will come out of this. My surgery was done in 1965 at the prime time of my life, on th left side of face which as I said permanently cured of pain but with a heavy price of half face being permanently numb. I chose the lesser of the 2 evils.

In 1974 I was unfortunate to have same illness on the Right side of my face. Fortunately Tegretol in combination with Gabapentin is controlling the pain. I am also having intermittent spontaneous remissions lasting for months even upto 2 to 3 years sometimes. When the pain returns Tegretol works for me.
I wish you too should get remission soon. This illness is known for going away on its own but the devil sure comes back.

Please make sure you get a GOOD experienced Neurophysician for meds as new medicines are coming up in research. If you at all decide for surgery a good experienced neurosurgeon is a must for this skill full surgery.

My prayers & good wishes with you. Some medicine may come up soon to cure this pain.
So don’t lose hope.
Best Wishes
Yakub

2 Likes

Hi Yakub,

I appreciate your inputs greatly. A big virtual hug to you. I have been suffering since Christmas Day. No remission in sight. Will certainly not rush into any surgery, although that option can no longer be excluded.
My neurosurgeon is very talented. He is rated as one of the best in the area. Will soon engage with a highly rated neurosurgeon from Mass General for another opinion. I have Tn on the left side.

Are you able to masticate your food on the left side?
Do you recall how you felt immediately post surgery?

Are whether changes an issue?
Can you have regular dental care?

Look forward to your inputs.
Thank you,
Sergio

Thank you for caring to reply.

Hello Sergio

In my case the surgeon was very skilled. He had already performed 150 operations. I was just 18 at the

time & fed up of pain, He made sure not to damage the motor nerves which run extremely close parallel to sensory nerves (Trigeminal) so he just cut the 2nd & 3rd division preserving the 1st one which provides sensation to eye, forehead & head.
He kept the motor nerves in tact & undamaged, thus preserving my mastication power of upper & lower jaw. When I came to senses post surgery the first thing he checked was my motor nerves whether I am able to move my cheek laugh & chew my food well on the operated side. It was perfect. It still is same even today I am able to eat & chew my food perfectly. There is no facial palsy either till today

After surgery I could not believe the pain had gone, as after almost 2 years I had a good large pain-free meal.
But after few days the numbness started to bite & feel hard. I kept on crying & wept for days & weeks when alone.

But our brain has ability to get used-to almost anything over a period of time. And soon got used to the numbness & forgot that I had one.

I make sure that I go to dentist every year for check up I am 76 & still have all original teeth with exception of 4 which I lost due to my negligence.

Sergio, remember one thing I had this surgery in 1965. Dr Peter Jannetta of Mss Gen Hosp had just invented a surgery called Microvascular Decomposition (MVD) the only surgery that could get rid of the pain & yet preserve the sensation on face.
it was fairly new & expensive. I had never heard of it at that time. If I was aware & had the means to get that MVD surgery done I would have certainly taken that chance before undergoing Rhizotomy.

In skilled hands 80% success is possible in eliminating pain. In some the pain has returned after varying period of relief. But it is safe & only way of preserving your nerves yet eliminating pain. I would keep Rhizotomy as last option.
Sorry for long letter. But I wished to inform you about my experience with this monster pain which I have suffered on both side of the face.
God bless & take care
Yakub

1 Like

We are all in it together.

I have had TN for 20 years I did have six different injections at the beginning on was the glysol and nothing was helping I had gamma knife to the back of the head it didn’t work so they went ahead and decided to do MVD Had relief for almost 2 months and my pain came back I also had the gamma knife to my right cheek area they didn’t think it work and it didn’t but it was worth a try I’ve been on several different medication which I’m very allergic to and found that OxyContin and oxycodone was the only thing that would help me with the pain I am in constant pain and you get used to it but I’m getting so used to my medication I now need to start trying different meds and nothing seems to work I’ve even had electric stents put into my face to try to stop the pain I have breakthrough pain 3 to 4 times a day and it makes it very hard to go see my grandkids play baseball and football if the winds blowing or if it’s cold I would have to leave I did lose my hearing with the MVD I have thought of cutting the nerves but I think I will wait till I’m a little older I am only 66 and I know I’ve been told there’s a chance that your face and everything will drupp it will look like you had a stroke so I will wait to have that done because I’ve been told it’s a 50-50 chance that it will work and since I only had a 1% chance of losing my hearing it leaves me a little leery I hope you will find something that will work for you the only way to keep my spirits up is knowing that there are people worse than I am so I shouldn’t complain with what I’ve got I hope the best for you

Hello Yakub,

Thank you so much for the details you shared. They are very helpful and helps me to put things in the propri perspective. I cannot even imagine having to deal with this monster at the age of 18. In my case, it happened at the age of 50. I remain convinced the car accident is root cause. I was stopped at a red light and rear ended at full speed as the idiot was playing with his phone. Have not been the same since.
My neurosurgeon was the first to be trained on the MVD by Dr. Jannetta. I was pain free for 2 years. The Gamma Knife did not do much. Had better relief with the injection. I have been asking for the procedure you went through and he keeps saying you are not there yet.
Now I understand. One step at a time. My issue is the electrical shocks, which drive me to insanity. I had the second glycerol last Friday. So far, so good. Emotionally, I am damaged. I must exit this phase.

I stopped working this December. Just could not do it anymore. I am 65 and wonder in fear about what is to come. Again, your inputs are very helpful and have opened my eyes to a few things. Thank you!,

Sergio

Hello,

Thank you for sharing your story. Your inputs are very helpful.
I wish you well.
Sergio

You are most welcome, any time.
I am a member of Trigeminal Neuralgia Association (UK) & am in touch with them. If anything new by way of medicine comes up I will definitely inform you so that you can discuss with your neuro for his opinion.
Thank you take care.

Yakub

1 Like

Hello Yakub,

Please do. Thank you. Stay safe.
Sergio

I have had atypical neuralgia on the right side for over 38 yrs. I have pain everyday. The MDV surgery added pain to the V1 verve, so I am very Leary of surgery. I take 1.5 pain pills to sleep and for the last couple of years I take medical marijuana to sleep. The indica strain helps with sleep.