Gamma knife in TN side effects go to the whole body?

I’m currently experiencing a number of symptoms that could be independently happening to one another or all within the same problem that i could be having. I’ve been told that I could be having eagle’s syndrome (elongated Styloid), nerve damage from gamma knife on trigeminal nerve or could all be apart of a virus that has attacked the nerves in my body.

Time line

2016 -

  • June: Fell from dehydration and broke my nose
  • Nov: Rhinoplasty

2017

  • Oct: Gamma Knife (Trigeminal Nerve). Was wrongfully diagnosed with Trigeminal Neuralgia

2018

  • March: Left side of face nerve crawling/tingling
  • May: Dry/Pain Eyes

2019

  • April: Sinus pain, throat pain, jaw pain, ear fullness & pain, couldn’t hear much, tinnitus
  • June 6: Woke up one day and felt (Dizziness, brain fog, fatigue, tingling hand and feet

Procedure

  • 2016: Rhinoplasty
  • 2017: Gamma Knife (Left trigeminal nerve)

Tests

  1. MRI: Lumbar, cervical and brain with and without contrast
  2. Ct Scan: Neck & sinus without contrast
  3. EEG & EMG
  4. Numerous blood work
  5. Lumbar Puncture
  6. Throat Endoscopy
  7. Vestibular test
  8. Hearing test
  9. Neck therapy
  10. Vertigo Therapy

Difficulties-I Have difficulty Talking, smiling, swallowing, sleeping, walking, standing, blinking, concentrating

Specialists- Rheumatologist, Infectious Disease, Gastro, Neurologist, Neurosurgeon, EnT

Medication- Gabapentin- 1200 mg/day

Symptoms-

Tingling Face

Dry Eye Pain

Ear Pain (Otitis media)

Tinnitus

Hearing was muffled

Pressure ear

Confusion

Tingling Extremities

Fatigue

Tight Swallow

Difficulty talking

Pain when breath

Burning pain in both ears

Hot flashes

Burning left side face

chewing

talking left side

Eye lid twitching

nervousness

fatigue

pain in both ears,

Dizziness (spinning)

off balance feeling

Depression

tingling hands and feet, occasional burn sensation arms

I had crawling on the left side of my face (because of GK) and my eyes whave been in pain since 2018 but last year 2019, i woke up one day and the room was spinning, my throat was hurting, my ears where banging and (heres what throws dr’s off) also woke up that day with what looks like tingling in hands arms and feet.

ANYONE ELSE EXPERIENCE THIS MAYBE FROM GK. If it was specific on the trigeminal nerve on left side, how come 2 years later i wake up one day and my right side also hurts, crawling, burning etc.

When I first began reading I wondered if you had Glossopharyngeal Neuropathy with the throat and ear involvement . That can begin after a viral infection

Has anyone done a Small Fiber Nerve biopsy on you ? They take a TINY sample from your leg .
That might explain the Autonomic Nervous system symptoms .
If the biopsy is positive then the doctor, probably a Neurologist, needs to do a work-up for the causes of Small Fiber Neuropathy .

thats one of the few tets i havent done, so i believe its time to get the small nerve tests, because it all started like after some bad ear sinus infection i had. I just woke up one day and al my extremeties where racing with conjunction to the facial pain problems.

So thats why neurosurgeons dont undersantd why both sides of face are bruning when i got gamma only on one side and why do i have the extremities problem. Im thinking that maybe a virus just activated all the nerves in my body to make everything just worse with gamma knife side effects

It is wrong to lump everyone in the same bundle but it is also true that many Surgeons do not practice Medicine . Their mantra is " Cut to Cure “. Once they do Surgery they are out of the game . My Urologist said yesterday that few of his colleagues, besides himself know what POTS is. So your Neurosurgeon may just not know what to make of your symptoms . A doc who thinks globally might say that while the procedure did not directly cause your symptoms it may be that your body saw it as an insult that initiated a cascade of other symptoms . It might help in discussing your symptoms to say " they followed my procedure " . That implies a link but not causality so that if someone wants to argue with you " that is not a side effect of that procedure” you can say " it may not be a side effect but they did begin soon after it was done " .Plus —why would the NIH have an Undiagnosed Disease Clinic if the cause of every illness was known ?" All you can do is tell your truth . The burning on both sides has a cause That cause is just not clear yet

1 Like

I had gkrs in 2008. I did get side effects of numb tongue and outer ear pain. Eventually I did get ear pain, but it started after having done a dental procedure and getting a shot in the back of my mouth.
I wondered if your doctor has tried giving you amitriptyline for the ear pain. That is what I took for years and it worked. Now, I don’t have the ear pain anymore, just minor throat pain. I don’t need to take the med anymore. I hope that you get to feeling better soon.

Hey médica I agree because my doc got real defensive when I started mentioning how I felt now, wondering if the symptoms are from the gamma knife but he at first said its not posible along with a number of other neurosurgeons.

Hey min I’m curious as to why you had gamma knife and did it make it better? Also when did your start feeling symptoms after radiation?

I had gamma knife because I had severe burning facial pain felt like a nail was going up into my face and the gabapentin no longer worked. Afterwards within a week the burning pain went away, however I still had aching pain. The side effects came on within a week as well and a month afterwards, I also lost the taste on the right side of my tongue along with the numbness. They told me the numbness was common. After 3 years the burning pain came back, although not nearly as bad, the amitriptyline was what got me thru that… I only get twinges from that original pain now.