I am 3 weeks post op from a craniotomy where they removed a 3.5 inch neuroma and my supraorbital nerve. The recovery is slow and painful. Has anyone else survived this? How long did it take to get your energy level and stamina back? How long did it take to not have to take pain meds like they're candy? I have been suffering with TN pain for over 3 years and am feeling very impatient. Any feedback negative or positive would be appreciated. Thank you.
Hello Carrie B
This surgery is new to me .Is there a website with some more detail ?
Regards . Graham
I Googled the procedure before I had it. In a nut shell I have an 11.5 inch incision that starts in front of my right ear and goes up and around my head. Then they basically peeled down my face and removed my neuroma or in my case scar tissue blob from 10 frontal sinus surgeries. Then they cut the supraorbital nerve which is a branch of the ophthalmic branch of the Trigeminal nerve and removed it.
There is also a YouTube video of an Indian gentleman getting a neurectomy. If you are faint at heart I donot recommend it.
Hope thishelps,
Carrie
Graham said:
Hello Carrie B
This surgery is new to me .Is there a website with some more detail ?
Regards . Graham
I had neurectomy of the right sided Trigeminal nerve. No pain as that portion is completely numb forever.
this sounds scray to me as MY TN is on the left side and that'where my good eye is.my right eye can't see ,uch due to MS. if this ibvolves cutting the branch tied to the ophtalmicv nerve doesn't that affect vision? is there a risk?
The opthalmic branch of the Trigeminal nerve splits into 3 more nerves. The supraorbital, trochlear , and the ophthalmic. The trochlear and supraorbital control blinking versus vision. I am having some issues with vision because the surgery irritated the opthalmic nerve, but it is supposed to go away as the swelling goes down.
Hope this helps,
Carrie
TNWITHMS said:
this sounds scray to me as MY TN is on the left side and that'where my good eye is.my right eye can't see ,uch due to MS. if this ibvolves cutting the branch tied to the ophtalmicv nerve doesn't that affect vision? is there a risk?
If you don't mind me asking, do you remember how long it took to recover from surgery? I'm 3 1/2 weeks post op and still experiencing a considerable amount of pain.
Thank you,
Carrie
Yakub said:
I had neurectomy of the right sided Trigeminal nerve. No pain as that portion is completely numb forever.
Carrie
How and why did they decide to perform such an extensive procedure? What did they find on your MRI or was it just a clinical diagnosis? When you had episodes did you suffer pain in a 3 branches of the Trigeminal nerve? The reason I ask, I see the surgeon on 15 January. The majority of my episode pain seems to be in the mid and upper branches. however one year ago they did not find an occlusion on my MRI.
Wishing you happy new year and quicker recovery
Hi Baba,
I have an extensive history of surgeries on my right frontal sinus including obliteration 3 times. They accessed my frontal sinus 7 times by cutting on the inner curve of my eyebrow/eye area so it was scarred greatly. During one of my obliterations they used the same craniotomy approach so since I already had the scar they decided to use that approach again and extend it slightly. I have not had an MRI in years but when I had one my trigeminal nerve was clear. A CT scan was performed before my surgery but I never really got the results. They were just looking for cracks in my skull from previous surgeries.
When I did have pain it would shoot straight up from the middle of my forehead accompanied by constant pressure pain above my right eyebrow. In answer to your question my pain only involved 1 branch of my trigeminal nerve. Before I had surgery I tried 4 different medications (which I could not handle the side effects,) a suprapalatine ganglion block, and 2 supraorbital nerve blocks. None of the medications or procedures provided any relief.
I hope you find an end to your pain soon and have an excellent surgical team.
Happy New Year,
Carrie
Baba said:
Carrie
How and why did they decide to perform such an extensive procedure? What did they find on your MRI or was it just a clinical diagnosis? When you had episodes did you suffer pain in a 3 branches of the Trigeminal nerve? The reason I ask, I see the surgeon on 15 January. The majority of my episode pain seems to be in the mid and upper branches. however one year ago they did not find an occlusion on my MRI.
Wishing you happy new year and quicker recovery
Hello Everyone .
Firstly , I wish you all a very Happy New Year ... a year of lessening pain , I hope . Can anyone help me out , please ? Earlier on today , I was reading up the latest postings on this site , and was intrigued to see a reference to saline nasal wash in somebody's letter . I should have taken note of the entry , for I wanted to pick up on that correspondent and possibly share experiences . However , the storm-clouds of pain had been gathering whilst I sat in front of the pc , and then they broke , and my mind was battered hither and thither , and so I lost the connection . Please , if there is anyone out there who can point me in the right direction to find the letter , do let me know ... my head and my vision are in no state to go a'hunting .
Regards . Graham .