| | Joined: May 2020 Posts: 5 Member | OP  Member
Joined: May 2020 Posts: 5 | I had a partial glossectomy mid april for cancer. I expected surgical pain, but not the ungodly nerve pain. I am taking gabapentin which has helped tremendously, but it still gets almost unbearable at times. Hot/cold affect it, i have tried everything I can think of, does anyone have any good ideas? Narcotic medications are completely ineffective. I feel like a big baby, but sometimes its just awful. | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Welcome to OCF! Im sorry to read about your post surgical struggles. Mouth pain is the worst!!! The medication that helps the nerve pain you described, is exactly what you are already taking... liquid Neurontin AKA Gabapentin. Being in extreme pain does NOT help patients, it is actually detrimental to promoting healing. I suggest going back to your doc and discussing in detail how severe your pain is. Hopefully they will have some different options or maybe refer you to a pain management specialist doctor. Hopefully as you continue to recover from the surgery, your pain will lessen as the inflammation subsides.
Best wishes with everything!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Feb 2020 Posts: 48 Likes: 4 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2020 Posts: 48 Likes: 4 | I continue to suffer from nerve pain, but not in my mouth. The nerve pain I have is from my neck dissection and it's in my neck and ear. I was on gabapentin for a month, and it reduced the pain but did not completely eliminate it. I use RSO, which helps me to cope with the pain (and doesn't cause constipation like opiates).
The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
| | | | | Joined: Aug 2020 Posts: 8 Member | | Member
Joined: Aug 2020 Posts: 8 | Did your tongue pain get better? I am going through the same thing at the moment? | | | | | Joined: Aug 2020 Posts: 8 Member | | Member
Joined: Aug 2020 Posts: 8 | Did your pain get better? I am going through the same thing right now | | |
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