| | Joined: Jul 2016 Posts: 2 Member | OP  Member
Joined: Jul 2016 Posts: 2 | No support or information after tongue cancer surgery
still have lots of nerve pain and I am due for a biopsy
of Parotid gland tumor to come. | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Welcome to OCF! You are definitely in the right place for info and support!
Spend some time reading both here thru the thousands of posts and on the main OCF site where there are pages of info. To get to the main OCF site, click on the small underlined OCF Main words in the upper left corner of the page. An educated patient is a strong advocate for themselves.
Im sending you a PM (private message). Click on the tiny flashing envelope next to the My Stuff tab. Its located near the top center of the menu bar on any page. Or click on the small downward facing arrow and then on the drop down menu, click on the word messages.
Call and go see your doctor about the pain. Nerve pain in the mouth can be unbearable. Ask your doctor about getting some prescription medicine to help control your pain. Being in pain is not at all helpful to any patient, it only causes more unneeded stress which can affect their recovery.
Stick with us and we will help you with everything. Stop back often to read, post and if necessary to vent. We've been in your shoes and know how frustrating and scary it can be.
Best wishes with your recovery from surgery and the upcoming biopsy.
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: Mar 2016 Posts: 8 Member | | Member
Joined: Mar 2016 Posts: 8 | Having similar problem with tongue pain. Am told it's "phantom pain" with nerves of the tongue trying to regenerate. Goes from mild to unbearable in seconds and can last for hours. Hard to concentrate and work. Am open to suggestions for relief. Already taking pain meds which are not helping.  | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Ive had relief with prescription Neurontin (gabapentin), its pain meds that works on nerve pain. Unbearable is an understatement when that kind of pain hits.
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: Mar 2016 Posts: 8 Member | | Member
Joined: Mar 2016 Posts: 8 | Have been using Gabapentin since April when I started radiation. Most of the time the pain is tolerable and only lasts a short time; today, for some reason, have had pain most of the day. See oncologist on Monday and hoping he has a solution. As you said, unbearable is an understatement - my tongue feels like it's on fire. Not fun. | | |
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