#29146 07-05-2007 04:48 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | They are telling me the lump in my jaw is a Neuroma... Basically a tumor of the nerves. However it is pressing so that most of my tongue is now numb,,not just the left side and all the way to my chin and my ear now as well as also it has some pain..weird becasue it is numb i know.
My feeling was starting to come back , now going again and more of it . They are trying to treat with a medication and if that dosent work then surgey ...but who wants to have surgery on the nerves that can cause facial paralysis ..hmmm I am begining to think this one is a no win situation ! |
Anyone have any experience with this? :rolleyes:
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#29147 07-05-2007 05:16 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Sharlee, You're like me--one tumor after another! I know someone who had a neuroma in the nerves connected to his ear and they did some kind of noninvasive surgery that got rid of it. If they do tell you you need surgery, I'd definitely try to get a second opinion somewhere. It sounds like this is not as aggressive or deadly a type of tumor as oral cancer though? Anyway, you've been spared the radiation bullet for now, right?
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#29148 07-05-2007 05:51 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | As far as I know YES !! NO RAD ! however I have also just found out I need a hysterctommy for possible uterine cancer or adnomyosis and I wont do any further test because treatment for both is the hysterectomy ..so in my opinion TEST AFTER YOU TAKE !! LOL enough is enough , you have to take it so no more poking around !!!! But as far as the Neuroma it SUX .... the whole facail paralysis thing !
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#29149 07-06-2007 02:41 AM | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | Sharlee - I was glad to finally see your post - had been wondering how you were doing. It also got my curiosity up regarding neuromas after neck dissection, since I've had one too, so I did some quick research and found a couple of articles that you might find helpful in explaining this. The good news is that this has NOTHING to do with cancer, it is only an attempt for injured nerves to repair themselves. Here are the links: http://www.ajnr.org/cgi/content/full/21/9/1676 http://radiology.rsnajnls.org/cgi/c...mp;HITS=20&hits=20&RESULTFORMAT= &searchid=1&FIRSTINDEX=0&displaysectionid =Head+and+Neck+Imaging&resourcetype=HWCIT
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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#29150 07-06-2007 03:07 AM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Thanks Ginny
I hadnt posted in a while as things are crazy here ..believe it or not I am not making it up ..My dog ate the power cord to my computer so I couldnt use it for like 2 or more weeks !!!! Luckily my house didnt burn down !!
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#29151 07-06-2007 12:14 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2007 Posts: 525 | Hey Sharlee
Check your margins on your computor.
Did you recently change them? I'm no computor geek. I checked a lot of your posts and they are fine.
It is only this last topic.
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#29152 07-06-2007 02:42 PM | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | The long link will not be broken by the system so that link is throwing the whole page off to compensate. If I take the one link out the page will all go back to normal.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#29153 07-07-2007 05:04 AM | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | Sorry, that was my fault for posting it, I didn't realize it would do that.... :rolleyes:
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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#29154 07-09-2007 02:29 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Sharlee,
I had a neuroma in my neck after my first neck dissection. It was described to me as a 'damaged nerve that did not go back into its sheath'. This caused major numbness in my neck which could refer to the ear if anything slightly pressed on it. If my PT hit, you could scrape me off the ceiling. Over the years, it has gradually healed and no longer presents a problem. However, mine did not cause any problems with eating or speaking. You may want to pursue this further.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#29155 07-09-2007 02:49 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Sharlee,
I had a neuroma in my gum a couple of years ago. My oral surgeon removed it (a minor procedure in his office), and it had no lingering effects.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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