I have not posted since the summer, it has been a very busy few months. Today I found out I have what they think is a neroma but may be a recurrance, has anyone ever had a neroma, which is a unusual reattachment of the nerves in the neck and they form a bump which I suppose is like scar tissue of the nerve.I will have it removed in a few weeks and then I will know for sure! This is not what I expected but then that's the way it goes sometimes. I will deal with this one day at a time!

Yep, I had a neuroma. I had hernia surgery back in 2001 on the right side, and 2 years later had one on the left, but also had a lot of pain on the right. It was a neuroma, a benign growth on the nerve that can occur after surgery or radiation therapy. They simply clipped off the neuroma, and I was good to go!

Wishing you best of luck with the removal, and hope it proves to be a neuroma.

Hey there! PM Sharlee...I believe she has had neuroma...Good luck!

Lois & Buzz in NC

FROM SHAR ON JULY 5, 2007: 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?

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Sharlee
Scc T1N0M0,partial glossectomy and left neck disection(32 nodes all clear)2/9/07 No rad deemed ness. 4/16/07 tonsilectomy. 7/07 neuroma from surgery ... I didn't chose to do this But I am going to chose to do somthing about it

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Posts: 456 | From: Mayfield NY | Registered: Jan 2007 | IP: Logged

Nelie
Patient Advocate (300+ posts)
Member # 1887

posted July 05, 2007 08:16 PM
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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

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SCC (T2N0M0) diag 1/19/05, partial glossectomy & selective neck dissection, 2/9/05. additional surgery 2/25/05 to get clean margins. 33 sessions IMRT (66 Gy) 2 Cisplatin chemo ended 06/03/05. Also treated for stage I breast cancer 2/05-11/05

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Posts: 1440 | From: Ithaca NY | Registered: Feb 2005 | IP: Logged

sharlee
Patient Advocate (300+ posts)
Member # 3872

posted July 05, 2007 08:51 PM
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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 !

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Sharlee
Scc T1N0M0,partial glossectomy and left neck disection(32 nodes all clear)2/9/07 No rad deemed ness. 4/16/07 tonsilectomy. 7/07 neuroma from surgery ... I didn't chose to do this But I am going to chose to do somthing about it

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Posts: 456 | From: Mayfield NY | Registered: Jan 2007 | IP: Logged

Me2
Senior Member (75+ posts)
Member # 3300

posted July 06, 2007 05:41 AM
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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

[ July 06, 2007, 05:45 PM: Message edited by: Brian Hill ]

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Ginny M. - SCC of Left lateral tongue, dx 04/06, Surgery at MDACC 05/12/06: Partial glossectomy with selective node dissection. T1N0M0 - no radiation deemed necessary. Started phase III clinical trial for prevention of recurrence 04/07.

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Posts: 85 | From: Georgia | Registered: Aug 2006 | IP: Logged

sharlee
Patient Advocate (300+ posts)
Member # 3872

posted July 06, 2007 06:07 AM
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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

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Sharlee
Scc T1N0M0,partial glossectomy and left neck disection(32 nodes all clear)2/9/07 No rad deemed ness. 4/16/07 tonsilectomy. 7/07 neuroma from surgery ... I didn't chose to do this But I am going to chose to do somthing about it

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Posts: 456 | From: Mayfield NY | Registered: Jan 2007 | IP: Logged

PeteyB
Patient Advocate (300+ posts)
Member # 4080

posted July 06, 2007 03:14 PM
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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.

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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!

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Posts: 525 | From: LAKE WORTH, FLORIDA | Registered: Mar 2007 | IP: Logged

Brian Hill
OCF Founder
Member # 4

posted July 06, 2007 05:42 PM
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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.

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Brian, stage 3/4 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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Posts: 2336 | From: Laguna Niguel, CA | Registered: Mar 2002 | IP: Logged

Me2
Senior Member (75+ posts)
Member # 3300

posted July 07, 2007 08:04 AM
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Sorry, that was my fault for posting it, I didn't realize it would do that....

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Ginny M. - SCC of Left lateral tongue, dx 04/06, Surgery at MDACC 05/12/06: Partial glossectomy with selective node dissection. T1N0M0 - no radiation deemed necessary. Started phase III clinical trial for prevention of recurrence 04/07.

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Posts: 85 | From: Georgia | Registered: Aug 2006 | IP: Logged

Eileen
Patient Advocate (300+ posts)
Member # 153

posted July 09, 2007 05:29 PM
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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

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1997 unknown primary, Stage III
metatsis to one lymph node in neck; right neck disection, 36 rad treatments
2001 tiny tumor on larynx, Stage I
total laryngectomy; left neck disection

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Posts: 1011 | From: Trenton, New Jersey | Registered: May 2002 | IP: Logged

Cathy G
Patient Advocate (300+ posts)
Member # 1263

posted July 09, 2007 05:49 PM
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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

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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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Posts: 835 | From: Newton, MA | Registered: Apr 2004 | IP: Logged

JeffL
Platinum Member (100+ posts)
Member # 1119

posted July 13, 2007 04:05 AM
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Also had neuroma in my lower abdominal area after hernia surgery. They had to go back in and get rid of it, which they combined with hernia repair to other side. The surgery was nothing compared to when the surgeon palpated that neuroma --- worst pain I ever had, including everything I just went through with the cancer.

Neuroma is a big nothing -- smile!

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Jeff
Dx SCC Right Tongue Base 3/28/2007
T2N2aM0G1, Stage IVA
Bilateral Neck Dissection 4/12/07
IMRT x 39 ,Cisplatin x 8. Treatment completed 7/11/2007.

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Posts: 116 | From: Ohio, USA | Registered: Feb 2004 | IP: Logged

Adelle

YUp I have a neuroma and trimangenial neuralgia..but due to location they are trying to treat with medication instead of surgery ! But when they were 1st trying to diag they had me thinkin I had a tumor in the jaw.

Right now I am on Topmax & Trileptal. They use things like neurotin , amitryptlyn, and even methadone as well as other things. Methadone is one of the last resort meds. I hear Neurotin stinks..I tried amitryptlyn ..that didnt work for me . these meds I dunno if they work yet I am not at my Max doses yet .

But If the remove the Nerve bundle or even the trimengenial nerve ..it could cause facial paralysis and I am not ready for that . So I am trying this route 1st. There are days it is quite painful.

If you have any specific questions please feel free to ask and I will try to answer

Shar

Wow, thanks Sharlee, I really feel like a fool I don't think I aksed any of the right questions and they never mentioned any possible paralysis. They also did not give me an option just said it should be removed "just in case". The neuroma is in my left neck right below my original incision, which starts under my centre jaw and reaches back to my ear. They also said that when they go in they will open the orignal scar and also remove any nodes around the neuroma. Both a needle biopsy and and MRI were done to determine what it was and both were inconclusive. I do have more stiffness in my neck than previously and it seems a little more numb than usual (if that is possible)
I hope if you go this route all works out well for you. Not sure if we have any other viable options but surgery. Unless ofcourse the drugs disolve the neuroma or are they just for the pain?
Thanks for your input, much appreciated.
Best Regards,
Adele