Reoccurence or crazy?

[barbjo]

Hi...I am new to this board, however not new to the problem.  In the early spring of 2002, I noticed my face was numb, the children in my classroom were talking rather softly(whick was unusual for them!), and believe it or not my tongue just hurt!  I went to my GP and was told a bunch of nonsense, then got a referrral to an ENT.  He ran the famous MRI.  When I went back to his office he called me back to the x-ray screen and apologically told me about my tumor, it approx. 2 cm in size.  With this was referral to Wake Forest and a wonderful gifted surgeon.  That sugery was March 2002.   After routine check ups everything seemed to be going great....well until the last one in April this year.  After the "tunnel" test, the surgeon said the was a growth, but was hoping it was scare tissue.  So, hanging on to that I went back to a normal life.  However, approx. 2 months ago my hearing is gotten worse, my gait is more off then my normal, and especially over the past week alot of pressure and pain in the ear "area" that I had surgery on.  The pain gets so bad when I lay down in bed at night I don't sleep.  I end up getting up till I am ready to drop in hopes of getting some rest.  Pressure and pain can bring me to tears.  I think I have taken all the OTC drugs I can find..no help.  Has anyone had these symptoms or had a reoccurence?  Obvisously, I am getting worried, moved my Oct. appt and MRI up to Sept. 8. 

[ppearl214]

Hi Barbjo... I believe there can be a reoccurance but new to this myself... thrilled to hear you moved your appt up and will monitor this post to see how you are doing and to see what the update is from your dr... hang tough!

[Kathyaquino]

Yes, there can definitely be a reoccurance.  When my hearing started to get really bad I went to my ENT & the local neurologist who told me my tumor (which had been removed once although some of it had been left in) must be growing.  When I had my next MRI it showed a growth of 30%.  Unfortunately, even if the doctor gets all the tumor the first time the tumor can return so it's very important to see your doctor when you start having symptons again.

[jenifyer]

hi,

You are not crazy.  I recently had surgery to remove my recurrent AN.  I started having pain on the same side my AN had been on and nothing would help. No OTC pain meds, nothing.  i would wake up in the middle of the night and the pain would be there.  then i started feeling dizzy and getting very nervous.  finally i told my husband i think i needed to see the doctor.  An MRI confirmed that i had a recurrent tumor.....almost twice the size as the first!  That was last January.  My surgery was May 5th and i am happy with the way everything has turned out.  The tumor was completely removed this time. last time they left a tiny piece.  The positive thing about this was that i found out about the BAHA to help my hearing and tomorrow i'm going for my implant.  Good luck with everything.
jennifer 

[Kathleen_Mc]

Barbjo: yes reoccurance can occur. I had my a.n. removed in 1990 and was told they had removed it all, in 1997 I was told the m.r.i. (done for other health problems) showed "scar tissue" at the site but was advised to have it redone in a year, in 1999 I found out the tumor was "back" and had grown between the two m.r.i.'s. Since that time I have been monitored with yearly m.r.i.'s and there has been growth some years and none other years, currently the tumor measure's 5mm x 8mm and I have requested to have it removed now. Chances are during the initial surgery they missed a cell or two, so the surgeon believes as reoccurance of a fully removed tumor in the exact location is really rare.
I have been told I have no symptoms of the tumor at this time as it is still confined to the auditory canel and all involved nerves were obliterated during the first surgery, I find this hard to believe though, I have recently been experiencing increased headaches, weird facial sensations on the other side of my face, increased fatigue...all in the past 6-9 months and have been monitored over 6 years for this regrowth. I truely believed when it comes in neurological illnesses it is possible that not everyone meets the textbook. Kathleen

[puffycheeks]

Hello, I had my tumor removed on 11/8/2005.  They had to cut the hearing and balance nerve to get all of the tumor out.  I have recently, last month, been experiencing headaches, dizziness and fullness in my ears.  I hope it is not a re-occurence, but then again, it would explain my symptoms.  Sometimes it best to know exactly what the problem is.  Anyways, I have an MRI scheduled tomorrow.

[matti]

Kathleen,

Last October, I started experiencing weird facial sensations such as tingling, spasms and some pain on my non-AN side, as well as extreme fatigue. I have had yearly MRI's since surgery in 1998 when the whole tumor was removed. My doctors thought this might be caused by a sinus problem or tooth. I had an MRI last month and good news is no tumor re-growth on AN side and clear on the other. The MRI did show a large sinus polyp on the non AN side, but the neurologist does not think that is causing the problem. I have been doing some research with the help of my gyno because she said that low estrogen levels can cause nerve inflammation and has seen these facial issues in some of her pre and post menopausal women. My test results showed very low estrogen levels. I have been keeping a daily journal on my symptoms and do see a correlation with my cycle. They want to put me on HRT but I am trying to find a natural remedy, as I do not tolerate medication very well.

Cheryl

[puffycheeks]

Just received the results of my MRI and unfortunately, my tumor is back.  It is larger than before.  I have an appt. with my dr. at the House Ear Clinic on the 14th.

[Obita]

aw jeez puffycheeks, I am so sorry.  I do hope it is such a spot that you won't have to have invasive surgery again and you can zap it instead. 

There does seem to be an unusual number of re-growths on here this last month.  I feel very bad for all of you.

My three year MRI is in two months......I dread waiting for the results.

Kathy

[Jwh]

I'm sooo sorry to hear this news.  I was just diagnosed with a regrowth last week.  It's unbelievable to me that I have to think about this again.  I had my surgery in 2001 retrosigmaud for a 1.2 cm AN.  I'm now showing a 10 mm regrowth.  I go this Thursday to NYU to discuss the Translab approach.  What are you considering?  I'm nervous about the facial nerve this time around. 

I'm sorry that we are both facing this again.  Please email me any time since we probably are going through the same emotions.