Author Topic: Regrowth? Symptoms?  (Read 3358 times)

MLB57

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Regrowth? Symptoms?
« on: March 22, 2016, 06:54:59 am »
Hello everyone..

Just wondering --for those of you who had a regrowth of your AN--did you have any symptoms?  I had microsurgery in 2001 for 1 CM right AN--later follow-up MRI showed re-growth --I had no symptoms at all.. I subsequently underwent 6 wks of radiation in 2007.

Last MRI was April of last year (2015) and all looked well. Just last Thursday morning (St Patty's Day) I awoke and rolled over and the room spun vigorously around.  I have been out of work since Thursday and had been taking 12.5 mg 3 times a day of Meclizine prescribed by my PCP and that was upped to 25 mg 3 times a day starting last night. I do have a tight neck muscle from the AN surgery which seems much tighter lately.

I am hoping it may just be a coincidence that I have vertigo and no relation to the AN.  (Only time I ever had vertigo like this was in 1999 and 2 years later the An was discovered)..

I have  not actually seen my PCP, only his assistant has spoken to me.  The vertigo seems a bit less severe this morning..but is still there..

So just wondering if anyone out there has had re-growth with any symptoms?

Thanks for any information you can shed on this..

Sincerely,

Mary/AKA Grammy



1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

CHD63

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Re: Regrowth? Symptoms?
« Reply #1 on: March 22, 2016, 07:47:01 am »
Hi Mary .....

So sorry about your new struggle with vertigo!  Not fun!

I actually never had true vertigo ..... just that awful feeling of disorientation, not knowing up from down.  Also, I did not have any symptoms with my regrowth.  Only on an audiogram before the second surgery did I find out I was losing speech discrimination (I had retained 20% of my hearing after the first surgery.).

Hoping and praying this round of vertigo for you is unrelated to the AN and is an inner ear problem with your "good" ear.

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ANGuy

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Re: Regrowth? Symptoms?
« Reply #2 on: March 22, 2016, 01:44:50 pm »
The vestibular nerve should have been cut during your surgery.  That would mean that there is no way growth of that tumor could effect your balance.  Balance issues come from changes in the signal quality on the affected side.  Since you don't have any signal on that side anymore, it can't change.

Any balance issues you are having now would have to be from some other issue. 

Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

MLB57

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Re: Regrowth? Symptoms?
« Reply #3 on: March 22, 2016, 02:23:03 pm »
Dear Clarice and AN guy,

Thanks so much for your responses.. I just got a call from my PCP office -- he wants to see me tomorrow..so I am glad of that--hope to get to the bottom of this..

AN guy, --I re-reread the OR reports and couldn't find that there, but I always thought that I was told that my balance  nerve was cut during surgery-- (I have always told everyone that I have only half a brain for balance, etc.) so thank you for confirming that --that is a relief.  I am beginning to think this may be due to my tight neck muscle..Maybe a spasm.. I can feel fullness and have more tinnitus.. In December thru February I had my first bout of sciatica and have been seeing a chiropractor plus doing exercises at home and wonder if i did something to that neck muscle.

Again, thanks to both of you..  I appreciate your quick replies.. :D

1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

MLB57

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Re: Regrowth? Symptoms?
« Reply #4 on: April 20, 2017, 11:07:31 am »
More drama now..Ugh!  Last 3 weeks my neck muscle on rt side (opened and I guess cut during my 2001 Retro surgery) these muscles are really tight and I have much more pressure down the right side of my face and increased noise..  But what  draws me to write here today is that I have noticed these last 3 weeks a balance issue--I walk every day. several times a day and I am losing balance.. Usta happen occasionally when neck muscles tightened but is really apparent to me now as I try to walk a straight line.  And these neck muscles pull my head and that is what I believe causes me to lose balance.  But also I have started to experience light-headedness.. Went to ER last week..all work-up okay.. Discharge papers call lightheadedness "Dizziness"  interesting.. So I get these almost daily spells of lightheadedness,, goes away but balance still not right..

I e-mailed Dr Loeffler who responded back that he was not too concerned but has his staff order an MRI for next week the said "just to be extra safe".. (My next MRI would have  been April of 2018)..

So I am relieved yet anxious..I had FSR 6 yrs after surgery due to tumor re-growing.. so if I need more treatment..well..I don't want to think about it..   Thankful I can have the MRI as it will tell the story..


Will update as I know..

Mary/AKSAGrammy :o


1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

Cityview

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Re: Regrowth? Symptoms?
« Reply #5 on: April 20, 2017, 04:22:51 pm »
I would get the MRI but for the tight muscles perhaps a massage therapist or Reiki might help.
Sometimes alternative therapies work even better than conventional ones. I noticed on my last trip to A large Hospital in Boston that they have a Reiki place in the lobby. They are combining integrative therapies along with other treatments and these are gaining acceptance.
Just an idea for the neck tightness.
« Last Edit: August 07, 2017, 03:02:12 pm by Cityview »

Patti

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Re: Regrowth? Symptoms?
« Reply #6 on: April 21, 2017, 06:25:51 am »
I have been going to a Cranial-Sacral doctor for 12 years on a monthly basis to prevent headaches and face aches. He says that when muscle and all the membranes surrounding the brain are cut though that they will never line up perfectly again.  He does some magic to the membranes and muscles that keeps the cerebral spinal fluid moving as they should. And it also helps many other issues along the back.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

MLB57

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Re: Regrowth? Symptoms?
« Reply #7 on: April 30, 2017, 11:29:24 am »
Dear Patti and Cityview,

Update..  Had MRI April 26..   Jen who works for Dr Loeffler at Mass Gen called me to say the AN is NOT growing (thank goodness--what a relief!  ;D)  and that it looks really small on scan so it is not causing my symptoms..Recommended seeing a neurologist.. and my next MRI for Dr Loeffler will be in 3 years.

I have a previously scheduled appt with my PCP in May so I have been doing research on tight neck muscles and imbalance.. and it is somewhat a relief that it really sounds like the SCM muscle must be the one causing tightness as it can cause all my symptoms..

So in meantime I have an appt with my chiro so will tell them about this latest development..

Take care everyone and let's hope we can all feel well for some time to come! :)

Regards,

Mary
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

Patti

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Re: Regrowth? Symptoms?
« Reply #8 on: May 01, 2017, 07:03:51 am »
Very good news! Good luck to you!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

MLB57

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Re: Regrowth? Symptoms?
« Reply #9 on: May 06, 2017, 08:45:51 am »
Thanks Patti!  Wishing you and everyone on this journey well!! ;D
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

Cityview

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Re: Regrowth? Symptoms?
« Reply #10 on: May 07, 2017, 05:51:26 am »
Indeed congratulations on the MRI results!

MLB57

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Re: Regrowth? Symptoms?
« Reply #11 on: June 04, 2017, 12:48:28 pm »
Hi everyone!  Just an update--My PCP also ordered X-rays of my neck and they came out normal..So he suggested  I apply heat to the back of my head with a microwaveable neck wrap..and I may do massage if that does not work..But light-headedness has gone pretty much and my vertigo comes and goes so guess these things I will have to live with .  I have figured out which positions can trigger the vertigo so I move slow and it's not as bad as a year ago. My PCP said that damage to the balance system could cause chronic imbalance (and vertigo issues..)

So all in all I am okay with the tests and explanations I have gotten.

Could be a lot worse..So I am thankful.. It's all pretty benign!

Take care everyone! and best wishes!  :D



1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

 


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