Author Topic: New guy  (Read 14003 times)

golfguy49

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Re: New guy
« Reply #15 on: April 09, 2018, 07:17:36 am »
Thanks, mac84.  Good luck with your MRI this month.  Look forward to hearing about your results.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

lablove

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Re: New guy
« Reply #16 on: April 18, 2018, 05:28:12 am »
Hello Golfguy,
This is my one year anniversary of middle fossa removal of a tumor your size and I am just a little younger. I am happy to be on the other side of surgery and am rid of the tumor. I am also very joyful with life today but it was a very difficult recovery. I wasn't quite prepared for how bad it could be. Prior to the surgery I had perfect hearing, feeling of cotton/fullness in ear, moderate fatigue, and a "floaty" sense of balance. My demeanor was very similar to your post. Removing the tumor sooner than later was to give me the best chance of hearing preservation, non disruption of facial nerve and chance for better balance recovery. After surgery I had complete facial paralysis, permanent and complete single sided deafness, complete removal of balance nerve, csf leak, inability of have eye exposed to air despite the ointments and drops for months, and significant persistent tinnitus. That being said, it was a long road to regain my life back. Despite the complications and difficult recovery I still think I am better off having had the surgery and being rid of the tumor. I don't think though based on everything I went through with all possible complications that you should rush into it. Not a big chance what happened in my case will happen in yours, and I will specifically pray that it does not, but there is a real possibility of significant life disruption. Pick the time it is best for you to potentially dedicate a year to getting better...and be relieved when you are healed much, much sooner complication free.

golfguy49

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Re: New guy
« Reply #17 on: April 29, 2018, 12:57:29 pm »
Thank you, lablov.  I am sorry to hear how hard your recovery was, and that is what concerns me most.  Not only because of the pain and difficulty, but the idea of essentially ending my career and thus not providing for my family is, well, unimaginable.  It's all I have done for 30 years, and it is my purpose.  To think I could go through a 1-year recovery is not something I can contemplate without a better long-term medical and financial plan with my family and wife (so far no one else in the world knows about this except my wife and doctors), so I am willing to take the risk and wait for the next MRI to see what it tells me.  My hearing and the tinnitus remain stable.  Hearing is about 85-90% OK in that ear and my tinnitus and I get along.  I have recently had the balance tests done at my ENT and get results back tomorrow.  Hopefully that will give the doctors a better idea of whether or not middle fossa is even a feasible option (to save hearing).  If it is not, the doctors say why take the risk, and they would go with a translab instead. Your description of being "floaty" is a good one - it is so minor as to be able to get used to it, but I do know it is always there.  Sometimes it feels absent altogether.  Thanks again for your post and your prayers.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

Cityview

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Re: New guy
« Reply #18 on: April 30, 2018, 03:47:52 pm »
I think if there's a choice between watch and wait and treatment, and a person is newly diagnosed, it's a good idea to watch it. The benefit of waiting gives the patient more time to understand the different choices. When you delay treatment and choose observation you always have the right to treat later when things seem clearer. Sometimes new information becomes available or you understand the risks more.
Also when you choose to wait it gives you a goal to reach - your next MRI. You can always use that as a focal point and as a time to reassess the situation and gather information in the meantime.
Sometimes we worry about the chances of rapid growth and sometimes it may happen - but rarely. More likely it will stay the same size or grow very slowly.


Nobody can predict the future and what the symptoms may be but we can only go on the information we have right in front of us.


mac84

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Re: New guy
« Reply #19 on: May 01, 2018, 11:58:57 am »
CityView has it EXACTLY right. Well done.
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

ANSydney

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Re: New guy
« Reply #20 on: May 01, 2018, 05:13:26 pm »
I agree, Cityview is spot on.

Jakey

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Re: New guy
« Reply #21 on: May 06, 2018, 10:53:26 am »
If your hearing & balance issues are not worsening, then I would watch & wait as well.  That said, note that there are some limits to AN size & location when it comes to treating via radiation, so you just need to know how those relate to your situation before making a decision.  Don't wait so long that surgery is your only option. 

The other benefit to waiting is that if you can delay treatment for several years, you will have more treatment options than you have today, through advances in technology & medicine.  Just last month someone here posted an article about a Phase II study being launched on the use of the drug mifepristone to treat AN.  Now wouldn't that be nice if we could take an oral medicine to halt growth/shrink these things.

Abetpds

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Re: New guy
« Reply #22 on: May 06, 2018, 02:18:42 pm »


Computational repositioning and preclinical validation of mifepristone for human vestibular schwannoma Done by Mass Eye and Ear Institute.  I've done some reading and reached out to Dr Friedman in U San Diego for comment.  He said that this is a computational algorithm with no data on people done.  However, these tests were done on AN tumors taken out during surgery.  Would like your opinion/comments on this.  My tumor is pretty large and if this drug works to curb growth - I'd do it.   Thanks  Regina

notaclone13

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Re: New guy
« Reply #23 on: May 06, 2018, 06:57:06 pm »
Hi Regina,
I am a retired scientist and read the paper about mifepristone.  I worked with many tumor cell lines through the years.  Unfortunately, drugs that look promising on cultured tumor cells may not work the same way when administered to patients with growing tumors. That is what the clinical trial will determine, however, it may well take a year or more to find the money to finance the trial and then recruit patients and run it.  Since ANs usually grow slowly, even when untreated, it will likely take a couple more years before the results of the trial are known.  Since your tumor is now near the brainstem, and apparently growing, you are probably going to have to make a decision in the very near future, before the trial can be intiated.  Are you a candidate for Gammaknife or Cyberknife?  It might be good to see if that is possible.  If not, than it would be wise to find the best surgeon available and I know that Dr. Freidman is one of the best.

Kaci

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Re: New guy
« Reply #24 on: June 02, 2018, 06:57:16 am »
You may have had the surgery by now but if not just putting my suggestion out there. l was diagnosed last year at 46, female. No symptoms other than a sudden change with a ringing noise in my ear. l am fortunate the ENT sent me for an MRI. l am in CT and saw many doctors ln my area, mostly Yale. l had consults over the phone with House in LA and Michigan Ear Institute. After extensive research l wasn’t satisfied with the CT doctors and the little experience they had with these tumors. l narrowed my search to NYC With Dr Golfinos and Dr Rowland, one the surgeon the other being the neuro surgeon. l chose them for many reasons but to highlight a few was the fact that they remove these tumors weekly, atleast two a week sometimes more. On the East Coast l believe they remove the highest number of them and l liked the fact they are partners. At Yale the neuro would of been whoever was on call and their removal was a few hundred not thousands. l had a long battle with my insurance but l won my case. My advice is to seek out the best of the best. My tumor ended up very sticky and more complicated then they thought. Had l not had experienced surgeons l do not want to think of what could of been. l will be a year post op in July still recovering. l was out of work for 3 months, way longer then l thought l would be. Take your time in your reasesrch and recovery, best of luck to you
Kaci in CT

Abetpds

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Re: New guy
« Reply #25 on: June 08, 2018, 07:07:19 am »
Thanks to all of you.  I decided to do surgery at UCSD with Friedman and Schwartz.   I paid them a visit in May to interview them in person and was happy with them and their patient advocate Kris Siwek.  Surgery scheduled for June 26th.  I opted for the BAHA 5 over the Oticon mainly because of the "feel" I got from my audiologist.  Wish I knew for sure which is the right one for me.  Only problem is that hotels are sooo expensive in La Jolla even with the hospital rate.  Looked into Air BNB and Home away --but they are mainly "vacation" spots and are not cheap.  Still looking. Suggestions anyone?
 Keep me in your prayers please.  Thanks  Regina

leapyrtwins

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Re: New guy
« Reply #26 on: June 08, 2018, 09:37:11 am »
Hey, new guy.  I live in Illinois and had my surgery on 5/31/07 with Dr. Robert Battista @ the Ear Institute of Chicago.  Look him up.  He's a phenomenal doc who really knows his stuff.  He does both surgery and radiation - and doesn't "push" either, unlike some doctors who only do surgery or only do radiation.  He's also low-key, very honest, and has a great bedside manner.  He will not sell you a bill of goods; like some.

I chose to have surgery (retrosigmoid) and my outcome was incredible - no facial paralysis or other permanent "issues" with the exception of being SSD (single-sided deaf) and that was only because my AN was wrapped around my hearing nerve and it had to be sacrificed in order to remove the entire tumor.  I opted for a BAHA implant 9 months post AN op and life is good.  BAHA's rock!

If you want to know more about my AN "experience", there are hundreds of posts on this forum.  Check them out - and if you have any questions, don't hesitate to PM  or email me (my email address is in my profile).

Good luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

leapyrtwins

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Re: New guy
« Reply #27 on: June 08, 2018, 09:39:59 am »
Abetpds -

the BAHA 5 absolutely is the way to go!  I love mine - as I've loved all my other Cochlear BAHAs.  I've been a customer since 2008 and along the way have upgraded from the Divino to the BP100 to the BAHA 5 (that I currently wear).  All the upgrading wasn't necessary, I just wanted the newest technology - which is something Cochlear excels at. 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

golfguy49

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Re: New guy
« Reply #28 on: October 06, 2018, 03:53:56 pm »
Had my 6-month follow-up MRI this week.  Radiology concludes it has grown just a bit - 12mm x 5mm x 5mm now compared to 10mm x 5mm x 5mm at diagnosis 6 months ago.  I have no additional symptoms, and my other symptoms remain stable (tinnitus/hearing slightly impaired/some head pressure that results in late-day fatigue/balance seems OK compared to early days).  Won't see the Dr. for a couple of weeks to hear what these new MRI results could mean.  Is it possible that 2mm is within a margin of error for assessing the size and growth?  Or, is 2mm enough to signal the need to consider surgery?  Middle fossa has been the surgery discussed and multiple surgeons concurred on that, as with this size and placement it seems there is a possibility to save some hearing if the surgery is done soon enough.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

golfguy49

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Re: New guy
« Reply #29 on: November 26, 2018, 01:19:11 pm »
The Dr. referral process takes quite a while, and I finally talked to the 4 docs with whom I intended to discuss my October MRI results:  Slattery at House, Fishman in Chicago, Battista in Chicago, and Leonetti in Chicago.  Let me just say these doctors have all been great to speak with and I feel I can trust my noggin with any of them.  I have researched them all in various ways as well.   None seem too pushy about jumping in and doing surgery, but from all 4 I heard that:  (1) this thing will need to come out at sometime in my lifetime and (2) if I wait and growth continues, especially at this rate, the likelihood of saving hearing in that ear goes down pretty fast from here (3) I am not a good candidate for gamma knife.  How fast more rapid hearing loss could happen slightly varies among the Drs opinions.  My hearing test and balance did not come out good - I have less speech recognition in that ear than I had just 6 months ago, by quite a bit (15-20% or so).  The tumor is "most likely" on the superior nerve per the balance tests. 3 of the 4 docs also agree middle fossa is the way to go (one of whom doesn't even perform middle fossa), and the other one said he doesn't deal with middle fossa because of the need to retract the temporal lobe - too much risk in his mind, so he said he would do retrosigmoid, which I understand from additional research probably has a lower chance of hearing preservation.  I'd hate to do retrosigmoid and not have the best possible shot at hearing preservation.  I also read about CSF and headache problems a bit more with retrosigmoid.  Even the middle fossa docs call it 50/50 to save hearing right now.  My gut is telling me to schedule the surgery for January.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

 


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