Author Topic: Surgery Date at Hopkins, January 12  (Read 32615 times)

Mei Mei

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Surgery Date at Hopkins, January 12
« on: November 26, 2009, 07:29:00 pm »
Hi Everybody,  I'm another Newbie that was diagnosed with a 1.1 cm x 6.1 mm x 8.1 mm AN on Nov. 10.  It's all so new to me and already I've started feeling dizzy and having facial symptoms.  Last Thursday I went to see Dr. Selesnick in NY and he gave me three options:  Surgery, Radiation, Wait and Watch
The next day I went to see Dr. Niparko in Hopkins and he gave me only one option: Surgery and said that there is a possibility of stroke from the pressure on the brain.  Of course I don't want a stroke so I agreed to surgery on Jan 12th and have an appt to meet Dr. Tamargo on Dec. 21st.  I've already got a 35dB loss in the rt ear from this and don't want to lose any more but the risk from surgery is that I might lose is all.  It is saddening me.   My health is good and this is something I have to do to get this thing out of my head.  I'm not looking forward to the recovery time.   I have a 95 year old father that I have to put in respite care for a few weeks and he'll have to understand me for that and then there's the dog that's very attached to me and my father.   Life happens when you're making plans.

Any advice on the differences in opinions...it's a puzzle to me.

Mei Mei  in Chevy Chase, Maryland
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

leapyrtwins

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Re: Surgery Date at Hopkins, January 12
« Reply #1 on: November 26, 2009, 11:01:10 pm »
Mei Mei -

I'm puzzled by Dr. Niparko telliing you that surgery is your only option.  Did he give you his reasoning?  Does he only treat ANs with surgery?  Sometimes docs who only do one kind of treatment (radiation vs surgery) will tell you that the other treatment option is not a good choice simply because they don't perform the procedure.

Although I don't personally know either of these doctors, Dr. Selesnick has a very good reputation and I don't think he'd tell you that radiation was an option for you if it wasn't. 

Have you contacted the ANA for their informational literature? Perhaps it would help you make a more informed decision.  I'm not questioning your choice here, but I recommend you look into both radiation and surgery further.

Yes, strokes can be a side effect of AN surgery, but generally the statistics are not high.  A lot depends on the location of your AN, but I'm sure Dr. Selesnick was aware of that when he gave you your options.

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

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #2 on: November 27, 2009, 07:57:17 am »
Dear Jan,
Thank you for your quick reply and concern.  I really liked both doctors.  I wanted to clarify something.  Dr. Niparko I think said that there was a possibility of stroke if I didn't do the surgery which is why I want to go ahead and do this and get the tumor out.  Dr. Niparko also wanted to proceed with the surgery because I am already symptomatic ... am getting dizzy at times, tinnitus all the time and have a 35 dB hearing loss and feel tingling on the face, scalp, and lip every now and then.  These were concerns to him.   Dr. Selesnick left the choices all up to me:  Surgery, radiation, watch and wait and told me to give his secretary a call if I chose surgery.


Also, Hopkins is 40 minutes from my home which makes life much easier for appts.   It was a 4 hour ride there to NY and then Selesnick made me wait 2 hours.   I almost missed the bus back to Washington.    Dr. Niparko took me on time to the minute.   Everything went so smoothly there. 

I'll go to my ENT who diagnosed me for a consult and talk things over with him as a courtesy and a chance to sit down with him and talk these critical decisions over.

Did I explain myself well?
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

pjb

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Re: Surgery Date at Hopkins, January 12
« Reply #3 on: November 27, 2009, 08:29:54 am »
Hi, I had surgery back in July with Dr. Selesnick and Dr. Stieg my AN was 1 cm. and my experience with Dr. Selesnick was wonderful and something must have happened for the 2 hour wait because everytime I went to him I was taken right away at least within 10 minutes.  My surgery was a success as far as the tumor that he completely removed I did lose hearing and there were other post operative problems but nothing to do with the actual surgery. Dr. Selesnick was with me from the time of surgery and every day thereafter was very compassionate, confident and truly a concerned doctor. I would not hesitate for a moment in recommending him to anyone.
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

pjb

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Re: Surgery Date at Hopkins, January 12
« Reply #4 on: November 27, 2009, 08:31:57 am »
I am sorry I forgot also to mention my biggest concern was the hospital and Weill Cornell was rated in the top 10 for neurosurgery and that was a major factor in my decision.
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #5 on: November 27, 2009, 08:34:28 am »
Thank you for your reply.   I am lucky to have met two such wonderful doctors.  How are you coping with losing your hearing?  Dr. Niparko at Hopkins does the Coclear Implant for that.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

pjb

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Re: Surgery Date at Hopkins, January 12
« Reply #6 on: November 27, 2009, 08:49:17 am »
Not coping well it is all a new experience now because I had no hearing loss prior to the surgery but I new that this was possible and just thankful that the tumor was totally removed sometimes a piece is left behind and then you have to worry about regrowth.  Also I am just so glad that I had no facial parlaysis which many do experience after surgery.  What has started now is tinnitis which is driving me crazy but have to do research on this and possibly a hearing aid right now I am hoping that the good ear will compensate for the AN ear. The only good thing about this tumor is that they are benign and my regular physician and my neurologist both said they only would opt for surgery so I took their advice.
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #7 on: November 27, 2009, 09:00:32 am »
Dear PJB,
I'm sorry you are having hearing loss and tinnitus.  Welcome to my world.  It's isolating and drives you nuts.  I'm a teacher and it's hard to concerntrate in front of a high school class and keep them focused with all this going on in your head.  Did this start after the surgery?   I don't know why you are getting tinnitus now after your surgery.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

pjb

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Re: Surgery Date at Hopkins, January 12
« Reply #8 on: November 27, 2009, 09:31:28 am »
It must be so difficult with this being a teacher there are quite a few teachers on the post surgery site you have to contact them as to what to expect safter surgery sometimes it helps but then again too much information can be overwhelming also, you just have to remember that everyone heals differently.  My neurosurgeon Dr. Stieg says that my tinnitus is possibly due to scar tissue which started about 2 months after surgery ?  I read others have it also after their surgery so at least on this site you do not feel so alone.
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #9 on: November 27, 2009, 09:38:01 am »
I know, we are all in this together.  That is what is so special about this site.   I didn't know that you could get tinnitus from the scar tissue after surgery.  Yeegadz.  What next to think about.  This surgery really isn't that perfect, is it?   It'll be really hard to concentrate on teaching with the noise.  I'm feeling frustrated as it is with the hearing loss and the tinnitus and lightheadedness.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Nickittynic

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Re: Surgery Date at Hopkins, January 12
« Reply #10 on: November 27, 2009, 11:17:57 am »
Hello and welcome from a fellow Marylander!
I had surgery w Dr Tamargo at Hopkins roughly two months ago. Feel free to PM me if you have any questions or check out my blog - http://buginthebrain.blogspot.com.
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

Jim Scott

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Re: Surgery Date at Hopkins, January 12
« Reply #11 on: November 27, 2009, 04:42:46 pm »
Hello Mei Mei ~

I just wanted to welcome you to the ANA forums and tell you that I've added your surgery date to our 'AN Treatment Calendar'  http://my.calendars.net/an_treatments/d12/01/2009?authenticate=&display=M&style=B  It's a bare-bones entry because I wanted to give you the opportunity to add the details, if you wish, or I can do that for you, if that is easier. 

I think your decision to go ahead with surgery is certainly yours to make.  I hope it goes well and although it isn't 'perfect', I'm sure you'll be better off in the long run.  These tumors, although benign, do grow and are in a very vulnerable area.  Their growth can cause a lot of problems so, if surgery is your choice of treatment, the sooner it's out, the better.  Tinnitus is frustrating but can be handled, as many do.  I'm one of them.  Of course, as individuals, we all have varying symptoms and post-op issues but generally, they can be surmounted.  Patience and determination are assets when dealing with an acoustic neuroma, but you probably know that already. 

I trust you'll receive much good advice from our members - and I hope you'll continue to find these forums useful.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #12 on: November 27, 2009, 04:59:09 pm »
Dear Jim,
Thanks for putting me on the calendar and making me official.  Since I don't know how to maneuver  the system I'll ask you to add the details for me.  I'm relieved that a decision is made but not looking forward to the recovery period and the possible side effects that I might have to endure:  Hearing loss, facial paralysis, more tinnitus than I have now.  The questions and expectations about when I'll be back at work are also an issue.  I'm a high school teacher and they'll need coverage.  We'll just have to take one day at a time and get a lot of back up support.

Thank you and all of the members for keeping in touch!!!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

leapyrtwins

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Re: Surgery Date at Hopkins, January 12
« Reply #13 on: November 27, 2009, 07:28:36 pm »
Mei Mei -

thanks for the clarification.  As I said earlier, I'm don't know either of these doctors.  Reading your first post gave me the impression that Dr. Niparko was pressuring you into surgery when radiation might be an option for you.  I apologize for misinterpreting that.  From your subsequent posts it sounds like that isn't the case at all and that you're comfortable with your choice.  I'm very happy to hear that  :)

As far as hearing devices for SSD (single-sided deafness), if you decided to get one you would be getting a BAHA (bone-anchored hearing aid).  Cochlear implants are for individuals who are bilaterally (double-sided deaf).  The BAHA is an incredible device - I've had one for about 16 months now - and will help you immensely.  I have a Divino, but will be upgrading to the BP100 in January.

Good luck with your surgery - and if you have any questions about the BAHA, please don't hesitate to ask.  I'll tell you anything you want to know.

Best,

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

pjb

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Re: Surgery Date at Hopkins, January 12
« Reply #14 on: November 27, 2009, 07:48:50 pm »
Just remember what I said earlier everyone heals differently there are alot of people who recover quickly with little or no complications and I am sure you will be one of them.  The only good thing at least you have a little time off for the Holidays and also think about requesting enough time off from teaching to give your body time to heal and state if you feel better you will return sooner.
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

 


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