Author Topic: Really Happening?!  (Read 7356 times)

Ahollo

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Really Happening?!
« on: February 14, 2015, 01:22:07 pm »
Hi all!

I was diagnosed in December with an 1.8cm in my right ear. My surgery is scheduled for March 23rd, and I am just a wee bit nervous! I'm 36 with no past surgeries. I do know it will be OK, and am staying very positive in regard to surgery/recovery. I am hoping someone can tell me the name of the clinic that will view scans and call for a phone consult? My husband is military, so my surgery will be performed at Sam Houston Medical Center in San Antonio, TX. I was hoping to have the other clinic mentioned view my scans to see if they agree with the same approach of the surgeons at SAMC. Thanks for your help and best of luck to all of you!

Mimispree

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Re: Really Happening?!
« Reply #1 on: February 14, 2015, 03:02:07 pm »
I believe you are referring to www.HouseClinic.com.

Read all you can about the different treatment options and ask the neurosurgeons if they are prepared for all of them and request stats on how many they do and their success rate on preserving hearing and the facial nerve.

I'm sure others who actually sent their MRI to House Clinic will post shortly.

Read the many posts and use the search box to look-up specifics.  There are wonderful "Hero Members" who will be there for you. 

Be well!
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

Ahollo

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Re: Really Happening?!
« Reply #2 on: February 14, 2015, 04:01:21 pm »
Thank you, Mimispree!

That is the clinic I was thought it might be, but wanted to be sure. I was surprised when the surgeon said they perform 1-2 of these types of surgeries a month here at SAMMC. Quite a bit more than I expected in the military community. They are either going to do retro or translab. I will find out March 18th.

Thanks so much for the link! I'm anxious to have the bumpy road behind me.
« Last Edit: February 15, 2015, 04:53:56 pm by Ahollo »

MMusella

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Re: Really Happening?!
« Reply #3 on: February 15, 2015, 09:02:07 am »
You will be ok..I am 4weeks post op.of the translab.and had a large tumor)(3.5), I have the ok of driving and soon getting ready to go back to work..rehab,rehab,rehab,.its what I can say too..as soon as you can start(i had myself set up already 1week after my surgery,I found a good vestibular rehabilitation) they will get you up and going..as far as the doctors I went with my gut instinct remember you are your advocate as far as your surgery..finding a great surgeon and lots of knowledge..good luck on your surgery..
Michelle M..
40 years old, was diagnosed with a 3.5cm.(right side)AN in Nov, 2014 and having surgery on January 13th 2015, live in upstate NY..had a 13 hour surgery. .100%tumor removal. I did 8 weeks of vestibular rehabilitation and went back to my life and career,  with no side effects :)... life is great!!!

Ahollo

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Re: Really Happening?!
« Reply #4 on: February 15, 2015, 09:32:19 am »
Thank you for the encouraging words. I love how supportive everyone is on this forum. It's very refreshing! I have tingling on and off around my right temple, and a dull headache that comes and goes. I am hoping that stops once the swelling, and inflammation goes down from the surgery. The doctors have said it will improve with time. I love hearing you're 4 weeks post op and headed back to work. I teach, and hate that I will be out during the school year. I could wait, but I was informed by the nuerosurgeon that his parter who is the most experienced surgeon with ANs retires from the Air Force in April. I guess I should feel loved he didn't want me in the hands of just anyone. My school has been more than supportive, so off we go! A part of me is relieved for my own children (9 and 13) that they'll be busy with school, so they'll be distracted most of their day. Hubby will be off work for 30 days to help me out. Thanks again for the words of encouragement. It truly makes me feel more calm about what's ahead.
« Last Edit: February 15, 2015, 04:52:37 pm by Ahollo »

MMusella

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Re: Really Happening?!
« Reply #5 on: February 15, 2015, 12:04:31 pm »
If ever you want to know anything..I would tell you my experience..you could email me..like I said go with your gut instinct..I am out and about and know others who have had the same surgery that are back to their everyday lives..and dont skip a beat..
40 years old, was diagnosed with a 3.5cm.(right side)AN in Nov, 2014 and having surgery on January 13th 2015, live in upstate NY..had a 13 hour surgery. .100%tumor removal. I did 8 weeks of vestibular rehabilitation and went back to my life and career,  with no side effects :)... life is great!!!

rupert

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Re: Really Happening?!
« Reply #6 on: February 15, 2015, 08:33:35 pm »
Did the doctors go over all treatment options with you?   Looks like you could be a candidate for GK. It might be something to look into if you haven't already.

Ahollo

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Re: Really Happening?!
« Reply #7 on: February 15, 2015, 09:29:44 pm »
Hi,

I did have a radiology consult about a month ago. The radiologist was brilliant, but did not seem to have as much experience treating ANs. She made me feel very comfortable, and I know if I last minute change my mind to radiation, I would be in great hands. The radiation treatment would be 5 days a week for 6 weeks followed up with yearly MRI's. It may sound crazy, but the radiation scares me a bit. Obviously, the surgery does too! It's such a difficult choice. I'm just ready for the tingling to stop. I can handle the tinnitus, but all of it at once is making me a crazy person!

What are your results with GK? 

rupert

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Re: Really Happening?!
« Reply #8 on: February 16, 2015, 07:44:10 am »
I don't want to come across as favoring one type of treatment over another. This is discussed at length all through these forums.  That said,  GK is a one day treatment and has, depending on your source a 96-98% success rate. Many people resume their daily life the next day.  It is an option many take with very few if any side effects..  Again I'm certainly not advocating any treatment over another as everyone is different and has different views.  UPMC in Pittsburg, and Dr. Lundsford are the platinum standard for GK in the United States.  They will also look over your MRI and give you an opinion whether you are a good candidate.  Many here will tell you when treating AN's experience matters and UPMC has the most regarding GK.  At 1.8 CM , it is just my opinion that it might be something to look into.  There are many, many success stories on these forums about UPMC and the GK program.  I myself was treated at UPMC 5 years ago.  I have had no side effects and my tumor has not only stopped growing but is now shrinking as it dies off.  My tumor at diagnosis was 2.6 x 1.6 if I remember correctly.

NYLady

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Re: Really Happening?!
« Reply #9 on: February 16, 2015, 09:16:25 am »
Hi Ahollo,

You are now where we all have been.....researching and decision making.  I had Gamma Knife in July of last year.  Each treatment has its plusses and minuses.  The one thing I came across in my research of Gamma Knife, is that younger people are usually recommended for surgery because long term affects have not yet been proven with stereotactic procedures.  By long term I understand it to mean 20-30 years down the line.  I am a good deal older than you are (70+).  My doctors (Roland and Golfinos at NYU) recommended Gamma Knife for me.  My tumor is small (under 1cm), however it is located just barely into the cochlea.  So far Ahollo, I have had a good experience, basically just as it was explained to me prior to having it.  The procedure itself was really not difficult (even with the headframe...that was almost a non-experience)  From start to finish, I was home within 6 hours.  I was even better than prior to procedure for about three months, and then started to get some dizziness and balance issues and little more tinnitus.  Hearing has declined some, but not totally.  This was explained to me prior to procedure as possibly happening as a result of swelling of the tumor in response to radiation.  So we work through this and move on, hopefully to better days.  I am not sorry I went ahead with Gamma Knife.  For me, personally, I really did not want the risks associated with surgery or to invest the possible time needed to fully heal from them.  GK seemed like a reasonable alternative....still doing something which has a good track record so far for people my age, and not as invasive as surgery.  However something to be considered....no treatment is without some risk of some kind.  I think we have to pick the things that matter most to us and go forward from there.  Easy?  No way!  Really look into your options, do your homework and listen to your gut.  So many things to consider, but you will get there and when you do, your mind will be a little more at peace.  Another good thing, if you can find a doctor that does both radiation and surgery, you would probably get a better overall picture of what is best for you.  I truly wish you the best in your decision making and look forward to following your progress.

Best to you,
NYL

Ahollo

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Re: Really Happening?!
« Reply #10 on: February 16, 2015, 07:11:51 pm »
Thank you all for the support! It is such a tough decision. The radiologist I met with doesn't offer GK. My husband is in the Air Force, so my doctors are all on base at Ft. Sam Houston in San Antonio. It would be great to choose the best of the best, but I have no idea how much this surgery would cost out of pocket! The radiation offered was over a span of 6 weeks 5 days a week. They would create a mold for my face I would wear for each treatment. The surgeons seemed more experienced. The more digging I do, the more depressing it gets! I set up my long term sub for school, but a part of me is doubting surgery. Lots of prayers for direction!


rupert

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Re: Really Happening?!
« Reply #11 on: February 16, 2015, 07:35:46 pm »
Definitely a tough decision. Knowledge is power,  so take your time and get as much educated about all treatment options.  When I first started doing research I thought mid fossa surgery was what I wanted, however I found out quickly that my tumor was too large and  my hearing was far worse than I thought.  Scheduled retro sig surgery and began the 2 month wait.  I didn't even consider GK at the time but, my primary care doctors prodded me to look into it. Why would you have an invasive surgery? So I started researching GK and found what I was looking for.  I ended up canceling my surgery exactly one week beforehand.  The rest as they say is history.  Definitely a lot to decide, especially if there are limiting factors.  An out of pocket treatment would have be a negotiated deal with the doctors and the hospital and would be quit variable depending on if you could get other financial assistance from groups that provide such. 

Mimispree

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Re: Really Happening?!
« Reply #12 on: February 16, 2015, 09:40:11 pm »
I'm sure your base doctors in San Antonio are not your only option for this surgery.  Squeak and get your doctors involved in finding you a Gamma Knife specialist to view your MRI.  The military has many great medical resources available to you but as you know, you have to present a clear and decisive argument to get them on your side to make sure you have the best options for your particular tumor, not what is the best option for them.  You and your family are worth it, so insist they find a Gamma Knife specialist on their payroll and start there.  They can fly you wherever you decide is the best place to have your surgery done.  Stand up for yourself and write here if you need support.

Be well,
Michelle
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

ANGuy

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Re: Really Happening?!
« Reply #13 on: February 17, 2015, 09:06:57 am »
I'm sure your base doctors in San Antonio are not your only option for this surgery.  Squeak and get your doctors involved in finding you a Gamma Knife specialist to view your MRI.  The military has many great medical resources available to you but as you know, you have to present a clear and decisive argument to get them on your side to make sure you have the best options for your particular tumor, not what is the best option for them.  You and your family are worth it, so insist they find a Gamma Knife specialist on their payroll and start there.  They can fly you wherever you decide is the best place to have your surgery done.  Stand up for yourself and write here if you need support.

Be well,
Michelle

Excellent point.  Why I wouldn't automatically discount the skills and technology available to our Service Members and their families, some of it is leading edge and top notch, there are too many instances when our Troops get the short end of the stick.  I've never been a part of that system, so I don't know how it works.  I do know bureaucracies and how bad they can be. 

I would spend a good amount of time researching what the best treatment is and where to get it.  If that is in the military system (Tri-care?) great.  If it isn't, use whatever resources are available, including your Congressman, to get it. 

I figure with all of the traumatic head injuries treated by the military, they may be the single best source of treatment for an AN.  But, those Drs. might be in Maryland, not Texas.  Think of all he Troops who basically have a "retro-sig" injury due to blasts etc. and all of those surgeons who put them back together.  There has to be a lot of skill and experience in that system.
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.

Susan59

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Re: Really Happening?!
« Reply #14 on: February 17, 2015, 12:16:12 pm »
Ahollo,  you said you are "having doubts" about your surgery. If you feel this way, step back and take some more time to research your options. My AN was 1.7cm and I took 6 months to research my options. You do not have to rush into anything. I sent my MRI to Dr. Lunsford at UPMC and finally decided on Gamma Knife. You may or may not want to do that, but I would not rush into surgery because the only available surgeon was retiring soon.  You have time to research all options.

 


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