Author Topic: My 22 year old son just had surgery on February 9  (Read 3990 times)

S. Robin

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My 22 year old son just had surgery on February 9
« on: February 13, 2017, 07:41:07 pm »
Some of you on this forum saw my post several months back about my 22 year old son. He was diagnosed with an Acoustic Neuroma last July. Trying to decide on treatment and doctors and hospitals is very stressful. I seriously tortured myself worrying that we would make the wrong decision. I feel for those of you making those decisions now. I commend you for taking the step to look for information on this very helpful site. I wanted to give an update on my son.

After hours of research and discussions with a number of doctors we decided to go with Dr. Babu and Dr. Jacob at the Michigan Ear Institute.   I think it is very important to do research on which surgeon is best for you as many people on this site encourage. I don't want to debate stats, but my husband and I were finally convinced that Dr. Babu and Jacobs were the best doctors for us, based on numbers, location and confidence after speaking with them. Do the homework, check for yourself, ask all the questions you need to so that you have confidence in the surgical team you choose. Our team literally spent several hours (altogether between all of the doctors) answering our questions.   This is a rough surgery, I'm not going to sugar coat that at all, but Dr. Babu and Dr. Jacobs (and Dr. Jackson) were fantastic every step of the way. We could not believe the level of concern and care they gave to my son. They each have an amazing bedside manner and are clearly highly skilled surgeons. My son came through with no facial weakness and no CSF leaks so far.  We arrived home today from the hospital. Jon is walking around the house comfortably without an enormous amount of pain. (He is still taking pain medicine off and on but is doing great.) Tonight, 4 days after having a very tough surgery, he is home and will sleep comfortably in his own bed.

About the hospital, we didn't put nearly as much thought into that. That is where the doctors practiced so that is where we went.  But it really made a difference in the experience.  Jon had his surgery at Providence Park Hospital in Novi Michigan. Providence Park is in an upscale suburb. The hospital is a newer facility (2007 I think) and has a very pleasing atmosphere. The fifth floor has a Neurosurgical ICU that is perfectly equipped for the very large number of acoustic neuroma surgeries they treat. I can not think of one negative thing to say about even one member of the staff with whom we crossed paths. They are literally bustling around quickly, efficiently and very determined to provide the most comfort they can to people going through what are probably the worst days of their lives. They see so many AN patients that they seem to anticipate a need before you even need it. They have sofa's in the patient rooms for family members to stay with their loved ones during the entire stay if they so desire.  The whole floor seemed to be pulling for my son and keeping up with his progress.

We are just so grateful that the surgery is over and that it went so well. I am so thankful for the hospital staff and doctors that treated my son with such compassion. No one can guarantee the outcome of such a delicate surgery. I am painfully aware that not every outcome is good. It is heart wrenching to hear about the dear people that ended up with serious complications. My son had a lot going for him going into it. He is young and his tumor was small. Thankfully it was on the vestibular nerve not the facial nerve. Those things can make a difference in how you bounce back.  I just want those looking for hope to know that my son got through it. I know how overwhelming it can all seem. I felt it too. Take it one step at a time until you feel confident in your decision. Just like the many lovely people that were pulling for us on this site, I am now pulling for you!
8.3 x 4.2 x 4.3 mm AN, translab recommended
22 year old
sudden loss of hearing in left ear

alabamajane

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Re: My 22 year old son just had surgery on February 9
« Reply #1 on: February 13, 2017, 08:01:24 pm »
Congrats to you and your son for a wonderful outcome and such a personal, informative post. It will help many on their journey, I'm sure,,

Best wishes for continued, successful recovery ,,, I'm sure as young as he is that he will do well,,,

Thanks again,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

S. Robin

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Re: My 22 year old son just had surgery on February 9
« Reply #2 on: February 14, 2017, 11:32:13 am »
Alabamajane, I hope you are doing well on your journey with AN. I think you are so very brave. Thank you for your kind comment.
8.3 x 4.2 x 4.3 mm AN, translab recommended
22 year old
sudden loss of hearing in left ear

ANSydney

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Re: My 22 year old son just had surgery on February 9
« Reply #3 on: February 14, 2017, 03:52:04 pm »
Congratulations on the good outcome. 22 years is very young to get an AN. Did the doctors rule out NF2?

S. Robin

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Re: My 22 year old son just had surgery on February 9
« Reply #4 on: February 14, 2017, 04:42:20 pm »
ANSydney, they have not. My sister's grandson has NF1. I think I will follow up because my son has battled hypertension since he was about 8 caused by renal artery stenosis. I read recently that 2 percent of NF patients have renal artery stenosis. It seems like such a coincidence for him to have the renal artery problems and an AN so young. I will look into it after he is feeling better.
8.3 x 4.2 x 4.3 mm AN, translab recommended
22 year old
sudden loss of hearing in left ear

ccooper

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Re: My 22 year old son just had surgery on February 9
« Reply #5 on: February 14, 2017, 10:58:34 pm »
Great story! I look forward to hearing how he progresses. Youth is on his side.
37 yr old female
3.4x3x2.6
Retrosigmoid February 2016 at UC Health
Oops they forgot to tell me tumor was left behind
Doubled in size
Re-do Retrosigmoid at House July 2016
SSD, Facial Paralysis but almost recovered

S. Robin

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Re: My 22 year old son just had surgery on February 9
« Reply #6 on: February 15, 2017, 12:03:52 pm »
Thank you ccooper, my goodness, you have been through such an ordeal. I look forward to hearing about how much better you are doing with each passing day, month and year.
8.3 x 4.2 x 4.3 mm AN, translab recommended
22 year old
sudden loss of hearing in left ear

Roalb

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Re: My 22 year old son just had surgery on February 9
« Reply #7 on: March 06, 2017, 01:43:17 pm »
Thank so much for taking the time to post your story. I will be having surgery on March 14th and it's nice to read the positive outcomes on this site. Continued good luck to you and your son.
3cmx2cmx2cm (12/27/16 scan)
Failed FSR June 2000 @ Johns Hopkins
Surgery(Trans Lab) 03/14/17 @ Vanderbilt