ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: suethompson on December 06, 2014, 04:41:26 pm
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I am a "newbie" and the proud great aunt of a beautiful 16 year old niece named Berkley. We have a very small family and I have been very involved in raising both Berkley and her mom. The day before Thanksgiving Berkley was officially diagnosed with a very large AN measuring 4.5 and surgery is scheduled for Dec 16 at Medical City Dallas. She has already lost most of her hearing, tumor is attached to the brain stem and slight facial nerve damage (drooping eye) has occurred. We have obtained a second opinion and already done allot of AN research. We have a fairly high comfort level that we have found one of the best & experienced team of doctors & neurosurgeon in Dallas.
However, it appears from research and conversations with her doctors that the size of the tumor for a 16 year old is very rare and presents a higher risk for surgery, complications & recovery. She reported a hearing loss several months ago and as the testing/diagnosis progressed, the AN was finally discovered on a CT & MRI. Obviously, we are all devastated, overwhelmed and afraid.
Are there other ANA members that have had tumors this large removed? Are there other ANA members that are this young? Any information or input is greatly appreciated.
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Well, I am not, nor was I, anywhere close to that young when mine was uncovered. I am sure you are all scared. However, this is all recoverable. Mine was right about that size and I have had good results. However, my case is really unusual, so don't get scared off reading my story if you follow the link in the signature. My surgery was 32 hours to get about 90-95% of the tumor and that was followed with 28 sessions of FSR two years later.
Life is good for me. Some imperfections, but they are few and generally I am unaware of them.
Know that larger tumors have been removed successfully and most patients have good results.
Hang in there!
Tod
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Tod - thanks for the kind words. Yes, I have read some of your story and it sounds like you have had some huge challenges. Support groups mean a lot, I was very involved in an esophageal cancer group 11 years ago with my husband's EC. He recovered and I give major credit to the support and advice from those who have run the marathon. I know that this association and support group have useful information I can share with Berkley and her parents. Her young age should be an advantage during surgery & recovery. She is tiny, weighing less than 100 pounds and it is hard to image a tumor of this size in such a tiny space.
The best to you!
Sue
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Hi Sue,
I am glad you found us and hope your research will not be overwhelming or confusing.
I am not familiar with Medical City Dallas, yet, you want to make sure that the treating team is fully up to par for surgical removal/resection of acoustic/vestibular schwannomas.
The ANA offers wonderful resources. On their home page, they provide a list of skillful treating facilities. You could contact UT Southwest in Dallas which is noted on the ANA website. There are many locations that also offer free consults, such as House and/or Keck USC.
The tumor is deemed too large for radiation as the typical cut off size is 3cm. I know of many here on the forums over the years that were younger than 25 years old. We had, at one point, 3 younger adults, going through the same thing. You may want to check out "Taylor" as she was a teenager, with a very large tumor. She had surgical debulk (remove most of the tumor) with the remaining tumor treated with radiation. I can share that she continued her college studies, became an EMT as well as finished her nursing degree. She is now a nurse :)
Sending wellness wishes to Berkley. She is very lucky to have you looking out for her (and her mom!)
Phyl
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Hi Phyl,
It is great to hear from another member of the group. Appreciate your concern & interest.
We did talk with UT Southwest and consulted with Walter Kutz who many AN members have reported as top notch. He confirmed the treatment, said he thinks very highly of the doc/surgeon first consulted and recommended we stay with the team at Medical City since they were able to schedule sooner. All have advised that it should be removed as soon as possible, we are still on for Dec 16. Medical City is ranked as one of the top Dallas hospitals and they do show AN as a surgical specialty.
Brian Peters has a Otology Neurotology practice and both he and the neurosurgeon, Martin Lazar, were asked the AN questions provided on the web site. From all the research we have done, Berkley's parents are satisfied they have found excellent, caring docs. I would have loved the reassurance that other AN members could recommend Peters & Lazar but realize the membership does not represent the majority of AN patients. Praying they have made the best decision and for a positive outcome.
Sue
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I am well past being a teenager, I was diagnosed at age 65, but I did have a large tumor measured by the neurosurgeon at 4.7 cm. I had significant brain stem and cerebellar mass effect and was told to have the surgery within 6 weeks by 2 different established AN treatment
hospitals.
I had the surgery and did have significant complications that have resolved to a great degree. I rarely think about them these days, more than 3 years later. Large tumors are more difficult to treat, but recovery does happen, though it may require patience.
In my case only 95% of the tumor was removed as the tumor was adhesive to the facial nerve and the surgeon agreed before surgery to leave tumor behind rather than risk damage to the 7th nerve. He agreed that it was better to risk regrowth of the tumor remnant than risk facial nerve damage. I have had three follow up MRI's since surgery over a 30 month period and there is no change in the tumor remnant on the facial nerve. I also had a sliver of a remnant left on my brain stem as the surgeon could not achieve a good plane to dissect along, but that remnant no longer enhances with the gadolinium so is assumed not a problem. Good luck to you and your niece, sorry someone so young has to go through this, but she will get through it.
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Sue
I know it is just a couple of days prior to Berkley's surgery. My thoughts and prayers are with all of you. This will be the start of a new stretch of life for all of you.
I am in the monster tumor club. Mine was over 5" and causing major health concerns which did not allow me to research treatment options (my initial surgery was performed emergently on the day of my diagnosis). Because of that the initial goal was to just debulk (reduce the size) to get me to a point where I could live with it until further decisions could be made. The surgery created scar tissue which made future procedures more difficult.
Nearly six years later I am a healthy 47 year old male with no signs of remaining tumor. I am a different and better person today.
It is a scary time but in a few years it will be a distant memory.
Tim
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Tim - thank you for your encouraging message and I will share it with Berkley. Tomorrow we leave for Dallas in preparation for Tuesday surgery. Hope to be home in time to celebrate Christmas at their new home. In the middle of this scary diagnosis, her family's new home was completed and we spend last week getting them moved/settled. Berkley said she is going to find a way to use her experience with AN to help other people -- the wisdom/heart of the young!
We appreciate your thoughts & prayers. Her mom has established a public Facebook page to keep friends posted and ask for prayers. If you want to see this sweet family, take a look at www.facebook.com/prayersforberk. Berkley is the youngest/smallest of the two girls.
Sue
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Sounds like she is wise beyond her years.
Keep us updated.
God's peace
Tim
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God Bless her!
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Wonderful to hear that all went well with the surgery and her facial nerve is intact. I am praying for your fast and complete recovery!
Merry Christmas, Berkley and Happy New Year as you recover!
rodneyd
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Update on Berkley - for those who have been following my beloved great niece, Berkley, her surgery was yesterday and lasted a long 12 hours. Her surgeon said it was a "text book AN case", as large as initially thought (close to 5 cm) and all went as expected. Surgeon is amazing, he has three more AN surgeries in the next week. They did have to leave behind small fragments to preserve her facial nerves but are hopeful they will dissolve and will continue to follow for any regrowth. A lot of pain & nausea, left facial paralysis which is anticipated to eventually resolve.
Berkley even smiled (pretty crooked!) in ICU and said she is happy that they didn't shave her entire head. This is very important to a 16 year old that just celebrated her one month first boyfriend anniversary! We know there are many recovery challenges to come but are praying we have her home for Christmas.
Thanks to all for your kind, encouraging thoughts, prayers & posts. I have been reading your messages to Berkley & her mom, dad & sister. Rod, as soon as Berkley is alert, I will give her your Merry Christmas message; she will love it.
I do plan to encourage Berkley to participate in the AN support group and believe it will help with her recovery.
Sue
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Thanks for the update and continue to pass along the love we have for her.
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I would just say that we all have our "crosses" to carry. But at just a young age Berkley has shown the way to be a very strong young women. May God place his healing hand on her and lets her be home by Christmas.
TJ
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So glad to hear Berkley's surgery went well. Continued wishes for her healing and recovery. I'm 3 weeks post-op myself and, while overall I'm doing great, things aren't going as quickly as I'd like. So I'll wish for her to have patience as well. :D
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Glad to hear! I hope she is noticing improvements day to day
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Yesterday was a fairly good day, was able to walk a short distance with walker & help. Today, not as good and knew there would be ups & downs, just looking forward to hospital dismissal so she can come home for Christmas. Threw up this morning and not eating enough to compensate for oral pain meds. Recently switched her from IV pain meds since oral appears to be more effective. Know it is better to stay in hospital longer than go home too early.
Thanks to all for posts and for caring.
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Sue,
Thanks for the update. Reassure Berkley, from someone that had a similar procedure on a large tumor, that things will get better. I also had a walker for my first few walks and thought things would never improve. I run several miles per week and have snow skied since my surgery.
Merry Christmas!
Tim
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Many prayers for her thru this Christmas and New year season..... May she have a speedy recovery and start 2015 on her way for a great life.... May God bless, Mickey
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BERKLEY IS HOME! We know the recovery will take patience and are looking forward to each baby step. We wish all forum members a very Merry, blessed Christmas and will continue to hold all in thoughts and prayers as you continue your AN journey. May the journey be shorter and easier for all.
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I'm so glad to hear Berkley is doing well. She is lucky to have an aunt who seeks out helpful resources like this forum. I look forward to reading her first post.
Be well,
Mimi
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How is she doing now? I hope her spirits are high and she is noticing improvements.
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Hi Brian - thanks for asking. First follow up appointment with surgeon, eye & ear docs was earlier this week and they all thought she was progressing well. Still hopeful that the facial paralysis and eye problems will dissipate as recovery progresses. Eye doctor is waiting before considering an eye weight. Her spirits appear fairly high and even made "faces" with her girlfriends the other night to win the best worst face. She has been told she cannot return to school until next fall and this will be tough on her.
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I don't know the ins and outs of it all, and it might not be of any help to her, but there are legitimate online, accredited, high school courses available. If this can help her, I would go through the front office at her school to see what they recommend so that any courses she takes are of the type than can be credited to her graduation or even for future college credit.
I'm sure what she really wants is to go to shool with her friends, but maybe by being able to keep up online, she will not loose a year.
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Why is the school not allowing her to return?
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It is not the school, it is the care team that has estimated a return next fall due to the recovery time they believe she will require. Many doctors give the worst case scenario and hopefully they will be wrong. Both parents are in education/teaching so home schooling will not be an issue. The main issue will be Berkley wanting to be back in school with her friends and we will all do everything possible to make that happen sooner rather than later.
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Ok I understand now well I hope she recovers well and if she ever needs a resource on what she is going thru have her visit this site. Does she have facial paralysis or a none blinking eye? How is her spirit? Take care and keep the forum updated.
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Feline , yes she has all the complications that often occur with the surgery with a tumor so large; measured at 5 cm & surgery lasted 12 hours. Facial paralysis, eye issues, balance, etc. Docs are pleased with her progress. I have encouraged her to seek support through the forum and hope will do so after a little more recovery time, has only been less than 3 weeks. Spirits seem to be fine and has youth on her side. Thanks for asking. Her mom is still posting updates on a public facebook page: www.facebook.com/prayersforberk. Berkley is a beautiful young lady, take a look at her family picture (she is the youngest of the two girls). Just a proud auntie bragging! .