Author Topic: confused in California  (Read 4250 times)

kelli

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confused in California
« on: December 18, 2007, 05:12:18 pm »
Hi, my name is Kelli and I have been reading the discussions here and I am so grateful to you all for your sharing. I have learned so much from this site. I was diagnosed in Jan. 2007 with 3cm AN on left side.  I have been in school the past few years and have had serious headaches, dizziness, ringing in the ear and double vision.  I would close one eye to read because the double vision was so bad.  I really thought it was all stress and school related.  I finally went to the doctor and he agreed with me that stress can cause these symptoms.  I went back to him and insisted that I'm having strange leftsided headaches and my left ear won't stop whistling, ever. I finally got to go to the ENT and she ordered the MRI which came back with a 3cm tumor.  I was in shock for quite awhile and started all of the alternative holistic treatments available.  I read all of the natural cure books and set about trying to heal myself.  I fasted, prayed, visualized, tried Chinese medicine, vitamins, vegan diet, oil pulling, drinking gallons of water a day, yoga, acupunture, about 20 different herbs, saw faith healers, energy workers, even flew to Canada to see a famous healer. I really believed in natural healing.  However, as of my recent MRI, a couple of weeks ago, I found out the tumor is still there at 3cm.  I have Kaiser and went to see Dr. Nutik in Redwood City.  I really feel safe with him as a surgeon, I'm just so confused!  I have cancelled 3 surgeries with him because of extreme fear. Kaiser in L.A. has said they could probably treat me with Novalis, daily over a 6 week period. I'm wondering if anyone has had the Novalis treatment and how it feels.  I am right at the cutoff at 3cm, so I still have the choice of radiosurgery. I feel like getting this out sometimes, then I think radiosurgery is better.  I've never been so confused in all of my life about anything! I still want to have children some day and wonder if the radiation will hurt my body. I'm already 39, so I don't have very much time to spare.  I also still have good hearing on my left side. I welcome any ideas or suggestions for treatment.

Thank you all so much.

In gratitude,

Kelli
Diagnosed 3cm AN January 2007
Tried holistic treatments for one year. Finally had posterior fossa at Kaiser Redwood City with Dr. Nutik on Dec 20. Followed by cyberknife at Stanford in April for residual tumor.
Thank you Dr. Nutik!

kelli

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prayer request for surgery Dec 20
« Reply #1 on: December 18, 2007, 07:18:38 pm »
After I finished writing this last message, my surgeon called and said there was a cancellation for Dec 20.  He is Dr. Nutik from Kaiser Redwood City.  He will be doing the posterior/suboccipital approach to remove my 3cm tumor.  I am shaking now, as this is all happening so fast.  I pray that everything will go beautifully during surgery and I will have a quick recovery.  Thank you All!
Happy Holidays,
Kelli
Diagnosed 3cm AN January 2007
Tried holistic treatments for one year. Finally had posterior fossa at Kaiser Redwood City with Dr. Nutik on Dec 20. Followed by cyberknife at Stanford in April for residual tumor.
Thank you Dr. Nutik!

1wareagle

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Re: confused in California
« Reply #2 on: December 18, 2007, 07:22:09 pm »
Welcome Kelli,

     You seem like you have really researched all your options and treatments well. You are so close to House Ear Institute and haven't mentioned them. While I was there other ANers were coming from all over the world for treatment there. If you haven't contacted them I would at least let them read your MRI and get their opinion on what procedure they would recommend.

     I have never heard of treatment with Novalis. If you could let me know more about it.

Good Luck picking the right Doctors,
Ellis
Ellis- Age 50- Mississippi
3.2 cm AN Translab w/ BAHA Surgery
@ House Ear Clinic - LA - 01/04/07    Dr. Brackmann, Dr. Hilselberger, Dr. Stefan
Platinum weight in right eye-Dr. Roberts
Right side facial paralysis (slowly getting movements)

mindyandy

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Re: confused in California
« Reply #3 on: December 18, 2007, 07:34:41 pm »
Have you gone to the website cyberknifesupport.org? Try asking the drs there your questions. If you ask them to read your MRI they will be happy to read it and give you their opinion. I understand the whirlwind your under. I'm 30 years old and was diagnosed in Sept. 1.4cm. I hope this helps you.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

OTO

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Re: confused in California
« Reply #4 on: December 18, 2007, 07:35:27 pm »
kelli

I know there have been posts on the forum regarding Kaiser in California with postive experiences.   You might want to use the search tool to see if you can find the message string.

Making the decision between surgery and radiation is a difficult personal decision to make.  Everyone has fears and doubts.   Having a deadline makes it tougher.   All you can do is think through the pros and cons, and make your decision.   Once I chose the treatment I wanted, I felt a kind of resolve come into me, that I would get better.  Use your faith and energy into getting better...   You need support from family or trusted friends to help you along the way too...  

fbarbera

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Re: confused in California
« Reply #5 on: December 20, 2007, 02:30:32 pm »
We all are praying with you for a fantastic and successful outcome to your surgery!!  Best wishes. 

Francesco

kelli

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Re: confused in California
« Reply #6 on: January 06, 2008, 02:15:04 pm »
Thank you all for your replies.  I had the surgery on Dec 20 at Kaiser in Redwood City with Dr. Nutik.  He got 90% of the tumor, the rest I can watch and wait and maybe have radiosurgery in the future.  I am feeling better every day and my headaches are also easing up some.  I am so relieved not to have this A.N. hanging over my head!  Not knowing what to do and constantly changing my mind was making me crazy.  I am so grateful for this group!  I hope everyone has a wonderful new year!
Diagnosed 3cm AN January 2007
Tried holistic treatments for one year. Finally had posterior fossa at Kaiser Redwood City with Dr. Nutik on Dec 20. Followed by cyberknife at Stanford in April for residual tumor.
Thank you Dr. Nutik!

OMG16

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Re: confused in California
« Reply #7 on: January 06, 2008, 02:34:58 pm »
I was just thinking of you last night and wondering how you were doing.  Thank you for the update and I am thrilled to hear you are doing well.  Happy New Year and take care of yourself.  16 :)
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

sgerrard

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Re: confused in California
« Reply #8 on: January 06, 2008, 08:40:19 pm »
Hi Kelli,

It sounds like you are happy to be a postie. Join the club.  ;)

Leaving a little bit for radiation later is becoming more common, it seems; often to reduce facial nerve issues. It has worked out well for several on this forum. I am glad to here you are feeling better and recovering well. Keep it up! Also thanks for updating, it is always good to find out how things turn out. Keep us updated on your progress, and enjoy your new postie status in 2008.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

OTO

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Re: confused in California
« Reply #9 on: January 07, 2008, 10:31:37 pm »
Congratulations on being a Postie.  Take care and recuperate...

leapyrtwins

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Re: confused in California
« Reply #10 on: January 07, 2008, 11:58:19 pm »
Congratulations, fellow postie  ;D

Glad to hear your surgery is over and that you are doing well.
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

 


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