My wholistic, natural therapeutic approach

[Janie]

Hi Tumbleweed, I don't think you should be too disappointed about your MRI results. - as you say, there is a margen of error.  I would like to share with you what the Danish expert, Dr. Jens Thomsen, told me when I went for a follow-up consultation a few weeks ago. He told me to be thankful to be a "wait and watch" patient who had such manageable symtoms, and who was still maintaining a status quo quality of life! In Denmark the recommendation for the majority of "wait and watch" patients is to postpone treatment (surgery or cyberknife) as long as possible. (In my case, the tumor will not be viewed as necessary to treat unless it grows 10mm outside of the IAC. (Mine is still tiny - 11-12 mm - appr. 3 mm protruding outside the IAC.))  My symtoms are very similar to yours - Dr. Thomsen also said that chances of hearing preservation are very good if the hearing loss is only slight the first few years. In Denmark (yes, we have socialized medicine) the program for treatment is: the first 5 years - one annual MRI. If the tumor doesn't grow (or measure +/- 2mm) in that period of time, the next step is one MRI scan every other year for 6 years. I wasn't able to get any detailed statistics about the size or condition of the "wait and watch" patient group in Denmark. Being a professor, he was quite expectedly very adament in assuring me there was no way my tumor was going to shrink! I asked about spontaneous remissions, and his answer was - it won't happen.  So I kept all my thoughts on wholistic and natural therapies to myself.  I have a 'team' of people helping me with the regime I have chosen for myself - they keep cheering me on - so the bottom line is, trust your intuition - be patient, forget about the AN and focus on everything else that's still in function! Final comment - I feel that the cranio-sakral alleviates my symtoms so much that I am attending a basic course to learn more about how it works. 

[Debbi]

Hi Tumbleweed-

I just had time to read through your posts again and found it fascinating.  Although I opted for surgery, I am a believer in diet and nutrition, and belieive that a healthy diet has helped my recovery.  I hope you'll keep us all updated on your progress.  Thanks for sharing such specific information!

Debbi - eating my veggies!

[Tumbleweed]

In Denmark the recommendation for the majority of "wait and watch" patients is to postpone treatment (surgery or cyberknife) as long as possible. (In my case, the tumor will not be viewed as necessary to treat unless it grows 10mm outside of the IAC. (Mine is still tiny - 11-12 mm - appr. 3 mm protruding outside the IAC.))  My symtoms are very similar to yours - Dr. Thomsen also said that chances of hearing preservation are very good if the hearing loss is only slight the first few years... Final comment - I feel that the cranio-sakral alleviates my symtoms so much that I am attending a basic course to learn more about how it works. 

Thanks for everyone's support. Janie, did you mean to say that the chance of hearing preservation are very good if the hearing loss is only slight within the first few years after the initial onset of symptoms/diagnosis or within the first few years after treatment (CK, GK, FSLR or surgery)? I understand that all treatment protocols risk a degradation of hearing, so please clarify. Thanks!

I'm also fascinated by your success with cranio-sacral therapy. I imagine that your tinnitus may improve with this treatment, but does it also affect your hearing ability and/or balance? I expect not, but would love to know.

Many thanks,
Tumbleweed

[Janie]

Hi Tumbleweed - to clarify - Dr. Thomsen was talking about patients on the "wait and watch" list - if hearing loss was minimal the first few years, he said chances of hearing preservation were good. I've found that my regime of cranio-sakral treatment, Alexander teknik, Qi Gong exercising, running, and cykling all together have helped all my symtoms - both balance and speech discrimination. There is a noticable calming effect immediately after a cranio-sakral treatment session. I have constant "white noise" in my ear - and a sensation of fullness, which also fluctuates - sometimes disappearing for a few hours in the morning, after a QiGong 'workout' or CS treatment. My hearing (right side) is  -10 DB compared to my left ear on the higher frequencies - but actually still in the normal range. I have problems hearing conversation in a large group - but these symtoms were much worse last fall. I can now use my right ear for phone conversations - which wasn't possible before Christmas.  Balance issues - I can train my balance but sudden movements - bending downwards towards the floor when standing up, for example, do throw me off a little. When I'm tired in the evening my balance gets a little "off". Balance has all in all improved drastically since fall. At my last visit (in May) to my own ear doctor, I had a balance test (don't know what its called - but the one where you get hot and cold air in your ears and eye reflexes are measured) - there was a measurable reflex on my right side) I have only had 2 previous tests - one in October and one in January - both preivous tests showed absolutely no reflex on the right side. (I was needless to say enthralled, but my ear doctor didn't think it meant very much - sigh!!) I think my strategi is to do everything I can to keep my quality of life status quo - I would say that the diagnosis has made me appreciate what I have much, much more. Every day is precious to me now.

[Tumbleweed]

Hi, everyone:

Well, I talked with Dr. Chang today about my followup MRI results. He concurs that my tumor has grown faster than the average AN does. He noted that most people focus too much on the change in tumor measurement along a single axis and not on an increase in tumor volume. My tumor grew from 1.9 cm (some doctors measured it to be 1.8 cm) at diagnosis to 2.1 cm at 6-month followup -- at least a 10% increase (in the oblique transverse measurement). But more worrisome to Dr. Chang is that my tumor volume has increased about 60% in the past six months. [To calculate the volume of a tumor, multiply the measurements in centimeters on all 3 axes (oblique transverse x oblique AP x oblique craniocaudal). The resulting figure is the volume of the tumor in cubic centimeters.] And whereas six months ago my tumor was 1 to 2 mm away from my brainstem, it is now touching (but not denting) it. So the longer I wait to get treated, the more I expose important structures like the brainstem to radiation by virtue of it being in ever closer proximity to/involvement with a growing tumor.

I've made my decision that I will have CK treatment. The question is how soon. Dr. Chang said that I can pretty safely wait 2-3 months (after my last MRI in mid-May) to have treatment, so that I may do an important business trip at the end of July without worrying about post-treatment side effects. But considering that the rate of growth of my tumor is above average (which tells me it may be accelerating), I might want to get the treatment before leaving on my trip and just risk having to cancel it if I get too wiped out (from taking Decadron post-CK or from side effects if the tumor swells after getting zapped).

I'll eventually ask Dr. Chang about possible benefits and/or risks of taking anti-angiogenesis supplements in the week or so before treatment and also post-CK. But for now, I've got enough on my plate to digest.

Tumbleweed

[Janie]

Hi Tumbleweed,
Sorry to hear the news - I think the decision to go ahead with CK in your case is a good one - it's a good thing you've been doing so much to keep healthy - I'm sure your overall physical condition at the time of CK influences the outcome - so keep us posted - and good luck - hope you can enjoy the summer in spite of what is ahead for you.

[HeadCase2]

Hi Tumbleweed,
  Your tumor volume calculation would be a very rough estimate, representing the tumor as a cube.  See the http://anausa.org/forum/index.php?topic=1491.0 thread which calculates tumor volume as an ellipsoid (think of it as a flattened sphere).  It's easy to do and will give you a better tumor volume number to work with.  I hope that's helpful.
  Good luck with your CK treatment. 
Regards,
  Rob

[Tumbleweed]

Hi Tumbleweed,
  Your tumor volume calculation would be a very rough estimate, representing the tumor as a cube.  See the http://anausa.org/forum/index.php?topic=1491.0 thread which calculates tumor volume as an ellipsoid (think of it as a flattened sphere).  It's easy to do and will give you a better tumor volume number to work with.  Rob

Thanks a bunch for the formula, Rob! Your logic makes perfect sense. By that calculation, my tumor volume has grown 52% (in the past six months). But the resulting volume figure is a lot smaller than what I came up with using the formula for a cube (which, I agree in retrospect, doesn't make sense).

Best wishes,
Tumbleweed

[kelli]

Hi Tumbleweed,
I was on a similar diet to yours.  For one year after my diagnosis, I tried to heal myself holistically.  I took most of the herbs and vitamins you have been taking.  I also drank 2 gallons of water a day and practiced oil-pulling (ancient practice of detoxification).  I grew my own wheatgrass for juicing. I also practiced yoga, meditation and visualization. I did acupuncture, massage, chiropractic, saw well known healers and tried everything to heal myself naturally.  I've been an organic vegan for 8 years and truly believed that I could heal myself through diet, exercise, visualization, meditation and mind over matter practices.  For one year, my entire life was devoted to healing myself.  I was surprised to see my tumor stayed the exact same size for one year- 3.1cm.  I thought I would see some shrinkage when I had my MRIs, but it didn't shrink.  It also did not grow.  It may not have grown anyway, I just don't know, these tumors are very unpredictable.  I finally decided to have the surgery in December followed by cyberknife at Stanford in April for residual tumor.  I felt very healthy going into surgery and have been doing ok.  I just could not continue with a tumor that size pressing on my brainstem without seeing any results from all that I was doing.  I'm very grateful to western medicine for the treatments that I have had.  I still incorporate a very healthy vegan diet, exercise, yoga, meditation and everything I was doing before into my life post treatment lifestyle. My body feels healthy and I know all of the vitamins and herbs, exercise and meditation helped me to be stronger both physically and emotionally for the medical treatment.
All the best to you,
kelli

[Tumbleweed]

Dear Kelli:

Thank you so much for your very thoughtful response. I hung on every word you wrote. I really feel like I gave my holistic program the best shot I could. I was very disciplined and well-researched in my approach. Still the tumor grew. It sometimes leaves me feeling a little guilty, like I didn't try hard enough, or I overlooked some important detail. "Maybe if I just give it six more months..." I know this is just my mind rebelling against the choice I must now make. A choice which shakes my belief system that nature can heal almost anything if one's approach is scientific and disciplined. I've struggled with feelings of defeat the past week. I'm mostly taking this in stride, but all the "what ifs" won't leave me in peace.

Your post has helped give me the peace and resolve I was seeking. You are the only person I know who also tried a holistic therapeutic approach to treating this specific type of tumor and with the same dedication, scope and intensity as I. Not to say there aren't other people out there who have also tried the same, but you are the only one I'm aware of who has. Hearing your story gives me peace of mind, knowing I did what I could and that trying another six months of the same approach probably wouldn't yield any better results. Now, with my tumor growing, and growing at a relatively fast clip, it is time for me to give western medicine a go.

I, too, am really glad I had a chance to give the natural treatments a try. Otherwise, I would've always wondered if I could've reversed the illness myself but gave up without trying. (And because of the program, I have definitely become healthier in all other regards... besides this one nasty growth.) Now I know that CK is the right path for me. Your message was exactly what I needed to hear, as I was planning on scheduling my CK treatment tomorrow (for sometime in July).

Thank you so much again for your support, Kelli.

Sincerely,
Tumbleweed

[Mickey]

H ithere! I was diognosed Aug. 2007 with approx.1 cm AN. Have been  watch and wait with 1 MRI in Mar. 2008 coming back "stable". I've changed my diet, no caffiene ,green teas ,vitmins, mineral ,herbs, protein drinks, eating healthy, exercise. Next MRI in Sept. 2008. If stable again going to yearly MRI`s Got my fingers crossed with minimal symptoms. Also going thru Neuromonics which seems to be helping my one main sympton, tinnitus. I`m hoping a healthy lifestyle will also make the difference . Gool Luck, Micky

[kelli]

Hi Tumbleweed,
I know how you feel.  I still wonder if there was some essential thing that I left out of my healing program.  I had to surrender that for some reason I had to have medical treatment for this AN.  I tried so hard for an entire year to do everything in my power to heal myself.  My tumor was large and probably took a long time to get to that size. It was risky for me to watch and wait while doing my healing program, but I believe we do have the power to heal ourselves through conscious effort.  I was so very disappointed that my MRIs showed no improvement.  I felt as though I had failed and questioned my belief system.  After being turned down for radiation at several places  because of the size, I knew I had to have the surgery and use all of my knowledge of nutrition and healing throughout the whole process.  It was so hard to go into the surgery knowing I would lose my hearing, which was still normal.  The dr's could not believe my audiogram showed only a 5% loss of hearing.  I was terrified of brain surgery and all of the possible complications.  I surrendered to the fact that I just needed to have it done knowing I would also need follow up radiation because of the location of the tumor.  I had both treatments within 4 months of each other and I am using nutrition, exercise and positive thinking now for my recovery.  The surgery was very hard on my body, I still have balance issues, some double vision and SSD.  Then having cyberknife left me feeling zapped and tired.  Most people do ok with cyberknife, I just think that because my body was still recovering from surgery the radiation made me extra tired.  This whole experience for me has taught me many lessons.  Sometimes things happen to us and we have to do our best and make the most of our situations.  I'm so grateful that modern medicine was able to treat this AN.  It has been a difficult journey, but there have been many gifts in the process.  I feel very blessed to have come through this all and there is light at the end of the tunnel.  Every day gets better and better for me and my body is recovering from the surgery very well.  I continue to keep a positive outlook, exercise 2 hours a day and nourish my body with healthy food and supplements.  I have a wonderful life and I am learning to deal with the SSD and post surgical problems.  I am feeling better and I credit my healthy lifestyle to my continuing recovery.
Everything happens for a reason and this has been a huge learning experience for me.  I'm also grateful to all of the people on this site for their positive encouragement and helpful information.
Wishing you health and happiness as you continue your healing process.
You will be in my thoughts and prayers for a successful CK experience.
All the best,
kelli

[Tumbleweed]

Dear Kelli:

Thank you so much for yet another empathetic post. Hearing your story makes me feel I'm not alone. The emotions you describe and the process you went through leading up to the decision to get conventional treatment are so much like mine.

Even today I find myself questioning my decision to go ahead with CK, rather than try six more months on an adjusted natural program. But my rational mind knows I'm beyond that point and must now put my fate in the hands of doctors.

I called Stanford on Friday (yesterday) and scheduled my CK for the week beginning July 7th. I feel like I'm in a dream state; more accurately, a nightmare. I can't believe this is happening. Somebody wake me!!

I received words of wisdom from a friend of mine last night. He is a melanoma survivor. He said this is a journey I will take one step at a time. In other words, I shouldn't think what I have to do or what I will go through to get to the place I ultimately want to be. That's too big. But I can handle the next hour, the next day and eventually the next week. Soon a month and then a year will go by, and hopefully I will be at peace with the journey taken.

Tumbleweed

[Tumbleweed]

Steve, you wondered a few posts back about Dr. Chang's thoughts on the safety of continuing to take my anti-angiogenic supplements (curcumin, resveratrol, quercetin, etc.). concurrently with CK treatment and afterwards.  I asked one of Dr. Chang's nurse practitioners about this and she said they have found no difference in CK outcome no matter what natural supplements patients took. She said I was free to take whatever I wished, both during the week of treatment and afterwards. I'll also ask Dr. Chang about this when I see him, but this is the premliminary answer.

That said, I plan to stop taking those supplements during the week of my CK treatment and for a few weeks afterwards. Instead, I'll focus on taking herbs and supplements that reduce inflammation and nourish nerves, in the hope that will reduce side effects by nipping tumor swelling in the bud and fortifying any cranial nerves that took a hit from the radiation.

If anyone is interested, I'll post my new (anti-inflammatory/nerve tonic) herbal/supplements program on this thread. But since my anti-angiogenic program of the last six months was a dismal failure, I won't take offense if nobody is interested!

Tumbleweed

[lori67]

Tumbleweed -

Those were very wise words your friend offered you.  I think he's right.  One thing at a time...

And just because your approach might not have gotten rid of your AN, doesn't mean it was a total loss - I'm sure it has kept you much healthier than those of us who are not as conscientious as we should be..    Going into any treatment in the best health possible will certainly help you in the long run.  And besides, you never know if you don't try so at least you won't be able to say "what if I had tried a natural approach first?".

I would be interested in hearing what the new program entails.  Heck, I'm the one who said I'd try boiling eye of newt in a cauldron in my backyard if I thought it would help my facial paralysis!  I'm sure your program will sound much more appetizing that that!

Good luck with your CK.  Lots of people have had excellent results from it and I'm sure you'll be one of them.
Lori