Holistic approach with CK

[Palace]

Hello


I'm not that familar with holistic meds.  I did speak with the surgeon, a holistic MD and will see the rad-therapist soon.  I think I will be having the CK approach within this month.  Perhaps I will incorporate holistic pills/help with the Western way.  I'm very allergic to sterois so, I wonder how doctors would treat any post-CK swelling, etc.  I'm getting quite educated on this foreum.



Thank you,



Palace

[Palace]

Hello:


I have done much reading in the past three-plus months, since my diagnosis.......online and off.  Since I had the A-shock and spent the night in emergency when I took the two days of heavy steroids, I'm so interested what people are given to take after having CK.  I was supposed to take steroids for ten days and that was before, my MRI diagnosis.  (you know, to try and save some hearing; it wouldn't have helped anyway)  I have two large and entergetic Golden Retriever dogs (littermates) and I hope they don't help me with my "balance" after CK.  Are you supposed to lay there and "sort-of" stagger to the bathroom, when need-be?  I have gathered much information to *opt* for CK and not the traditional surgery but, any in-put from you kind people, would be appreciated.  I will know so much more after a consultation with the radiation therapist.  (the surgeon consultation was well over a week ago, now)  Right now, I'm in the "stress-and-think" stage.



Regards,



Palace

[Sue]

Hi Palace,

Others much more knowledgeable will no doubt help out with some answers for you. Are you having balance problems now?  Some do, and some don't.  Having CK does not automatically produce balance problems. I had GK and I got around just fine after treatment, but I didn't have balance problems before my treatment. Several people who have had CK told us that they went out afterwards for lunch and shopping!  I did have steroids for a week after to help with swelling. I have no idea what would have happened if I did not have the steroids, but some people have had radiation and were not given steroids. I do know, however, that I would have slept better!  Steroid insomnia is the pitts!! 

Sue in Vancouver

[marystro]

I did not have balance issue before CK nor after.  I took a small steriod pill that they gave me after each CK treatment which I had a total of 3.  Not much side effects now except higher level of tinnitus which I had some before and small, very small facial sensations on and off which I also had between dx and treatment.

I am one of those who went shopping, sightseeing, playing basketball with my son after each day of treatment.  And the treatment was a breeze.  First day they fit you with a soft mesh mask.  Then the following 3 - 5 days depending what dosage your doctors plan for you, you just lay there with the soft mask on, your street clothes, listen to music (bring your favorite CDs if you wish) and get up after 30 minutes and go your merry way.  You may want someone to drive just in case.  In mhy case, I did not have any side effect and could have driven but my husband insisted to drive.

Hope this helps,
Mary

[Palace]

Hi there:


I cannot thank you enough and I feel somewhat better already, just getting some information from my post on the forum.  You are appreciated from the bottom of my heart.  I was feeling rather "down" and now, I'm encouraged.

My balance is good so far considering I had five foot surgeries on the right foot.  I tore out ligaments on a dog hike in the mountains.  I was supposed to have only one surgery but, ended up with four more because, I was severly allergic to Vicryl sutures that the foot surgeon, used!  (the cells went crazy)  It is difficult to tell if the slight off balance is due to AN or a painful and partly numb right foot.

I have had 18 major surgeries in the past 24 years and one more as a really young girl.  (all not AN related)  I felt like I wanted so much to never have another surgery of any type and I've only had a few months since my last surgery so, not much time to heal mentally and physically in the past.  I'm no stranger to pain however, I'm hoping to beat this thing soon.  I was diagnosed about four months ago but, I'm going through the *red-tape* with everything, including my insurance process.

I'm taking 50 pills a day after speaking with both a person that is more than "just knowledgable" at a health food store and spoke with a holistic MD, last night.  I know I probably should stop those pills now that I'm aware that I can't beat this holistically.  (might be dangerous before the CK)  Just because they are over-the-counter pills it doesn't mean it is safe for me with (only hours old decision) path I'm going very soon.  My 22mm AN is very loud.  (heavy metal band in the right ear all the time)

I'm stressed-out, maxed-out and feeling somewhat better after hearing from two people.



Thank you so very much,



Palace

[Palace]

Hello Again,


I forgot to mention that the CD's is a "two-thumbs-up" and will bring them to the CK appointment  You got me to eat!  I couldn't even think of eating these days.  It is over-whelming!  Stanford hasn't called me with the appointment series, just yet.  (tongue somewhat numb, cheek going numb and sore)  I have very little hearing left from this AN, already.  It was very scary, the A-shock with my throat almost closed from the Pred. (when I had to spend the night in ER)  It is a long drive out of the mountains, to the emergency.  Thank you for any info and the support.



Sincerely,



Palace

[SuzeAN]

Hi,
I had CK for my 2.5 cm AN and was never given anything for it after treatment.  I have had those head "pangs" very infrequently so I take a Motrin.  My doctor recommend motrin right after CK,  he said he would wait and see if I needed to take any steroids.  So far balance has been ok, sometimes in the morning I may step out of line or sideswipe the doorway or couch as I am walking by...nothing too serious.  But I do also have the tinitus in my ear, that static sound like after you've been to a loud rock concert with out ear plugs or NHRA drag races.

I have read from Jamie on older posts here something about not taking any supplements before CK, so you may want to look into that.

Cheers,
Sue (Las Vegas)

[Chris]

Hi,
I have heard often about people taking steroids after treatment. Is that for pain?
Regards
Chris

[krbonner]

Hi,
I have heard often about people taking steroids after treatment. Is that for pain?
Regards
Chris

I was on steriods post-op for about 4 days to help control swelling.

Katie

[Palace]

Hello Fellow Members:


I quit the holistic meds last night as, a pre-caution to the CK procedure coming up.  I will tell you a few of the over-the-counter pills I was taking as a recommendation to build up my immune system and stay stronger.  I did take, Sam-E in the mornings just after my news of AN.  I was taking L-Proline, (L-Lysine) EGCg, (Green Tea Extract) Turmeric force, (considered protective botanical for maintaining healthy inflammation response, hear, cardiovascular and liver function) Ginkgo Biloba, (for the ringing in the ear) calcium citrate caps, Zyflamend, milk thistle, Host Defense, (the ultimate immune enhancing mushroom complex) and Kyolic.  (aged garlic extract)  I have Holy Basil which I haven't used yet.  It supports normal cortisol, blood sugar and insulin metabolism.  It protects healthy cells from radiation damage and elevates the spirit.  I need to ask the two doctors that will be working on me if the Holy Basil med will be OK to take soon after the CK procedure.  I thought you might be interested in what pills I was taking prior to CK.  My first possible radiation date is the 18th and the Cat-S. would be a couple days before the Rad series of three days.



Palace

[Palace]

Dear People of this forum:


Make sure you *always* clear any "over-the-counter" medication with your doctor.  Just because we can easily get what might sound good, right off the shelf........it really doesn't mean it's safe.  (and especially for us AN patients who are having health issues. as well)



Be Careful,



Palace

[Palace]

Hey there folks:


On the subject of holistic life-styles, I grew up in LA and had a few of my surgeries there.  (not holistic life at all)  Most of my professional medical career was in Los Angeles.  I had my choice of really good doctors when I had surgeries in LA.  Here is my question which I was wondering.  Did any of you think that chemicals that you used at one time or for a duration, could contribute to the AN?  I read that it can in some cases.  I'm sure we all think of where did we get this cell to grow.


I just was thinking about my exposure to mercury (and many other serious chemicals) when I first began into the dental field.  I breathed and handled many different chemicals in my life.  I took a Paralegal course (specializing in Trusts, Deeds, Wills and Estates)  but, never used that field.  I was a private secretary at one time, as well. (two rather safe jobs)   My concern here is that I also did licensed manicuring.  (used awful chemicals there as well)  I chose the medical field for my career.  I was wondering about my AN being a result of chemicals.  I believe that unilateral AN is possibly not inherrited but, if you have it on two sides it is maybe the case. 

I think we all could use good food and healthy life-style living.  I just want to keep from anymore surprises to grow in my body.

Thank you for any answers to my questions.



Palace

[Chris]

Hi Palace,

I guess we have all wondered what may have caused this but I am not sure we will ever find the answer. Apart from mercury tooth fillings when I was younger I have not been exposed to lots of chemicals as far as I know, apart from the everyday ones we don't know about. I heard somewhere, on this site I think, it may be related to things that you are introduced to up to your late teens when your brain is still developing. Maybe someone with knowledge can answer this? I did smoke an illegal substance when I was younger but I am sure  everyone here will not associate with that.
Have you heard of Missing Link & Colodial? Minerals. A cancer survivor put me onto those. I must admit I am quite slack and suspicious of taking something that doesn't make me feel better within a couple of weeks lol. What I desperately need is energy!
Regards
Chris

[Chris]

Hi Katie,

Does everyone go on a course of steroids? It was never discussed with me and my AN swelled more than they expected causing a temporary increase in symptoms.

Regards
Chris

[krbonner]

Hi Katie,

Does everyone go on a course of steroids? It was never discussed with me and my AN swelled more than they expected causing a temporary increase in symptoms.

Regards
Chris

I have no idea.  The meds weren't something I discussed with the doctors ahead of time, and I wasn't feeling up to questioning it when I was in recovery.     By the time I did think to ask about it, I was being tapered off of the steriods already.  I was done with them before I left the hospital.

Katie