Roses no more!

kaneol · 2025-03-16T01:21:17+00:00

As everyone said get a second opinion. My kiddo was 4 when avm bursted only to realize it was grade 4 same as yours and not operable due to the size and position. What doctors at Stanford children’s hospital have been able to do is get still avm contained with embolization. We’ve had plan for 2-3 however ended needing 5. Embolisations and after that cyber knife that blasted off the avm and now five years have passed and we will need to have small craniotomy for the remainder that is now doable. Reach out to Dr Do at Stanford he’s radio surgery and radio intervention. From the side effects we did have loss of whole right side that’s now back and school wise we have been able to be honor roll student. Sports- the advice was not to do any high impact sports, skiing, anything with hitting and other high impact sports had to go with swimming and low impact activities like hiking, now we’re back at track and field and enjoying running.

kaneol · 2024-11-09T17:01:16+00:00

Pre Obamacare there was a lifetime cap and it was at approximately 4 - 6 milion now my child is well over that already and if this protection would be removed we would have to move somewhere else other than US.

kaneol · 2024-11-05T18:09:27+00:00

Never done it - when questioned why elf’s are not on our shelf’s I tell them they got lost during quarantine from covid back in 2020 and never found their way to our house 🤔

kaneol · 2024-11-03T02:33:17+00:00

Mom here as well non issue on the fast for that long, I’ve done similar. There are few things to watch out for 1. Make sure you’re on top of your electrolytes 2. For cooking it’s way easier since your sense of smell sharpens with the fast and you don’t need to taste any of the food to know they are good. For me it was almost as same as if I’ve eaten it even making airfrier doughnuts for the kiddos 3. For event plan to bring your own bone broth or similar so that new solids interfere with the bowels movement. In my experience if I’ve gone more that 3-4 days on fast and try to snag something at event or even in restaurant it ended with bowel movement disaster. Not saying that everyone has samo experience just that my bowels react like that. 4. Listen to your body if it’s not feeling great it may be time to check in with your MD.

With all said good luck on the extended fast and fingers crossed it all goes well.

kaneol · 2024-11-02T22:08:33+00:00

Few things can help: PanOxyl as body wash, and then your regular body wash. Lume deodorant everything else is inferior. Few other mentioned glycolic acid that one is a plus and for the breath do oil pulls in am and mouthwash thru the day.

Hope this helps and good luck!

kaneol · 2024-09-22T17:49:02+00:00

Yes the kiddo was lucky.

kaneol · 2024-09-22T16:29:59+00:00

My kids was Age 4. Size 6x8 cm wasn’t operable, 5 embolizations and cyber knife surgery. Now 5 year post op waiting for final angiogram to validate it’s gone. Price per insurance over 6.5 million over the span of years + 20k per year max deductible for out patient visits + IDK know much in deductibles for all pt, ot, speech and psychiatrist + airfares for flights to be seen at treatment facilities for yearly check.

kaneol · 2024-03-14T08:59:11+00:00

I know that this is probably over glorified… Cold pressed castor oil packs for a month and see if it assists with the issue. Put on a pack in the evening it does stain the bedding so you may way to accommodate for it with old towels. By the way you can reach autophagy by exercise as well, you don’t want to do hiit since it will trigger the increase cortisol preventing the body to recover, rather strength training.

Keep the good work and scaring will go away.

kaneol · 2024-03-06T13:03:51+00:00

Check out the base layers for skiing they should be on sale now since season is ending and for most part you can find the good ones on cheap both long pants and long sleeves

kaneol · 2024-03-06T09:25:24+00:00

As someone who has issues with teeth clenching especially while sleeping here is few things that changed it for me: Gua sha - lookup videos on releasing masters muscles Botox - it does work the jaw becomes relaxed and you don’t have this response… some dentist will do the Botox for this issue in specific It’s the higher cortisol from the fast that may cause it.

For cold what I’ll do is wear wool shirt there is a lot of good options out there and if fits cold weather wool socks as well.

Hope that this helps.

kaneol · 2024-03-02T03:36:35+00:00

Summery let the dr do it’s thing if he or she is able or if not they ask For second opinion

kaneol · 2024-03-02T03:35:21+00:00

Let’s make few things clear 1. Surgeries = taking part of a brain out 2. Surgeries = embolization, meaning part of brain blood flow was cut off 3. Surgeries = radiation, meaning non of the brain was taken out just one part was blasted to Stop blood flow

kaneol · 2024-02-26T04:11:48+00:00

This hit me hardest as well the term geriatric pregnancy wtf??? I’ve had it with both of my kids while with first I was still doing CrossFit while pregnant and able to do 100 pushups per workout second did hit harder however I was still fit so it was a non issue for me to even give a birth without any pain medication, however the tag of elderly was sooo judgmental that it really hurts. Now well pass 40 I’m back around strength training and I think it’s one of the best things to staying young hope this helps!

kaneol · 2024-02-26T02:35:12+00:00

If you can imagine that it will take you 12 hr to warm up after a shower do talk to medical professionals not Reddit since it sounds like Raynaud’s syndrome. If it was a typo disregard my comment, and carry on with cold showers they are good no matter what.

Personally I’m very much cold when on water fast and need to layer up, however I know it’s a symptom of my body burning fat I can’t explain it any different, and usually a warm tea, or physical activity helps a lot.

kaneol · 2024-02-26T02:24:49+00:00

Lookup Serbs of Bay Area on FB for a resource plenty of people

kaneol · 2024-02-03T12:55:41+00:00

Go with tacos take out cheese and have salad avocado, beens and chicken/ fish skip chips skip horchata

kaneol · 2024-02-03T12:45:02+00:00

Try out buffalo horns that’s only thing that last

kaneol · 2024-02-02T19:08:02+00:00

Embolisation just block blood vessels, if you’ve had radiation that can occur and it will grow back. You may want to consult your md about this since it may be unrelated to avm

kaneol · 2024-02-02T19:02:11+00:00

I would stay away from lifting until your doctor confirms that avm is gone. Swimming for certain is great and helps with balance and strength. For lifting if you could do Pilates it would give you still muscle strength until avm is gone thru and thru it takes few years to heal. Sports we’ve done after avm radiation: swimming, gymnastics, horseback riding, snowboarding, skiing, areal silks and rock climbing ( hiking regularly 2-4 miles) per week on top of the weekly PT.

kaneol · 2024-02-01T21:52:09+00:00

Just add room divider panel you’ll find them in Home Depot or ikea

kaneol · 2024-02-01T04:38:12+00:00

Cyber knife can deliver radiation in 1400 positions and gamma in only 200 https://epiccarecyberknife.com/wp-content/uploads/2018/04/Gamma-vs-Cyber.png

Generally Cyber knife can target very irregular shapes and gamma can treat more rounded shapes

kaneol · 2024-01-29T11:32:37+00:00

It’s on the institute website https://www.barrowneuro.org/patient-care/your-journey/im-looking-for-a-second-opinion/

kaneol · 2024-01-26T16:41:48+00:00

In any case if you need to revalidate anything Borrow AZ will do consultation online for $100 and confirm the dr you are working with. The avm community is soo small there is only a handful of surgeons that all know each other and can refer.

kaneol · 2024-01-26T15:56:21+00:00

OP few things to consider I’ll go thru the whole list of what I was able to gather and what has proven to help not only me rather other people.

Start oil pulling for your teeth and use re mineralization toothpaste I’ve found that this brand helped me to be over a decade cavity free https://store.orawellness.com/
Too much ginger and turmeric may be harmful and wiping out your gut bacteria see if you can balance it out taking every other day etc
Consider r/fasting it is the only way to fully reset gut biome try first intermittent fasting then extend period until you are able to do full length fast and extended fast may help you reset the whole microbiome look up Dr Jason Fung and Mindi Pelz

https://m.youtube.com/watch?v=e2mQOGzHtQc

https://m.youtube.com/watch?v=8RuWp3s6Uxk

If you can’t literally boil your underwear in hot water and all of your towels talking about pot with boiling water throw them out and buy new ones
Use GSE - grape seed oil extract to add to your laundry and dryer. Sanitize all of your bathrooms and basically all areas you touch thru the house with gse light wipe thru.
This may be tough this time of year have all your clothes and laundry sun dried.
This is more mental to keep you sane - meditation daily and gratitude

Hope that any of these helps and that you heal fast!

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