What are /r/chiari's favorite Products & Services?

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i'm glad to hear I made you feel a little better.

as for the lifting weights stuff, think about it like this: any increase/change in CSF pressure might bring on symptoms. When you strain (like when you lift a weight that's too heavy or strain during a bowel movement), you temporarily increase your CSF pressure. Same thing with sneezing, or orgasming theoretically. So in the context of a Chiari Malformation consultation, a doctor might advise you not to do any of these things if you want to completely prevent Chiari symptoms from coming on. Technically speaking, they are correct, but you must consider that there are obviously other downsides to never exercising, sneezing or having sex again (lol).

However, if you can avoid straining during these activities, it'll be a little easier to do them without bringing on a flare up of symptoms. Breath control really helps for this, in my experience.

I'd recommend looking into some low impact exercise options (like an elliptical machine or exercise bike, that sort of thing). You can get some pretty cheap basic stuff (exercise bikes or ellipticals) on Amazon that should help you get your blood flowing. Jogging is free, but a bit higher impact.

this might be TMI but I'd also really recommend a squatty potty. It really does help you avoid straining in the bathroom.

Also ice packs and heating packs! I have this heating pad collar type thing that's really helped me when my neck starts spasming.

https://www.amazon.com/Sunbeam-Contouring-Shoulder-Settings-Auto-Off/dp/B0753PSVY7

more than anything, just remember to never ever ever give up. it will get better, if you make it so.

Here are a few things that have helped me. Much of my pain is due to muscle tension in my head, neck, shoulders, upper back, and jaw. Understand, though, that what helps one person may not help another.

• If you have the resources, locate a massage therapist knowledgeable in the neuromuscular system. Ideally, get a massage on a consistent (weekly or bi-weekly) basis. Treating the pain consistently, from my experiences, is more beneficial than treating on an as-needed basis. knock out the tension before the pain starts.

• Tiger Balm and a large heating pad is my secret sauce. I literally have tons of Tiger Balm in every room of the house.

• Look into trying out a TENS unit. It’s a device that sends electric pulses to electrode pads placed on your body. Using this with a heating pad is great too. You can find TENS units on Amazon for about $30.

• Buy a trigger point massager from Body Back. They’re great. Trigger Point Massager

I hope some of this helps you out. Wish you the best.

I would suggest you try lying on an acupressure pillow (you can find them on Amazon). I would guess that your anxiety lead you to tense up the muscles around the back of your head, and that is interacting with Chiari to make your symptoms worse. If you really want to get good mileage from the acupressure pillow, shave your head first. An acupressure pillow is great for helping me fall asleep. I would suggest this design: https://www.amazon.com/Acupressure-Pillow-Acupuncture-Relief-Treatment/dp/B01HDT56BI/

I recently switched to these https://www.amazon.com/gp/product/B08F4VJNCF/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

They wrap around a little and are pretty dark. They can be a little snug, especially if I'm having a headache, but are still getting broken in.

I slept at an incline. This pillow is similar to the one I bought. wedge pillow

I've tried so many pillows in the last two years and this is the one that has helped me the most. It's adjustable, so you can take some filling out if you want. It's helped me a lot with the morning pressure headaches and neck pain.

https://www.amazon.com/Cosy-House-Collection-Adjustable-Removable/dp/B07DP3RYQH

I went through about a dozen pillows from Amazon and landed on this one. It's a good firmness without being uncomfortable, to me at least.

https://www.amazon.com/dp/B08J2B8G8Z?ref=ppx_pop_mob_ap_share

I have a therapeutica pillow - it’s awesome. It’s made for rolling around and sleeping on your side or back. Kinda awkward at first, but I couldn’t imagine any other pillow now. I have one at my moms house, one at my in-laws.. Therapeutica Pillow, Firm Orthopedic Support, Back or Side Sleeping, Average https://www.amazon.com/dp/B015N45KDY/ref=cm_sw_r_cp_api_glt_i_05V0AEQDY5BAM54KJ8Z6

We just got home from NY Presbyterian today. My 17yo daughter had her decompression on Monday morning. Dr. Greenfield and his team have done over 600 decompressions. I can speak from our experience as a parent that has extensively researched Chiari since my daughters diagnosis that Dr Greenfield and his team are definitely experts. Additionally the PICU at NYP is amazing and are skilled at treating post-op Chiari. All you can do is ask a ton of questions most of which you should know the answer to and then your gut will tell you the rest. We visited CHOP in Philly first and just didn’t get the right vibe. In comparison the NS there had only performed 100 so far. When we met with Dr Greenfield within 5 minutes I knew from his manner and his experience and the way he talked to my daughter that he was the right one. I am not quite ready yet to debrief the full experience as we are still going thru it. This is a serious surgery and my daughter is in extreme pain still so all of our attention is on managing it right now. But if I had to do this go around again I would say make sure you are very confident with your surgeon before undertaking this big decision. Dr Greenfield mentioned he has had to correct a number of incorrectly done surgeries.

I educated my self by reading Conquer Chiari:

Conquer Chiari: A Patient's Guide to the Chiari Malformation (2nd Edition) https://www.amazon.com/dp/B096TJLFY2/ref=cm_sw_r_cp_api_glt_i_K12CDVARAQVB8AK85K8F

The book is extremely helpful in understanding this disease.

Any questions, I am happy to answer.

This is a great discussion and you are getting some good advice here. In addition to most of what was said, I have found this book to be a great resource for understanding the condition...

Conquer Chiari

Education is key as you will need to be your own advocate with the medical community. My 17yo daughter has been suffering with many of the same symptoms you are expressing, minus the spinal pain (no syrinx) for 2 years. It has been devastating to watch her become more and more impacted especially in her senior year of high school. Her mother and I, and her as well, persisted and finally got a diagnosis last month. Needless to say we have crash-coursed everything there is to know about Chiari! She is now scheduled for surgery 2/14.

u/keepitlowkey12 - why would you have to stop being an EMT? My daughter was just certified 2 months ago and is working with the local squad for a short leave of absence...as soon as you are ready you should be able to resume normal activity, just no sports/strenuous ones for 3 months post-op...curious why your doc said that.

I found sleeping on my side was the best (I still sleep on my side most of the time since the surgery) but you need a good pillow. Regular pillows suck, if you don't have something like this I'd recommend it. https://www.amazon.com/dp/B08J2B8G8Z?ref=ppx_pop_mob_ap_share

https://smile.amazon.com/dp/B08J2B8G8Z/ref=cm_sw_r_apan_glt_i_G1WEV3GAZ0Y006PHY817?_encoding=UTF8&psc=1

I've been using this one for a few months. It's a little on the firm side but that should improve with wear. I had a similar pillow before (same shape) that I used for a good decade (I was decompressed 20 years ago). That one literally started to disintegrate so I had to replace it. I tried about 4 or 5 pillows from Amazon until I got the one above. It's not perfect but it's the best one I've tried so far.

I was really on the fence about my neurosurgeon wanting to electrocauterize the herniated tonsils. According to my second opinion neurosurgeon the cerebellum is home to 70% of the brain’s neurons. I didnt want to take the risk of waking up with brain fog/nystagmus, etc. I hear you. I’m two days out of decompression and feel great, no brain fog. I think I’m naturally a little dyslexic but it has never been a nuisance enough to affect my daily life. After a lot of research myself, there are no significant studies that show brain dog will appear or go away. Both my neurosurgeons and neurologist said the most likely symptom to decrease the Valsalva headaches (ones with exertion). Hope this helps. Order this book if you want a bigger better picture of chiari as a whole https://www.amazon.com/Conquer-Chiari-Patients-Guide-Malformation/dp/B096TJLFY2/ref=nodl_#immersive-view_1639930352658

100% agreed for the neurosurgeon. Will depend a bit if you have a syrinx too - that’s what supposedly causes the neurological symptoms. According to my neurosurgeon the cerebellum and patch they placed in is very close to the nausea center. Neurologists will analyze your headaches, neurosurgeons will make suggestions based on if it’s affecting the quality of your life. Obviously stress makes everything worse, but if you can remember times when you were’t too stressed and hammer that home then they might hear you differently. Chiari is an extremely difficult diagnosis to have, there’s lots of ambiguity between neurologist and neurosurgeons, because research is still being done. I highly recommend this book if you like to wrap your head around things - it puts the process in plain context and how to navigate and explain/talk to your doctors. Never thought i’d be my own self health advocate at 25 but here were are. The more knowledge the most ability to make the best decisions for your situation. https://www.amazon.com/Conquer-Chiari-Patients-Guide-Malformation/dp/B096TJLFY2/ref=nodl_#

Did you ever have an abdominal/thoracic MRI to determine if you have a syrinx/syringomyelia? Could explain your other symptoms. If your daily life is being impacted this much, it might be a good idea to talk a new doctor, unfortunately neurosurgeon’s opinions vary greatly when it comes to chiari, especially when they aren’t fully aware of it’s affects. I highly recommend a book by Conquer Chiari, it might help puzzle together a lot of your symptoms and how you’re feeling. conquer chiari book

Quality ice packs... the gel kind, if you have longer hair a good detangler brush, quality neck pillow and regular pillows, comfy pants.

The best ice packs

I suggest you try a microwaveable neck wrap such as https://www.amazon.com/Sunny-Bay-Hands-Free-Unscented-Heating/dp/B07D4ZBXZX/?pldnSite=1 Nice to fall asleep on. Helps relieve tension in the neck muscles, which I personally suspect is a big part of how Chiari causes symptoms.

>Mine is like all of the muscles from my shoulders and up into the base of my skull are rock hard and never relax.

Maybe try self-massage? See this book

https://www.amazon.com/Trigger-Point-Therapy-Workbook-Self-Treatment/dp/1608824942/

I also like this cushion

https://smile.amazon.com/Acupuncture-Massage-Acupressure-Headache-Circulation/dp/B08979Z6TW/

I've found that massaging my sternocleidomastoid muscle tends to help a lot with dizziness. There are some arteries in the area so you have to be careful, don't wanna give yourself a stroke. This book has instructions on doing it safely:

https://www.amazon.com/Trigger-Point-Therapy-Workbook-Self-Treatment/dp/1608824942/

My wife has Type 1 as well and she has gone through more pillows than I can count. What we have found that work so far is she alternates between this Tempur-Pedic pillow with cooling pad in it and a water pillow. Sadly she still has issues, she also found this neck pillow really helps when she is sitting on the couch reading or watching TV. https://www.amazon.com/dp/B00GXAKQMI/ref=cm_sw_r_cp_apa_i_Z4tKFbVJS5VZS?_encoding=UTF8&psc=1

>Even a minor auto accident can cause whiplash, which typically results from sudden and extreme overstretch- ing of muscles of the chest, upper back, and the front and back of the neck. Whiplash can produce not only widespread pain in the head, neck, chest, and upper back, but also numbness, tingling, and swelling in the hands and fingers. Without appropriate treatment of myofascial trigger points in the injured muscles, the effects of whip- lash frequently last for months and can persist for years.
>
>Two sets of muscles of the front of the neck, the sternocleidomastoids and the scalenes, can be responsible for many of the symptoms of whiplash. Other muscles often involved are the trapezius, levator scapulae, pectoralis major and minor, sternalis, certain jaw muscles, deep cervical muscles of the anterior spine, and spinal muscles of the posterior neck and upper back.

From The Trigger Point Therapy Workbook

Maybe try visiting a massage therapist and get them to massage those muscles and see if it helps. Or buy the book and do it yourself, it has instructions.

Have you tried sleeping on a soft and flat pillow? I have a down pillow that isn't too lofty (could be higher imo) and it doesn't cause this issue but is still supportive enough when I ball it up to sleep in my side. This is the Amazon link.