Chiari Online Support Group

Hoping to change this with diet and exercise


#21

Hi Jenna !
Glad You wrote
I am On Facebook ! And I have Prayer pages there too having to do with Chiari. Maybe we can each other . Not sure about posting numbers either. Maybe we can mail each other ?
And I’m not sure what your being told by your NS ? I just went to one here in Grand junction. Who Has done I know 11 Chiari surgeries. One was my Neighbor. Who is my Daughters age. And He told me that the Surgery was only giving me a 50% chance that it will Help any of my Symptoms …at all !! Now. Each person is very different… in my case I do Not have a Sack of fluid. For the lack of the proper word I have FORGOTTEN ! Lol… I can’t stand forgetting words ! It gets on my nerves !..
But you know what what I mean probably…
Anyhow. Surgery is NOT A CURE for your Pain…I was told as Many people I know with Chiari That Even AFTER SURGERY I COULD GET WORSE AND IT MAY NOT GET BETTER. I hate to be the barer of bad news… but…I have to to tell you …
Don’t listen to anyone who says SURGERY IS GONNA MAKE IT ALL GO AWAY ! Cause that’s NOT TRUE !
Ask the moderator here . They will tell you…
I hop you will go onto Facebook. Please there are MANY PEOPLE ON THERE with CHIARI…seriously…Many…That can Help Give you More Information…I didn’t know anyone formawhile …and it SUCKED !.. but when you finally do. You’ll find friends who will be able to help answer some questions …That Frankly the DOCTORS Can’t answer…
I’m so sorry to be a Bummer…
I’m HAPPY you wrote me back…
I Hope you go on Facebook…you’ll find a lot support…
I’m NormaJean fyffe on there ok…God Bless You…I’ll be looking for you…lady…
Keep your head up Fighter ! You can do this !!!
Your A SURVIVOR !
Your Chiari Sister NormaJen


#22

Jenna One more Thing…
Not sure how you will fell about this…however…
I went and got my Medical Marijuana license. Now hear me out…ok…there is a Substance that is NOT T.H.C it’s called C.B.D it does NOT get one high . But it Does help the help…so much so that When I first used it.I swore it was like going to the ER and getting two shots of Morphine ! Except I didn’t have to get an IV ! …so It’s Just Information…My License cost me about $150 and I walked out that day with a temporary license .you can go online and find out how to get one or heck go in anyone of the stores. I’m sure they will be more than willing to tell you a doctors name…if ya need one…talk later…Your in My Prayers…
NormaJean


#23

Your Dr. is right. Diet will NEVER fix Chiari’s. Goodness! I grew up eating organilc non-GMO, etc. etc before it was even in vogue - and was a national-class marathoner and 10K runner - and then along came Chiari’s in 2002, Boom! Living in a rather medically-ignorant state at the time, I went misdiagnosed for 10 years. So, eating every kind of fantastic diet under the sun was attempted - and failed. It wasn’t until Chiari’s turned me nearly brain-dead and physically a vegetable - I moved to NC, where in 3 weeks I was diagnosed with Chiari’s - and found the BEST neurosurgeon right there in the state!!! (definitely a “God Thing” I have to say!) Diet will not decompress a compressed brain. It has to be surgery. Since then, I no longer dare do running - as I was told to avoid jarring activity. I’ve taken up racewalking - however - and am turning in some of the best times in the nation. Because I went so long - 10 years - misdiagnosed, however… permanent brain stem damage occurred. The longer you wait to have decompression, the greater chance of permanent damage to the CNS.


#24

Sorry, I do not use Facebook. I know all of what you just posted as well, just didn’t word it like that to avoid being so negative. Thanks for your advice. Also, I don’t use drugs. Not even pot. I am not in any actual pain per say so using a pain med doesn’t make any sense.


#25

Thank you


#26

I have to say that 6 months post op decompression and I am still pain and symptom free. There are success stories out there and so far I am one of them. While I am not cured, I am a thousand fold better than I was exactly a year ago. Mine happened all so fast. Diagnosis last January, 2 syrinx showed up by August, surgery end of October and boy did my life change for the better after surgery. I just got back from a 6 mile trail run. We each have our own journey and story. I think it so important to give people hope, not just negativity. I left the facebook groups because the people there were so very cruel.


#27

6 mile trail run 6 months post op!!! Whoo hoo! You must feel amazing?! I appreciate your story more and more. Keep at it. I have a question; I refused to have/pay for an MRI every year but there are symptoms that come with the development of a syrinx correct? And they mentioned removing my top cervical vertebrae along with the rest of the chiari surgery. Is this what you had done?


#28

Wow ! Your Head doesn’t Hurt !? You are VERY BLESSED THEN !..
that Is Awesome !.
I was Only Trying To Help.
Curious what Tennis shoes do you Reccomend for Running ? I know Odd Question .lol. But I just don’t know which brand is going to be Good.
Hope you have a Great Day Jenna…


#29

I would go to a running store or walking store that can see your gait and fit you properly. Good shoes are important. I wear Mizuno for street running and Pearl Izumi for trail running.


#30

Yes, the syrinx were the turning point for me in having the surgery. I could feel them. I had these weird spots in my back. One up near my neck and one in the middle of my back. They were soft bulges that were very painful. The one in the middle of my back - made me want someone to actually break my back and put my spine back in place. My spine started to go crooked there and the pressure in that spot was insane My surgery consisted of decompression - the surgeon shaved a small portion of my skull, shaved part of C1and C2, cauterized my “tonsils” and then took a piece of my scalp for the durapatch. I do feel pretty darned amazing. My neck still has occasional residual stiffness, but I have been seeing a physical therapist which has made a big difference. She specializes in head/neck issues and injuries and is familiar with Chiari.


#31

Wow- That would make me do the surgery as well. Thanks for sharing all of this.


#32

I agree with runnergirl, although in Cedaredge you aren’t at all close to a running store. Not even sure there’s one in Junction. My mom lives close to Cedaredge-
I use Brooks. Because that’s what my whole family uses. Maybe REI in Junction could help?
And I’m sorry to be short with you on the last post. I had posted something I felt was good and got 2 messages back about how bad this all is, which never helps. I can’t explain the “pain” really. It’s not something I can take a pain med for or use a numbing salve like the CBD oil. I tried all of that last year. My head is pounding because the spinal fluid is being blocked. It’s something I have to breathe through. That’s where the Reiki and Tai Chi have come to be of great use. I’m literally going with the flow! I take great care in listening to my body and taking it easy when doing certain things. I’ve been studying Chinese medicine and the way they approach their personnel health is so different than the western world. But there is definitely a place for our approach to medicine as well. Surgery is absolutely appropriate at times and I’m thankful that I have that option when and if the time comes.
This is just my way of solving this. My journey. My ideas based on what makes sense to me.
We are all so different. Just take the bits and pieces of what speaks to you and use that to make your life what you want it to be


#33

Okay. I’m miserable. I’m going to Aurora to schedule my surgery. The pressure is worsening and it’s more frequent. My vision is blurry on the real bad days and I can’t turn my head without feeling like I’m going to pass out. It’s really affecting the lives of my family and that’s the worst part.
So, how do I plan for this? I need people to come and stay with me for 3 or more weeks? When can I drive again? Cook again? Walk?


#34

@Jennasweb I am so so sorry you are going through this :frowning: .Going through surgery I felt the same way, scared out of my mind and not knowing the results was terrifying. Especially with having kids. It was definitely worth it for me because my life is positively changing each and every day as I heal. I call it the “the new normal”. It is up to you and I wish you the best of luck on what you decide. The diet is helping me recover faster and I hope your diet helps you too :slight_smile: ! Yes, I have seen lots of improvements compared to what I was like before. I am aware of things, memory is better, understand more, clear minded, walk better, pressure is reducing, headaches are so much better, and I could list more. Good luck to you whichever path you decide to do! Having strength within yourself and positive thinking helps!!


#35

You will need help for a good 3-4 weeks after. Have your friends put together a Meal Train. It is a great website. If you can have people stay and help that is wonderful. My mom came and stayed for 3 weeks. My co-workers came together and bought a housekeeping service for 3 months for me. She came once per week after my mom left. Driving was 3 months out for me, but I had complications that are not typical due to an allergic reaction to the anesthesia. I am allergic to most anesthesia. I am just over 6 months out from my surgery and my quality of life is so much better than it was! I had a 10 mile run last weekend. My surgery team included a nutritionist that prepped me for surgery and had a nutritional plan for post surgery that was great and it did help. I was up an walking within 24 hours of surgery and taking small walks every single day, several times a day right away. They encourage it and it is important to move to help healing. I found a wedge pillow super helpful, heat packs and ice packs, lots and lots of water to drink to stay super hydrated, extra anti nausea medicine. I also used a memory foam neck pillow to give extra support when I slept. I started PT 4 weeks after surgery. Be sure to get a referral for PT to help your neck muscles recover. Surgery was the best decision I made and I was terrified - absolutely terrified. Hope all goes well for you. Please keep us posted.


#36

Surgery is July 26th! I can’t remember how it feels to not have a headache. My brain is so slow lately. I am hoping all of this will go away and I can really enjoy life, instead of pretending - although I was a master of that.
I have people coming for a total of 5 weeks and then the husband can also be here as needed. I will leave my two kiddos with my sister the first week. I feel that will be the hardest part of it all is leaving them. I appreciate all the advice here girls! Memory foam pillow, housekeeping, remembering to walk often, PT and nutritionist, and the meal train- Great! Anything work as far as a salve for the incision site? Or is it best to leave it open to the air? Essential oil? How bad is the pain? I am an hour away from the neurosurgeon and hospital so I want to make sure I have the prescriptions beforehand.


#37

I would not touch the incision for a while. Just let it heal naturally. I was stitched with dissolvable stitches. After those were gone and I got the word that the incision was tightly healed I used a TCH/CBD salve that really helped. I am 2 hours from my surgeon. Make sure you have pillows for the car ride home. Good luck to you and I will be thinking about you. I just had my 6 month follow up and got the green light to live fully - run as much as I want, lift weights with no restrictions, even ride roller coasters. I have healed well and CSF flow is as it should be. I am still symptom free and don’t need to go back to see Dr. Chowdhary until next year.


#38

To answer your question on pain - it is brutal the first 7-10 days. At least it was for me and I have a very high tolerance. I didn’t have a headache perse, but the worst case of whiplash imagineable. Brushing teeth was hard! Ask for lots of anti nausea meds, stool softeners, drink lots of water and it will get better.


#39

That’s wonderful!!! I hope you are able to live a beautiful life now. You have become my inspiration here. I recently read an article on BBC about how people recover quicker when they write about their pain so this forum must be helping so many in ways we didn’t even know! Life is so good-
My surgeon is also pretty far away so I will make sure I have all the meds I need beforehand.


#40

I wrote every single day in a journal book. I used a paper journal and chronicled my days starting the week before my surgery and still use it daily. I wrote down everything - what I was feeling physically and emotionally. Who came to visit, what I did during the day, what I wanted to accomplish, what I ate, how much water I drank, what book I was reading, if I played a game, colored, watched TV, etc. I made little tiny to do lists, etc. 7 months later I just started journal #2. It is so interesting to go back through it and it was so helpful to have during my 6 month Post Op appointment. I carry it with me everywhere. :slight_smile: