Chiari Online Support Group

Newly Diagnosed - Does everyone have surgery?


#41

Dr. Turtz
Cooper Hospital in Camden


#42

Thank you!! I will definitely be making an appointment with him.


#43

Keep me posted


#44

Hi all, I wanted to let you all know that my mom was diagnosed with Chiari over a year ago after years of not getting answers from her doctors. She recently underwent her second decompression surgery - this time with the patch.
​She loves chatting with people who need help or support. She has a Facebook page to follow her journey and to allow others to contact her with questions or comments. The link is:https://www.facebook.com/groups/1626568674281326/

I hope her story can help you, and please reach out if you would like!


#45

Hello i go to his office in cherry hill on january 4th. Thank you for giving me his name and I’m glad i happened to see your post on here. Hoping i can find out more with him. Merry Christmas and happy new year!!


#46

I’m newly diagnosed, May of 2016. I refuse to have brain surgery. I’ve been on a complete whole foods plant based diet. Also I started running when they told me I shouldn’t do anything too strenuous. I honestly have more good days than bad ones which is so cool now. I was on the couch a lot until diagnosed. I thought it was a brain tumor. When I learned more about Chiari, I.e. it’s not going to kill me, and this midevil brain surgery was the only fix, I decided to figure it out on my own. So far I’m seeing good results. I still have bad days but I get through it… Hope there are others like me??


#47

I had the Chiari surgery coming up on 4 years ago yet continue to have problems that are not necessarily related to Chiari. It is difficult to acknowledge that not everything is related to Chiari! I plateaued 2 years ago and was stuck knowing that something was still wrong with me - other body systems were going wonky and doctors were starting to give me the old psychological-problem-patient stink eye. In consultation with a researcher on the NISE syndrome (neuro-immune sympathethic endocrine syndrome - also neuro-immune connection, gut stuff, etc) I started on a diet. I have never been on a diet before.

A big part of treating neuro-immune-sympathetic endocrine conditions is a diet based much like how a diabetic should eat. I have been on it 3-4 months, lost a few pounds related to former evening snacking on Swedish berries, but am also feeling cognitively more able to the point where my husband has noticed. Note- a cognitive change 3 years after surgery and after having plateaued in my abilities. I have always thought that wonky diets were just that, wonky - and were for people wonky in the head. Lots of reading later on research-based stuff in actual books (i.e. written by a scholarly person not a famous celebrity and published by a reputable printing press!), whole foods eating, the rale against sugar and processed foods makes sense.

With my nervous system not so irritable, I am able to uses therapeutic exercises and techniques that can get at the underlying mechanic issues surrounding my head, neck and shoulders without landing in bed for three days from the irritation of it all. Most excellent.

So, I say “Carry on!” with the diet and see where it takes you. More good days than bad sounds excellent to me. I wish that I had learned all the stuff I have learned over the past 3 years before surgery to see if that would still have taken me on the surgical route. What is done is done.

Good luck in trying new things.


#48

Happy you found something that helps you! Wishing you all the best!


#49

My daughter had surgery in april …she is 7. Some of her symptoms got better after and some did not. She has chronic stomache aches, N/Valley, headaches, muscle fatigue…had to buy a stroller because she can’t walk very far…blurry vision, shaky vision…it’s awful. Every night she’s in pain and can’t sleep. She uses cold packs because she feels hot all over. She can’t go to school so we home school. Since then she had been diagnosed with other things like hypermobility EDS, occipital spikes, long QT, and sleep apnea. It’s specialist after specialist but no relief of her symptoms…not sure if it’s the chiari or something they are missing but would love for her to get some relief. It’s a horrible helpless feeling when a child is begging for you to make it go away and you can’t…


#50

My heart goes out to you and your daughter. Wishing that there was something to do for your daughter, I know it’s hard. My prayers go out to you and your daughter!


#51

HI, I’m a new member too, diagnosed in Dec. A survivor of 54 years and no surgery! I plan on no surgery, so taking very good care of myself theses last 2 months and from now on! My severe Issues started about age 32. I Have been dealing with migraines, head pain, lightheadedness, sleep problems, body pain, gagging, sensitive to smells, for 22 years. Bladder and bowels issues, nystagmus, neck and shoulder pain, weakness, Numbness/tingling, nausea, dizziness for about the last 6 years. I can drive, do housework, take care of my grandkids, light work. Three months ago I did almost everything, because I would push through the pain. I would end up in bed for a few days after, crying in pain. Missed out on many events due to body and head pain or took lots of pain killers in order to participate. Had lots of fatigue. I was given Zomig, but don’t take it due to the side affects. Now that I know what’s wrong, I need to stay healthy and strong. Don’t push myself and do things that trigger my symptoms. Hope this helps, put yourself first, stay healthy. Tina from WI


#52

I’m new to the group and have a 9.5 chiari 1. My neurosugeon would rather I don’t have surgery. He performed an ETV for hydrocephelus and acquduct stenosis Jan 2017

I’m curious what others with distressing symptoms are doing if they have opted not to have surgery.

How are you doing?


#53

Hello deld,

Welcome to the group! At the beginning I was not planning on doing surgery but my symptoms drastically increased months later. Tried everything including changing my diet to gluten free/dairy free diet (helps my nerves), essential oils and a diffuser, heating pads, lots of ice packs (back, face, neck, legs, shoulders), neck brace, soothing songs, meditation, laying flat to help dizziness and breathing difficulties, over the counter pain medication, over the counter nerve vitamins, lots of different pillows (mediflow pillow-which is a water pillow, cervical pillow, tempurpedic cooling pillow), lotions to help leg pain, icy hot to help loosen neck, and more. Ended up doing surgery because my symptoms changed my quality of life. I was in more pain then actually living life. Doing so much better since surgery, which was almost 6 months ago :slight_smile: ! Hope that wasn’t too much of a list! What do you do to reduce pain and how are you?


#54

Hi Ashley,

Our attempts sound similar. I joined this group because I feel very alone
with my Chiari.

I’ve stopped all hign impact activities. my love -tennis is now just fond
memories. I am trying a exercise program called classical stretch and walk
every day.

Ive had to reduce my workload and make every effort to get 8 hours sleep
and rest during the day.

I do notice he claner i eat the better I feel - i too use EO and diffuser
im not on any pain killers etc.

Jan 3 2017 I had brain surgery called ETV for hydroceohelus and aquiduct
stenosis. Lots of complications - didnt heal - got granuloma - another
procedure on feb 23 to clean my scull and then it got infected.

the surgeon hoped the surgery would relieve the chiari… but it didnt.
still 9.5 mm
The surgeon does surgery for chiari but doesnt want to and until april 11 i
felt like id rather work w my limitations and quicky agreed w surgeon. but
there is no help from him on how to manage my condition. a huge disconnect
w this surgeon. my family doc tries but has never dealt w this before.

Fast forward to apri 8th. i got rearended by a bus. Unbelievable how this
affects someone w a chiari. it was bad enough before the accident.
this is when i reached out to this support group…

Regular PT was a disaster. But I went to a unique PT just last friday who
is very insightful and uses different modalities. He hasn’t finished his
assesment but found that my jaw and bones around my sinuses were pulling me
forward and to the right. he did a treatment on these bones/joints. Since
the treatment a lot of my symptoms are getting better. he believes that
over time this could have caused the chiari and the small duct between 3rd
and 4th venticles to narrow.
he suspects that there could be other things pulling at my brain. so more
on this next friday.

what are your symptoms?
hope I wasnt too lengthy! :wink:


#55

the sentence that doesnt make sense should be … eat clean…


#56

My surgeon told me I was a candidate for surgery because the symptoms impacted my life A LOT. Basically I could not function. Get second or third opinions if you need to!


#57

Are you still surgery free? I fee the same way. Just diagnosed last week.


#58

Hi love. I have scheduled my surgery for July 26. 6 weeks from now.
I feel I’d like try the surgery with the hopes of returning to my normal happy self. I have two small children to raise and my head pounds all day almost every day now. I’m tired and I’m grumpy and I’m sick of explaining to people that I have this “head thing”. It’s affected my life and as I am healthy and in good shape now would be the best time as far as recovery is concerned. I’m not even thinking of how it could go wrong or what I will do if it isn’t fixed. I just want to try.


#59

I realize it has been a while since you posted your question but I was hoping you could share an update and if you had surgery. I too have had Lyme for many years and passed it on to both of my daughters while pregnant. In addition to Lyme my 14 yr old has a chiari and syrinx that we have been monitoring for over 2 yrs. She just had an MRI last night as she developed some neurological symptoms. Of course we know Lyme can also cause neuro problems. I am afraid that now that she has become symptomatic because it is impossible to say for sure what is causing it that we will be headed down the the surgery road. Hope you are doing well.


#60

I too have been wondering about you. I hit my one year anniversary and life is pretty amazing. I am still a success story and symptom free. I hope all is well with you and you are feeling good these days.