Chiari Online Support Group

Newly Diagnosed - Does everyone have surgery?


I quit last Thursday. I gave them the option of 2 weeks or more to transition my Kindergartners but they had me out by the next day. I was doing the same thing as every other teacher and yet the Principal would be in my room about 5 times a day - telling me how to stand, where to stand with them in line, etc… I was driving 1 hour each way and Thursday morning I was so tired (this was after a few times driving home and having trouble staying awake) that I just made my decision.

I will find something else. Something where caring about your class and doing things right is acceptable and not being in constant fear like every other teacher in the school. I already have 2 leads. Plus, I have 3 MRI’s, and X-Ray, carpel tunnel to look into and I have to go back to PT for my TMJ.

At least I got to go boating this weekend! I do miss my class though!


My heart goes out to you. You are a very strong teacher and care about your students. It is a shame that in the educational profession your not supported and given the understanding of your illness. My daughter told her school advisor she was having problems with her EDS issues and is very supported. You will find a teaching job that is deserving of your talents, teaching ability, and one who cares about their students. The jobs are out there, so please keep looking for that school where you will be appreciated. Believe me, the world needs you teachers and a good one is hard to come by.
I will have you in my thoughts and prayers.
Good luck too with your upcoming medical tests and evulations. Let us know.
Thank you for being a great teacher who cares.


Thank you so much. I didn’t realize till later that the parents liked and trusted me - I only had the Principal to go by and that was anything but helpful.

It sounds like you and your daughter (and family) are dealing with this together. We made that decision when we first found about all the things wrong with me. Of course, that means if 2 out rule me, then I have to deal with that. I just wish it was so hard on our families.

Thank you for the kind words. I needed them!


My ENT couldn’t believe I hadn’t been swimming because I cannot get rid of my ear infection. I am not sure why no one has put all of this together before.


I know what my family has had to overcome with my health issues. It is very hard to make adjustments. My poor husband has had to come to terms with I can’t be fixed by him, so he has really had a hard time dealing. He comes on here sometimes to get and give feed back. He goes with me to my appointments and is the best advocate and has educated himself almost as much as I have. He sees me at my worst and best. We’ve been married almost 40 years and he still makes me laugh and lights up my worse days.
Our girls deal with it and make time to visit me even though they both are very busy. My son in law is going to school to be a physicians assistant, so I’m really bad to get him to myself and discuss his knowledge of the brain, spinal, and treatments.
Sounds like your parents are very upset your not there at school teaching their kids. I’m really sorry this happened. People really lack the knowledge about chiarians other issues that complicate us. You deserve a place to work where you feel you can contribute to your kids and be appreciated. I’ll be praying for you.
Have fun at the lake, but don’t hit your head.


I know when I need to take a shower I put ear plug in my ear so that the water doesn’t go in my ears to make it worse, also don’t use q-tips to clean out the ears I find it makes it worse


Have you tried putting acholol on a q tip and cleaning your ear? Even hydrogen oxide dries it up and cleans out bacteria. I use both. This time of year is my horrible allergy time, my ears stop up, get sinusitis etc, and my ears will hurt too.
Hope this helps.


Thanks will try it let you know in a few days!


Thanks for the alcohol advice, used it a couple of times already, cleared up considerably. I had lot dry puss on the outside so I had used alcohol wipes to get the outside started but allowed a couple drops to go in the ear. It’s 3/4 cleared. Thanks a million.


I have had a quite a few ear problems myself. Worked great for me, and glad it did for you too.


My grandson was diagnosed in the first week of Dec . Doctor told us he has Chiair an needs surgery. As we talked all the thing I thought where just him where possible causes of chiari.He is 9yrs old Wet self chocked on food fell a lot on nothing his eyes where bad he had to patch one eye. Headaches speech problems learning disabilities and neck pain numbness in hands .I never thought anything was wrong till we talked to the doctor. . She said they where signs of the chiari.
We left dumb founded . we got another opinion from the same practice. He told us he did not see where he need it and I should let boys be boys. He told me that when his head hurt when he coughs or sneeze or been over then would feel he need surgery . If I could have choke him I would have.I have migraines and am on botox treatments now.When we left I told my husband he is having the surgery. He had it in Feb Almost 3 mo later he was in special Olympics I cried. 7mo later you would not no he had the surgery. very few headaches. does not fall eyes are better doesn’t wet self as much doing pt for neck some speech is better no numbness. I am so blessed.He is doing great now. Have to watch him that is ok. Just glad to have him . I went with my heart and the first doctor is a mother first to. I take care of new she would take care of my baby.


So happy things worked out well​:joy::smile: hope that your grandson continues to heal! He’s very lucky to have a special grandmother like yourself!!!


Another newly diagnosed. My daughter, 28, was just diagnosed with Chiari malformation and surgery is suggested.
This idea scares me to death. Anyone been through it, had success, can recommend a
surgeon in Mass.
Thank you


I had surgery June 2015 for a 9 mm Chiari 1 issue… Some symptoms are better now, some not. I am not walking listing to the right anymore and not having drop attacks. But, my headaches are still horrible, the muscle pain and nerve pain are still horrible-the surgeon and p.t. said I was too damaged for those symptoms to be helped. Everyone has to make the right decision for themselves as to whether they can manage their symptons or need surgery. I lived with mine for 56 years and finally could no longer live that way. My spinal fluid (CSF) has stopped moved and I was falling to the ground. So, I am glad I had the surgery but it was a very hard recovery. It takes more than a year to recover, so do not feel hopeless… Best wishes for your daughter.


hi txgirl09
I had surgery in July this year, I too suffered with severe pain at the back of my head and neck. I was diagnosed in august 2015. the surgeon did various tests and discovered a 4mm hernia. I personally recommend surgery as in my case it has meant I can wake up in the morning with a slight headache instead of a severe one! the headaches were the main part of my life for up to 16 years. doctors repeatedly told me they were just migraines, result from bronchitis or stress,they didn’t seem to understand how much they hurt!
I’m not holding my breath however as the surgeon has told me it may progress again as I get older. I am now on a phased return to work, taking it easy and enjoying the reduced pain I have. don’t get me wrong the surgery was major but to me well worth it. it is really down to you, research as much as you can. I was very lucky to get a competent surgeon at stoke hospital in the uk to do my surgery. hope you find your way soon take care x


So happy to hear about some good success and the best in your recoveries.:blush::blush:


I had surgery on October 6th of 2016. I feel horrible. The back of my neck where I had surgery is painful 24 /7. I know it will take time but to feel pain constantly when you are suppose to get some relief. I don’t have the headaches as bad. But now I feel I can’t move my neck or left arm without alot of pain. I feel like there is a rod coming from the bottom of scull and twisting my neck tighter like a wrench tightening a bolt. I can’t take pain meds Dr give because I teach and they make me so drugged and sleepy. What can I do? Will this get better? I feel I have made a mistake getting surgery. Some


TJ here. Recovery takes a long time as you have noted. Part of the reason is there is such a low blood supply in the area, it takes a long time to overcome the inflammation the surgery causes. You may want to call your doc and ask for a PT referral. There is a lot a good PT can do to help you gains some control over the pain in the area. Developing some flexibility will help a lot. Between some stimulation and massage stretching etc you can usually get some relief… You are right about the pain meds, they really aren’t much help after a short while as they don’t really address the problem.


Katherine sorry you’re feeling so bad, but remember everyone reacts differently to pain and recovery. But maybe if try to find a “happy zone” so that you can get your mind off of your pain it might help. Wishing you the best


Hi James! I’m also in nj and was wondering name of specialist you saw in camden.