Hi all,

I havent been on in awhile nd a lot has happened since my surgery, as ye know im from ireland nd theres not many places to go for help im at my wits end and in tears all the time. The surgery they said wud help me but im slowly getten worst each day, i dnt want to appear as a moaner but no one takes me seriously i get the feeling from my docs and consultants that they think im makin it up how bad i have become. I dont know what to do or where to look for help and make them understand that why the problem is in my head it is not make believe or that the pain isnt as bad as i say. I try to have a positive outlook on life but i just dnt think i can take much more. I dont understand why the docs wont help me.

All my love to ye all

Caroline xxxx

Hi abby,

Thank u i didnt even think of keeping a pain diary dat wud really help thanks so much again xxx


Hi Caroline,

I am sorry you aren't doing well. Is there someone that lives with you that can talk to the Dr's? What symptoms have gotten worse? Are you having pain and muscle stiffness or nausea? Private message me and tell me if they opened your Dura and had a Duraplasty and what has been going on since surgery. We will make sure you get some help. I promise.

Tracy Z.

Awe… My heart and prayers go put to you Caroline. Im new to chiari and recently dx after an accident and mri. Sadly, im getting worse woth the pain. I was traveling and boy i didnt realize how bad i was bc of limitations. I cant tell you enpugh how much it means tor to find others going through the same. I just want to give everyone a big hug and make it all go away! I feel so much compassion for those in pain. I pray that God continues to give us the strength and answers that we all need! Im just starting my search for drs. Been to two cleveland clinic and UM in miami. I left in tears and they blew me off bc i looked so healthy. One neurosurgeon told me i just needed to take Advil. I was beside myself. There have to be good drs out there! Lets not give up! God bless you and be with you!! Jozy

Find a new doctor! The one you using or the treatment facility is wrong. I’m a mess but there tying to help. You should get the help you want and need. Good luck

Do NOT give up sweetie. As hard as it is, you are your main advocate. Keep searching. Be sure to write to TracyZ as I bet she can help you find doctors in your area. I pray that you will find the right doctor that will help you down the road to recovery.

Just know that you are not alone. I’m hoping with the help of support groups, we can make medical docs more aware of Chiari and Syringomyelia by organizing fund raisers around the world. It would be great to be taken seriously for once.

Have u had surgery Caroline? I’m from Ireland too and due to have surgery next week!!! Xx

I know what you are going through. I had surgery and was better for a few months, then slowly got worse and worse. I’m going tomorrow to get the blood test to check for ankylosing spondalitis. You could have something else causing your pain. Dont give up. Keep going to the doctor even if you have to search your symptoms online and have him test for every single thing you find.

I can recommend two very good neurosurgeons if you all don't find a good one in the mean time. Dr. Eric Trumble in Orlando Florida and Dr. Mark Iantosca at the Penn State Hershey Medical Center in Pennsylvania. I hate to hear being blown off, it's very discouraging. I hope you find relief soon.

I know exactlt how you feel. My surgery was 2-3 yrs ago and my symptoms are worse than ever. Nobody seems to take me.seriously except for my ma and im fusterated too. The drs dont understand and wont prescribe me anymore pain meds. Im extremely fustrated as well. So sorry for you. You can talk to me any time.