Chiari Online Support Group

Positive Experiences

I am scheduled to have surgery next month and am really trying to be hopeful this will reduce my symptoms. I know it is not a cure, but right now I am just existing and coping, not living. I have constant headache and neck pain, now it is going down my right arm. I run into things and drop things all of the time. My senses feel like they are on overtime, I can’t stand bright light, loud sounds (even music I used to love) or strong scents. I am dizzy if I turn or bend too quickly. My doctor thinks the surgery will help, but when I read the messages on this board I quickly become discouraged. I know that symptoms may recur, I know the risks of surgery, but I have to do something. Does anyone have any positive stories they can share about surgery or treatment? It would really help right now. Thanks!

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Hello. I was diagnosed in August… And I’m having surgery for the Chiari as well as craniocervical instability on Wednesday of this week! I have talked to quite a few people online that have had the same surgeries… And while the recovery is very slow, their quality of life is much better than it was before surgery.
Hope that encourages you. Praying for your complete healing. – KJ

Hi, I had my 1st surgery in Oct 2012, I did great until 2016. I just had my 2nd surgery end of May 2016, all I can say is why did I wait so long? I suffered for over a year with dizziness, horrible head rushes, balance issues, massive headaches, thinking it was other things, when it was my CSF that was blocked again. This time I had the dural patch. I’ll be honest this one was very rough, but since the end of May I’ve been basically symptom free! Maybe a minor headache due to being overtired, but that’s it!!

It was so worth having it done again. Hoping to never have to go through it again, but now I know if I get any of these symptoms to act quickly and call my neurosurgeon right away.

Best of luck!!

I was diagnosed in January last year. I was born with it according to the Dr. My symptoms didn’t really manifest until Jan/Feb and progressively got worse as my inflammation went from 5 mm to 12mm by surgery time. In 2006 I was diagnosed with Lupus and RA. On Oct 24 I had decompression, c1, c2 laminectomy, duroplasty and cauterization of my brain stem to shorten the protrusion. My surgeon refuses to use man made materials if possible and so my patch is actually a piece of my own skin taken from my scalp. She did an incredible job and I have to say for the first time since 2006 I am PAIN FREE. I have not had a single Chiari symptom 4 weeks post op. The removed Lupus and RA from my medical charts. I did have a very life threatening set back due to a delayed allergic reaction to protein build up from the anesthesia and landed back in the hospital with bacterial aseptic meningitis. They found a small DNA piece in my lumbar fluid for the Meningitis but were unable to get a culture to grow from it. I have spent most of the last month at Harborview Hospital - UW in Seattle. I am home now - a week this Friday with a PICC line and twice daily heavy antibiotics until Dec 2. At that time another spinal tap will happen to send out to genetics to be tested. They can’t tell me where the contamination came from as there are only 73 documented cases in the medical journals. They believe it was contamination introduced at the lab, but we are not taking any chances. So, aside from the infection, the surgery was hands down the absolute best thing I could have done for my body as I am 100% pain free. One thing I learned is to speak up, make sure they take you seriously, listen to you and believe and take care of you! I told them I was allergic to almost all anesthesia and the anesthesiologist made fun of me and belittled me and lo and behold I had a delayed reaction. I am also allergic to morphine and all derivitives. They kept pushing Oxy and other drugs on me. I finally got them to give me Duladid and it was a Godsend. Please be sure you are heard - all your concerns, fears, etc and are taken seriously.

Good morning AAO and Happy Thanksgiving! I wanted to write to you because your symptoms are exactly as mine were 4 years ago and I DID have the surgery because all the symptoms you described I had and they became increasingly worse to were I worked all day and then the minute I walk in the door at home I went to bed before my legs gave out. I remember crying to my mom on one of her visit that I couldn’t do it anymore and I didn’t know at the time what was wrong. Then the car accident happen because I couldn’t turn my neck to see an oncoming car. Needless to say I ended up in the hospital for MRI’s with and without the dye. Eventually they found the problem only when I couldn’t stand or write anymore on my right side. Ok let me skip a few doctor fumbles…I elected to do the surgery and here’s what did get better and what did return after a year…

Symptoms diminished:
No more weakness in legs
No more numb hands unless I write too much
Less neck pressure, I can hold my head up all day
Less ringing in the ears
Can wear a bra without right side numbing up
Don’t get tired during the day and don’t need to nap
Do not feel like I’m dying

Symptoms that returned BUT NOT A BAD:

Can’t take loud noise, no smells, no bending head up or down, can’t turn quickly, pass out if in dental chair too long, migraine set off if I go to the beauty salon and have hair washed, dizzy all day and I take Dramamine almost every day AND IT WORKS, very bad barometric pressure dizziness like on the high seas, bump into walls (not as much), can’t drive in car if I’m not driving, NO ACTIVITIES if i exert myself (breath heavy), can’t lift over 10 pounds. Ok that should be enough.

Long story short, I definitely am happy that I did do the surgery because I do have a better quality of life due to the fact that the recurring symptoms are manageable if I catch them in time and carry with me at all times the following: Imetrex for anything that causes strain in my neck, head, and arm (which lead to a migraine). Dramamine for dissiness, and biofreeze for sore neck. I look at it this way, it’s like a cyst, if you don’t disrupt it, It will stay isolated, but if you move it or aggravate it, the outcome causes more trouble. We need to learn how to live with it, not try to fight against it. Listen to your body and stop what you are doing if you feel the wave coming.
I hope this is helpful and good luck to you…you will find the right comfort for your own head.

Regards,
Chiari Girl

Thank you for your response! I’m glad that you had good results, that is reassuring:) I am a week away from my surgery and am feeling more confident, praying for a good outcome. I hope this will be your last surgery!
Thanks again!

Thank you for responding. I’m glad that you are doing better. I told my NS that even if I have 50% relief I would be happy, (of course, I’m praying for 100%). Thank you for the tips on how you manage your symptoms. I just want to be able to function well and live my life with my children again. I hope you continue to improve.

Thanks again!