So I have been fighting all these chiari symptoms for a few years. I had no idea what was wrong with me until last week my neurologist referred me to a surgeon for Chiari Malformation. I’ve read about it a lot this past week and have heard a lot of great results from decompression surgery but I’m still terrified. After talking to the surgeon and discussing possible complications I am terrified… Can anyone shed some light on the surgery and provide some peace of mind?
You are 100% right! I wasn’t even thinking of it in terms of wait for it to get worse or chance it for a better life. My quality of life right now is bad and getting worse so surgery is probably the best option. It’s being scheduled Monday but I figured getting some advice/experience from others might help calm my nerves and reassure me of my choice.
It’s really great to hear that you are doing so well now and loving your job! I’m happy for you!!’ 
Thank you for the response and peace of mind!
I'm almost 11 months post-op and I have absolutely no regrets on having the surgery. Prior to surgery I basically went to work and nothing else. The rest of my time was spent lying down exhausted and in pain. Now I feel like I can lead a normal life. I still get tired easier and have aches and pains but nothing like before. The surgery for me wasn't that bad. I have a pretty good pain tolerance so to me I just felt really sore and tender. I was able to get and move around right away and actually ended up getting released from the hospital the day after (this is not typical from what I read, most people stay 3-4 days). I went out of state for surgery so I stayed a few days at a hotel near my NS just to be safe. I was really tired and sore but I was able to get out and walk around each day and even went out to dinner one evening!
Since my surgery I have been to parties, started working out and running, taken hikes almost every single weekend, gone to movies, on shopping trips, a two-day concert, and on a few long car trips. All of these things caused me great pain before and would not have happened had I not gone through with surgery! :)
I am 6 months post op. I was very eager to have the surgery because I was hoping for an answere to constant headache and dizziness. I found a surgeon who specializes in Chiari (it took me a few tries and a few disappointments)and had the surgery. All of my symptoms are improved. I still have a headache but it is much less painful and much easier to manage with over the counter meds. Every person has a different story of there post op symptoms… Some are pain free post op and some have worsened pain. Generally The surgery is thought to be a way to arrest the progression of symptoms, not a cure for the symptoms, but many people do have an improved quality of life. I am so glad I had it done and would do it again in heartbeat. The actual surgery was not painful for me at all. It has been tough, though, dealing with the tiredness (it can really knock you down) and the mental/emotional aspects of adjusting to my “new” me post op and coming to terms with my reality vs what I had hoped for(complete pain free). The recovery period is slow.
Have you researched the different ways the surgery is performed, such having a duraplasty or not?Have you been screened by the surgeon for Elhers Danlos Syndrome? I just want you to be informed about the surgical route you are taking. Trust yourself in making your decisions, you know when it’s time!
Keep connected here so you don’t feel so scared and alone,
Jenn
Thank you all for the replies and support! I have researched the hell out of the surgery and the different ways to do it. I have a second opinion with a chiari specialist in Seattle either this week or next soninwill find out more. The way my surgeon described the surgery he’d do, I would need duraplasty cuz the crowing is so bad. But hopefully ill get even more info and direction with this next appointment!
I wouldn't be afraid to discuss your concerns with the specialist. I had decompression surgery June 4th last year. the surgeon had said that it was my choice because the MRI didn't show that I was "bad". After surgery he said that I had more congestion than the MRI showed. I am still having problems but I do not regret having surgery. We thought about it for months before making a decision. Write down your questions and take them with you.
That’s exactly what my dr had said. He kept emphasizing the possible complications such as quadraplegia, stroke and CSF leakage. He said while mine is “minor” the crowding is pretty bad so he recommended duraplasty along with decompression. Does anyone know the statistics of these complications? I’m not too worried about leakage as that can be monitored and caught and fixed but what about the quadraplegia/paralysis or stroke? That’s what really worries me.
Heather,
The most important decision you will make besides having the surgery is your surgeon. Someone that does a lot of decompressions and understands what we go through is preferable. Razzle mentioned Dr Ellenboggan. He is an expert and people have been very happy with his care. The surgery is a treatment not a cure. I thought it would take care of all my problems and was disapointed that it didn't. I dont regret having my surgery. It made my symptoms bearable and my headaches a lot less intense and not as frequent.
Good luck and if you need any help you have many friends here that know what you are going through.
Wendy
Thank you so much. It has really helped joining this sight and knowing that there are others that understand. I’m seeing dr steege at the Swedish medical center in Seattle tomorrow morning. He’s a chiari specialist and has a phenomenal track record with chiari decompression surgery. The other surgeon I saw was dr modha at rebound in vancouver. He does chiari decompression surgeries as well with an excellent track record. I’m confidentin both surgeons, just nervous about brain surgery in general. I’ve never had surgery or any sort of procedure before. I’ve never even broken a bone! So this is a very scary thing for me.
I bet it is. I had never had major surgery either until my decompression. By the way I love your hair color :) I tried dyeing mine purple last year in Sept. for Chiari awareness but it wouldn't take.
You are probably going to be glad that you’ve gotten it behind you so the healing can begin.I’m 10months out,I will say the recovery is slower than I wanted it to be but it was worth the risk.It had been a very long illness for me…27 yrs. without diagnosis,lots of Dr.s and lots of disappointments I would do it all over agin if need be,there’s still some things to deal with but the symptoms have gotten better.I had come to the place that I felt I had nothing to lose,a life of hell or chance surgery that had a pretty good odds of helping,my excitement far out weighed my fear, you know if you’ve gone as far as you want go with symptoms,wish I had gotten the chance years before. I do hope all will get better for you soon,the surgery for me was a piece of cake compared to the life before,I thank God everyday for the few NSs who know what to do.This surgery is a great gift,so many are still searching with no end in sight,I cry for them and pray everyday that all can find the answers.
I love your hair color too! I have wanted a purple glaze in my auburn hair for a long time but think it will go burgundy on me.
I don't want to bleach it so...maybe a purple strand here and there?
But I digress! This is about Chiari and not hair!
I have had many surgeries and they are scary for us and that is normal. If you need anxiety meds they usually can offer those if you ask. :-)
I just had surgery four days ago. I was in the hospital for two days. I was really surprised that the pain wasn’t as bad as I expected. When I went in, my face was numb, I was blind in my right eye, I had a constant headache, and I couldn’t walk straight. When I awoke, the first thing I realized was I could read the clock. My symptoms have mostly gone and this is the best I’ve felt in six months, even with the post surgery pain. I’m so looking forward to regaining my life.the pain is there, but completely controllable in my case. I interact with my family again and I wouldn’t trade it for anything. I would totally do the surgery again in a heartbeat.
Thank you for all the support everyone!!! I finally have my surgery date (September 24th) and Swedish hospital is paying for everything. I’m so excited to get on the road to healing!
Heather…
What fabulous new!!! I hope that knowing your medical bills will be taken care of will give you peace…at least that worry is off your plate and your focus can be on your recovery.
I had my surgery five years ago and I am happy I had it done.
The surgery, like others have written, is not a cure…but a treatment…I have gotten relief from my most troublesome symptoms for the most part…I still deal with pain issues but they are well managed…thank God for my wonderful primary!
I read your page and I could relate to going doctor to doctor…so upsetting…thrilled that you have a game plan set in place…let us know if we can help in any way.
Peace,
Lori
DENNIS!!! HOW WONDERFUL!!! Please keep us updated on yourself!!!