Surgery...yay or nay?

Hi All,

I'm new to this group. I have known about my Chiari Malformation for 7 was deemed an "incidental finding" after I had my first child...turns out all the symptoms I was having back in 2006 were most likely Chiari. Anyhow, I eventually started feeling better and have been busy having another child and dealing with a chronically ill child since. Looking back, I have had symptoms all along, but nothing enough to slow me down.

The last 4 months or so, my symptoms have increased dramatically. I suffer from being off balance, numbness and tingling and muscle weakness in my arms and legs. I also notice trouble swallowing. Amazingly enough I have not had much pain, although in the last week I have noticed more pressure in the back of my head.

Anyhow, I have been seeing Dr Oro in Denver, had new MRI's and my chiari is about 9mm. Our game plan a few weeks ago was to wait 5 or 6 months and see if I plateaued or got worse, since I was not experiencing any pain.

However, the dizziness and weakness seems to be getting worse, to the point I am not functioning normally. I am having trouble managing my daughters care (she has kidney disease and lots of medications and other needs).

I'm wondering if anyone could tell me if the decompression surgery will help w/ the other symptoms like dizziness and muscle weakness? I'm ready to sign on the dotted line today, my symptoms are so bad.

It is a big decision because I am my daughters primary care giver, if I'm out for the count, my hubby has to take her, me, my son and work on. On the other hand I'm kind of just a lump on a log at the moment...thoughts?

I have the same issue: I do have headaches but they are relieved by Excedrin Migraine (which if taken daily gives me gastritis). Sometimes Ibuprofen instead but that is also not good daily or long term for the kidneys and stomach.

I have mostly balance dizziness issues and the swallowing thing and all the stuff you just described. I decided to have the surgery because my quality of life is really suffering.

I cannot answer yet if this has helped me obviously since I have not had the surgery yet (Nov 4th is my date).

But, I can say that in my opinion, if you are not functioning then it is not unreasonable to get the surgery.

I cannot stand it anymore personally. Every day is vertigo, and off balance to the point where I can't drive all the time etc...

So, I guess that is what you need to decide: is my quality of life going downhill? Can I function? If I get worse will my life and my family's suffer?

That is my two cents.

I hope it helps! :-)

I agree with emmaline. For SOME people there can be irreversible damage- the longer your brainstem is compressed the higher chances become that some symptoms are permanent. But, that being said, not every body deals post op/ lingering symptoms. I am 6 months post op. I still have a headache (my primary symptom) but the dizziness and balance issues are about 90% better. Truly every person is different as far as outcomes. I was always going to have the surgery, as soon as I got diagnosed. In fact, I couldn’t wait. I am glad I did it and would do it again without hesitation. What is the main reason you are hesitant? Is it because you know that you won’t be fully functioning after surgery to take care of your kids? If that’s the reason I say
Spend some time talking about that with your husband so he understands how much work he’s going to have to do, and then do what you need to do to take care of yourself and your future. Wait till you know in heart what the right thing is for you.



I too kept waiting and things got worse, numbness tingling, dizziness, pain in the back of my head. I had some days that really scared me. I just had surgery Sept. 27th. I can already tell I have much improvement and would do it all over if asked. Make sure you have a good experienced doctor. I was out of the hospital in 3 days. I am still taking pain medicine and get my staples out tomorrow. I did need help and am not yet driving, but will be soon. I don't care if I am 100% because I am already better than I was, I know as I heal it will be better!

Hugs to you!


I to have symptoms of dizziness,headache, balance issues,numbness and tingling to my hands and feet and severe brain fog. I had surgery four years ago and was asymptomatic but now have all the symptoms again. I am to see Dr Oro soon for a revision. I would do it again in a heartbeat. Life is to short. I hope everything turns out for you. I pray for us all everyday.

I was dx this year. Im at 5mm and suffering from severe head pressure especially behind my lower skull and pain that runs down my face and neck, tingling arms, etc. im a 44 yr old mom with older kids now. I also have heart arrythmia issues so im living off of Advil until i get more answers a d what meds I can take. My new and wonderful husband has been helping me with research. We saw Dr Oro is a top specialist in chiari!Lucky you. Im still in beginning stages of trying to decide what chiari specialist to go to and what my longterm future holds. Surgery or not? I have a good job with health insurance but i also like you am concerned with recovery time, burdening my husband, whether or not surgery would help and if I dont do anything, what is longterm damage. I trust God will give me answers - I hope very soon! Its a process and finding a good Dr that understands is definitely a great start. I just found one but i dont think hes a top specialist on this.
All the best!

Yes I feel very blessed to have Dr Oro so close to home (about an hour drive)...and only 30 minutes from my daughters children's hospital! ( I just know we will end up in the hospital at the same time). I learned long ago w/ my daughter that going straight to a specialist was the way to go. Do you all recommend also finding a neurologist for care after the surgery? I think it is time for me to just grin and bear it. Been praying for three straight days and my symptoms just keep getting worse (God knows I'm stubborn I guess). Luckily we have a lot of family support and decent insurance. Thank you all for your comments.


You sound like you have already made your decision. I think you should talk to Dr Oro and tell him exactly what you just told us. These are some articles that give you statistics about pre and post surgical symptoms.

Surgery Improves Quality of Life for about 80 % of Patients:

Brazilian Study Details Which Symptoms Improve with Surgery

Study of Long Term Impact Chiari has on Quality of Life

This is an article about Surgical Predictors Based on the Chicago Chiari Outcome Scale:

Please let us know how you are doing, You are not alone & I know this is scary, Never hesitate to ask anything.

We have been there I Promise !!!

Tracy Z.

I had decompression in may… My symptoms were bad & getting worse… I thought once I got surgery that would be it. I spent seven weeks in hospital … I got meningitis ( chemical and bacterial) had csf leakage and developed hydrocephalus . I now have a shunt to reduce pressure. I am out of hospital about 7 weeks and am getting better every day. I just want to make you aware it can all go wrong, and ESP as you have your children to care for. It is a very big decision for you, just make sure that’s benefits of what the surgery may bring out weigh the risks . Good luck and I hope all works out ok for you


I am glad you posted on this board! It was my life saver when I was at the stage you are right now. You are very fortunate to live so close to Dr. Oro. I too, am from Colorado, but in the southwest and about an 8 hour drive. I had surgery from Dr. Oro almost 11 months ago already. I did have headaches each night down low in the back of my head, but they were never really debilitating. What was the most debilitating symptoms for me were similar to yours, and in the months preceding surgery, they escalated quickly. I dealt with a lot of numbing and tingling in my hands and sometimes in my feet (when I went intertubing for a couple of hours, my feet went completely numb, but at that time I didn't know why), I was becoming dizzy almost every time I stood up also. Then, the slurred speech started, and I was becoming very unsteady and needing to sometimes balance with rails and stuff to walk. It was getting out of control how I would be having a conversation and completely forget what I was saying and just stare. I felt like I had lost 50 IQ points and I saw floating stars often. I pushed through it like you are doing, but it was getting to the point and was cascading for the worst so fast, I imagined I would be disabled in another year.

I functioned so much less than I had and my energy was going down the tubes. Most who know me describe me as the energizer bunny, and that description just went out the window. I was tired of it and scared that if I didn't do something soon, there could be permanent damage. So, I had my surgery.

Once I was fully out of groggy, anesthesia land I felt like a million bucks and was a totally different person. I would say a good 90% of my symptoms went buh-bye before I was even discharged. I did end up having some occipital nerve damage that has just about resolved itself, but other than that, I haven't had any issues (knock on wood so far). I would do my surgery again in an absolute heartbeat.

If your symptoms are getting worse as fast as mine did, I think it could pose a very real danger to you and your family. You need to be on top of your game and you need to, and deserve to, feel better. You don't want to fall, forget meds for your little one, pass out, etc.

My recovery was ridiculously easy because I felt so good. Again, I was fortunate. I had to remember not to lift and I was very aware of that because the last thing I wanted was a leak and another surgery. But other than that, there really weren't any life altering restrictions, other than driving for a bit. If the surgery helps you, you will feel so much better that the restrictions will be nothing in comparison to how you felt beforehand, at leas that's how it was for me.

Of course, everyone is different, and this IS a very risky surgery. You may feel even better than me, you may have complications. I don't know. But, I do know that Dr. Oro does his homework and is a very good surgeon with a great track record. His risk rate is very low because he knows what he is doing. So, that in and of itself should make your recovery better than it might be otherwise.

Surgery is a decision that impacts you as well as your entire family and should be carefully considered. I noticed that Dr. Oro will not operate if he feels the risks outweigh the potential benefits. I had to jump through weeks of tests and hoops before he even decided he saw a benefit in surgery, so he doesn't just do surgery willy nilly. My point is that if he thinks surgery could benefit you, he has done his homework and thoroughly thought this out.

I really look forward to knowing what you decide, dates, etc. If you want to talk personally, let me know and I will message my number over to you. The group on this board is INCREDIBLE and so knowledgeable and caring.

take care

Just my opinion on the symptoms: I had the headaches for a long time and was always just shrugged off and let it go. A couple of months before I had my surgery I started having a lot of the symptoms you are having and they came on rapidly and unannounced and started progressing. A month before surgery, mine got so bad that I could barely walk and was riding in a wheelchair if we went anywhere. For this reason, I am very glad I had my surgery. Am I back to Am I back to what I consider normal, to where I can function and be mobile...yes. This is why I am glad I had the surgery done when I did, b/c no telling where I would be now. When you sit down and consider the good and bad points about having surgery, take into consideration if your family could manage with you being laid up for a couple of months over you being unable to get around and walk. I know it is very stressful, I had a very good support system and still felt guilty.

God Bless and good luck!

I personally havent had surgery but then again, I havent had bad enougn symptoms to get it done. That being said, I think talking to your friends and family who live nearby would greatly help you and your husband. When I had my atv accident a few years ago, my husband couldnt be here every day to take care of me and my friend was able to be here to help me out when he wasnt. I am sure they will help out where they can so your husband doesnt have to do everything all the time. It sounds like you made your decision so I will say good luck and I hope everything turns out ok for you. :-)

I'm 11 month post op and I found that surgery improved so many of my symptoms. I had a lot of trouble with dizziness, feeling lightheaded, feet and hands always numb or tingling, neck and shoulder pain, and extreme fatigue. Headaches were present but I could deal with those. I have no regrets about having the surgery! I feel so much better and everyone notices how much I've improved. I don't think I'll ever function as well as a person without chiari but I'm pretty happy with my results! I can now work full time, take care of household chores, socialize, and exercise daily! Before I worked, ate, and went to bed!

Can you all say what neaurosurgeons youre using? Thanks

I went to dr Heffez in WI. He did my decompression, and I think he did a great job with it. He would not continue to see me for my neck instability issues though. For that I’m going to see F. Henderson in MD.

Thank you for your post. I was recently diagnosed in June 2013 and had my surgery July 15, 2013. My symptoms were mostly ringing in the ears, blurred vision, dizziness, lost of concentration/forgetfulness, and stabbing pain (my head) whenever I laughed, sneezed, or coughed. The symptoms were gone after surgery. I can only speak for myself; I would have the surgery again. Before the surgery, I felt useless. I could not enjoy watching TV because of the blurred vision. Every time I stood up to do something, I had to sit back down because of the dizziness. I was scared to laugh because of the pain, sneezing was a terror to me especially when it was unexpected, and I did every thing I could to keep from coughing.

I live in Huntsville, AL and my neurosurgeon is Dr. Joel Pickett. He did a wonderful job on my surgery. I could not afford to see a chiari specialist or travel to see one, but I found a neurosurgeon that knew what my problem was before he came in room. He explained it to me by drawing a picture and explained the surgery the same way. I was so scared I cried. It took two weeks before I decided to go through with the surgery. Talking things out with family and friends helped me to make the decision to have the surgery. I'm glad I did. I hope you find peace with whatever you decide to do.

My surgeon was Dr. Ringer with the Mayfield Clinic in Cincinnati. I was very pleased with him!

Thank you all!!!

My surgery was done by Dr. Rob Parrish at Methodist Hospital and the Houston Medical Center. I really am glad to have found him. My general doctor used to be an anesthesiologist and worked alongside many, she said he was the doctor she would want to have. I agree.

I like many have already said, I also had the severe headaches, dizziness, blurred vision, numbness and tingling in my hands and feet, trouble walking, etc. As a stay at home mom to my three kids under the age of 6, recovery has been tough. But I made it to the ER just in time, mine was 11mm and so I had to have decomp surgery 3 days later. A decision I do not regret. With the help of my husband, my mom and church friends, we made it through the 15 day hospital stay after surgery. I’ll be honest 4 months post op and I have had multiple hospital trips, one which included a viral meningitis. My recovery has been slow, too slow, taking 3 different pain meds still. But of course recovery is different for all.

My neurosurgeon was, Dr. Vitaly Siomin at Baptist South Hospital in Miami, Fl. Excellent doctor, with years of experience in Chiari surgeries.