Is there anyone out there who has had surgery that didn't have the classic Chiari Headache? If so, has it helped you?
I have a 10.5 MM Chiari Malformation. I've seen 4 Neurosurgeons. 2 of them think surgery will help and the other 2 said they don't think my symptoms are Chiari related. The 2 that don't recommend surgery are hung up on the fact that I don't get the classic Chiari Headache (immediate pain in the back of the head) when I cough or sneeze.
I have had constant headaches, head pressure, brain fog, dizziness when standing and ringing in my right ear for the past 6 months. I noticed that my symptoms are much worse after lifting and bending. However, they don't start until a few hours after the lifting and bending. My head pressure gets so bad that my eyes get very squinty and I have trouble thinking and focusing.
I'm on the fence on whether to go the surgery route or whether to start taking a drug like Topamax. Any recommendations would be greatly appreciated.
You could always take topamax and give it 90 days then make a decision no one is giving you a time limit. You make the decisions, I take topamax and it helps my headaches but I still have bad quality of life I want to be who I was a year ago. But I’m scared even surgery isn’t going to do that. You can’t reverse surgery and you can try different meds to see if maybe they work for you without the invasion of a brain surgery. Just my opinion
Thanks for your reply, Beeba. This is the first that I've heard of Dysautonomia. I've seen a Neurologist and 4 Neurosurgeons. Is this something that they should have picked up on based on my symptoms or they not the kind of Dr. that don't diagnose this?
Beeba said:
Abby used the word I was thinking as I read your question. What is your bp like? Have you ever fainted? Do you experience lightheadedness after leg exertion? Are symptoms worse upon waking. In other words have you looked into dysautonomia?
Thanks for your reply, Emmaline. Were there any negatives to having the surgery?
Emmaline said:
I didn't have a lot of headaches, there were many more issues that I thought were much worse. And it has greatly improved after surgery. The headaches were worse right before surgery, but before that it was the pressure and pain behind my eyes, being unable to be upright for any length of time, ringing in my ears, fogginess, weakness in my arms and hands, and dizziness. I was unable to work, and was basically bedridden.
You are doing the right thing by educating yourself and asking questions. You'll know if it's right for you.
Thanks, Abby. Do you know if Chiari causes Dysautonomia?
Abby said:
Our nl's and ns's like to rule out other things that can go along with Chiari.
I know in my case all was not my chiari. In addition to chiari, I have Dysautonomia, which will make my ears ring,dizziness, head pressure, brain fog, worse with lifting or upon standing. It also affects my eyes and like you say thinking and focusing. I had a lot of ear pain along with hearing loss. I learned that Chiari can cause Dysautonomia inwhich causes symptoms much like Chiari.
Our doctors should look at everything before electing for surgery. There are truly symptoms that can be worse than Chiari pain. Remember surgery is not a cure only a treatment.
As many has mentioned on this site a CINE MRI will need to be done to measure spinal fluid blockage to your brain. If you have blockage, this is another factor your doctor will seriously consider in looking at surgery.
You have done your homework going for 2nd ,3rd and 4th opinions. Good for you!!!!
If you do go on topamax, remember to drink a lot of water and fluids.
Making the decision to move forward with surgery, should be yours and advice of your doctor that you feel comfortable and confident in. Some of us have elected not to have surgery, based on doctor recommendations and our symptoms not being unbearable to live with.
Being a well educated informed patient helps your doctors take better care of you and gives you choices.
I love the book Conquer Chiari, by Rick Labuda, if you have not read it, pick up a copy of it. It explains the whole process very well.
One Neurosurgeon called it "Dopamax" and advised me to steer clear of it. Another one suggested giving it a try. I'm sure most people in this group have experienced the same thing, but I am getting very frustrated from the differing opinions of the "experts."
Brandi said:
You could always take topamax and give it 90 days then make a decision no one is giving you a time limit. You make the decisions, I take topamax and it helps my headaches but I still have bad quality of life I want to be who I was a year ago. But I'm scared even surgery isn't going to do that. You can't reverse surgery and you can try different meds to see if maybe they work for you without the invasion of a brain surgery. Just my opinion :)
My BP is usually on the high side (125/80). I've never fainted, but get light-headed and a little dizzy when lifting/bending. I don't feel great when I wake up, but not any worse than any other time.
Beeba said:
Yes in a way they should have picked up on it but with the other problem it can be overlooked or flat out discounted. I have seen 4 ns',2 gi drs,2 endocrinologists,3-4 pcp's and a nl not to mention the list of cardiologists. Heck I even went in saying I think I have POTS. They all said tuberculosis?!?!? I didn't have flipping lung surgery why would I have tb??? No dysautonomia. Only after seeing an cardioelectrophysiologist did I get the diagnosis that I knew I had. So apparently I just needed a dr with 23 letters until I got to the right place. He said he was a bit confused why I have been treated this way and why no one picked up on it as chiari is a major cause. And if you have chiari with or without surgical intervention the symptoms were clear. I do not live in a back woods area. I have been to the best at jhh and down from there. No reason this ever should have been missed. Chiari can wreck your nervous system. Abby has low bp causing hers, I have extremely high but all meds that they were giving me treat a heart problem as opposed to a brain dysfunction so they made me very sick and much worse. With just the change of my bp med within 48 hours I had my life back. I did have surgery. Do you have any symptom I named? I would check that off before doing the battery of tests that fall into every specialists area. Your wallet may thank me later. I have had every test under the sun as I laughed and said that ain't it!!
