Three years after my diagnosis with chiari, I started having trouble swallowing and breathing. I had always had issues with dizziness, fnumbness and weakness, ogginess in the head, and balance problems. My neurosurgeon told me that my surgery wasn't elective anymore because I coud get to a point where he "couldn't fix me anymore." One of the best parts for me after the surgery was that the fogginess and the constant dizziness were gone. I still sometime have some balance issues but I don't have headaches anymore. For me, having the surgery was a good thing; I'm not perfect but better than I was. I'll pray for you as you make this difficult decision. Before I was told I had to do it, I went back and forth about it; I was afraid of what would happen if I had the surgery and afraid of what would happen if I didn't. For me, making the decision to do it was freeing. I couldn't be sure of the result - everyone reacts differently to surgery - but I knew I was doing what I could to hopefully make my life better and was freeing myself of the worry of not doing anything. The right answer will come to you; it's so important to have a good neurosurgeon whose opinion and competence you trust. Prayers for you and your family. Shirley
Shirley who was your surgeon?
Thank you for your response Shirley, I think you are exactly right I won't know if it will help until I take the plunge...It's no different than our decisions we have made for our daughter. There was a 25% chance her disease would come back after a kidney transplant and attack her new kidney, but we knew she couldn't live on dialysis forever as the avg life span of children on dialysis is 5 years...We chose to risk the transplant and found a donor who was willing to risk her spare kidney to the disease. Unfortunately her disease came back, although initially devastated, we have trudged along and are managing fine 2 years later. I'm not sure why I look at this much different. Even if it doesn't help, I have to try for a better life.
I look at the 7 years pretty much symptom free as a blessing, God knew I had bigger things going on. His timing is always perfect, even if it doesn't seem like it! Waiting for Dr Oro's assistant to call me to schedule this darn thing and get on w/ it. So glad to have found this group. I appreciate your POSITIVE responses!
Kelly
Kelly in right behind you! Youre in my prayers! The Lord bless you!
Kelly Im right behind you! Waiting for my answers tomorrow.
Hi everyone I am new to this site as well. I have been reading all of the discussion posts and looking at articles that have been posted on here. I had an accidental diagnosis of my chiari three years ago when they found a malformation in my heart. I went to a specialist in Los Angeles and he told me that he didn't believe I had a chiari and to just do some neck strengthening exercises to relieve the pain in my neck. Now, fast forward three years later and I have almost daily headaches, numbness, and not to mention the forgetfulness that can be so frustrating to my twin boys. I went to a neurologist locally and she didn't think I needed anything other than the MRI without contrast and with out the CSF flow study which I recommended. Anyways, once the initial MRI came back, the neurologist humbled herself and made me have another MRI not even 2 weeks apart form the first. The second MRI came back that my chiari was only 4 mm while the first one said it was 7mm. After being so frustrated I found Dr. Oro in Colorado and made an appointment to see him. My question to all of you is do you think I am wasting my family's time, money and Dr. Oro's if it turns out that I only have a chiari of 4mm?
Hi Mickey, It was my impression after seeing both his NP Kimberly Sexton twice and Dr Oro, that he does not put a huge emphasis on the size of the Chiari, but rather the symptoms you are having. Also, the way the radiologist measured on my MRI showed a 7 mm chiari, but when Dr Oro measured the way he feels is most accurate made it 9 mm. So it is very likely that your 4 mm could actually be bigger.
Hi Mickey sweetheart. I think you’re in great hands definitely with Dr. Oro…I envy you. I may have to travel to Colorado to meet him. I don’t think you’re wasting your time even if youre 4 mm. I found a neurosurgeon here in Florida Recently, who is my new hero, and he told me that he does not go by how many millimeters, he goes by your symptoms and the fact that you were a 7mm Then a 4mm may just mean they misread your MRIs. My Neuro said this happens a lot or sometimes it worsens then other times. You have to pay attention to your symptoms that’s what’s important. My neuro was so understanding and said that it’s not all in my mind that it is a condition that I have to monitor the symptoms. I am looking at my options now. I am a 5mm at this point living with severe pressure pain all the wonderful symptoms of Chiari. Before my accident, one year ago, I was perfectly fine, healthy and active lifestyle, but the trauma brought about and woke up my Chiari which I was not aware I had and now I am considered to have a symptomatic “active” Chiari. Now my symptoms are beyond painful and sometimes disabilitating. I personally was misdiagnosed in fact they had my Chiari at 1-2mm and blew it off. Don’t ignore how you feel, just be careful with medications, I personally take Tylenol or Advil and I also mix them as well every eight hours and it helps me up to some point. The narcotics had too many side effects for me. They are currently going to do an occipital block behind my head to see if that helps with some of the pain and we have discussed surgery but I am not ready to take that step and I am still doing my research I’m good doctors. My Neuro is wonderful but he doesn’t do many of these and he doesn’t only specialize Chiari which for me is very important to find someone who specifically does many of these and specializes in Chiari. Feel free to email me anytime. God bless you.
BKmm is right!
My surgeon was Dr. Fraser Henderson. I'm fortunate to live here not very far from his office and the hospital where he does his surgeries. I think he is the best. When he said a prayer for me before my surgery, I felt like I was in the right place with the right surgeron. For me, it wasn't a horrific experience. If I had know how easily I would have gotten through it, I would have done it sooner. One thing that went a long way or me is believing that "it is what it is" and I can't change that. All I have control of is the attitude with which I approach it. I find it works for me to take a positive approach and believe that it will work out the way it is supposed to and there is not much use in stressing about it. I do sometimes have to work on that. My mantra is "don't go there." I've had some practice since I had three surgeries for a brain aneurysm on the right carotid artery. I don't do much stressing about that either. My dad was a preacher and he always taught us to look on the positive side and God would take care of the rest. Of course, recognizing that sometimes the answer iss "no" the human factor does get in the way. It's a process I think and it has gotten easier over the years as I practiced it. As far as I know we only go through this life once - and I don't want to miss it!
It souind as though you have been so much. I think it's even harder to deal with our chnildren being sick than ourselves. With our children we want to give them every chance; what a difficult decision you had to make. I think everything happens for a reason even though we don't always like it and don't understand. I do believe in healing because it seems to make sense to me that the one who put me together in the first place can put me back together. I will keep you and your family in my prayers as you go through this diffcult time..
Cyberhugs
Shirley
Jozy said:
Shirley who was your surgeon?
I am in the same position as you, but I actually have my surgery scheduled for 10/7. I have basically lost 12 years of my life with misdiagnoses, more doctors and medications that I can count, all in an effort to try to alleviate my headaches, dizziness, severe neck pain, brain fog, blurred vision,etc.
What I have found is that most PCP's don't have a lot of experience with Chiari, and neurologists and many neurosurgeons and radiologists will "blow it off" it is not more than 5mm and you don't have a Syrinx. I had tonsillar descent 12 years ago when I first had an MRI, but since it did not meet the "Chiari I criteria" it wasn't even mentioned on the report that went to my PCP. I feel like have been through hell and back trying to get a diagnosis all of these years and Chiari was completely overlooked.
It has finally gotten to a point where I realize what a horrible quality of life I am leading. It is amazing how you begin to accept all the stuff that you are feeling as normal, but believe me I am anything but normal. Also, if I hear one more person tell me that I look completely fine, I might punch them.
After seeing 3 neurosurgeons, I have decided to move ahead with surgery. Yes, I am terrified, and have talked myself out of it 100 times, but I know that I need to do this. My NS and I both agree that I have ruled out every other diagnosis and treatment option without any relief. Yes, I may not have the biggest malformation (5mm) and I don't have a Syrinx, but what is there has completed brought my life to a screeching halt.
I hope and pray that you find the answers you need to make your decision. I know that it has not be an easy one for me. I am 51 years old and feel like I am 90. I have given up my job and everything I love to do because of this. What finally pushed me to schedule the surgery was finding out that I am going to be a grandmother. There is no way I would even trust myself to carry an infant with the way I feel. I want to get back to being "me" again (I have lost myself somewhere throughout this journey) and be the best Nunnie that I can be.
Good luck :)
Thank you for sharing and I will keep you in my thoughts and prayers come 10/7. I would encourage you to write letters to all of your previous doctors, especially NS and Neuro's to nicely inform them that it was your Chiari all this time. I too was diagnosed w/ Chiari 7 years ago and told it was incidental, but all the symptoms I was experiencing at the time were from the Chiari. Luckily my symptoms got better for 7 years. I am not bitter, but definitely plan to write the neurologist who sent me on my way saying I was fine to inform her that she missed it. In hopes that the next patient she see's w/ Chiari isn't told they are fine... I also don't think size matters, but more how it effects our individual anatomy. I pray your surgery is successful and free of complications!
BigD821 said:
I am in the same position as you, but I actually have my surgery scheduled for 10/7. I have basically lost 12 years of my life with misdiagnoses, more doctors and medications that I can count, all in an effort to try to alleviate my headaches, dizziness, severe neck pain, brain fog, blurred vision,etc.
What I have found is that most PCP's don't have a lot of experience with Chiari, and neurologists and many neurosurgeons and radiologists will "blow it off" it is not more than 5mm and you don't have a Syrinx. I had tonsillar descent 12 years ago when I first had an MRI, but since it did not meet the "Chiari I criteria" it wasn't even mentioned on the report that went to my PCP. I feel like have been through hell and back trying to get a diagnosis all of these years and Chiari was completely overlooked.
It has finally gotten to a point where I realize what a horrible quality of life I am leading. It is amazing how you begin to accept all the stuff that you are feeling as normal, but believe me I am anything but normal. Also, if I hear one more person tell me that I look completely fine, I might punch them.
After seeing 3 neurosurgeons, I have decided to move ahead with surgery. Yes, I am terrified, and have talked myself out of it 100 times, but I know that I need to do this. My NS and I both agree that I have ruled out every other diagnosis and treatment option without any relief. Yes, I may not have the biggest malformation (5mm) and I don't have a Syrinx, but what is there has completed brought my life to a screeching halt.
I hope and pray that you find the answers you need to make your decision. I know that it has not be an easy one for me. I am 51 years old and feel like I am 90. I have given up my job and everything I love to do because of this. What finally pushed me to schedule the surgery was finding out that I am going to be a grandmother. There is no way I would even trust myself to carry an infant with the way I feel. I want to get back to being "me" again (I have lost myself somewhere throughout this journey) and be the best Nunnie that I can be.
Good luck :)
I too was planning on writing all my doctors to better educate them.