I am seeing my neuro on Monday, and I need back up, please!! I was decompressed by a surgeon, with the same practice, in 2006, but I still have almost all of my symptoms back. I get the sense that my neuro doesn’t really want to talk about this; I have nonchalantly mentioned it during my last Botox injections for migraine. I told her that if she ever did a study on Chiari after surgery, no cure, that I would sign up…Now, I cannot take it anymore! I’ve just come off of three weeks of hell. I almost wish that I will be at my worst when I see her for fear that she won’t see it …I have been researching all day, but have not found anything that translates what I want her to see and read.
Heres a summary be sure and look at the tables and followup with some of the Bibliography:
There is some discussion of the lack of research as well.
Dear Len Te:
You are not alone with your symptoms and pain. I am a patient of Dr. Dan Heffez from Milwaukee Wisconsin. I just had my third surgery with him just approx. 3 1/2 weeks ago. I have had to go through so much over the years as well. I want to encourage you to please go to Dr. Heffez's website....he seems to have just updated quite a few things there......He is an amazing NS and has dedicated his work in helping folks like everyone here. His website is very educational and I think it could help you.... also read people's testimonies as well.
There are some studies that he has listed on the bottom of the website.....
God bless you,
Mary Lou
There is research on the damage that chiari does on your autonomic nervous system and also on how a laminectomy can cause the cervical disc to start curving inwards causing a blockage on the CSF flow which causes all the chiari type symptoms to return. Below is a link to a video on a lecture from John Hopkins.
Go to minute 53:22 and it will give you the information on a lady that had a decompression and laminectomy many years ago and now is experiencing symptoms again.
Mary Lou,
Thank you for this link to your doctors web site, this is the kind of information I've been looking for. I am a Kaiser Permanente member out here and cannot see anyone outside their group of physicians unless I pick up the entire cost myself, which of course I cannot. I thought that maybe I can copy some of this information for the NS I saw. He discounted all of my symptoms that I have, yet your doctor has most of them down as often seen. We do have a university hospital out here that has a Chiari clinic that I wish I could go to. Cheryl
Mary Lou said:
Dear Len Te:
You are not alone with your symptoms and pain. I am a patient of Dr. Dan Heffez from Milwaukee Wisconsin. I just had my third surgery with him just approx. 3 1/2 weeks ago. I have had to go through so much over the years as well. I want to encourage you to please go to Dr. Heffez's website....he seems to have just updated quite a few things there......He is an amazing NS and has dedicated his work in helping folks like everyone here. His website is very educational and I think it could help you.... also read people's testimonies as well.
There are some studies that he has listed on the bottom of the website.....
God bless you,
Mary Lou
Dear Cheryl:
I am glad that you received my little info for you.....Dr. Heffez has been taking care of people like us for approx. 16 years....
It would be wonderful if you could go to the Chiari place out where you are.....do what you can.....you will learn alot just by reading what Dr. Heffez has put on his website.....Unfortunately.....alot of doctors are not trained too well and don't understand Chiari very well.....If you have had an MRI.....you could ask for another copy and just contact Dr. Heffez...and he would probably look at it and just let you know a little more what is going on....just a thought....
Sincerely,
Mary Lou
THANK YOU SO MUCH EVERYONE!! MY HEAD HURTS TOO MUCH FOR IN DEPTH READING, TODAY, BUT I AM LOOKING FORWARD TO READING ALL OF THE INFORMATION YOU ALL SUGGESTED! THIS SUPPORT IS A TRUE GIFT, AND I CANNOT THANK YOU ENOUGH!
CHIARI HUGS!
LENNI
I know the feeling! I thought I was the only one. I had surgery in 2007 and all of my symptoms are back. Every day, all day! The surgery did nothing! (although my neurosurgeon insist that he "cured" me). He thinks my symptoms must be from something else. Yet my most recent MRI (and MRI's before that) consistently say "persistent chiari malformation". I've tried the Botox - they didn't work. Nothing has. I've seen 3 neurologist since my surgery and pain management. I can't take pain meds. They make the headaches worse. The one neurologist that was making headway - retired! Go figure! So, I really do know how you feel! I wish my doctors could see me at my worse too. That way they would "get" it! The only thing I can tell you is to keep searching. I found an article once that explained it very well! (I even made copies to take to my bosses at work so they would know what I was going through everyday!) I'm sorry I don't have it anymore and don't remember where I got it. Keep looking. It's out there. (I think I got it from a Chiari group on Facebook) Best of luck to you!
Trae
To Trae and anyone else that wants to read this:
I suffered for many, many years with not knowing that I had Chiari malformation......finally by the grace of God I was diagnosed...but had kind of figured it out myself...when a friend of mine was diagnosed....
through a google search.....I found Dr. Dan Heffez....... I was a little more complicated patient.........all I can say is
please go to Dr. Dan Heffez's website.....he has just updated the information.....
www.wichiaricenter.org I had to travel long distance back and forth to him to finally help me.....He is wonderful and is used to hearing stories that everyone on this site is expressing......also please read the testimonials on the website too....this will help you......
I am praying for everyone on this site....
God bless,
Mary Lou
I'll add my two cents worth...Dr. Heffez & his staff are amazing. Not everyone likes the same docs & not for the same reasons; so, do your research. Ask questions, be informed. No, the surgery is not a cure & any good chiari specialist will not tell you that it is. Nerves are tricky lil buggers...they like to do what they want, but, having surgery was the smartest thing I have ever done. Wishing you well on your journey!