It has been quite some time since I have posted on here. I am still recovering from Decompression surgery (Dec. 2nd). I ran in to a friend in the ICU the other day and she asked about my surgery. She too has Chiari Malformation, but has not seen a NS yet. It was eye opening to listen to her symptoms. When all of my symptoms started, the most annoying was the pain in my face and the burning (all left sided, till recently). I also have/had awful pressure behind my left eye. It makes it difficult to see and function because it makes me feel like I am on a boat, swaying back and forth. My NS says that it is NOT Trigeminal neuraligia. I do not know STILL what it is. No one seems to want to label it, even though it is one of my biggest issues.
Just curious if anyone else has had these symptoms and what your docs are labeling it as?
I thought after my surgery that things would get better. I was very hopeful. It has been a roller-coaster of emotions because not long after the surgery, all of my symptoms returned and the returned with vengeance. I know that with out the surgery, the syrinx would have gotten worse, but where is the relief?
I personally have a bent optic nerve & wear prism glasses to read & use the computer. Chris and I think Jojo have vision problems. All the symptoms you listed are CM symptoms. Does it have to have a dx or label? We all have pressure headaches (which we call Chiari headaches) or migraines that start behind one eye. I have them daily. It's like my head & neck is in a vise. I also feel dizzy , especially when I get up from a sitting position. It's very common post surgery. I think a lot of NS mislead their patients into believing... you will have the surgery and will be 100% healed. Unfortunetly, decompression surgery just removes the cerebellum that is blocking your spinal fluid from getting to your brain & in your case remove your syrinx. It is not a fix all. Most peoples symptoms are worse after they have decompression surgery. This is a very misunderstood illness. I am sorry you are having a tough time. We all understand and will be here for you whenever you need us.
Thanks ladies! I understand that Chiari is mysterious to those that do not have it. It is just the frustration that my doctors keep passing things off and sending me to see someone else. I am also having memory lapses. Which are very upsetting and frustrating. They thought at first that is was due to all of the post op meds. Well, I have been off of these meds for quite some time and I am still having them. I was hoping to find something that helps with the burning sensations also. None of my docs have been able to find anything that helps relieve that. Any suggestions? I am still refusing to believe that this is my life! I just want things to get better and find some relief.
Since my surgery my symptoms have gotten much better except for the leg pains and numbness and also the memory loss! I need to write everything down if I don't want to forget things because I always manage to forget everything. I can be told something and not remember a few minutes later...I also lack motivation and the leg and hip pains that I have make it difficult to do things sometimes (like grocery shop). I also hoped that the surgery would take away all my symptoms, but no such luck. I am happy though that the most severe symptoms (like headache) have decreased. Hang in there, things will start to look up eventually : )
I have what feels like a weight on my entire left side but really heavy in ear and eye. When I have my migraine it feels like my entire left side is going to explode and i cant stop crying. I've gone to the er when i have one of my migraines and they pumped me full of drugs and it took it back down to only the weight on left side again but that is always there.But I have not even had surgery yet...Im just started on the Chiari journey but have had this crap goin on for a long time but noone listened to me.... I am going to change my name for posts :) My real name is Christine
It's tough to hear, but give it some more time to determine what symptoms are better. My Decompression Surgery was 8 years ago. It took many months after my surgery to finally feel like my symptoms were getting better. After tons of test, I was diagnosed with Trigeminal Neuralgia 3 years after my surgery. It's definitely better than it was...it is difficult because I'll be on a med for a while that seems to help and after a while it seems to not be as affective as it once was. In fact my NS just switched my meds again this last Friday. They believe the Neuralgia is due to my Chiari. It took 10 years to find my Chiari and I waited almost 2 years before I finally had surgery. (18mm--you wouldn't think it would not take 10 years and dozens of MRI's before a radiologist finally caught it/or actually knew what it was!)
Even if there isn't a diagnosis, push the doctors to treat the symptoms. Unfortunatley you are your best advocate!