Hi and thank you for answering. Unfortunately I have been to the ER for the side effects of lyrica, compazine, neurontin, cymbalta (in which I have severe reaction to - break out and everything) and I am also allergic to or have an intolerance for morphine. We have tried physical therapy and even the therapist found that PT is hard on me and it puts me out for days after each session. I don't know why. I have been evaluated for depression and have been found to not be depressed. I actually am a very happy person other than getting ticked about my health and it not getting better. My back pain - is surely not related to it nor fibro. I just know because of the extent of it. It is agonizing to the point of screaming. Hurts sitting and with certain movement. The pain in my legs is getting worse with it. (the leg pain could be due the the blood flow problem I have though).
I went to an opthalmologist the last time for my blurriness when I went through this and he said I needed to go to my neurosurgeon again because it could be related to my chiari.
Thanks again.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
An Arnold-Chiari malformation is a developmental brain abnormality in which part of the brain known as the cerebellum herniates (goes down through) a hole in the skull known as the foramen magnum. These types of malformations may cause symptoms if the herniation is severe enough, but if the herniation is not severe, and complications of chiari malformation or associated malformations (tethered cord, syrinx) are not identified, and/or if the malformation has been corrected surgically, then neurologic symptoms that are occuring, such as headache, back pain, blurry vision may not be related to the malformation, the malformation may rather be incidental.
It sounds like you have had a lumbar puncture and imaging, and if no identifiable structural problem is identified, than more than likely the chiari is not related to the symptoms. Chronic headaches are very common in patients with Chiari malformation, and should be treated with preventive headache therapies by a local neurologist. Depression is common in patients with chronic pain and in patients with Chiari, and can lead to physical symptoms, and should be identified and treated. Another common condition in Chiari patients is the condition fibromyalgia, which leads to whole body pains, and is best treated with medications such as lyrica and neurontin, exercise, and physical therapy.
Continued followup with your physicians is recommended. For your chronic headaches and back pain, you may benefit from evaluation and treatment in a chronic pain program, of the multi-disciplinary type that includes a neurologist, psychologist, physical therapist, and other experts. Evaluation by an opthalmologist (eye doctor) is also recommended.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
pain is in both legs now really bad. It is not sciatica, I know this because after my brain surgery I had sciatica and this is not like it at all. :(
part 2:
This is worse around my spine. The pressure is awful and sooo uncomfortable. I cannot find a comfortable position. The pressure has been there for a good long time but as I said it is worse now. Nothing is helping these symptoms. I was scared at first it was my bowels or kidneys. But I guess if it were one of them it would have shown up on my routine blood work last time. Well I wondered if this could have anything to do with my Chiari. Also when I got my last spinal tap done I told the radiologist about it and asked if it could be to do with a previous tap I had done several years ago. He said it was not because of where the site was. He told me I needed to get it checked out further. Well I tried but still no one says anything. They skip right over the subject and I am left in the dark. I worry. Then someone told me that it could be tethered cord (although I dn't think it was seen on the last MRI) that it might not be showing up. See my brain/occipital MRI shows that my chiari went back the way it was before surgery - so very low lying cerebellar tonsils and crowded etc...
Anywho, I still have the symptoms of all that still (the pain in the neck, the constant head pain and migranes, and the list goes on of my symptoms. Okay back to the back pain/pressure: It is now going down my side and spreading it seems - anyway now I am having extremely blurry vision. Even with my contacts in which I have changed them 2 times in the last 2 days. With them out my vision is sooo much more blurry than usual then too. I have recently been to the eye doctor so I know my prescription is correct. My symptoms are all the same as usual. I still have the symptoms I have with my heart issues and the tachycardia...so that is not different. I just need to know what this horrible pain/pressure is. I am sooo tempted to go to the big city to the ER. I am soo sick to my stomach - yes like throwing up and nauseated. I don't know what to do. I hope you can give me some insight. If ou need more info please let me know. Sorry if this is not clear - for my head is in pain, cant' concentrate well and the pain in my back is awful.