Chiara Malformation Husband SUFFERING TERRIBLY NEED HELP PLEASE
My husband has a chiara malformation he had the decompression surgery 2 years ago. He was 90% symptom free for almost two years. Now his symptoms are back worse than before the surgery! He is such severe pain with his head with headaches and pressure, tingling in his fingers and toes, throwing up he barely functions. We have moved really far away from where he the surgery so a gp did his mri and had no clue what he was looking for. I sent his mri and all the info to the surgeon who helped him to years ago. They have in on every pain med you can think of non of them are really working. I feel so helpless. He looks so horrible. What is going on with him? Has anyone had the decompression surgery and then had the symptoms come back worse? The pain is 24/7 with pressure! I'm terrified for him.I don't no what to do and no one understands the pain he's in. He is 6'4 and 260 pounds and he cried himself to sleep last night. What do you do when the meds aren't even working? I fanyone has a clue what's going on please write back to me so i can help my husband...
Re: Chiara Malformation Husband SUFFERING TERRIBLY NEED HELP PLEASE
It sounds like you need to see a neurosurgeon near you. Your GP may be able to refer you, but don't hesitate to self-refer if the GP doesn't seem to be helping you.
Re: Chiara Malformation Husband SUFFERING TERRIBLY NEED HELP PLEASE
Did his surgeon respond yet? I would be concerned he has developed hydrocephalus, a significant rise in cerebral spinal fluid pressure. If he is vomiting, severe headaches, visual disturbance? he likely has increased intracranial pressure and may need a shunt placed to drain the CSF if it is blocked. Please get your husband to a neurosurgeon with the MRI (is that since these symptoms recurred?) or to an emergency department in a hospital big enough to have top notch neurosurgeons, even if you have to travel to a bigger city. If the CSF flow is blocked, this is very serious and needs to be fixed ASAP. If he shows up in an ER, they will have to take care of him NOW, where with a referral, you could have a long wait for an appointment. He needs relief and immediate care!
Re: Chiara Malformation Husband SUFFERING TERRIBLY NEED HELP PLEASE
I am so sorry to hear about your husband I think it was a good first step to send the MRI to the original surgeon. Maybe you can take the MRI to a neurosurgeon in your area- someone who knows what to look for.
You mentioned your husband is 6'4"...has he ever been screened for Marfan Syndrome or other connective tissue disorders? Just a thought.
Chiara Malformation Husband SUFFERING TERRIBLY NEED HELP PLEASE 
I think it was a good first step to send the MRI to the original surgeon. Maybe you can take the MRI to a neurosurgeon in your area- someone who knows what to look for.
