Ive been here reading a lot on the differences and it makes me so apprehensive a out my appointment on Wednesday. If he behaves like some of you have been treated I’m going to have to mount him on his blood pressure roller and send him on. I’ve been in pain and my mind is crumbling by the day. I’m going to start forgetting my name soon ( I know thats dramatic but come on six months in pain and not remembering anything short term is wearing pretty thin). So now I’m starting to prepare for the fact that this might be some wasted time and I cannot tell you how angry if I get sent home ONCE AGAIN by a different Doctor with no results or game plan. Tell me how your experience was with both did any ever have a ns take you seriously and what can they do to stop this? What is their role in my process? Are there alternative treatments that are successfully done without surgery?
My go didn’t find it I was sent from my go to my pulmonologist for pneumonia that would not go away after two months he had it ‘under contril’ he then sent me to a rheumatologist because of my sever pain in my head neck and the whole right side of my body also my memory was beginning to fait and I had a herd time putting words together and my vision went from bad to horrible literally overnight, and the right side of my body is getting weaker from week to week oh and my blood tested positive for Ana, so off the the rhuematologist who draws more blood X-rays and adds a brain MRI this showed that I have chiari with a syrinx I can’t remember the size of the am.lformation but I do remember that the syrinx is at my c3 and so he has sent me to the neurologist… In between I saw my pulmonologist again last week and he told me he spoke with the rheumatologist and they suspect I have another syrinx lower in my spine. So I have to keep my nl appointment but the doc did up the pain meds until I’m seen. So that’s the history :)). I am in the San Antonio area but have family in the dallas fort worth area so I would be happy to travel if it was an experienced doctor my rheumatologist has already discussed with me about the possibility of traveling for the surgery. The good news is I don’t have ms which is what they were originally testing me for:))
I'm almost at the six month mark too, I know how you feel. Seeing doctor after doctor, no one willing to help you. It makes you feel like you're at the bottom of a dark pit and no one will send down a rope to help you out. I'm still searching... I hope your appointment goes well!
Surgeons will cut. We are trained to use knives for cures, not medicine. Most neurosurgeons would expect the patient to have seen a neurologist to achieve maximal medical management prior to consideration of surgery. However, most neuro specialists know little about Chiaris(whether they are neurologists or neurosurgeons). Some patients will improve with medical management(although if the symptoms are truly coming from the Chiari, only surgery will fix the anatomy).
Throughout this site, you see and hear the frustration of dealing with a difficult diagnosis. Part of the process of treatment often requires traveling down a few cul-de-sacs before ending up with surgery. Surgery can fail also.
There is no simple answer. I alwasy suggest patients keep moving forward, trying different treatments(based on medical recommendations).
Of patients who have achieved maximal medical management with ongoing symptoms(head-aches, weakness, sleep apnea, swalooing difficulties, etc), about 80% will get about 80% better in my hands. Some anatomical findings(greater cerebellar tonsilar ectopia, no flow on cine studies, syrinx) increase the likelhood of surgical success.
All I'm saying is, remember that surgeons like to operate. It's what we are trained to do. It should never be the first choice in head-ache management when a Chiari is seen(again, barring other anatomical findings). That can lead to some delay in patients who truly need surgery but it also reduces the number of unneccessary surgeries.
Thanks for all the information. I suddenly feel so calm and ready to take whatever I need to do to get better. I personally have a lot of issues with this the pain is bad but worse is the memory, confusion and disorientation. I sooo hope I find an understanding doctor who won’t mess up my hair :))