To have Surgery or To Not

[sleepypea]

Hi, It's been a while since I've posted here. Over the past year I have been seeing a new Neurologist who is convinced all of my issues are Chiari related and has said I am wasting time by not already having the Decompression surgery. He hasn't performed any test except the typical neurological exam in his office which showed weakness on my left side as well as numbness all over. He ordered a current MRI (Brain) It shows the same 7-8 mm "Cerebellar Ectopia"
I do have typical chiari related symptoms however there doesn't seem to be a syrinx.  in the past I have had a full spine MRI. I also don't seem to have any compression. I had a flow study done in 2010 that showed flow everywhere except in the 4th ventricle. I got mixed opinions about why I would have no flow there. No one around here seems to know what that is or how to go about ordering a recent one. I can't just go to other Dr's because I have terrible Insurance so very few will even see me. He ( The NL) has referred me 3 times to a Neurosurgeon with STAT on the referral and I still have not heard from them. I went back to the Neurologist last week for a 3 month follow up and he was very upset that I had not already seen a Neurosurgeon. He said he didn't want to see me anymore because I need surgery and he can not help me. I have seen several Neurologist in the past and most are the exact opposite and try and blame my symptoms on everything except Chiari. I ask him how am I to know I need surgery when the MRI doesn't show anything except the ectopia. He explained that I am compressed it just doesn't show on the MRI but guaranteed me that if I had the surgery that they would indeed find a problem. This bothers me because I would really hate to have a surgery that I really don't need. Granted I am miserable and would love to live a normal life again, but I want to know I do need it and will benefit from it before I decide to have it. I have seen a Neurosurgeon in the past who offered me the surgery but I declined because he wasn't a chiari specialist. I guess my question is how many people on here have had the surgery with only the herniation showing but no syrinx or obvious obstruction to flow? If you have, have you benefited from it? Thanks in advance!!

[linnielou232]

I am so sorry to hear of this.  I do know that you can get the test done that you need in your state (The test you need) and as Selma mentioned you can send it out to specialist and at least see what their reply to the test would suggest.  Also I know others have had surgery on grants that specialist will do the surgery on certain candidates.  I know how flustrating this journey can be, but I also suggest not just going to any surgeon to have this sugery done.  It is a serious issue.  I also have to say some have the surgery and they come out with good results and some of us have the surgery and we still deal with issues.  Sad thing about having Chairi is once being Dx'd we will always be a Charian.  I now suffer with nerve damage and nothing I can do but deal with it.  As the NL suggested my MRI didn't show everything, but once being in there I had also more lesions and blockage, so this is a tough decision.  I wish you the best.  I know this journey is hard for most of us, but know we are here and we understand what you are going through.  Sending a smile your way to hopefully brightening your day.
Linda :)

[sleepypea]

My NL is sending the referral over to a Group of Neurosurgeons in Gainesville, Fl. I'm not sure if any of them are Chiari specialist but I doubt it. As far as I know the only listed Chiari specialist in Fl is Dr. Green in Miami. There is one in Tampa too but they won't accept my Ins. Oddly enough the NL I am seeing said he use to work with Dr. Green in Miami which is why he was so certain that this is my problem. When I ask if I should try and get an appointment with Dr. Green since he is a specialist in that area he told me no it wasn't necessary. He said any NS could help me. Honestly I think he's just trying to push me off. I did have a new MRI but was not able to get the CINE MRI done. The town I live in does not do them and when I mentioned to the NL that I had one in the past in Gainesville he acted like it was unnecessary and that he knew that was the problem so I just needed to book the surgery ASAP! Honestly I think because I have bottom of the barrel INS it just wasn't worth his time to investigate any further. The NS I seen in 2011 at Shands at UF said he would perform the PFD surgery but I was scared to let him because he didn't seem experienced to me.The problem with sending my scans out of state to be reviewed is even if I am a candidate my Ins doesn't cover outside of Fl and I do not have the money to pay out of pocket. I'm getting desperate and am thinking about going back to Shands and letting that NS do it since he offered and I am miserable. I just wish I could find a Dr who would take my Ins and order ALL of the test I should have before making that decision but no one will. They act like its costing them money to do it. Medicaid has gotten so difficult now on approving any testing that the Dr's just don't want to go through all of the red tape to order them. Unfortunately Medicaid is my only option I simply just cant afford anything else.

[selmaS]

  Hi and welcome back !!

First, u can send copies of ur MRI to chiari specialists for review, some charge a nominal fee while others do it free in hopes u will be a patient.

May I ask what NS's this NL referred u to see? are ne of them true chiari specialists? or does he just want u to go have surgery?

Did u have ne new MRI's....u mentioned a CINE in 2010...how do they know if things changed?