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When to look into surgery?
I was diagnosed 17 months ago. I have been able to control all my symptoms by medication up until now. Something has changed. I have fluid in my ear that the ENT won't drain even though it is clear for possible brian leak. It flared up and I had fluid all along the base of my skull and an egg shape fluid pocket that came up at the base of my skull. I have had should nerve pain down to bottom of the shoulder running from my neck or base of my spine since the fluid scare. The pressure was and is rediculous. My doc put me on prednisone and mobic along with a MRI f/u. I got the call back from my internal doc that there were no new findings on the new MRI. (brain and Cspine) no snine or sitting MRI was ordered or thorasic.. not to mention alll of the other lovely symptoms that go along with Chiari and since my diagnosis I have also been dx with POTS and EDS during this last year. I know the decision is mine. I really don't want to have the surgery. But my symptoms are gradually getting worse. Please help guide me...
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COMMUNITY LEADER
Hi and welcome to the Chiari forum.
As SilentSong mentioned it is different for all of us, and u really need to know how this is affecting ur overall health as well as the symptoms u r having.
Surgery can make matters worse and it can help relieve some of the symptoms, but there is no way to know b4 surgery, unless u have all the testing done, and since u have EDS u deff want to see what else is going on as us EDSers heal slower, and can develop new allergies to meds and reject foreign matter so we need to use our own pericardium instead of the other dura patch choices.
Like SilentSong, my symptoms affected my life to a point I could no longer ignore it, not that I had not had pockets like this over the yrs, I just was not able to get a dx and know what the issue was, and things did get progressively worse. I had a drop attack in May '07 and that fall required 2 surgeries to repair damage on my right knee and right ankle I also had a severe sprain of my left ankle....my knee surgeon felt I had lupus, and it was in my medical file as borderline, so he sent me for testing which reveled my Chiari in Feb '08 then I was on my journey to locate a chiari specialist....and I went to a conference in Aug of '08 and was not happy with several I met with until I went to TCI....again it was my choice to have surgery or not and 3 yrs later I know it was the right choice for me.
Only u can know if and when is the time for u, but do take time to research diff Drs to find the right one and the best one for u,
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My other deciding factor was whether or not it was getting in the way of living every day life. As long as it did not effect everyday life, I was okay with out it...as soon as it started interfering on a regular basis, I knew it was time.
Another aspect had to do with where I am health wise right now....I knew that considering where I am right now I would probably heal faster now than I would later....
So I would ask yourself the following questions:
1. Do my symptoms effect my ability to do normal, every day things?
2. Even if I can manage those symptoms right now, will I be better off in the long do it now?
3. Even though it may hurt right now, will getting the surgery done now help prevent the possibility of more difficult to manage complications in the long run? (I.E. while I did not have a syrinx, I was at a high risk of one....the surgery helps lower that risk)