I went to an ENT for a whooshing sound in my left ear. It lead to having a MRI of the neck and head which they found Chiari Type 1. The report said I had a 9mm herniation. I went to see a Neurologist, told her about why I was there, I do have occassional headaches that are in the back base of my skull. Man do they hurt! I get them when I stretch for too long in the am, or when I exert myself too much and I have even begun noticing them after a very stressful day. The pain is pretty intense but I get through it. I also have some dizziness, I see eye floater alot, and the whooshing in my ears is pretty constant now. She didn't seem too concerned, said that Chiari Type 1 doesn't get worse and that my herniation will stay the same. She did refer to a NS though because she stated she wasn't an expert. Three weeks go by and I went to see the NS yesterday. He looked at my MRI and said that he could not believe that I don't present with more symptoms, that I am not in more pain. He measured my herniation to be 18mm and then proceeded to tell me that he recommends surgery. I was shocked by the difference between the two and now I am at a loss as too what to do? This NS is good at what he does, but should I wait to have more symptoms? His view was that while I have some less severe symptoms now, they will progress and that I should decompress now rather than wait for more damage. No one has mentioned a syrinx to me thus far. He feels that if I were to have any head injury with the herniation I have now that I would suffer greatly and be at risk for greater damage or death but if I decompress than I would be at the same risk as anyone else with a head injury. So I was just wanting peoples opinions that have gone through this what they would do. I have scheduled another appt with a 2nd Neurologist to get a second opinion and I also scheduled surgery for Jan 6th. I am just really overwhlemed right now and scared...
Well it is good that the NL knew her limitations and sent u on to a NS, BUT u want a true chiari specialist not just ne NS.
Chiari can progress from certain activities or a fall....
Did ur NS order more testing to make sure u do not have a syrinx,tethered cord, Ehlers-Danlos, PTC....or others?
U do have to remember that a NS makes money when he does a surgery...I am not sure u have enuff time to get a 2nd opinion by a true chiari specialist unless one of the 2 u have appointments with is indeed one.
U do need to ask questions of the surgeon....haw often does he treat this condition....what does he see as benefits for u....what type of decompression will he do....will he use a patch, if so what type?What is the typical ICU stay....and follow up procedures for that dr?
As for the difference in size of ur herniation...sounds like they were looking at 2 diff MRI's...and it could be they r bot measuring from a diff start point.
U have to be comfortable with ur dr and the decision...and yes to stop the progression now may help u in the long run, but all surgeries come with risks and u have to look at ur quality of life .
We do have a list of chiari specialists that members here have used and were pleased with.U need to research all drs to be sure they r true chiari specialists.
Thank you for your info. He wants to do the posterior fossa decompression with a C1 laminectectomy. He said that it would make me symptom free, even the whooshing. If it didn't then he would want to do an angiography looking for a distal av fistula.
He told me he does about 4 decompressions a month, at the same hospital there is a pedi chiari specialist that I may corner and ask him to look at my MRI and get his opinion.
I think they were measuring from different points because it was the same MRI.
I am comfortable with this NS performing the surgery what I hesitate about is if this is the right time. You make alot of very good points. I didn't ask all those questions, mainly because I wasn't expecting to hear that I needed surgery. I was quite shocked...
You know I could reschedule the surgery, it may be what I have to do because I obviously haven't come to terms yet, and a patient needs to mentally as well as physically ready for something like this right?
I had my Chiari Decompression Surgery Nov 24th this year and currently recovering from it.
My surgeon does about 4 surgeries a month as well and I felt comfortable with him. So far so good I'd say. But one thing he was clear about as was my second opinion, this does NOT cure Chiari and I'm concerned you were told that it was going to get rid of all your symptoms.Please know there is no guarantee there and you should understand it could cause other symptoms. My surgeon told me the success rate people have with the surgery and he said his main reason for surgery is the headaches and avoiding further damage.
Surgery is a big deal that should be thought out. Recovery can take a good deal of time depending on the person.
I feel the same as Jenny....there is no cure and they can not say all ur symptoms will be gone...especially if they did not check for other issues that could be causing some of the same or similar symptoms as chiari.
And u r so right ...u need to be in the right frame of mind as well as physically being in condition.
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