So I'm in airport waiting to fly home to FL from my 1st Chiari Specialist Appointment with Dr. Ghassan Bejjing of Pittsburgh,PA. He was surprisingly personable. He took his time talking to me and my support team (my parents)
He said severe headaches are why people have surgery. From what I've read online and heard from this group is that not everyone with bad Chiari's number 1 symptom is headache. And he said memory loss, back pain and all my symptoms can be from something else. I showed him my extensive blood work and test from over the years that have ruled out other things. Besides Fibromyalgia but from what I understand it's a disease that's associated with Chiari not if you have Fibro then you can't have Chiari.
He did NOT do another MRI. He just went off the report, really didn't look at the MRI on the disk I brought him. He ordered an MRI of my neck and lower back to check from syrink. (excuse my spelling) The MRI showed arthritis, scoliosis , several bulged disks but no syrink. So he said it was up to me if I wanted to have surgery. That people with headaches have over 90 % success rate of feeling better and less chance of something going wrong like infection. He said bcuz I don't have the headaches I'm in a different group with just a 70% chance of feeling better after surgery and a little bit higher risk of something wrong.
He then sent me to a Dr. Ong in Monroeville (just outside Pitt) to talk to about all my symptoms and rule out that it could be anything else. So I saw Dr. Ong today and now I feel like screaming. He wasn't ready for me at all. He wasn't even at his office on time. He didn't have the MRI reports from yesterday. So he took the next patient before me , till he received the stuff.
He then came in and asked me about my headaches. I explained to him I'm not here for headaches. I'm hear to see if my back /body pain and memory loss could be from something else. He said Chiari doesn't cause memory loss.
Seriously where do these doctors get their info? Memory loss IS common amongst us , it just seems like word hasn't gotten out to the doctors!
Needless to say that appointment was worthless. I'm scheduled for a 2nd opinion with Dr. Jon Weingart of John Hopkins in Baltimore next Thursday but I'm hesitant to go any further. I don't want to "waste" him, mine and my parents time if "my chiari" is not a problem. And I HATE that there is not a clear answer. I don't want or know how to make the decision if surgery is right for me. Has anyone that did NOT have bad headaches but other symptoms go through a similar situation? Anyone without headaches have surgery?
ANY feedback would be very much appreciated. I feel defeated and confused. I am SO lucky to have found this support group! Thanks to everyone who's talked to me and made this journey easier and less lonely!
Have a wonderful,pain and stress free weekend!!
Headaches are not my worst symptom and I am having surgery on the 15th. I see Dr. Ringer at the Mayfield Chiari Center in Cincinnati. He said that it is surprising to see someone with so many symptoms and no syrinx but that my CINE shows abnormal flow and that my symptoms are all classic chiari. Him and the other staff doctors agreed that nothing in my records indicates another cause. Trust me I've been tested for EVERYTHING!
I believe Diana Smirl (she has the Wow one year post op post) has also said that headaches were not her major complaint. She has had good results from surgery and is very helpful for advice too! :)
Please do not feel defeated and confused. I am glad he was personable for you and your parents. From my experience, with him, he wants to rule out everything first prior to even recommending surgery. He told me to follow up with Dr. Ong as well. I never made the appointment, I know a terrible thing to due but I actually like my local neurologist.
Anyhow hitting on some of the other points you mentioned and in comparison to that I have read that others have experienced, my migraines/headaches were not that bad or debilitating until after I had my cervical fusion in March 2012. So I guess I somewhat fall into your second category. Anyhow the memory loss can be from the Chiari as well as the other symptoms listed. All of us suffer such a variety of symptoms, I know the classic symptoms but some of us lack on all the classics as well.
With Dr. Weingart, (I can not recall if you already had one done, but see if you can get him to order the CINE MRI), he might see things differently. He may recommend the surgery. Another thought is that though they are "experts" in the Chiari field some other "expert" learns something new everyday and it is up to the other "experts" to see if they agree with something new or carry on the way they have before and let the their reputation stand on their own.
I know it is easier said than done, but please try and be patient, many of us have been there before and walked in nearly similar shoes along the same path.
AS Emmaline said too, please look up Doctor Trumble (on this site), he is knowledgeable and from the posts I read from him, he is one of those rare doctors who wants to help to the best of his ability. Also sorry I missed you and your parents as I am not to far away from Pittsburgh, but maybe another time. (Yes there are times I miss being in Florida).
The others also gave great advice. remember we are here to support you on your journey and with the choices you make becasue ultimately no matter what we say you are the one who has to make the final decision. With that final decision we will be here for you no matter what it is.
You and your parents have a wonderful, painfree and stressless weekend as well. Please rest and recover. Praying for you and your family.
I wanted to say that headaches are NOT my chief,biggest, or most troublesome symptom. Most of the time, I have a teeny one (maybe 1 on the pain scale), and then a few times a month I get a bad one. I have head pressure, but just not the headaches. When I saw Dr. Oro this REALLY threw him off and I became a "puzzle". Haha...not what you want to hear from a brain surgeon. The headache issue must be a big deal because I felt like from his response it warranted him focusing more on a possible pseudotumor than the chiari. After all the tests eliminated a pseudo, then he scheduled surgery.
It is obvious from reading this board that many of us dont have horrid headaches. Obviously, I disagree with a doc that says without headaches it prob isn't Chiari...really??? If I would have said I had bad headaches when I saw Dr. Oro, it would have been a game changer right then and there, but of course I wasn't going to lie - Obviously headaches often have some kind of Chiari slam-dunk effect or something...
Sorry if I am rambling. I just DONT want you to feel defeated. Believe me, after my first visit with the NS, I felt like he didn't believe it was the Chiari causing all my neuro problems. In actuality, it threw him off, and he tested for other culprits of my symptoms with the outcome pointing right back at my Chiari.
Don't give up and do know that we all hear and understand you. I have often wondered if I just don't have horrible headaches "yet". Maybe give me another year if the Chiari hadn't been discovered, and I would have them. We are all different and just want to get well, whatever that takes....stay strong!