ok... SO I have had my c-spine and CINE mri.... results~ 6mm (which is 2mm larger than my first mri i had in Oct so it is growing) herniation and a dorsally pointing den with narrowing in the cervicomedullary junction, my symptoms are only getting worse. I have a headache within 30-45 mins of waking up, dizziness, numbness and tingling in my arms, blurred vision, my hands are weak (i cant even open a jar on my own) cant find my words alot of times, memory problem... and the list continue. So my NS says that the cons of the decompression surgery out weigh the pros and i just need to manage my symptoms... i dont feel like that is ok... Am i crazy ... am i digging too deep???
With all this being said, i have strongly considered making the trip to go see Dr. Oro... Can anyone give me any insite to him and his center... was it well worth it? ANY INFORMATION ANYONE HAS WOULD BE HELPFUL!!!
I went to see Dr. Jackson in Dallas...He didn't look at my scans, reviewed my report and sent me away. Went to Dr. Oro..who I liked personally, but he put me through a gamut of tests..he has been supposedly re-reviewing my chart for over 2 weeks now...I've had no call back..and he tried to treat me for PTC....which he ruled out ...I think he's too busy. I also would like to say..he's a "borderline" guy...he said mine is "borderline" like 5 times. I was disappointed bc I wanted someone to look at more than the herniation size (my last scan said 5-6). I went to Dr. Kim in Houston this week and loved him. He found an arachnoid cyst that is also pressing on my cerebellum... AND ...his office worked me in bc I was a Chiari pt. I saw Dr. Madan first, then Dr. Kim. You can google him, Dr. Dong Kim, Houston, he has a chiari webinar online. He is not listed on this forum as an expert. However, he is listed on the International Chiari Assoc. website as a specialist.
I feel I wasted time with Oro..not a popular thought on this site..but just being truthful.
I agree with everyone. You should see another NS for a second opinion. I always encourage everyone to exhaust the Chiari Experienced NS in your area before traveling great distances. I recently found out I had POTS. It has many of the same symptoms as CM. Have you seen a Neurologist or Physiologist just to rule out any other medical issues that may be contributing your symptoms?
I value every Members opinion. Not ever person is going to fit with every Dr. no matter how many people like or dislike him or her. Please don't think this forum favors one NS over another. That definitely isn't true. When you are a Moderator we hear some very interesting comments. We just ask that no one makes negative public remarks on this forum about any Medical Provider or Facility. It's kinda like a running joke with me a some others....but I saw 52 Specialists before I was correctly diagnosed & I was in the Medical Industry. There were two specific NS consultations, where I am glad I was raised to be a Lady because it took a lot of self control on my part to just stand up and walk away. I am glad you spoke up. Please please never think this forum promotes certain Dr's. I know incredible ones over the whole US & try to get Members to see ones closer to home rather than ones they have to travel to see.
mmrobinson said:
I went to see Dr. Jackson in Dallas...He didn't look at my scans, reviewed my report and sent me away. Went to Dr. Oro..who I liked personally, but he put me through a gamut of tests..he has been supposedly re-reviewing my chart for over 2 weeks now...I've had no call back..and he tried to treat me for PTC....which he ruled out ...I think he's too busy. I also would like to say..he's a "borderline" guy...he said mine is "borderline" like 5 times. I was disappointed bc I wanted someone to look at more than the herniation size (my last scan said 5-6). I went to Dr. Kim in Houston this week and loved him. He found an arachnoid cyst that is also pressing on my cerebellum... AND ...his office worked me in bc I was a Chiari pt. I saw Dr. Madan first, then Dr. Kim. You can google him, Dr. Dong Kim, Houston, he has a chiari webinar online. He is not listed on this forum as an expert. However, he is listed on the International Chiari Assoc. website as a specialist.
I feel I wasted time with Oro..not a popular thought on this site..but just being truthful.
GLad to hear you,re looking into another. Dr. Sounds like the one you,re seeing is not a specialist on this field.AFter 27 yrs.I just had surgery 6weeks ago and my chairing was concidered boarder line,when all was said and done things were worse than could be seen on the M.r.i.YOu are certainly mAking a good decision.Good luck be checking in to see how things go.
My first appointment with a neurosurgeon was NOT a success to say the least. He suggested pain management, although my symptoms were extreme and similar to yours. This is the time for you to follow your “gut instinct.” You have a voice in this process, and if you feel that one particular NS was not listening, use your voice with another NS. Don’t stop until you are satisfied that your voice has been heard. Also remember, a good NS does not necessarily need to be associated with a major hospital or university. My NS, who saved my life, has a small practice. He is not associated with a major hospital or university. My advice to you would be to keep an open mind, and use your voice. Best of luck to you. You will be in my thoughts and prayers.
Using your voice is the biggest and best thing you can do. Great advice..just keep on until someone listens..eventually someone will...I just saw my 7th doctor since September...and he listened.
Southern_Belle said:
My first appointment with a neurosurgeon was NOT a success to say the least. He suggested pain management, although my symptoms were extreme and similar to yours. This is the time for you to follow your "gut instinct." You have a voice in this process, and if you feel that one particular NS was not listening, use your voice with another NS. Don't stop until you are satisfied that your voice has been heard. Also remember, a good NS does not necessarily need to be associated with a major hospital or university. My NS, who saved my life, has a small practice. He is not associated with a major hospital or university. My advice to you would be to keep an open mind, and use your voice. Best of luck to you. You will be in my thoughts and prayers.
Thank you all for the advise... I am just fearful of rejection from yet ANOTHER Dr... telling me to "manage my pain and symptoms". I have developed a cough which I am learning is basically like a hammer to my head... OMG I now remember when i was a teenager feeling these type of headaches when I was sick but just figured it was from the cold. This morning I left for work and realized I forgot my meds and contacts... I am becoming very forgetful... forgetting daily processes at work... this is sooo frustrating
I have a lot of thinking as far as what is my next step...sometimes I just want to scream ..... ahhhhhhh... does anyone else feel this way... so I guess I find another Dr. and start my process over ... good thing is I have had my scans ... I have my disk and my reports from everything...so at least I am up on that step right?