I got a call from the neurosurgeon's office, instead of the December 23rd appt, I will now be seeing him on Nov 25th. That makes me happier. I wished they would of done this to begin with.
I have my carotid sono set for Dec 4th. I had to get a hold of the heart doc myself since I was promised a call back and did not get one. LOL. The lady apologized to me. This test is being ordered by my neurologist.
Slowly as some of you stated, it looks like I am getting a good team together. Brings me some peace. :) I hope you guys are all having a relatively wonderful day!
Ugh, don’t you hate having to do everyone’s job for them?!? I just assume that people will get around to my stuff whenever they feel like it, so rather than expect anything I have just chosen to do the work for people.
The neurosurgeon appt went well. He said that they don't typically do surgeries on people in their 30's unless symptoms are really bothersome. Which is fine by me. I wasn't wanting surgery. He is going to send me in for an MRI on my neck, I think to check for the syrinx? I told him about the pain in my spinal area and lower back but he said that seemed more of a fibro related thing but did confirm that I did have mild scoliosis. So basically unless something shows up in the neck MRI or my symptoms really become bothersome then I guess I do not need to really make a follow up with him? Not sure what you all think about that. I am new to the whole chiari arena but I did tell him I only had a brain MRI, I have no idea what might be in my back or neck area.
I had one question. There is a girl in one support group online who seems to rant and rave saying that no one with chiari should be on any type of medication and that regardless if its a neurologist or neurosurgeon they don't know what they are talking about. Her ranting and raving and just general disrespect towards members (she calls them names and puts them down) stressed me out so bad, I left the group. It actually kept me awake one night and had me afraid of the outcome in life with chiari. Thing is when I have the horrible headaches, if it weren't for something to calm them down or to at least make me sleep, I don't know how I would cope! Do you guys agree with this girl? I don't. I worry about the safety of others and would hope they would honestly seek out more information before they would listen to one womans rants over their own medical docs or ask other members with just as much knowledge. It just blew me away.
It's good that the NS is checking for a syrinx. If you are free of that and can manage your symptoms then waiting could be the option for you!
As to meds...everyone is different. Personally I never found anything that helped my symptoms and also I'm very wary of side effects and the potential for addiction. However if you have meds that help and are well controlled then I see no harm in that. That's a decision between you and your doctors. That lady seems really out of line! Everyone copes differently and there is no one treatment plan that works for all of us!
Jenna, sorry that jerky upset you. Don’t know who and don’t wanna know, I just think A person shouldn’t have to seek a support group for unsupportiveness that happens in another support group. She sounds like maybe she’s a little unhinged. What ever we choose it should feel right to us. If you have a med that helps that’s a blessing. Glad your NS is getting full picture.
That is great that he's ordering some tests, if nothing else to put you at ease! And if your symptoms are manageable, then I would definitely hold off! I look at it as a last resort. That being said, if a medication alleviates or prevents some of those symptoms, you're not pregnant or nursing, and the side effects aren't extreme, then they are far less invasive than surgery would be. Many people believe in a holistic approach which may be great for them, but may be useless for others. On sites like those, I will share my opinions, but what works best for me is not what will work best for everyone else!! For me, surgery was necessary to control the long-term quality of life. BUT it did not alleviate the need for medications. The only place I would agree about no medication is the long-term use of narcotic pain medications or those that cause liver/stomach problems. If you rely on high powered pain medications or dangerous medications to control symptoms, I would ask to re-evaluate things being "under control." Short of that, if medications work and you're not miserable 50% of the time, then continue doing what you're doing!
I would ask for all of your images on a disc in the event down the road that the surgeon you saw isn't there, you move, that facility closed, etc. you will still have access to them. ((It's neat to look at them at home too! :) ))
It's ok guys :) No worries. I wish that the other group could take a page outta the books here about how to be kind and helpful. This group was the first one I joined when I first learned I had chiari and I was scared but I wanted to learn more. You guys have always been very kind to me. This is my absolute favorite support group and I appreciate the warmth, compassion and understanding you guys give me and each other. Sorry if I am not on here as much as I would like to be. We have been having problems with our internet here. Frustrating lol. I hope you all had a wonderful Thanksgiving and enjoyed your holiday with your family and friends. I did. I didn't have to cook Thanksgiving dinner this year. My mom took my brother and I and our families to Golden Corral. Then after we went Christmas shopping for my niece and nephew. She bought me a brand new Christmas tree. I am struggling to get my house in order because while no one is going to make me cook, we are having Christmas dinner here at my new house. I am looking forward to that. My mom and sis in law said they would cook the dinner. Phew! Cooking is a lot of work but its harder when you don't feel good.
Aww this was so sweet. Thank you Abby :) Your comment made my evening! I will do my best to pop in more. As long as the internet holds up and we are not on an outage for 6 hours. That's been happening a lot lately out here in our neighborhood. I enjoy this group a lot. And I feel bad when it takes me so long to reply to you all. :(