Feeling let down.....again

I thought that I was finally seeing the light of day but know I just don't know. I think thats the way most of us feel with our situation. Maybe I am just too impatient......maybe I just need validation......its been 9 months now and I have had nothing. The first neurosurgeon didn't want to treat me because I wasn't a candidate for surgery in his eyes, so I waited and collected my thoughts, did my research and came up with a NS that I think most of you think very highly of and scheduled an appt. Well of course you know that the appt was schedule for like 6 weeks out and now that the time is almost here they call me and want to wait 4 more weeks for me to come see the doctor and of course the day that they want is the day that I have to take my son for his first day of college and my youngest sons birthday......just not an occasion I can miss. I really want to talk to someone about what is going on with me and finally get some answers to all of my questions. I also told the receptionist that I don't have a NS or anyother doctor treating me for my condition and that my orthopedic doctor who has told me to find a NS also for my 4 bulging disc has stopped giving me meds all of a sudden and she informed me that this NS doesn't prescribe meds until after surgery IF you Even have to have surgery............I just feel so lost and defeated!!!! This may seem like premature emotions to some of you and the troubles that you have been through but some days I just wonder how much of this I can take!!!


I am so sorry sweetie !! I know you are frustrated.

I can tell you how to get an appointment soon. You have two choices....

1. Call his office and ask to be put on the cancellation list. Then call every morning and ask if they have a cancellation. Trust me his office is staffed with incredibly sweet ladies and they will get you in. Be really nice and apologetic every morning you call because you are feeling so bad. You will have an appt. within two weeks unless he is out of town.

2. Have your PCP call and get you in. Mine has done it several times when local specialists are hard to get in with.

If you would like I will call them. I have for another Member. They know me and Ben's Friends and my NS. Think about it and let me know.


Tracyz, They are supposed to be trying to find me a date sooner than August and calling me back tomorrow (Monday). I thought about asking them about being on a cancellation list however I do live 3 hours away and don't know exactly how that would or if it could work. I do have a very flexable work schedule though and I did make sure that I also told them that. I do have this other problem of feeling guilt. I feel like I am pushing my way into this doctor when maybe there is someone that needs it more than I do. I know everyone is probably gonna think I am crazy for feeling this way but it would be such a relief if anyone could tell me if they have ever tried to down play there symptoms and maybe thought they didn't needd to be treated as much as someone else.

Abby, thank you so much for your kind words. Sometimes thats all anyone needs.


I was soooo looking forward to this appt. We are having a short family vacation for my son's 18th birthday then I would be going to see the NS. I could barely contain myself. I've heard suc good things about him and ccouldn't wait to see for myself. My GP is clueless on the Chiari and tells me so. Lol Bless her heart. So of course she prefers to leave it up to the pros. I have a NL but he admittly will only treat me for headaches which he treats with Topamax. My GP does like to give me Cymbalta and Amitriptyline for sleep, depression and some pain. They also referred me to an Orthopedic doctor who ultimately started me on anti inflammatory meds, flexaril, hydrocodine, and tramadol and then after about 9 months decides there is nothing that he can do for me or my bulging disc says I need to see a NS for my back as well but he is going to refer me to a pain specialist as well. While I was waiting for the referral to the pain clinic I called in for my refills on my meds and he cut them off before I ever got referred. I still haven't gotten the referral and it has been since May. They mademe feel like I just wanted the pills. The strongest thing I ever got was norco 7.5. The worst problem I have with the headaches under control is very bad pain in my upper back, shoulderblade area. Makes it very hard to use my arms. I have people that do almost all my housework. I couldn't imagine what it would be like if they didn't.

I totally understand. They are very nice and I am sure they will do their best to help you.