So I finally called my NS and asked about my referral to Dr. Oro today. His nurse just acted like she had no idea what I was talking about, imagine that. Then she asked me if I had the number for his office and where he was and who exactly he was. I told her he was a Chiari specialist in CO and I was supposed to be referred over a month ago. She said she would see what she could do and get back to me. Now if that doesn't sound like being blown off I don't know what does.
On the other hand, I called the rheumatologist here and made an appointment so I can be checked for EDS. The receptionist was very nice and asked me how to spell it and I told her just to write EDS it was easier...lol. She said that he was a very busy doctor and my appointment isn't until April but at least I finally got it done. I told her there are several types and I want to know which type I have for sure. I told her that I know for sure that I have hyper mobile joints and she said okay, is there anything else I told her that I have CM and she said ok, it's good that you be checked for EDS I know that it is commonly seen with people who have CM. Kind of blew my mind. I wish all people could be as nice as the lady at the reumatologist office. I really hope that my NS doesn't continue to blow me off because I don't know how many more days of this headache crap I can take. They are getting worse and it may sound weird to say but I can feel the pressure in my head and spine it is so bad sometimes it feels like my husband is sitting on my head. I don't know how to find a pain doctor and all of that. This is all still pretty new to me.
I am new to all of this too, the first NS I saw completely blew me off and all of the tests and evals done when I had to go into the ICU bc of symptoms, then had to go to the ER bc the pain and vommitting had lasted 24 hrs NON STOP, I was so dehydrated from the vommiting. I am getting a second opinion from the NS that took care of me when I was in the ICU at the end of this month, but it seems like forever, I had already waited a couple months for the appt with the first NS who was supposed to be the best of the best specializing in CMs, but he spent all of about 5 min with me.
Just wanted to let you know that I know the frustration of trying to get this all worked out, I hope you can find some answers soon!
I've been blown off by doctors for six months now, so I totally empathize. My general practitioner is the one who is referring me to Dr. Ellenbogen in Seattle - all the other neurologists and neurosurgeons kept telling me to "get another opinion." From someone outside their practice, of course.
Just keep on top of things and advocating for yourself. Good luck!
Katrina W.
Dr Ellenbogen is the one who blew me off!!!
Really?! Do you mind messaging me and letting me know what happened? I'm still waiting to hear back from their office...
Robinlm said:
Dr Ellenbogen is the one who blew me off!!!
I too have had Ellenbogen as my dr. He is one of the few in WA that specialize or even know much about this condition. He is very hard to get in to see! It is frustrating, but he is a neurosurgeon, so it's surgery he mainly deals with. I no longer see him because I had surgery and there isn't any more surgery necessary for me at this time so I have to deal with my general dr, nuerologist (if I went) and all other -ist that I get to do a number of tests with. I know at times his patient assistant somehow didn't get the messages to him and the other docs that were supposed to deal with me, didn't.
He is a wealth of knowledge, but as a patient that needs help, I know it is very frustrating!!! (that's one word)
Sorry you are not getting anywhere.Best of luck!!
It's ok. I totally understand all of the frustration! This "migraine" that I have had for years now is driving me crazy and making my life a living hell! Things are getting worse for me day by day and trying to get any of these doctors to understand that is almost impossible. My regular neurologist office called today to find out how often I have headaches again. I DON'T KNOW HOW MANY TIMES I HAVE TO TELL THEM I HAVE HAD THIS SAME ANNOYING MIND BLOWING NAUSEATING HEADACHE EVERY DAY FOR THE LAST 4 YEARS!!! They want to try Botox injections in my head to see if that helps. To tell you the truth I am not sure that is a good idea. I have enough problems as it is. I don't see how botox is supposed to help with CM and why the hell they don't get that you can't treat CM with pills and Botox. I live in a city that was just this last year called an urban area so the closest CM specialist is in CO and I believe there are some in WI and KS. I am right in the middle of NE.
Lately I have noticed that the more I do the worse my symptoms are. Simple things like cleaning my house and doing laundry are my biggest regret in a couple hours. I have my sister and her family living with me until they found their own place but she is, well the type of person that likes to have all of the attention so when I am having a really bad day, of course she is sick or not feeling well. I always just have to suck it up and deal with it no matter how bad things get because my kids and family need a clean house and somebody to take care of them.
I don't know what to do about this Botox thing and what to do about my Dr. Oro referral because my NS doesn't seem to care. I was kind of waiting to find out about the EDS thing before I went too much farther but I don't know how much more my body can take.
And why does it always sound like there are bats chirping or whatever that noise they make, in my ears? It never goes away and it is going to drive me crazy! Is there anything I can do to make it stop? Is it normal to feel pressure in your head all the way down your spine? Is there any way to relieve the pressure? It messes with my eyes and my balance and I am so new to all these new symptoms and I just don't quite know how to deal with all of it yet. Is my new speech issue going to be permanent or will that get better? Sorry for all of the questions I am just having one of those question kind of nights I guess.
I sent you friend request as it says I cant message you unless we are friends, will talk more over PM as I dont want to hijack the post
Really?! Do you mind messaging me and letting me know what happened? I'm still waiting to hear back from their office...
Robinlm said:Dr Ellenbogen is the one who blew me off!!!