Good afternoon. Do any of you get the idea/impression that your NL’s not only aren’t crazy about the idea of surgery at all, they don’t really want you to see a NS? I have a CM anywhere between 4-10mm depending on the MRI, and a syrinx. Haven’t seen a NS in 4 years. I am seeing a new NL for a variety of reasons. When I mentioned/asked if I could just get a consult with a NS, he wasn’t too keen at first and just reminded me that surgery can make me worse. Then he relented but wanted me to see same NS I saw before, who is not a Chiari expert. I had to provide names of surgeons with Chiari backgrounds that I had found myself. I don’t understand the resistance. I still don’t know that I would even want surgery, but with increasing symptoms and a syrinx and not having seen a NS for 4 yrs, I’m thinking a consult would be valuable…?
I did find out after meeting with my NL that my insurance will cover a visit with Dr. Ellenbogen. Now I just need to see if he would even agree to see me…
Dr. Ellenbogen is wonderful! He is VERY knowledgable about Chiari and Syringomyelia. In addition to being a brilliant doctor, he is a kind and compassionate human being:) I highly recommend that you send him your MRI to review. I sent him my brain, cervical, and lumbar MRI…After reviewing those, he requested a CINE MRI and a thorasic spine MRI to be done before my appt with him. I haven’t seen a NL, but my other doctors flat out refused to give me the referral I needed to see Dr. Ellenbogen. My primary care doctor told me that I needed to get the referral from the NS that diagnosed me. When I called the NS’s office, they told me that I was insulting their doctor and telling them how to do their job by requesting a referral. I explained my right for a 2nd opinion, but ultimately they didn’t return my calls or give me the referral. I went back to my primary care doctor and he refused to give me the referral because “my case isn’t surgical and it’s not that bad.” Seriously?! I was finally able to get the referral from my Chiropractor…He has been the only one that listened to me and took me seriously. I’m lucky to have him advocating for me:) I had my 2nd Deposition last Monday for the car accident that started all of my pain and other symptoms. The lawyer gave me a hard time for going up to Seattle to see Dr. Ellenbogen, even though my primary care doctor and NS refused the referral. I explained that I was getting worse and needed to see a specialist…and I’m glad I did, because Dr. Ellenbogen said I wasn’t far off from needing to be in a wheelchair! They pulled up Dr. Ellenbogen’s credentials and didn’t have much to say after that. So, I can’t exactly relate to what you’re going through with your NL, but I definitely understand what it’s like to have to fight to get proper care. I hope you’re able to get in with Dr. Ellenbogen soon! Please keep me posted.
I didn't ask my NL if I could see a NS....I guess because I'm recently diagnosed, I made an appointment with the NL that I've been seeing for at least 10 years, although they never mentioned the Chiari. Then I researched to find a NS in my area that specialized in Chiari & degenerative disc disease because I have both. I made the appointment with hin myself, and got to see him prior to the NL. I'll see my NL in June, his office cancelled the first appointment I had and waited over a month for, but I think I'll focus more on what the NS has to say once I get my MRI's done and go back to see him next week. I wish you good luck. Keep on pushing and fighting for yourself, I'll be keeping you in my thoughts and prayers,
The NL I saw at WVU refused to refer me to a surgeon. He went so far as to say that any NS doing surgery on a Chiari type 1 patient should lose their license. What an idiot. The local NL gave me a referal to UVA but was so sarcastic and hateful about it I left his office crying. He said if I wanted to drive to VA to hear from another doctor that Chiari type 1 doesn't cause symptoms then it's my time I'm wasting. He suggested I continue seeking treatment for Chronic Fatigue Syndrome.
I never heard from UVA, I know he sent the referal because my insurance ok'd it. I guess maybe UVA doesn't think I need a NS either. Right now I'm waiting on Mayfield clinic to review my MRIs. They don't take my insurance but I just don't know where else to turn.
Wow, thank you all for your replies. Unbelievable stories. All we are asking for is appointments/consults! I personally don't know if I need or want surgery, but I'd just like to find out. I do appreciate my doctors being conservative (that's how I roll in general), but I think I (we!) deserve to know all we can about our cases so we can make informed decisions.
I completely agree! I don’t know why some doctors are so adament (sp?) about not referring us to a specialist…It doesn’t make sense. I hope you’re able to see Dr. Ellenbogen. I was very impressed by him! I have heard that he is a bit on the conservative side…He will only recommend surgery if he really thinks you need it and/or you would benefit from it. He told me that if I ever saw a doctor that didn’t encourage a 2nd opinion, I should run out of there and never look back. I have complete confidence in Dr. Ellenbogen:) Please keep me posted.
The NL that I saw wanted to put me on a medicine to treat my HA's. She said that a 3 to 6 month dose of it would cure them. When I asked her about all my other symptoms she told me to get a PCP, that they would treat them. That I didn't need to see a NS. That surgery wouldn't cure Chiari so there was no need to see on and go through with it. I told her that I wanted a NS consult anyway. After shooting down every angle she threw at us, she finally agreed to give it to me, but still wanted me to try the script while I waited to see the NS. I filled it, took it for about a week. The HA's actually got worse!!
My NL says I have Trigeminal Nerve Disorder and when he 1st thought this; he didn't hesitate he sent straight to a NS. And when I they found out I had My Chiari..... He didn't didn't hesistate again he sent me to the NS I have now (my insurance changed). He did however question why I'm having the surgery this summer. Because the henination didn't change (5mm). I explaned that my cerebellum did change and my symptoms changed all for the worst! And he said that was good I was having the surgery then. I told him it took me 3 weeks to make this disision. But he seemed ok with it....and if he's not OH WELL! It's body and I only get 1!!!!!
I didn't have surgey for TND. Because I don't have the pain...I just have numbness in the face not pain. I opted to not the surgery if I wasn't having pain... Plus I don't really think I have it. I think the Chiari is it. So after I have the Chiari surgery, then I'll deal with the TDN.
Molly Shirk said:
My NL says I have Trigeminal Nerve Disorder and when he 1st thought this; he didn't hesitate he sent straight to a NS. And when I they found out I had My Chiari..... He didn't didn't hesistate again he sent me to the NS I have now (my insurance changed). He did however question why I'm having the surgery this summer. Because the henination didn't change (5mm). I explaned that my cerebellum did change and my symptoms changed all for the worst! And he said that was good I was having the surgery then. I told him it took me 3 weeks to make this disision. But he seemed ok with it....and if he's not OH WELL! It's body and I only get 1!!!!!
Wow. I feel so lucky, after reading these stories. My NL took one look at my MRI and called me to let me know he was referring me for a NS consult. He also told me that "with your insurance, you could go anywhere, but these guys are the best in the area" when he told me to whom he was referring me. He also told me that he'd be glad to see me again regardless of if the NS decided to operate or not.
I wasn't able to see a neurosurgeon without a referrel from a neurologist. As soon as they found it, they sent in the referral to the neurosurgeon. I only had one not agree with the surgery and that is because she didn't even recognize Chiari as a problem, as she told me that could not possibly be causing my problems.
My daughter has been through the ringer with docs. All the NL's acted like we were nuts and were totally anti surgery (one even said "they don't do surgery on Chairi 1"). They fought us on a referral. Now that Dr. Ellenbogan thinks she should move forward with the decompression, two of the old NL's are jumping on the bandwagon.
As patient and Mom, there seems to have been little validity. It's been a hard, rough ride. My heart goes out to everybody on here who struggles through this.