This seems to be a constant issue with people diagnosed with Chiari - being frustrated with the neurologist.
When I read the MRI results, the impression reads that I "may" have a "mild" Chiari 1 malformation even though it also says in the report that my "cerebellar tonsils are herniated approximately 6mm below the level of the foramen magnum which could indicate a very mild Chiari 1 Malformation". I'm confused by the MRI. Do I have Chiari or don't I? Everything I've researched says 'yes', I do. But the lack of concern or information from my neurologist made me believe that this wasn't a big deal and wasn't the cause of my intense migraines.
In fact, when my doctor gave me the diagnosis (he said I did have Chiari 1), he actually told me that surgery did not resolve the problem in most cases and sent me on my way without any other information, things to look out for, stay away from, or treatment plan other than a supplement (Butterbur) and an anti-inflammatory *can't recall name. My diagnosis was delivered to me in a matter-of-fact manner and no other information provided except for 'your brain is falling through your skull but it's so slight it's nothing to be worried about.'
Two weeks later, after the medicines he prescribed STILL weren't working, I went to a chiropractor. Thank God they looked at my MRI (and that I thought to mention I had one done). The chiropractor refused to adjust me saying if he did that, he could severely injure me. Wow. I'm supposed to go back to the neurologist tomorrow (March 12) to get my EEG results but i'm now hesitant to even waste my co-pay going there. He clearly doesn't have any experience in Chiari and i'm so mad that he even tried to treat me knowing he has no experience with this diagnosis. I've already researched experienced Chiari neurologists in my area and found one about an hour away. Just waiting on the news if he'll fit me in sooner than later. Right now it's May 5th as the soonest. Meanwhile I'm still suffering.
At this point, I've missed 17 days of work since Dec. 26th when this particular migraine started. Some days are better than others. I can function partly (like now) with a mild headache and as long as I don't over-exert myself it won't get any worse. Other days, I'm stuck in bed in the dark. The pain seems to not correspond with what i've read online --- my pain is in the temples and now is going to the back of my right eye. I'm dizzy at times, forgetful and have started to experience pain in my shoulder joint after 2 years of being pain-free. Not sure if any of those are related to Chiari but from what I've read, it could also lead to some of those symptoms as well.
Totally new to all of this as I was just diagnosed Feb. 12th 2014. Would love to hear feedback from others who have more experience in dealing with their symptoms and also ask if there is any other treatment for Chiari other than surgery.
Most people with Chiari seem to have terrible luck with neurologists. They just don't seem to have a good understanding of Chiari. I think you'll feel a lot better after seeing the neurosurgeon even if you decide against surgery. Surgery is the only real treatment for Chiari. You can find medications to keep the symptoms manageable as long as you don't have a blockage of your spinal fluid flow.
Thanks for the reply Anglyn. I just got back from my EEG reading. Wow. I feel worse now than I did before and my EEG results were all fine! I confronted the neurologist with the findings I discovered online through forums like this, research institutes and other Chiari-related blogs about the surgery...he totally dismissed it and actually had the nerve to tell me he's had 'thousands of Chiari patients' and not one of them has ever benefitted from surgery. Thousands eh? Hmmm Every time I tried to talk about Chiari and my symptoms, he changed the subject to migraine treatments. I understand the need to treat the pain--trust me, I'm happy to have some relief! But he put me on a medication for blood pressure that's going to lower my blood pressure and cause me to be even more tired than I already am. Then he prescribed a Rel-pak (sp?) to treat the migraines individually as they occur which is apparently over $70 with my insurance. I can't afford that. I just feel so helpless right now. I'm waiting on the specialist at USA in Mobile, AL to say he can see me. Praying for quick response.
Thank you Emmaline for the validation. It was just the most frustrating thing to have him dismiss anything I spoke about when it had "Chiari" in the sentence. I plan to visit a specialist who has 17 yrs of experience dealing with Chiari patients, treatments and surgeries. The nerve of this doctor saying he's seen 'thousands' still rubs me the wrong way when I even think about it and it's been hours since I left his office.
Emmaline said:
I totally agree with Anglyn...most of us here have had bad experiences with NLs...Why waste your time and stay ill? Try seeing a NS that has experience with Chiari and you'll see a different approach.
By the way, there is no such thing as mild Chiari...you do have it, he was just minimizing it like they do. Even at 6mm, that was quite the slight! I had one that said my 18mm herniation wasn't causing my migraines...ugh!
Get a copy of your MRI and reports. The make an appt with a NS and hopefully a Cine MRI will be added. That is needed to measure the CSF flow in your brain. And that tells the NS whether surgery is warranted.
I am sorry you are having these problems. I have seen 3 NS one as far away as 4 hours from me to be told that my Chiari of 8-9 mm is not causing symptoms or crowding and I need to give up the Chiari quest. I have also seen a Neurologist who said he thinks it is tension headaches and nothing more lol not a Chiari. I also am looking for a non surgical option but I was just diagnosed with firbomyalgia and poss POTS and poss nerve damage ( need more testing) that could be possibly interrelated with the Chiari. I have seen some Chiari success stories but I have also seen people have reoccurence of symptoms and sometimes second surgeries. Be careful when scheduling with doctors who say they are experienced with Chiari bc in my case I have found that can mean they do maybe 3 or 4 surgeries a year but see many for consultations. Good luck with your journey and I am here to talk if you need to. Jenn
I have Razzle51 had my Primary Care Dr refer me to this specialist (Neurosurgeon) in Mobile, AL who has experience with Chiari. I'm hoping I can get in sooner than later. 17 missed days of work. I counted it this morning when I (finally) got in to work today. UGH.
Wow, Jenn, it sounds like you and I have similar experiences with neurologists who 'know everything'. I wonder why they are so quick to dismiss. Do they think it's not a serious condition or is it a refusal to accept they may not know everything? As in the case of my doctor, he told me "You think I got into practicing medicine to hurt people? I'm here to help you." He made me feel really bad for questioning his previous statements and put ME on the defensive. Really irritates me.
Hi Lori, No, no response yet. I'm praying I get one by next week. When I called the neurosurgeon's office personally at the beginning of this week, his first available date ws April 30. So I can imagine it's even later now. His nurse told me once he reviews my information, there is a possibility he may decide to squeeze me in sooner. I also wrote up a letter to him directly explaining what I've been dealing with over the last few months and how my symptoms have gotten worse over time & had my PCP send that over with my MRI.
Even more confirmation about my present Neurologist--my Supervisor at work has had issues with him as well--his wife suffers from epilepsy and he just started to over medicate her and then had the nerve to tell them they can't have any more children because he didnt' want to switch her medications. This is the 4th person I've come into contact with that's had this doctor and fired him. He even said the same thing "I've been doing this for 25 years....(fill in the blank)..." Hopefully, he's not been mistreating people for that long too!
Got a response---my PCP never got the fax request over last week so now I'm having to wait until the middle of May (the 13th) to see the specialist. I spoke with his nurse & she asked me a variety of questions about my symptoms. She said even though they are quite severe, they aren't bad enough to be considered an emergency to get me in sooner. :-( I wrote up a letter to the doctor explaining everything so even though I still forgot to mention verbally some of my symptoms, she did say the P.A. would be reviewing my file and if she thinks it's warranted, she'll move me up. So I'm just PRAYING that she sees my plight. I told the nurse my main concern right now isn't that I can't hold out until May--because I've held out this long, why not, right!? - it's because of my job and my family. I am so paranoid about losing my job or my house. I'm the breadwinner in my family and I have the awesome insurance benefits.I've used up all my vacation/sick time with my FMLA so even though the absences are excused and protected, my income isn't. When I can't get a full paycheck, our bills don't get paid. The longer this goes on, the more likely, we're going to be in major financial trouble.
(sigh) Just pray they think I'm serious enough to get moved up. :-)
I have tried Relpax, Frova, Maxalt, Imitrex injections....nothing works. I'd been treated for migraines for over a decade before I ever even heard of Chiari with no luck. I think those meds don't work because migraine pain and CM pain are caused by different issues. I was just told my herniation isn't big enough afterall to be causing my pain of be classified as a CM. So, I'm awaiting a NL appointment. I'm so frustrated. I hope you find relief SOON! (Hugs)