Went for a follow-up on my c-spine MRI with my neurologist today. Last visit he said my brain MRI showed an 8mm chiari malformation but that it was too small to cause symptoms. He ordered the c-spine to see if a herniated disk or something could be causing my issues. Well today he said the MRI looked great other than the chiari but that was nothing to worry about. There was no way it could possibly cause symptoms it was way too small. He then suggested I go back to my regular doctor and keep taking my herbal stuff for chronic fatigue syndrome. He also suggested that I get bloodwork because autoimmune disorders could be causing my symptoms. In the past three years I've been checked for lupus by four different doctors, Rheumatoid arthritis twice, ANA, SED rates, thyroid, and so on. I've been to an immunologist, endocrinologist, rheumatologist, four general practice people, and now this neurologist. Basically I've come full circle!!! I'm just out of hope.
I told him all this and also told him that a girl my mother in law works with had decompression surgery for chiari at UVA and suggested I get a referal there as she had the same symptoms. Then he said real smart "oh yes, since Lisa thinks that is causing your symptoms by all means I'll send you to UVA despite the fact that I know it's not" and "that if I'd feel better having a doctor in VA tell me it's not my problem that's fine". I was just stunned. Fighting back tears on my way out of the office. I was late for work because I couldn't stop crying and it took me two hours to pull myself together.
I have a state insurance company so it is going to take around a month before they'll decided whether to ok the visit to UVA, the the doctor at UVA may review my chart and decide not to see me! So I'm in limbo, in pain, with hands and feet staying numb.
Is he right that I can't possibly be experiencing symptoms? Am I crazy? A hypochondriac???
I live in WV about 3 hours from UVA. My medical insurance is for WV state employees (which I'm not but I work for a non-profit that uses it) so they try to keep you in WV. No one here really treats chiari and I'm not sure insurance will even approve the referal...especially since the doctor doesn't think I need it. Aslo UVA may not even agree to take my case since my doctor is adament that chiair isn't causing my issues. :(
Thanks Abby! I do have that book on my kindle and am working my way through it!
It's not really that I wanted him to recommend surgery it's that he didn't even want to watch and wait! He wants to just dismiss me to my regular doctor because he says there is no possible way my symptoms are caused by the 8mm herniation. He has offered me no meds for any of my symptoms, just told me to keep trying herbal remedies for chronic fatigue syndrome. He says I don't need neurological follow-up at all!!!
What a Jerk !!!! I am so sorry you had to deal with that. We all have our horror stories with doctors. 8mm is sufficient to cause CM symptoms. I pray you can find another Dr. I sent you a message about Charlottesville, you and I have a lot in common. Do you have a PPO insurance policy? If not your PCP can refer you to UVa. It doesn't have to be a specialist.
The first NL I went to matter of factly stated "You have Arnold Chiari Malformation Stage 1...oh, but don't worry about that, we'll just up your dosage of Xanax to combat the anxiety you're feeling" needless to say, I found a new NL. My tonsil is about 8mm and I was told and read that Dr's that know what they are talking about when it comes to Chiari focus on the symptoms not the size....so see size doesn't matter! Sorry I had too :-) !
I have some crazy ridiculous headaches and vertigo at times so I'm glad I'm getting the surgery done.
My thoughts and prayers are with you as you continue your search for the Dr who will take you seriously.
We continue to be told that my daughter's symptoms are not related to the Chiari, ....too much of a range of symptoms to be the Chiari ...... Chiari wouldn't 'look' like that. I've decided that I probably know more than these doctors, whose Chiari experience is probably all from a book. Now we just keep going to different doctors until one says what we want to hear. The ones who aren't concerned with knowing more than you do, the ones who are open to learning, the ones who aren't concerned with being 'right,' the ones who care, are the ones who listen.
My daughter had 2 different Brain MRI's at 2 different radiologists. The findings were the same, but the wording was way different. A doctor explained to me that the interpretation is subjective. Two radiologists can see the same thing and interpret their findings entirely differently. One might see a 6mm herniation (my daughter's) as 'not a problem,' while another might see it as, 'moderate herniation.' Opposite sides of the coin when surgery is being considered. To further complicate the issue, the views on herniation are currently shifting to being considered a symptom of the pressure, rather than the actual indication of the malformation. I have found that not all Neurosurgeons are as current on these changes as one would hope.
Also, Anglyn-I'm quite sure that we've all been made to feel a little crazy until we start to read all of the stories of commonality on here. It's good you're here.
As Abby said they are doing what they are taught to do-watch & wait. They are not taught to listen to the pain & often do not respect the symptoms. They are trained to verify their diagnosis with empirical evidence & it's not enough for Chiari. Granted, it is brain surgery, but they don't go home with us at night. They don't understand that my daughter has lost her entire 16th year of her life, that she is nonfunctional at home many days, that she cries at least once a day, is always in pain, and could end up with permanent damage if I can't find a surgeon willing to take on her 6mm herniation.
She has also been through the full range of specialists, as well. I'm now taking her to a Chiari specialist. I wish someone would have told me to start out in that direction, as soon as I suspected that was the diagnosis. We started out going to neurosurgeons, and just because they claim to have experience with Chiari, it doesn't mean they are Chiari specialists. They tend to be overly cautious, again, because of the brain surgery. I have no desire to 'wait & see.' The only thing I'm 'seeing' is her life wasting away in pain.
I think your doctor is a quack!! And should be reported. I have a 6mm Chiari and I am suffering in pain with pressure, neck pain, fatigue, dizzy, and have times where my legs get weak and I feel like I am about to fall. The truth is your doctor probably doesnt know a thing about Chiari! I would go somewhere else! Hang in there. People disregard my suffering too though. Good luck!!
Happened to find this and it made me very curious....
"Another form of the disorder, under debate by some scientists, is Type 0, in which there is no protrusion of the cerebellum through the foramen magnum, but headache and other symptoms of CM are present."
Find another doctor, I wasted years trying to convince my doctor my symptoms were real and coming from my Chiari. You may have to go to many doctors before you find one that will take you seriously. It is abusive if he/she is that dismissive. I know how disheartening and exhausting it is but the alternative is suffering in silence. When I finally made up my mind to change doctors it took me almost a year and things are far from perfect but atleast I am not humiliated every time I go to the doctors. I am at the point where I feel like I wasted so much time and my families time suffering in silence because I was called every name in the book by doctors and therapists...Lazy, drug seeking, hypercondriac, depressed, bored, needy, crazy ect..So I gave up looking actively looking for someone else to help me. I have been dealing with this since 1996 after a car accident. No one knew anything back then. A 8mm herniation is almost definitly causing your problems. If it quacks like a duck.... You need to ask and fight for a Cine MRI it shows the cerebral fluid spinal flow and will show if it is blocked or not. I begged for one for 5 years and finally had to change doctors to get one. I have a complete block at C2 after having the surgery in 2001. Scar tissue built up and has blocked it. My leggs are useless...numb, weak and burn with unrelenting pain. I am looking at a revision surgery that I hope will give me some relief. But even as much as I have been through and I know I just had a very prominant nuerologist tell me I didn't have Chiari anymore because I had the surgery done years ago. I walked out and I am feeling reprecussions from it. It terrible that we have to go through this and when your not feeling well and exhausted the last thing you need or want to do is make appt after appt.but it is what needs to be done. Don't let them convince you you are making this up...you are not.
How does those remedies help you??? i am very interested. I use specifically prescription meds, but if I could supplement those. i might get better pain relief. Thanks !!!
Anglyn said:
Thanks! It does help to know I'm not alone and not crazy!
As for remedies I take a liquid multi, sublingual B12, fish oil, Vitamin D, probiotics, zinc, tumeric extract, olive leaf extract, and astragulus.
I grew up in Welch, WVA not far from Beckley - so hello to a fellow West Virginian. Haven't lived there since I graduated High School but still feel an attachment to what I still consider "home". I just want to say don't give up. You yourself are the best judge when something is not right. I was just diagnosed in Dec 2007. I experienced the headaches, dizziness, fogginess in the head, vertigo and pain for years and years and - a lot more years. Like you I went to all kinds of doctors and was treated for a myriad of symptoms and took a lot of different colored pills before I got a diagnosis of Chiari, so I understand the frustration you must be experiencing. I knew something was wrong; I just couldn't convince anybody else or find out what it was. After all, I didn't really "look sick". It's hopeful that you at least have the Chiari diagnosis. Now you need to find a doctor who is experienced in Chiari to give you a proper prognosis. I agree you need a second opinion. I live in the Wash DC area and we are lucky to have a couple of really good ones here. I had my surgery for Chiari and basilar invagination in 2010 and when I woke up the next morning for the first time in a very long time nothing hurt. Course part of it was the fairy dust they had given me for pain! But, I found that I was lucky and I really had to use only a very small amount of pain medication as I recovered. The surgery didn't make everything perfect but it helped a lot. I don't have headaches and most of the dizziness and vertigo are gone....to me that is success. I know it's not the most important thing but I did like that my neurosurgeon put all the stiches on the inside. I barely have a scar. I really hope you find answers too. If you can travel this direction, I will be happy to give you the info on Dr. Fraser Henderson who helped me. He not only does the surgery but he is involved in research also. He is not only a competent surgeon but a compassionate person. I feel he really cares about his patients. I know that he wouldn't recommend surgery for anyone who doesn't need it. I also know that he takes on the difficult cases that other doctors won't (that would be me) and fixes people who have had failed surgeries before. So, I wouldn't hesitate to recommend him. I hope you get some answers soon.
I forgot to mention that I recently read about a study for families with Chiari. You have to have someone else in your family who has it though. If you get in the study the medical care is free. If you want the info I'll get it for you.
I could not agree more with wendyanne. It is NOT worth wasting your time with someone who does NOT respect your pain. It's hard to find the ones that do, but they are out there.
Twitch said:Even though I have dozens of Chiari related symptoms, my doctors think they're caused by something else (but can't figure out what it is).
Love this Twitch!
It sucks for me to say this, but, for some of us, we just have to deal with the cards that we're dealt and figure out a way to help ourselves. When it comes to a rare disorder like Chiari, most of us quickly become more of an "expert" about it than the experts. We are our best advocates. We are also, in many cases, the most knowledgeable about what we're going through.
This is SO true.
Angyln- It's pretty worthless for me just to agree with what these people already said, but I wanted you to understand that the struggles are common to all of us & many of us have wasted time looking for answers. Hopefully, the more of us that send you these messages, the more it will help you to trust in yourself!!
What great advice from Shirley. I would like to add that just because someone claims to have experience with Chiari, it does not make them a specialist in Chiari. Many of those tend to be overly cautious & don't want to take risks with the surgery. I researched the top Chiari specialists in the country. Henderson was one of those, Shirley. Glad to hear that he was everything I read about him :)
Shirley C. said:
Hi Anglyn
I grew up in Welch, WVA not far from Beckley - so hello to a fellow West Virginian. Haven't lived there since I graduated High School but still feel an attachment to what I still consider "home". I just want to say don't give up. You yourself are the best judge when something is not right. I was just diagnosed in Dec 2007. I experienced the headaches, dizziness, fogginess in the head, vertigo and pain for years and years and - a lot more years. Like you I went to all kinds of doctors and was treated for a myriad of symptoms and took a lot of different colored pills before I got a diagnosis of Chiari, so I understand the frustration you must be experiencing. I knew something was wrong; I just couldn't convince anybody else or find out what it was. After all, I didn't really "look sick". It's hopeful that you at least have the Chiari diagnosis. Now you need to find a doctor who is experienced in Chiari to give you a proper prognosis. I agree you need a second opinion. I live in the Wash DC area and we are lucky to have a couple of really good ones here. I had my surgery for Chiari and basilar invagination in 2010 and when I woke up the next morning for the first time in a very long time nothing hurt. Course part of it was the fairy dust they had given me for pain! But, I found that I was lucky and I really had to use only a very small amount of pain medication as I recovered. The surgery didn't make everything perfect but it helped a lot. I don't have headaches and most of the dizziness and vertigo are gone....to me that is success. I know it's not the most important thing but I did like that my neurosurgeon put all the stiches on the inside. I barely have a scar. I really hope you find answers too. If you can travel this direction, I will be happy to give you the info on Dr. Fraser Henderson who helped me. He not only does the surgery but he is involved in research also. He is not only a competent surgeon but a compassionate person. I feel he really cares about his patients. I know that he wouldn't recommend surgery for anyone who doesn't need it. I also know that he takes on the difficult cases that other doctors won't (that would be me) and fixes people who have had failed surgeries before. So, I wouldn't hesitate to recommend him. I hope you get some answers soon.
Thank you guys so much for your input! I feel much more confident now and a lot less crazy! :) It's just so sad to see so many other people suffering and so few doctors who seem to know how to help us!
Vonda- I hope the specialist is able to help your daughter! The teens are such a difficult time as is, I feel so bad for what she is going through!
TracyZ- My suppliments don't seem to help a ton but I find the fish oil and Vitamin D seem to help with joint trouble a bit. The tumeric has anti-inflammatory properties so it seems to help my pain some. I take the olive leaf and astragulus to boost my immune system. I stay so fatigued I was having trouble fighting things off and kept getting shingles outbreaks. They've stopped since I've been taking those! I also take apple cider vinegar daily. It seems to boost my immunity and help my digestion along with the probiotic.
Shirley C.- It's kind of funny that you are from WV and living near DC and I am living in WV and am from Arlington, VA. :) Thanks for the recommendation on the doctor. It is really hard to get my insurance to cover me out of state but if I keep hitting dead ends I'm willing to fight for it! I'm not sure if anyone else in my family has this...no one has been diagnosed at least.
I'm just like Abby...mine is 5mm And it causes all kind of havoc. Please get the 2nd opinion. I even 2 different radiologist..1 said I had chiari (2011) and the other said I didn't (2012) But I'm having surgery in June. My NL in my hometown sent me out of town 4 times to the "big city" NL and none of them new what had. but the Nurse Pract. at my NL actually found it and clouds opened and the skies cleared. just kidding. but searouly TAKE CHARGE! AND YES MAYBE YELL BACK!
Abby said:
You really do need to change and find another doctor. I have a 5 mm and my doctor sees me every 6 months, and more often if needed. He does prescribe my meds, and takes me serious. Most of the ones that don't take us serious, really don't understand Chiari, and how to treat it. That is crazy!
So glad your got that book, it is a wonderful source.
What kind of herbal remedies do you take?
B-12 and B complexes is what my neurologist said to use. Multi vitamin, calcium,, D and omegia 3
Bless you hon, so sorry you had to go through that.
We understand, many of us have to fight to see someone that is any help at all.