I had a lot of Chiari symptoms, most of them gradually starting from about the time my husband and I got together, three years ago in October 2011. I just found out a couple of months ago there is a name for all these unexplained symptoms, CHIARI, which made me feel validated, then scared to death! Now my Chiari-like symptoms seem to have settled down, though not gone completely away. Is this possible with Chiari, or should I keep looking somewhere else to try to explain these symptoms? I am so confused! The only doctor I've mentioned these symptoms to was my geneticist (I have Ehlers-Danlos Syndrome) and she said I need to get to a neuro. I just don't know now if it is worth it to find a new neuro. (The neuro I see now for my seizures always acts like I'm faking, even when my EEGs are abnormal!) I'm confused and looking for advice...help?
hi amy..
how frustrating for you.....NL's did not know much , if anything about Chiari...that was just my experience...Has anyone ordered a brain MRI???? Really a full spine MRI as well as head would be ideal.
How is your primary doctor?? can you talk to him/her about your concerns and maybe he/she will order the MRI...get all written reports for your records..i learned that the hard way...once a chiari malformation is seen ..in my opinion ,only..NL are out of the loop!!! go right to a NS for consult.....Like always this is just my take...good luck...you
deserve answers!!!
Happy Easter,
Lori
Amy
Yes, symptoms do come and go - at least they have for me. I'm now a grandmother and was just diagnosed with Chiari in Dec 2007 - Over the years, I experienced symptoms which I now know were Chiari related. sometimes for long periods of time, I would have horrendous headaches, so bad I would have to go to bed, lie in the dark, and lie perfectly still. Then, they would go away for years, and then come back again. When I had my surgery in 2010, I hadn't had a headache like that for about 20 years. I have also experienced varying degrees of vertigo and/or dizziness, fogginess in my heads, numbness at various times in my life and sometimes would just pass out and fall. Each time I would go through a series of tests at the doctors with no diagnosis other than I probably had an ear infection. Eventually it would go away. That is, until it happened again.
I didn't notice where you live but here in this DC area, we have some really good neurosurgeons who are experienced in Chiari who take on really difficult cases and fix them. My nureosurgeon did my surgery even though I had been told to go home because I was too risky a patient. I had an excellent result, I think. The best part for me is that the dizziness, vertigo, and the fogginess is gone. As an added bonus, he was really kind to my neck and my hair. He puts all the stiches on the inside and he cuts very little of the hair off.
Be persistent in trying to find an answer. Part of my problem was that MRI didn't exist back then and when it finally came along, the person reading the film didn't recognize it or know what it was. We have such good technology now that we all should be able to get answers for what ails us.
I hope you get some answers. Don't be scared. From educational seminars I've attended they now think that there is a large segment of the population walking around with Chiari who never will know they have it because their symptoms are minimal. Your first thoughts about Chiari ARE scary. When I was first diagnosed my first thoughts about it were bad; I had never heard of it. I looked at my husband and said "I'm afraid I'm going to die" and he said "You might - but you might have anyway without Chiari" and he'sright; so I hope you won't spend time worrying about what might happen. It takes a lot of energy! It always helped me to remind myself to "not go there" when I started to worry. It took some practice but it worked for me. My neurosurgeon who is a Chiari researcher tells me that he has never heard of a patient who has died from chiari - rather, he said, it is from having someone do the surgery who really doesn't know what they are doing or other complications. I lived with Chiari for more years than you are old and I'm still kicking, so I guess I'm living proof that life can go on in a positive way. Even though I was sometimes symptomtic over the years, I raised a family, worked for the government, socialized, and volunteered. That's my little great granddaughter in the picture with me taken about a year and a half ago. That was before I did the surgery. For the last l5 years or so I had pain eery day, but I didn't have the Chiari diagnosis hanging over my head and that may have been a blessing.
iI had my surgery in Jul 2010. It took a lot of years for me to get diagnosed and get help. It wasn't a bad experience for me - I had some pain but nothing that the pain medication didn't take away. When I woke up from the surgery the next day, for the first time in a long time, I wasn't dizzy and nothing hurt. Part of it, of course, was the fairy dust they had given me. It's been nine months for me and I continue to do well. I have met so many people in person who have been living with Chiari or have had the surgery and are leading very productive lives. I hope you will keep a positive attitude and keep looking for a solution. Because people with chiari don't necessarily look sick, it is sometimes difficult for our medical folks and family to take our complaints seriously. That's why we have to be persistent and look for answers. That - and find the right doctor - that's such an important part of the equasion.
Please remember that nothing is ever as horrific as we can imagine it to be. Also, it's important as you read things on the web that, most of the time individuals who get good results from chiari surgery go on about life and don't stay on support sites. So, it's important to put things you read in perspective. When I first got diagnosed and started reading stuff, it scared me half to death until I started realizing that. Keep trying to enjoy your life, but work at finding an answer. They are out there now - It took me a very, very, long time, but I eventually found the right doctor who could make my life better.....you will too! I hope you find your answer too. You and your family are in my prayers.
Hugs and Blessings
Shirley
Abby
I'm glad you are having a bettter year. Any improvement IS good. I'm tired a lot too - and when I feel that way, fortunately I can sit down and rest. It's called retirement! Before my diagnosis, my husband who works constantly even though he's retired, would come in the house (always, of course, when I was taking my rest) and look at me funny and say "you're not getting very much done sitting there on the couch" And my response was "You don't understand - that IS the PLAN. LOL!! I think he thought I was being lazy; now that he knows there is a reason for it, he doesn't say anything. Gotta love him!
Hugs
Shirley
Hey Amy,
I do believe they come and go. I don't experience my symptoms all the time. Sometimes new ones pop up that I've read others have had. Then they come and go as they please.
There are some medications that can help symptoms of Chiari. They are not for Chiari itself. I take Topamax for 'migraine preventative' which has actually helped my head pain...as I have less headaches/migraines its helped the rest. Other people take muscle relaxors for the neck/head pain.
-Alicia
I’m pretty sure I’m supposed to…lol I usually bring a bottle of water with me to bed. So I take it with water but I don’t take it with a lot most of the time.
Abby said:
Alicia,
Do you drink plenty of water with Topamax?
Amy, it sounds like you've been through a lot in your life and still have a lot to deal with. It's hard to fathom that someone would actually roll their eyes at you when you disclosed such personal history....not only insensitive but also extremely unprofessional--I'm so sorry that happened to you......and shame on them. I grew up very poor down in the Appalachian Mountains so I also understand how people of limited means are sometimes treated. I know it's hard, but please try not to let other people affect how you feel......I would just say to those who say or do negative things, "I understand that's how YOU feel". That let's them know that you won't validate what they are feeling or saying. Just keep fighting and keep a positive attitude. Time oftentimes has a way of working things out. Just when we think we it will never end......it gets better. It happened that way for me. I hope it will for you too soon!
Hugs
Shirley
Amy M. Brinkley-Osborne said:
Thank you so much for your story Shirley, your words really make me feel better.
I don't have a primary care physician because no one will accept me since I have so many health problems. The only ones in town who will see me are at the low-cost "poor people's clinic." Don't get me wrong, I'm poor, too, but the doctors, nurses, receptionists, everyone, acts like they are doing a great thing by even talking to poor people. They certainly don't do medical care! My experiences with them have included having to make threats of lawsuits after waiting two months for a referral to a cardiologist, a male doctor skipping an exam for massive headaches and instead patting my knee, they always, always get my medication list wrong in their computers, but the worst was a female NP asking my life story and when I told her I've been raped more than once she did a huge eye-roll and sigh... I decided to die before I go back to that clinic again!
I'm guessing NS is neurosurgeon and NL is neurologist? I plan to go to a neurologist at University Hospital in Columbia, Missouri. Does anyone know a good one there? I'll be traveling, but this town doesn't have any good doctors at all, so I don't mind.
First I need to see my cardiologist and endocrinologist for my follow-ups that I keep cancelling before I look for a neurologist. I feel so stressed lately and my anxiety levels are so high with my health, my husband's health, our finances, and at the moment we are trying to take care of my in-laws...whew! One thing at a time...lol
I didn't know that there is medication that can help Chiari. I thought the only treatment was brain surgery?
Dear Amy..1st off...Happy Easter!!
I just now read your post about your experiences with the med professionals...dare I even call them professionals....I am appalled at how you were treated....Unfortunately, I know , myself, I have dealt with a lot of 'winners' during this journey...
Some people with Chiari try to get by with managing their symptoms..I think, like Alicia said..she takes Tomomax..I take pain meds when I have to. Basically, i treat the symptoms when they arise. There is cure for Chiari, no pill..though there is a treatment called Posterior Fossa Decompression which many of us here have had done. I have had good results from the operation..still have some rough days..but....better than before.
I had NO LUCK with NL's....none of the ones I had seen know little if any about Chiari. Finally when my symptoms worsened...i by -passed the NL and went straight to the NS woho my primary recommended....and i did chose to get a 2nd opinion..the 2nd doc agreed with the 1st NS..so I went with the local NS.
I wish you could get a primary to coordinate all your care.....they are hard to find...I was lucky and hit the jackpot and and had a primary that had passion.
keep us updated.
Blessings,
Lori
Amy M. Brinkley-Osborne said:
Thank you so much for your story Shirley, your words really make me feel better.
I don't have a primary care physician because no one will accept me since I have so many health problems. The only ones in town who will see me are at the low-cost "poor people's clinic." Don't get me wrong, I'm poor, too, but the doctors, nurses, receptionists, everyone, acts like they are doing a great thing by even talking to poor people. They certainly don't do medical care! My experiences with them have included having to make threats of lawsuits after waiting two months for a referral to a cardiologist, a male doctor skipping an exam for massive headaches and instead patting my knee, they always, always get my medication list wrong in their computers, but the worst was a female NP asking my life story and when I told her I've been raped more than once she did a huge eye-roll and sigh... I decided to die before I go back to that clinic again!
I'm guessing NS is neurosurgeon and NL is neurologist? I plan to go to a neurologist at University Hospital in Columbia, Missouri. Does anyone know a good one there? I'll be traveling, but this town doesn't have any good doctors at all, so I don't mind.
First I need to see my cardiologist and endocrinologist for my follow-ups that I keep cancelling before I look for a neurologist. I feel so stressed lately and my anxiety levels are so high with my health, my husband's health, our finances, and at the moment we are trying to take care of my in-laws...whew! One thing at a time...lol
I didn't know that there is medication that can help Chiari. I thought the only treatment was brain surgery?
Amy,
Since your geneticist recommended that you see a neurologist, could they maybe recommend someone since you don't like the neurologist that you've been seeing? I would never go back to someone that acted like they thought I was faking! That's not a very good way to start out. I hope that you get some of your other issues worked out so that you can see a neuro without worrying about some of the other stuff. Please don't cancel any more appts. It sounds like you need to be seeing these specialists to help you with your medical conditions.
Take care,
Carla