I need your input. I have been told by one neurologist that the chiari found on MRI had nothing to do with my dizziness and balance issues, because they improve at times and if it was chiari he says this would be constant without improvement only possible worsening. Another said it was. What have any of you found?
All my symptoms can be transient and come and go. I can go weeks without the tingling and numbness in my hands and feet, then its back. My symptoms have been progressively worsening however. I have cervical disc disease and when my discs bulge my CM1 symptoms are really bad, including the balance issues and dizziness. You need to be seeing a Neurosurgeon who has experience with CM. I hope you feel better. Mary
Patty....
Personally, my sx's waxed and waned in severity...have you seen a Neurosurgeon yet???? If not..I really think it would be good if you did see one and hear him out...I never got anywhere with the NL's I saw.
Keep us posted.
Peace,
Lori
Yes he said surgery not appropriate. Have follow-up scheduled. I have the theory that God knew I could not do this and take care of my mother as she is dying. What can I say? He knew I could not do both. I have had another two falls recently. I hope not to have to have surgery any time soon. I still have much to do to resolve my mother's stuff.
Hi Patty:)
I have symptoms that are constant and symptoms that come and go, like my balance issues. I go weeks without falling down at all and then I’ll fall down several times in a short period of time. I have been told that my Chiari herniation and syrinx are too small to be causing my symptoms. So, I’m going to be seeing a NS that specializes in Chiari. You should do the same. There are lists of specialists in old discussions. I hope you find a doctor that listens and takes your symptoms seriously soon.
Crystal
My NL thought my dizziness and balance issue were due to Vitamin B12 and D defiencies. Dr. Oro did my surgery last Sept and my dizziness and balance issue have went away. My NL was very surprised at how well I am doing.
Hang in there and try to get in to see a NS with Chiari experience.
Blessings,
Diana
Yes I did and he said he was not sold that is why I have had balance issues and falls. Very frustrating. I have had a few months with only mild dizziness which has been great. I have had a vague chronic mild headache for some time but not so much that I could not work through it. I got the impression the neurosurgeon had only a couple of pts with the symptoms of chiari, not very comforting. As a Kaiser member I am somewhat stuck for options.
Patty
lori said:
Patty....
Personally, my sx's waxed and waned in severity...have you seen a Neurosurgeon yet???? If not..I really think it would be good if you did see one and hear him out...I never got anywhere with the NL's I saw.
Keep us posted.
Peace,
Lori
Chiari symptoms have their own agenda. Every day is different and I never know when I wake just what problems I will encounter. I can share with you that 2 years ago was horrible for me and my health was deteriorating quickly so I made changes. It is equally as difficult to find doctors that agree. Know that you are not alone and Good luck to you!
My nl did not agree initally that some of my symptoms were Chiari related, but my ns disagreed with her. My symptoms also seem to come and go out of nowhere. I call em flare ups. It happens whenever. This is why my nl didn't believe most of what I was telling her. She didn't seem to think that symptoms can just come and go they should be persistent. Yeah right! Hang in there, you will get some answers when you find the right person to hear what you are saying.
I have Chiari and my symptoms started intermittently and then became more constant over a number of years. I'd get a second opinion.
Hi Patty,
A few ?'s. Are you on Lyrica? Can work for the neuropathy that chiari causes plus tremors & what i call baby seizure like symptoms. Have you had any inner or middle ear checks? Chiari can cause pressure on
nerves that lead to & from the inner & middle ear. Symptoms of the ear issues can be ringing ( which is more like electronic pulses, hummimg ,etc) ,dizzyness, nausea & or vertigo. These symptoms can come & go ,no two people are the same. Find a neuro that has seen many chiari patients, over 100 is a good number. As for a neurosurgeon , you will want one who has done at least 200 decompressions.
Its important to know that the more symptomatic you become, before decompression, the greater the potential of permanent nerve damage, according to my docs.
Your in my prayers
Renee
Your activity has everything to do with the level of severity of your symptoms. If you have Chiari, then there is an abnormal fluid flow of CSF around your brain and spinal cord. Postures and activity of any kind changes the pressure of this fluid, and normally your body would adapt to these changes with no problem. But with Chiari, our pressure systems adapt in strange and sometimes painful ways. Try taking things a bit easier, and always be conscious of your body especially when sitting. Once you do that, you'll find out what works best for you.
Have seen a neurosurgeon but he had little experience with Chiari. As a Kaiser member I am somewhat limited.
Patty
lori said:
Patty....
Personally, my sx's waxed and waned in severity...have you seen a Neurosurgeon yet???? If not..I really think it would be good if you did see one and hear him out...I never got anywhere with the NL's I saw.
Keep us posted.
Peace,
Lori
I would find a different doc. My balance has not been that good. It would make sense to have balance issues since the cerebellum is affected by Chiari.
Your neurologist is misinformed. My mother can't drive because she is afraid of having a dizzy spell while she's behind the wheel. She uses a walker when she's outside the house for the saem reason. She went to ten different doctors before she found one- a GP, no less- who correctly diagnosed her problem. Chiari is not a common malady among seniors, which may explain why doctors don't attribute loss of balance and dizziness to that condition straight off.
I know that my daughter has balance and dizziness sometimes. Before in the past there was days it bothered her all day and the next day she would be ok. It all depends on what nerve is being pushed on that day,thats what we call it.
Patty,
I am in Bakersfield, too. I know a family here that also has Kaiser and their son is affected with Chiari. They are also getting the run around. Can you petition Kaiser to let you go to Batzdorff or one of the other NSG down in Los Angeles? I know a family up north that was able to prove that Kaiser could not provide the care and was able to get surgery at UCLA. My son, is 11 and goes north to Madera...that doesn't help you, but I am here to listen.
After I had my chiari surgery in Jul 2010, most of the dizziness, balance issues, and brain fogginess went away. They are definitely symptoms of Chiari, especially since the cerebellum of the brain does control and affect the balance. So, I'm surprised that he doesn't attribute those problems to the Chiari....there's a lot of doctors out there though who are not that familiar with the symptoms of Chiari and, in most cases, just don't seem to know about it. So keep looking for answers. I was treated for a lot of ear infections among other things over the years because I was so dizzy and had vertigo on an intermittent basis until I got diagnosed with Chiari in my old age in 2007! My symtoms were never constant. I worked and rasised my children to adulthood while coping with the various issues. So, I know how frustrating it is to not get answers. I saw a lot of doctors over the years and got misdiagnosed a lot until I found a doctor who was experienced with Chiari research and surgery. I hope you get some definitive answers soon.
Hugs and Blessings
Shirley