Aa
Just diagnosed- questions for the experts!
Just been diagnosed with Chiari 1 with 9mm. Im a 30yr old female and i feel like I'm 20yrs older than I am..always tired it seems. I've been 'floaty' for about 8yrs. Does anyone else feel floaty? It doesn't seem to be vertigo spinning but more like my head is on a constant waterbed...or like I've just gotten off a boat (sea legs, but in my head). I get headaches and neck aches, and balance is inconsistent where I don't always trust what my body is going to do...with these symptoms do you think surgery is a good idea? I see a nuerologist this week, and am thinking about seeing a specialist after that. My symptoms definitely take a toll on my mental health, but I also don't want to jump to surgery right off the bat if I don't need to. Is there medication for floaty/dizziness that works well?
Thanks for any/all input.
Thanks for any/all input.
COMMUNITY LEADER
Glad you have an appointment with a NL today....ask about ehlers-danlos while there...hope I posted b4 you go....
looking forward to updates.
Thank you thank you!! I appreciate this forum! I have an appointment with a neurologist today but I'm trying to get in with a specialist after that.
COMMUNITY LEADER
My surgery was 5 yrs ago this past May....I am doing better then I was b4 surgery,....and with each yr that passes I see more benefits....healing takes time and is not instant...and those that act as if it is, may only suffer set backs from doing too much too soon....
I did not have any complications outside of a reaction to the pain med morphine, once it was changed I was ok....
Surgery should only be considered once ALL related conditions have been ruled out and are taken into consideration if surgery is deemed right for you.
Yes, this is a major surgery and it does have risks...and can be invasive in order to get the proper results....the less invasive procedures that are done tend to not have lasting effects and require more surgery and the more invasive one.
Find a true Chiari specialist and find out how your Chiari is affecting your over all health and what related conditions you may have.
I do yoga...not only for physical strength but for mental/physical clarity. I also road bike and try to go for walks and occasionally jog.
I have more questions as to the long term effects of surgery on people. Anyone out here that has had surgery 5+, 10+ years ago? How do you feel? Are your symptoms still better or gone? Has there been lots of complications? Part of me wants to jump to get surgery because I just want everything to be better (and maybe it wont!), but another part of me says this type of surgery is pretty invasive (yes?) and I should try to hold off until I absolutely need to?
I have more questions as to the long term effects of surgery on people. Anyone out here that has had surgery 5+, 10+ years ago? How do you feel? Are your symptoms still better or gone? Has there been lots of complications? Part of me wants to jump to get surgery because I just want everything to be better (and maybe it wont!), but another part of me says this type of surgery is pretty invasive (yes?) and I should try to hold off until I absolutely need to?
You found a safe and encouraging place. I am eternally grateful for finding the encouragement and prayers of the kind Chiarians here. I had many of the same questions you mention in your posting. What struck a cord of familiarity was your concern about your mental health. Mental health is pretty important, and if you suffer from any mental issues (I am challenged with significant depression), I can only stress the importance of caring for that as much as you do to your physical health.
I thought a lot about whether or not to consider the surgery I was researching. So many things go into that decision; however, cognitive decline, memory issues, and a general feeling of disorientation were my biggest concerns. I am an English professor and had a lot of difficulty teaching my class during the Spring 2014 semester.
What types of physical activities do you participate in? When I begin to think about quality of life, movement always comes to my mind. To help with my depression, I started to run (2 half marathons), but it began to get more difficult with the increasing neck pain. You said you also have head and neck pain. Does this limit you from doing anything you love to do? As Selma has suggested to you above, it is key to consult with a surgeon who knows about, understands, and performs many Chiari surgeries. It’s the difference between being in the care of a good surgeon or one who has performed so many of the Chiari surgeries and is so familiar with symptoms, specific variations of the surgery, and how to effectively deal with any complications that may occur. I am not knowledgeable about the different types of surgeries and which is best for a specific issue with your Chiari. I know that Selma has a very extensive list of surgeons who do specialize in treating this condition.
I wish you an informative consultation with your neurologist this week. Come back to the community to keep in touch and to ask m
I thought a lot about whether or not to consider the surgery I was researching. So many things go into that decision; however, cognitive decline, memory issues, and a general feeling of disorientation were my biggest concerns. I am an English professor and had a lot of difficulty teaching my class during the Spring 2014 semester.
What types of physical activities do you participate in? When I begin to think about quality of life, movement always comes to my mind. To help with my depression, I started to run (2 half marathons), but it began to get more difficult with the increasing neck pain. You said you also have head and neck pain. Does this limit you from doing anything you love to do? As Selma has suggested to you above, it is key to consult with a surgeon who knows about, understands, and performs many Chiari surgeries. It’s the difference between being in the care of a good surgeon or one who has performed so many of the Chiari surgeries and is so familiar with symptoms, specific variations of the surgery, and how to effectively deal with any complications that may occur. I am not knowledgeable about the different types of surgeries and which is best for a specific issue with your Chiari. I know that Selma has a very extensive list of surgeons who do specialize in treating this condition.
I wish you an informative consultation with your neurologist this week. Come back to the community to keep in touch and to ask m
Hi there, is it possible you are feeling intracranial pressure? I thought i was dizzy for a while but that didnt really fit the bill for me either. My funky head feeling would come in waves like every 4-5 minutes but last all day. I went to an ent and after lots of tests and mri...it was chiari. I hqve since figured mine out....its pressure that can be stong or weak depending on the day. For me it made sense.. Our bodies make csf every 5 minutes. Well i was partially blocked and fluid was not flowing well. Well that feeling i had was like every 5 minutes. Anyway wishing you all the best in the journey. Find an expert that does this all the time. You might need to talk with an ns (chiari expert of course) tomget some more answers. The neurologists seem to want to medicate and sometimes dismiss what role chiari really plays in your life. Hugs and welcome chiari warrior!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I have to say ditto to what rod44 has already said above...it is important to know if you have a CSF obstruction and other related conditions....like a syrinx, tethered cord,ICP, POTS,sleep apnea,ehlers-danlos...it is very important to know about these b4 surgery is considered.
You will also was a true Chiari specialist as rod mentioned ....you want one well informed and experience with Chiari and related conditions...
We do have lists available for you to use to research Drs.... the lists are not referrals nor endorsements for those listed, you will need to visit a few and see which one is right for you....so yo help you choose, you will want to educate yourself on Chiari and all related conditions to help you know when you do find the Dr.
Hi & welcome :)
The lightheaded feeling is something most of us deal with.
Surgery depends on many things. First you will need to get a flow study, this will show any obstruction of CSF, this can lead to Syringomyelia. A full spine MRI to find other related problems such as Disk Degeneration, Tethered Cord and Syringomyelia.
The Neurosurgeon will look at your quality of life and how your illness is impacting. Surgery is not a cure, it is to help with symptoms and to improve your quality of life. This is why it is imperative that the Neurosurgeon you chose is a Chiari Dr, Experience is important so research the Doctors you deal with and ask loads of questions.
The lightheaded feeling is something most of us deal with.
Surgery depends on many things. First you will need to get a flow study, this will show any obstruction of CSF, this can lead to Syringomyelia. A full spine MRI to find other related problems such as Disk Degeneration, Tethered Cord and Syringomyelia.
The Neurosurgeon will look at your quality of life and how your illness is impacting. Surgery is not a cure, it is to help with symptoms and to improve your quality of life. This is why it is imperative that the Neurosurgeon you chose is a Chiari Dr, Experience is important so research the Doctors you deal with and ask loads of questions.
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