Just Diagnosed

Hello all.

I was just diagnosed with Chiari malformation yesterday with a 6mm herniation. I am concerned and believe I will move forward with surgery very soon. But I have not scheduled it yet and still am trying to take everything in. I have so many questions.. If you have the time please answer them below.

Life insurance and disability insurance: I don't have either of these yet.. Is there a possibility to qualify after being diagnosed?

Surgery: How long does it take to recover? How intense is it? Any tips before going in? Is there any other way to treat this disease?

Should I wait or get the surgery now? I hear that the disease can get worse and my chances of recovering the symptoms get smaller the longer I wait. I also hear that the disease gets worse as your get older. I am only in my twenties and am concerned if I get the surgery now it will get worse in my 30s..

What symptoms did the surgery fix for you? My neurosurgeon is convinced that Chiari is only causing my head aches and numbness. I also experience brain fog, full body twitches, memory loss, and blured vision, also chest pains and difficulty swallowing..

Hi, Malissa, have you gotten a second opinion? Not a bad idea with a tricky condition like Chiari. If you use the search box to search on some of the symptoms you mention, you will see at a glance whether others have experienced the same symptoms. You can also search on "life insurance," as I imagine this has been raised before.

How are you today? Have you scheduled surgery?

I hope you have explored the discussion boards a little. So many of these questions are VERY frequent but are also very different from one person to the next. Two people of the same age and health can have the same procedure and recover completely differently. For your questions, I will answer them from MY experience, which is not typical or atypical, just mine.

Life/disability Insurance: You will likely still qualify after surgery as the surgery is a corrective surgery to reduce/limit Chiari's effect on your body and life. I would question your eligibility if it is independent insurance verses offered by an employer. For my employer sponsored insurances, I had to wait one year to be covered for existing medical conditions (Chiari.)

Surgery: Recovery can take from 4-5 weeks up to 5-10+ years. It's not a process to take lightly. The surgery in its least is very invasive. They make a 3-5" incision in the back of your skull/top of your neck. They then either cut through or move the muscle to expose the skull. They remove an approximately 1" piece of the skull to expose the dural sac (the part that covers your cerebellar tonsils.) If this is the extent of your needs in surgery, they will put in some type of mesh plate and stitch back up. This is the least invasive. I, for one, also had the dural sac opened, a patch grafted and placed over the opening. The back portion of my C1 vertebrae was removed. So, not to make it scary, but it is VERY intense.

Treatment: There are other treatments, but they all treat the symptoms, not the cause. They can treat things like headache, sleep problems, brain fog, etc. Surgery is the only corrective treatment, even then it's not guaranteed.

Whether you get it now or wait is a question you really need to sit down and talk to the surgeon and loved ones about. You should weigh your symptoms, the rate of progression of symptoms, and the recover as well as external factors in your life. Can you afford to take off work for an indefinite period of time right now? Do you have children that will require your attention and needs afterwards? Can you live with the symptoms you have now if they don't progress?

Keep in mind that even a successful surgery doesn't mean that it will correct or reverse any of the symptoms. This was made VERY clear to me prior to surgery. It CAN get worse or it CAN stop progressing. It's truly a matter of weighing your pros, cons, and the future.

As far as Chiari, it in itself causes very little pain. In reality it's generally the decrease spinal fluid flow or syrinx's or the increased intracranial pressure CAUSED by the Chiari (as my surgeon explained it.) Over time the increase of pressure can cause a loss of function (including the other things.) It was explained to me as wrapping a string tightly around your finger for a few moments and removing it quickly. Do this repeatedly and you're going to lose function and feeling in that finger. The same happens with the brain and pressure.

Please Please Please sit down with your surgeon and talk about all these things. If they won't sit down and talk to you about it, find a second opinion. Your surgeon should walk through these things WITH you, not just look at your anatomy and tell you what's best. I hope this helps! XOXO

Thank both so much for your time. . I haven’t booked the surgery yet. . I don’t have spinal fluid blockage I just have chiari. . The first ns will opperate the second wont… I’m even more confused than when I started this journey

It is a very confusing time and there's so little support for Chiari (outside this place.) Take your time in booking surgery! Think it through, talk it through, be comfortable and confident that it is what is right for you. There's nothing wrong with getting other opinions and finding a surgeon you like and one that, if you decide against surgery, will keep you as a patient in the event you need it down the road. XOXO