New here....symptoms, deal with them or surgery?

General
1

Hi everyone. New here. Hope it's OK if I share my story and ask some advice.

I'm a 44 year old female. My symptoms started in my early 20's (around 1989/1990 I think). I was having upwards of 50-100 of the wonderful icepick headaches a day whenevery I coughed, sneezed, laughed, had a BM, you name it. They would last 5-10 seconds, pretty much disable me for that period of time and then I'd be on my way.

I visited a headache specialist in Tampa where I was living and I had an MRI. I remember him describing how your brain is not supposed to fall below this "line" but honestly I don't remember if he actually said "Chiari". He put me on a blood thinner which worked quite well. I would have an aura of the headache coming on but it never came. But, being in my 20's, working full time and going to grad school, I eventually stopped taking the meds, and at some point my headaches went almost totally away for years!

Fast forward 20 years....the headaches started coming back. Saw a Neurologist and had another MRI 3-4 years ago. Confirmed the Chiari and I think he said it's 4-5mm. IN addition to the short icepicks, I started to have throbbing pain in that same area. I learned that if I took 800mg Advil as soon as I felt it coming on, it didn't get that bad and would be gone within the hour. Unfortunately, there have been several times when I've ignored it, or have not been in a position to find/take the Advil and it's like someone set a bomb off in the back of my head. I've been on the verge of going to the ER for help with the pain on numerous occasions. ONce I get the Advil in me, though, the pain is usually gone in an hour or so - so I endure it.

After the last episode a month or so ago, I started digging into things again and discovered that there are a lot of other things I've experienced over the years that are probably related: dizziness, visual disturbances, tingling in my hands/arms, intolerance to bright light, intolerance to loud sounds, cold hands/feet, depth perception issues, fluid sound in ears (It always sounds like waves in my right ear), among other things

Unfortunately I live in Spokane and the closest NS is Dr. Ellenbogen in Seattle which is 5 hours away. He's also probably not in my network but I'm not sure.

So here's my question....my symptoms are bearable. I've read stories of people WAY worse off than me. Is surgery worth the risk for what I'm dealing with or do I tough it out?

Thanks for listening!

2

I have no answer for you as I just want you to know I am going through a similar issue my family feels yes I’m not the same person and yes I’m very scared to have the surgery but I wonder if the risks are worth the rewards or if the are even going to be rewards because there are no guarantees. Great question

3

I was diagnosed almost exactly 12 months ago. At that time I was mainly experiencing the headaches you describe and probably a few other "minor" symptoms that I didn't connect until later on. At that point my NS thought I was a good candidate for surgery since the herniation was significant at 25mm. He told me that it was up to me and how much it was affecting my quality of life. Fast forward 6 months to the summer of last year and my symptoms had drastically increased, I was then suffering from numbness/weakness in my arms and legs, slurred speech, problems with word choice, and other memory issues. I saw my NS again in November explained the new symptoms and he strongly recommended I had the surgery. I took a couple of weeks to think about it but I eventually decided to go ahead but thought I should wait for the summer. A few people pointed out to me that I was just delaying the inevitable and if I had made my mind up I should just get it all booked in. So I did and I had surgery on Jan 28th. 4 weeks later and I feel better than I have in years. You can read my story here http://www.chiarisupport.org/forum/topics/3-weeks-post-op-recovery-going-better-than-i-ever-imagined.

The main reason I decided to go ahead with surgery is that my NS said that once your start to experience symptoms associated with nerves it will only get worse, and the longer you leave it untreated the greater the chance of permanent damage. I have been told that the tingling in my fingers, the speech and memory issues could take up to a year before I notice significant improvement.

Each one of us is different, and there is no way to know what your recovery would be like or if your symptoms are going to get worse. You need to weigh up the pros and cons, and talk to different people. I had a long chat with a co-worker and my boss - they were the ones who made me see sense. I think because they weren't so close to the situation, unlike my husband, parents, and doctor.

I hope this gives you a little more insight. Good luck with your decision.

4

Hi!! I also live in Spokane and am having a hard time finding a Neurologist that will actually listen to what I have to say instead of going right to the "migraine" diagnosis. I couldn't find help here so I went to Dr Oro in Colorado for my decompression surgery in 2009. The surgery helped a lot of my issues but still struggling with many that have worsened in the last few years. I know how frustrating it is but don't give up until you find someone who will help you! I've heard Dr E in Seattle is awesome as well and if I continue to have issues that is where I'm going. I had the surgery because my CSF was completely blocked on one side and partially on the other and I was afraid of developing a Syringo in my spine if I didn't get the CSF flowing again. Now I deal with too much fluid along with many other issues. It's truly an individual choice whether to have surgery or not. This surgery is a BIG deal and not a decision to take lightly. Just my thoughts :) Best to you and please share if you find a doc here in Spokane because I would love to find one too!!

Susan~

5

Hi,

I agree with what has already been said above.

I am having my surgery on the 13th of this month. Am I nervous? Sure! And I also kinda excited? Sure! I want to feel better.

I think the key for me was the increase in my symptoms and the things that interfere with my life. I don't want to get worse or suffer permanent damage or develop a syrinx.

The key for me was finding the right surgeon. I found a surgeon who performs this surgery around 2x per week and has great statistics as far as healing/complications etc...

Take your time and find the right place/surgeon if you feel you need surgery.

And once you DO make up your mind keep a positive attitude. DO be informed about things like complications etc... DO do your "homework" and dot your i's and cross our t's.

BUT, don't focus on what could go wrong.

Prepare yourself mentally for a healthy recovery if you do decide.

Remember, success stories don't usually post.

Attitude is important once you make your decision.

So many wonderful people on this site that can help you decide.

And also to help you on your journey if you decide to have it or not.

:-)

*one thing that always helps me : pretend someone told you that you CAN"T have the surgery.

Say your insurance said : "nope"

Would your gut say Hey! I need this! I want to have this done! OR would you say "Whew! What a relief! I didn't want it anyway!"

6

Like so many said to my daughter and I before she had her decompression surgery, you are the only one who will really know when and if surgery is the correct decision for you. My daughter had decompression surgery this past August. She had lived with headaches for YEARS and had received the Chiari diagnosis two years ago.

She was struggling in school, struggling to even leave the house to hang out with her friends, she was having short term memory loss, and just in constant pain all the time. So at 17 she decided that brain surgery was the best option for her. She still has headaches and some other issues, but overall she feels WAY better.

Some very important things to keep in mind.....

The surgery is NOT a cure, it is only a treatment.

Make sure you research NS's and find one that YOU are comfortable with. There will be good and bad reviews about all of them.

Do your research about the surgery and what your potential NS will do - duraplasty vs no duraplasty. If your NS decides to do a duraplasty using your tissue vs synthetic

Ask lots of questions!!

There is SO much information available (good and bad), follow your gut and what your body tells you is best for you!!

HUGS!!

7

Hey there,

I am close by in the Tri-Cities and have recently been diagnosed with Chiari. I heard about Dr. E and would love to go see him. Your post was from back in Feb. Did you end up seeing him or someone else? I would love to chat with you if possible. Send me a message when you have time. Thanks so much!

Nicole