How do you know when its the right time for surgery?

[huskerfan71]

I met with Dr. Oro this week and he thinks surgery can help me.  He wants to do a decompression and a C1 laminectomy (sp?).  I am having a hard time deciding what to do.  My only major symptom is that dang headache every time I bend, laugh, cough (you know what I mean).  The headaches seem to be getting worse in both frequency and intensity.  My cine MRI shows only miniscule flow, so the surgery should be able to help with that.  I go back and forth between "lets just do it and get it over with" and "if I wait maybe things will get better".  

This is so confusing and such a big decision!  Any tips or advice from those who have been in this dilemma would be very much appreciated!

Thanks!

[selmaS]

  Congratulations !!!Please post ur surgery date in the surgery Date thread, so a prayer thread will be posted for u.

[huskerfan71]

Thanks everyone for your input.  I did it!  I scheduled my surgery for January 28th.  I am relieved that making the decision is over!  Now I have 2 months to prepare for the big day.

[girlinxile]

When headaches changed affecting my vision is when I finally got the mri showing Chiari. The NS consult blew me off but ordered the csf flow. Didn't blow me off after it showed the obstruction. I too was not sure.... But hearing that leaving it too long can form a string, or permanent damage, I felt compelled. Rescheduled from August to November thinking I needed to wait.... But early September it had been progressed so fiercely that I had to stop working.. And was rescheduled for end of September. That was  canceled due to bad labs and every day symptoms  got worse. Constant Headache, tingling hands, memory issues, severe neck pain.. Every day worse. I was Sooooooo excited by the day surgery for there. When I started to go, it went so so so quickly. So in a way, I feel like you will know without a doubt when. But if not, just remember that waiting too long can cause other symptoms and damage. Brain surgery is terrifying, the recovery is long with a lot of taking it easy. You will need help. So if not now, maybe start working on how you will make it through once you do. Good luck, and know folks are always here for support... That support kept me from going crazy when no one else in my real life knew what to do about something they had never heard of.

[selmaS]

  Hi,,,,,like Rhea I am not going to persuade u to have surgery, but explain what helped me decide.....

My NS as well as research I did on my own showed that one a syrinx forms it can cause perm nerve damage, and a syrinx forms when the CSF flow is obstructed and not much is getting thru.

Now if I wait with an obstruction a syrinx can form at ne time....and if it  develops slowly I may not notice ne new symptoms....

But it can also develop very rapidly that may cause me to have to have emergency surgery and not with a surgeon well experienced with  Chiari.

So, do I want to gamble that I will do ok, or take a proactive and preventative  choice to restore the CSF flow to help prevent a syrinx from forming and hopefully relieve some of my symptoms.....


This is the only way I could decide, and having  a Dr I felt not only comfortable with but confident in.

[AZHR]

I had the surgery on 10/31.  I was getting worse every day with lots of differing symptoms, my vision the most disturbing.

It has been rough going but I am no longer deteriorating daily.  That alone is a blessing!  My NS found at surgery that the MRI did not reveal the whole picture of what was truly going on.  It was more than expected as to the position of the tonsils.  There was a 9 mm herniation, but the tonsils were tilted differently, causing all my symptoms.

Only you can make the decision but it helped me to have a friend whom I trust completely to make non biased decisions with me & my husband at our final NS visit to make the decision.

I know how you are feeling!

[huskerfan71]

Lisa it is good to know that I am not alone with what I am feeling.  I hope you get all of your testing done soon so you can schedule your surgery!

Thanks for the comment!

[desertstorm2009]

You and I are in the same boat, at the same time, with potentially the same NS. As I was reading your post I quickly realized that's exactly how I feel as well. We certainly didn't ask for this, nor did we expect it to happen to us.
I can tell you this and I hope it helps us both in our decision. My daughter had this very surgery with Dr. Oro ten years ago when he was practicing in Columbia, MO. She has suffered immensely for years. Her story is quite amazing. He did a great job with her, she has been well since.
I try to think of the positive every day, but it's hard especially when carrying around this type and level of pain. I feel like I'm backed into a corner here, I'm sure you can relate. I recently told my daughter, I feel like every day I wake is a blessing. She said "no mom, every day you wake right now is hell, after your surgery, every day will be a blessing".
Meanwhile, the pressure in my head seems to worsen almost daily, if that's even possible. So yes, I think I will be having my surgery soon. I know they schedule 3 - weeks out. Today, I have to go get another eye exam, the last thing Dr. Oro wants me to do before surgery. (this is to rule out Pseudo Cerebri) one of the things on this list, I'm sure he went over with you too.
Anyways, I'm thankful for this forum, at least we know we are not alone in this craziness :-) Lisa

[huskerfan71]

Thanks for the comment!  I know that miniscule flow is not a good thing, and I have to get it fixed.  I am glad to hear others "encourage" me to schedule my surgery.  Maybe I am hesitant because its so dang scary.  LOL.  I am sure that is a common emotion when making this decision.

[RheaAnn]

I'm not trying to persuade you or dissuade you, but if there is minuscule flow, that means a very small amount of CSF, which means you have a CSF obstruction.  That is the reason for the pain after bending, laughing, coughing, going to the bathroom. That usually will not get better. I have not heard of anyone with a CSF obstruction get better on their own.  Now, just because I haven't heard of anyone, doesn't mean they exist. They may be living a great life and not needing a support group. With that being said, if your symptoms are getting worse in frequency and intensity, AND Dr. Oro suggests the surgery, it may be something to consider. Rarely do NS tell someone that they need sx when they don't. It's usually the opposite.

I hope I didn't confuse you! Try to make out a list (pencil and paper) of the pros and cons of sx. and the pros and cons of no sx. Then compare. It's a lot easier to decide when it's written out for you!
Rhea