Decision Time...Need Help

[actressmouse]

I've been dealing with daily headaches for approx. 1 1/2 years, hearing loss, vision changes, aches, pains. insomnia, etc.  I've been seen by pain docs, NS, PCP, Psych, Genetic doc., audiologist, and NL.  I've tried every pain med under the sun, special pillows, changed lighting, etc.  I am now at a crossroad....I've been waiting on deciding about PFD surgery due to several issues- one is financial and the other is - fear.  The headaches and hearing loss are worsening.  I have more bad days than good, and I am not participating in the usual activities that bring me joy as much as I used to.  

Here's my question...if you've had the surgery...how did you know you were ready?  Some days I feel okay and I think to myself, "you're just a big baby...suck it up and get yourself together!".  Then the bad day comes and I think to myself, "I just can't deal with this pain!".  I'm scared, but I need to make this decision.  My husband is EXTREMELY supportive of whatever decision I make, as are my 2 sons.  I don't want to mess things up and end up being in worse shape than I am already.  Help!!

[jenshead]

Hi - I always try to offer an opinion from 'the other side', as I haven't had surgery.  It IS possible to modify your lifestyle in some cases, and some people can find the right combo of medications.  Not everyone can, but if I have then I assume more people have.  Of course, I have no complications (syrinx, TC, etc), so that helps.  If there's any advice I can offer you from my experience, feel free to ask.

Like everyone else said - you'll know when the time is right.  And clearly you're not making any rash decisions, since you put this off once before to think it over.  

[fblea]

As everyone said, you will know when you've reached your limit and are ready to take the next step to have the surgery.  Believe me, it was not a decision I took lightly either.  I had doubts all the way - I had to fly really far away for my surgery and spent the entire night before surgery vomiting (gross I know) in the hotel room bathroom.  I wasn't sure if it was because my nerves were so wrecked or because the darn Chiari had made flying miserable for me (or both)!  In fact, as they were putting the IV's in just before surgery, I had a major panic attack and almost backed out.  All I could think of were the negative stories I had read about and I was terrified I would end up worse off.  Then my husband reminded me just how bad off I already was (as I think I was in some denial that I was doing ok when in fact I was already merely existing and not living).  I couldn't work anymore, I couldn't play with my children or read them books, travel, or really do much more than lay around in the dark.  I was already walking with a cane and having drop attacks and couldn't be left alone at home for long.  I then realized that it was a chance I needed to take if I wanted to have any real shot at getting my life back.  I was also a thousand miles from home and figured that I had already come so far to turn back (literally and figuratively)!  

I will be honest and say that the recovery was rough but I got through it.  I am now about 4 1/2 months post-op and I have tremendously improved.  I walk perfectly, no more drop attacks, numbness is mostly gone, I even hear better, my sense of smell is better, food tastes better, no more headaches, no more urinary problems and no more depression.  I know it is still early in the healing process, but so far, I am truly glad that I went through with the surgery as the results for me have been completely worth it.  I finally have hope that I can live a fuller and healthier life.  I know that was just my individual experience, but I guess what I am getting at is - you will probably just reach a point in your life (maybe you already have) when you feel as if you really have no other option and where things can only improve from where they are.  It is still a hard decision and I know I fought it for several months and changed my mind just about every other day.  
   I know it sounds cliche, but trust your instincts (and your heart as Linnie said)- you'll eventually come to the decision that is right for you.  I wish you the best with all of it and just keep talking it out... it does help you reach the clarity you need to make a decision you are comfortable with.  Take care -

[linnielou232]

You asked how do you know when you are ready for surgery?  I think you answered your own question.  My NS told me and this is what made my decision on surgery.  He asked.  "Is your life good the way it is?".  I knew in my heart as I read in your word's that your not liviing life the way you want, but as Selma said you will know when it is a good time for you.  I had surgery 17 mths ago and I'm still healing, but I have no regret's in having surgery.  I'm  way better off than I was 2 yrs ago.  You stated your worried with your voice.  Because I did wait to long I have nerve damage in my tongue and my roof of my mouth get's raw at times.  I would ask the Dr. about this.  Having surgery or not having Chairi is a life altering issue that we all have to alter our lives for sadly to say.  I wish you the best in your decision.  Just know your not alone and we are here to support you in your decision.  Those of us who have had surgery know what you are going thourgh.  Follow your heart.  It will lead you to where you need to go.  Best wishes

[actressmouse]

Thanks, Selma...I really appreciate your support. {{hugs}

[selmaS]

  Well, I know u will know when the time is right for u...no one can make that decision for u, and u will still be scared.....

I am soooooooo surprised to hear Dr B is talking removal of the tonsils, as it was an older method of decompression, but, it also depends on what is going on inside and the best or only way to treat it.

Talk to Dr B about ur concerns with singing and see what he can tell u about that to help u alive ur fears.

      Keep us posted

       "selma"

[actressmouse]

I do have a NS I am comfortable with at TCI.  I have a 6 mm herniation that is peg-like and "corking" my foramen magnum coupled with a decreased CSF flow.  Dr. B at TCI is recommending surgery.  I held off in August of last year because I didn't think I was ready.  He agreed to wait as I did not have TC or a Syrnix at that time.  He did say that the tonsils were "jammed down in there" and that during surgery he would "go medievil"  on them and remove them entirely.  I am nervous because I don't know how that would affect me later on (I am a singer) and I don't know if there's much "muscle memory" stored there.  I don't have severe issues with skin like some people with EDS have-- I do have some due to the Stickler's Syndrome (transparent skin with small veins, and some slow healing); however, I do have cranio-cervical instability and joint issues/disc herniations.  I appreciate your response and I am reading others' journals to see how they fared after surgery.  Thanks....the talking is helping.

[selmaS]

  Hi...I understand how u feel...and I had HA's most of my life, and had a drop attack that resulted in an injury they required surgery on my knee and ankle...that lead me to my chiari dx....

  I did a lot of research, and if I did not have an obstruction and things were not getting worse I may have help off, but with the CSF not flowing properly it was only a matter of time for a syrinx to form, and more drop attacks.

  Once I found a Dr I was comfortable with, only then did I consider moving forward with surgery, this was almost a yr after my dx.

  I hope this helps : )