How to get past the Fear????

[Mazie1209]

Hello! I have been a member for a  year, but just dont post often :( Sorry! But I read posts many times daily!  I guess this is more of  vent post, but with questions!  QUick background for those who dont remember me. I have Chiari 12mm herniation, with a syrinx (c5-t3) it is short but quite wide and is expanding my cord, at its widest point its takes up 85% of cord space.  But unlike most on here, I feel pretty good, my headaches are managed with Neurontin, and the only problem (that I know of) that my syrinx is causing is that I am hyper reflexic, and my shoulder hurts, and I have minor nystagumus (sp). Although recently I have noticed that I have less sensitivity in on the bottom of my feet. Again, this isnt bothering me, so not causing problems.  I have been to three Neurosurgeons, all of which said because of my syrinx and reflexes, I should have the decompression surgery.  
I KNOW, that even if I seen the VERY TOP neurosurgeon in the world and he told me I should have or need the surgery, Id STILL be in the same spot I am now.  Scared and DO NOT want the surgery.  My husband strongly believes  I should heed the advice of the surgeons and get it.  He is afraid I will detiorate, and detiorate quickly and end up paralyzed, he thinks even now I am worse (due to my feet sensitivity and some huge anxiety issues). He is really pushing I get it done this summer.
I dont know what to do!!! Fear is the what is keeping me from surgery.  I am afraid i will feel worse after and for the rest of my life (considering right now I feel good), I am deathly afraid of the pain, I cant take pain meds as they all make me vomit uncontrollably.   Coming out of anesthesia is awful for me,  and my body just seems to hate surgery. I had my tubes tied years ago, and was re admitted 3 times with complications, and  even then, didnt take any pain pills than motrin. I just cant get past the fear to the point I am willing to wait my syrinx out to see if it does get worse, or wait till Im in horrible pain.  Am I being ridiculous by doing that??? I do worry I may regret "holding out" but  the worry of feeling and being worse after surgery seems to win.
HELP!!!
Thanks for listening
Mazie :)

[linnielou232]

1st I want to say WOW  to the poem above.  What an amazing inspiration from such a young heart.  I think for those of us who had surgery.  For me it was 4 in all 3 for the Chairi, but I also have to say I would go through this journey again to feel the way I feel today.  I do suffer with some nerve damage in my tongue and mouth on days, but I had the surgery because it was the best for me and I knew I had no where else to turn.  You will know in your heart when it is time for you to have surgery.  I didn't hold off on surgery because I was looking forward to getting back to normal.  I have to say for myself anyway normal for me is a different normal, but I know my body will last me longer.  As my NS told me what you have will not get better, only worse.  So listen to your heart.  The pain does go away, and joy of a better day will be ahead of you.  Just know you are not alone in your fear, your undecision.  We are here and support you and want the best for you.  Best wishes to you and your decision.  My heart goes out to you at this difficult time.  We are here to hold your hand and let you know everything will turn out for the best for you.
Linda :)

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing ur DD's journey thus far with chiari, and her inspirational poem.....

I hope u continue to share ur DD's continued recovery with this condition here on the forum : )

[mamh]

Hi Mazie, I'm writing because I understand your husbands position. My daughter,Macie, was diagnosed 2 1/2 years ago. She has chiari and a syrinx. The unknown of what can happen is so scary not only for you but also for those who love you most. I kept thinking... How will we know when or if she should have surgery? She tried many medications and Physical Therapy. Well this past December her symptom progressed quickly. She was losing vision in her left eye for an hour a time, she was losing her memory which forced her to drop her last class of the day, she would leave her class and vomit then go back to class and act as normal as possible. She had headaches constantly, she just couldn't focus. Macie has always taken honors classes and to see her grades drop quickly was hard to watch. We were teaching her how to drive and she would go into trances and not know what she was doing. We have always dealt with her issues inside the home but when teachers started noticing more at school, it made it more real and hard to hear others observations. She was very scared and wanted to be a normal teenager. To quote her, "What teenage girl wants to shave their head?" She was very private about her condition and what she was dealing with on a daily basis.  Macie turned 16 in April and had her surgery May 4th. This week we will have her 6wk follow up. I can tell you that, she was in the hospital for 5 day and it was VERY hard. She went home on day 6 and that evening she was off of the narcotics. Day 7 she traveled with the baseball team 1 1/2 hours away from our hometown to the game.(She is a manager) Day 8 she attended her Semi Formal. Her life has changed and so has mine as the caretaker. It does affect everyone around you. Macie doesn't have any memory or vision issues now and she reported back to school full time day 12.... Its TRULY AMAZING how surgery has changed her life for the better!!!!!! You will know when enough is enough for you. I tried my very best to always listen to my daughters concerns and fears. Then one day she said,"I'm ready. I want it done." This is the poem she had written January 23rd, this was around the time she decided to proceed with surgery.I didn't know she had written this until May 3rd.... here it is..

I was diagnosed two years ago and knew my life would change.
Fear then took over my soul and left the body as it remains.
That structure soon got tired and the brain kept slipping away.
Now I'm always left waiting to see if it's my last day.
The shadow of death haunts me and is never far behind.
Then there's days I stop to smell each flower and soon feel so alive.
Five months from now my fate will be in the hands of Dr. Eddy
I know one thing... Chiari will never define who I am.

Good luck Mazie! Surgery was a good decision for our Macie. We had a wonderful doctor and an amazing support system. To quote Macie,"You don't know how strong you are... until strong is the only thing you can be."

[Viva001]

I was more afraid of vomiting than anything else (go figure).  I think sometimes we just latch onto something to limit or focus the fear.
I did vomit, after they removed the IV--not sure why at that point--but I understand that it's the body's way of eliminating the toxin of anesthesia, so really it could be viewed as welcome, not that I can do that!

[champ40]

Hi Mazie, I can totally relate to your fear.  I refused to have the surgery for quite some time because of fear.  My symptoms were getting worse by the month and my herniation was huge...4 centimeters, no syrinx. I saw 3 specialists and 2 of them told me to be careful not to lift or strain because it could seriously compromise my health or even end my life because of how my tonsil herniation was right up against my brain stem.  I was scared of some of the same things you mentioned...anesthesia, morphine, vomiting, recovery, will I feel better.....  I am 6 months post op now and am doing great.  I made it very clear to the anesthsiologist of my concerns.  She was very attentive and I'm happy to say I woke up gently and with no nausea.  The surgery is scary, recovery is challenging, but I am so glad I did it.  

[Mazie1209]

Thanks ladies for all your replies, I appreciate every one of them! I'm still deciding, but leaning towards it (plus dh.is really pushing the issue) I have another mri nxt fri to check on syrinx..ill post.pic.
Thanks again,.I value.any input/advice!
Mazie :)

[selmaS]

  Hi and welcome to the Chiari forum.
  
Thank you for sharing part of ur Chiari journey with us and with Mazie who is struggling with this decision.It is the members who can offer support to those that r in need, family can be helpful, but it is those that have gone thru is that really understand.

Thanks and welcome to our family : )

[DalesGirl123]

I was pretty much in your same position. I was extremely scare. But my husband could see from his prespective what was actually happening to me physically and mentally. God blessed me with a great husband, he  convinced me to have the surgery. My symptoms were misdiagnosed for 8 years. God also blessed me with one of the best neurosurgeons in the midwest, Dr. Frank Feigenbaum with Mid-West Neursurgery. He said straight out I had a few years at the longest and I would be in a wheel chair. I just decided to do it ASAP before I lost my nerve. I was absolutely amazed at the results even the very next day.

Your neursugeon will give you anti-nausea meds (as I was told that part of the brain controls nausea) and pain meds that work best for you. I slept most of the 1st week. I would never suggest someone wait on this. I do have remaining neurological deficits due to the years of misdiagnoses (insomnia, very mild ataxia) but I'd have the surgery again if I had to. It takes a little time to get back in the swing of things, thats when you let your family baby you. Don't let the fear keep you from doing what you need to do, it's not a vacation but it will change your life. Do your homework and find an excellent doctor. I hope this helps.

[Viva001]

Wow, zygy2, you are very brave.  I get angry too, that this condition has stolen my health ("I could've been somebody"), caused physical & emotional suffering, loss of income, etc. etc.  but maybe anger is better than fear.  Fear is paralyzingly, but anger can be motivating.

It is not easy, but I try to grateful for the life I have been given; no one ever said it would be easy.  And it could always be worse.  :-0

[zygy2]

Sorry to hear you are so anxious about all of this.  It is not an easy surgery and if you have issues with pain meds that does make it much harder.  I am so sensitive to meds so I fully understand and feel for you.  I must say that they do their best to help you, you just have to know your medical team fully understands your concerns!  My team has been fabulous in using as many forms of anti-nausea help that they can (Patch, I.V., and oral meds).  I just had a shunt revision and did it with no narcotics during or after surgery.  It is not fun to hurt without the strong pain meds but they do have other things that they can try.  Have you tried multiple pain meds?  I had better luck with some than others even though I have to get off of them as fast as possible.  If you have a syrinx doing damage and everyone telling you to have surgery you probably need to really think about it.  Anxiety over it can be its own problem.  some anxiety meds also have anti nausea properties too and maybe something like that would help you.  I always am the person having the strange complications.. it really stinks to be that person but it is what it is and we still need to do our best to take care of ourselves.  I have had five surgeries related to my Chiari and have had some interesting complications and it does make me angry some days what a process it has been instead of one surgery and recovery.  I too am terrified each time they say surgery and I know pain meds are not my friend but somehow I keep making it to the next step!  A strong medical team and a loving family can do amazing things! -zygy

[irislita]

I agree with the voices above.it is definetly scarry to head into surgery,but sometimes there is no option.i tell u that my symptoms un one month out of the blue were exploding...every day a new issue,no joke...in one months i devolped almost 30!!! If u go to a specialist u will be in good hands...but really i repeat i would never do the mistake agAin to go to a non specialist!!!! Keep us posted

[JESSICAH1230]

Mazi I have the same problem. 15mm chiari and a syrinx from the top of my neck to the bottom. I to do not have that bad of symotons or as sever as some so I understand ur feelings. I struggle with it daily. If I didnt have the syrinx I wouldn't go through with the surgery unless it did get sever. Just like Selma said the permanent nerve damage that the syrinx can cause us permanent and nonreversible. I have five kids and rather be recovering for a few months than possibly be in a wheekchair and not be able to care for my babies. Its a real scary decision but I think its what is best. I haven't had the surgery yet but will be soon. Take care if yourself!

[selmaS]

  Hi, I know I have said this to u and others that have had the same situation and regard for surgery as u....

When u have a syrinx already u may be better at managing the pain bcuz of nerve compression, the longer the nerve is compressed the more of a chance for perm nerve damage u have...no pain is not always  a good sign.

This nerve compression can also lead to paralysis.....

Yes, this surgery is scary as it is a major one....but so is this condition left untreated.

Were u checked for other related conditions like EDS, this can cause issues with meds, as well as add to post op issues, if u rule this out b4 it may help u with ur recovery.

All of us r afraid, and know how u feel....and I was more afraid not to have the surgery as to what it would lead to then what I would have from the surgery itself.

We r here for u, and once u have the right Dr it may help u with this decision.

[Viva001]

I'm so sorry for your anxiety.  I'd be willing to bet that we all know what that fear feels like.  I'll be having surgery a week from today, and although I know understand the condition and trust my NS, I have to give myself pep talks throughout the day.

I didn't even notice that I was slowly declining, but my husband did.  And now, in retrospect, I see that my loss of proprioception (where I am in space) caused a lot of problems including burning my hand and twisting my ankle, tearing a ligament.
I just have faith that this surgery will stop the decline.

Maybe you could talk your fear over w/a therapist?
Vivian

[DechenDolkar]

I don't know that I can be much help but I want you to know you are not alone. I have a 6mm herniation and a syrinx in my thoracic spine. I am in awful constant pain but I too am terrified of having the surgery. As horrible as my day to day life is I am afraid of making it worse, yet I fear I will wait too long and cause further permanent damage. My neurosurgeon knows I do not want to have the surgery unless absolutely necessary and she is monitoring my syrinx closely. If it continues to enlarge I will have to have the surgery done. I understand your apprehension and fear especially since you are not experiencing too many symptoms. However, you need to be very careful with a syrinx and  rely on a doctor you trust. I wish you all the very best!