Scared to death!!!!!

[dreagensmommy]

Hello everyone. I have so many questions but i need support more then anything. I am a 28 year old single mother, i have been diagnosed with a chiari after a years time of testing and lab work and worsening symptoms. I have been so dizzy i vomit, daily headaches that feels like a polka band playing in my head, my neck feels like someone has stuck a metal rod right up it and i am beginning to call in to work more and more frequently, my head and ears have so much pressure sometimes i think it is going to explode! I am literally miserable, but of course you all know exactly what i am talking about. My surgeon is Dr. Todd Shanks in Louisville KY at Norton Neuroscience Institute. He seems confident and capable. But i am not going to lie i am still scared out of my mind. I am not sure how i should feel about this. I am relatively healthy besides being obese and sleep apnea. I keep telling myself that the longer i wait to have this surgery the more problems could arise. But i am so scared! I think it is because i dont really know all there is to this surgery or maybe i am just terrified something will go wrong and i will leave behind a three year old without a mother. i even hate to say it and put it out there but its true. i have cried and cried until i am so sick of crying. Am i over reacting?? Is there success to these surgeries?

[joshipea]

I just found out I have Chiari as well and i am also terrified, i  am 29 but I have not been able to stop crying non stop for a while. I have not seen a doctor but im too scared already. my eyes are very bad and i cannot see too well
I am praying that your surgery goes well and that everything goes perfect. you  are in my prayers and my heart. I hope everything goes very well

[Lottida]

OMG my heart goes out to you!!!! :-(  God will provide you with strength & courage to get through this!!!  Prayer is a powerful thing & God will not let you down.......he has a reason for everything & will guide you on your path.  Try to keep positive that this surgery will help you to feel better which will hopefully help you to get your life back in order.  Loads of prayers sent your way!!!!!

[dreagensmommy]

Well to make matters worse my husband just left me! literally 6 days before my surgery! I keep telling myself God only puts on us what he knows we can handle... but i think he tried to make me with steal and accidentally grabbed the plastic

[Bamagirl40]

I too need surgery. My chiari is 4 mm and minimal CSF flow but doc is going in guns a blazing.  I have lived me this mess so long that I am welcoming surgery. My doctor is awesome and too extremely blunt.  He said that he could do a couple of things and cause major damage or even death. But he has never done these things and stated he didn't plan on starting with me. I said okie dokie and well I will have surgery in almost two weeks. Scared to death but GOD has me ready for what may happen.  Wish you so much luck and know that we all love and care for you even if we may not know ya.....

[Dloshaw]

I really relate to you. I just had my surgery on 4-17-15. I'm not going to lie, it is excruciating.  Make sure you have someone to help you for at least one month. Better 2. I already feel better. I had a great surgeon and besides the pain and post op recovery, almost all my symptoms are gone. They can come back sometimes, but not a lot. I live in Las Vegas and I used dr seiff. He was amazing. I don't know you're guy. I'm sorry. Look on the web for chiari surgeons or maybe call the hospital you are going to and see how good he is. Ask the nurses.

[selmaS]

  Congratulations on your surgery date...if you would like a Prayer thread posted , post your date in the surgery date thread so one is  posted for you.


So many of the NS's I saw made me feel the same way and really upset not only me but y hubby....I think they act like that when they really have no idea what Chiari is....some will offer to fix us with surgery which is another tell we have the wrong Dr....and if can not only be frustrating and  overwhelming but disappointing as well.

Know you are not alone <3

[dreagensmommy]

Well.... That second opinion.... absolutely useless!!!!! He was rude, acted like being chose as a second opinion was beneath him. He said he didn't know if the people in Louisville who did my cine mri were idiots but that he couldn't read my mri, and that i needed to wait 6 months and have "his people" do another one. Which i find very interesting since my neurologist i work for can read it just fine! and the neurosurgeon and radiologist who ordered and read the cine mri could read it just fine! I mentioned that my neurosurgeon wanted to do a bone decompression. and he said "what is that?" " what are you talking about" . I then asked him if he wanted me to wait what i should do about my dizziness because i am missing work im so sick. he said "not my problem, i dont treat that, see your neurologist" I couldn't have felt more belittled if he tried! It was Stephen Bailey from the Mayfield clinic out of Cinci. I will never go there again. I am sticking with Dr. Shanks from louisville and the surgery is scheduled for the 1st. None of my fears have been relieved but i think my main scare is because i have my son. i would rather suffer all my life then leave him without a mother if something goes wrong. But i cant lie, i am miserable

[Lottida]

Great!!  I hope the second opinion will help you to make your decision.  I think once your life has been severely altered by these symptoms, the decision is much easier to make.  I'm only going to be 5 weeks post op & would do the surgery 10 times over than remain as I was.  It is true misery to feel drunk daily, but have a sober mindset!!!!  I firmly believe finding the right doctor IS key to a successful recovery!!  Truly wishing you the best!!

[dreagensmommy]

I am thinking i am going to go to talk to someone about a second opinion, if both doctors confirm, then ill just have the bony decompression, however if i have one that disagrees, i might end up in a pickle!  I am using Dr. Todd Shanks of Norton Neurosciences in Louisville KY. He sees alot of chiari.

[Lottida]

Maybe you should focus on the outcome in the long run!!  You could stay feeling horrible as you are now, or take advantage of an opportunity to feel better soon!!  It is always good to enter surgery with a positive attitude!!!   I know how it feels to be dizzy & miserable for so long.  It will make you depressed quickly if you let it!!  I agree with Selma about the full decompression being the way to go.  My doctor explained it to me like this----doing the duraplasty & laminectomy is the "Cadillac" version of decompression where all areas of possible compression are addressed so the risk of needing future surgeries are much less!!   (the other way is like needing a knee replacement & only doing half at a time).  I don't know about you, but I figured if I had to do this brain surgery I wanted it all done at the same time.

There are also therapist that you can talk to that will help you cope with this since you are struggling.  Everyone handles things differently, but do know that you have lots of support here!!  Good luck & God Bless!!!

[selmaS]

  Hi, first since you are so hesitant I would suggest you make sure you have a true Chiari specialist....

Next from what I have heard about the bony decompression without opening the dura have very short lived benefits with a need to do another full decompression with opening the dura and that can happen fairly soon after the first surgery....it is not the best way to go....it was something they did for children and again by Drs that are not true specialists for Chiari.....

What other testing have you had?

[dreagensmommy]

Update: I have recieved my cine mri and i do have decreased flow but it is not completely blocked. My surgeon thinks that just removing the bone and not cutting into the dura will create enough decompression to alliviate my symptoms. Surgeon still tells me there is a risk of hemoraging, stroke, death. i can not tell if he is telling me this because he has to or if he is concerned about me and those possibilities in general. he called me at work so i did not get to talk to him to much. But if your surgeon recommended just removing the bone, would you all still have as much hesitation as i still have. I am still terrified and i feel like a total butt whole because there are so many people that have to have their dura cut. I went to a benefit for a little boy with immune deficiency disorder and i felt like a total donkey butt for feeling sorry for myself. But then i still cant stop crying. I think up until now i kept thinking that maybe my doc would say " hey you've been misdiagnoses, here is a pill your all better." I guess that was a bit naive, but i cant help it. I just want the dizziness to go away. Another thing. my doc keeps focusing on the headache portion of my symptoms even though that is not even my biggest complaint. This dizziness is what i cant live with. being so dizzy i vomit i can not deal with. and the pressure is horrendous. Should i be concerned?

[Lynnrae64]

I too am getting ready to have my surgery. Scared is saying it lightly. My mom died because of a brain hemorrhage and I know I shouldn't compare, but she was only 64. I'm 50 and it's something that I will never forget. I have great doctors, having my cine mri this week to determine csf flow. When I try to explain to my doctor the pain, they have no idea the extent. I can't live this way anymore. You are not alone and I thank God I can come to this forum and get the reassurance from those who understand. Good luck!

[Lottida]

Hi sorry to hear about your suffering & worries.   It is very scary until surgery is over.   I am 4 weeks post op & feeling awesome!!  I do have days when my neck is stiff, but no horrible headaches & dizziness like b4 surgery.  I did have some pain, but not to the extreme that I expected.  I woke up in ICU & immediately started doing light neck exercises while lying in bed which I think helped with stiffness.  I did have issues in my 2nd week post op.......I was feeling so good that I started doing small house chores(TAKE IT EASY & REST!!!).   I said a lot of prayers & left it in God's hands which gave me peace.  Go to your higher being if you have one cuz it really helps!!!  Good luck & keep us posted on your recovery.

[selmaS]

  Hi and welcome to the Chiari forum.

I think we all are scared and I think it is "normal" to feel as you do.....and the only way to feel better about it is to look to your Dr...if you have confidence and are comfortable with him/her then leave it with that person and a higher being to keep you in safe and caring hands.....

I had my surgery 6 yrs ago on the 28th of this month and as the above poster has said if I ever should need it again I would with no hesitation.

Knowing  my Dr tested for ALL possible related and non related conditions so they knew how to proceed gave me the ease of mind so I was not as terrified as you seem to be...but I did not have young children at the time and can understand your concerns....

Do you have family that can come and help with them and you as you recover?

[DSH519]

Any type of surgery is scary. If you have a good surgeon like I did, once the pain and swelling go away, it is amazing how much better you feel.  Make sure you have a Chiari specialist.  It makes all the difference in the world. It took 14 years for me to have any recurrence of symptoms, and if they recommend it  again I won't think twice about another surgery.  Obviously, as with any surgery there are risks of complications but a great surgeon reduces those risks. What you are feeling is normal. Best of luck