@onesmind can you keep us updated??
Let us know how it’s going and you’ll be in my thoughts 
@Wonder. I will let you know how it goes. You are in my prayers and I’m here if you need to talk.
I’m going to get a second opinion from Dr Batzdorf at UCLA. I don’t know HOW I’m gonna get there…but I’ll try.
I just drove 2 miles to Hoag to pickup my medical records. About had a panic attack and felt like puking or falling over.
This sucks.
My brother who has anesthetized many chiari surgeries is here. I’ll pick his brain.
Again, scared I will get worse.
Hi Dallas,
I had my surgery with Dr Duma at Hoag 4.5 years ago and have not had the classic chiari headache since. I still have some other issues but I can actually laugh, cough, pick stuff up, not pass out when standing etc etc. Please let us know how UCLA goes. I wish I would have gone for a second there. I’ll be praying for you too.
-Sarah
Sjane, how was your recovery?
What are your lingering issues? (If u don’t mind).
Sjane4 said:
Hi Dallas,
I had my surgery with Dr Duma at Hoag 4.5 years ago and have not had the classic chiari headache since. I still have some other issues but I can actually laugh, cough, pick stuff up, not pass out when standing etc etc. Please let us know how UCLA goes. I wish I would have gone for a second there. I'll be praying for you too.
-Sarah
Don’t mind at all. I wish I would have found a place like this before.
Let me start by saying that I have also suffered from anxiety/panic attacks since I was 20 and still deal with it but have a better handle of it.
The surgery/recovery was difficult for me, I can’t lie, but I’m glad I did it. I had no complications and I was back to work in a few months. (Clerical job)
The doc said I would have bad headaches for a few weeks and I did. The meds got me through and the pain lessened till it was gone.
Can’t remember when but I developed POTS. I still have some tingling in my feet. These two are the most bothersome.
I still deal with anxiety and fears but I have my faith and family to get me through.
Hope this helps some.
-Sarah
Dallas,
Wow, I'm so glad you got so many responses for help. I hope that at least reading what other people are going through helps even a little bit. Remember we can give support and ideas but always keep in mind that not all of us respond the same way to the same things. I have crazy reactions to medications, my pain doc and I quote "that's not normal", me "that's me!". I've just learned to listen to my body and if something isn't working try something else. I know depression is so hard because you get so low that it's hard to see the way out. The question you need to ask yourself is do you feel that it's bad enough to take something for or do you feel you can combat it on your own? Right now my anxiety/depression is all over the place because of being on and off of pain killers, anti anxiety and also muscle relaxants. So for me right now I'm not concentrating on "curing" my anxiety because I know the levels will come back down. There are some great books out there. We are finding in the school that a lot of the kids and teacher are struggling with anxiety. My kids Principal actually went and met the Author of "Dancing With Fear". I liked it because it dealt with all different ways that you can develop anxiety. Just like you are researching Chiari, I found that I needed to understand anxiety more to really deal with it. I've had it all my life, but it really started affecting me in my 20's. I've been to the point where it's completely gone and to the point where I can't leave my house. I do believe the brain has the capacity to retrain but I also know that everyone is SO different. So, take all this advice and think it or pray it over but do what is best for you! You know yourself best, we are here to support you in any way we can but we don't know how you feel inside. I think that's the hardest for me is there are no physical manifestations for chronic pain so people don't know what's going on. Like I said before I think you have some awesome advice here I hope that it helps you to make the decisions you need to make. My the Lord bless you while you are searching for you answers.
Much love,
Sarah
Sarah,
All I can say is not only do we share the same name we have so many other things in common. I read your comment and just thought ditto! The one that stood out to me was the prayers and support of family. Without those, I don't like to think where I would be today. Hope you have a great weekend.
Sarah
Sjane4 said:
Don't mind at all. I wish I would have found a place like this before.
Let me start by saying that I have also suffered from anxiety/panic attacks since I was 20 and still deal with it but have a better handle of it.
The surgery/recovery was difficult for me, I can't lie, but I'm glad I did it. I had no complications and I was back to work in a few months. (Clerical job)
The doc said I would have bad headaches for a few weeks and I did. The meds got me through and the pain lessened till it was gone.
Can't remember when but I developed POTS. I still have some tingling in my feet. These two are the most bothersome.
I still deal with anxiety and fears but I have my faith and family to get me through.
Hope this helps some.
-Sarah
Brandi,
Great stuff in there. It is so true that everyone handles it different. I take the TMI approach, my friends LOVE me. But for some reason it helps me if they know what is going on. Do I have meltdowns, absolutely! After sending my daughter away to college and getting her away from a boyfriend that had way too many red flags, I laid on the bathroom floor and sobbed like I haven't probably done since I was a kid. I felt bad because I woke up my youngest (he's 8) but it needed to get out, I had been holding it in for so long. Being a mother is so hard already and then dealing with all the fun stuff Chiari brings some days it is just more than I can bear. I think TracyZ is right there is a mourning period. We are going through a loss, and just like everybody mourns differently everyone deals with Chiari differently. I'm working my CPAP, got my kitten on my legs, my German Shepherd is ready to let me know if my blood pressure drops and if I stop breathing which shouldn't happen know with the CPAP. I know sometimes my husband and I just have to use humor, like I wonder what new symptom I'm going to get this week. I know beyond a shadow of a doubt that I would not be here today without my husband, my children and my family always supporting me. I'm the youngest of ten and I always call myself the black sheep of the family but I really like what someone said to me yesterday. Apparently there is this saying that if we all came in and put our struggles on a table we would all take back our own. Unfortunately we live with an illness that doesn't have a face, it is not well known and unless you live with it you truly don't understand it. Which is why having such a supportive family and/or friends is SO important. I also find so much comfort in my animals. Even though my German Shepherd is Loony Luna Lovegood to a T. She is by far the best German Shepherd I've had and I've had a few. It took one time of me fainting for her to learn how to read my blood pressure. Then sometime last year she started waking me up at night, she didn't want anything. She would wake me up and make eye contact then lay back down. I know a lot of you have heard this but I do believe animals play a pivotal role in our lives. Even if all you can handle is a goldfish. Okay, I'm sure you're all just about sick of me and I'm only half way through my e-mails. :) bwahahaha
May you all have a wonderful, pain free, answers coming like crazy weekend! I love you guys and I'm so glad to have this site to come to at the end of a day!
Love ya guys!
Sarah
Brandi said:
Lol uhhhh yea, it's very natural when I get dizzy I get super anxious I'm not in control of my own body and it sucks. Who wants to walk around looking at the ground because your world spins now. People don't get it and it causes anxiety. I think that's natural. So we deal with it. How we all deal with it is different I'm extremely practical, so yep I'm dizzy so I'm going to figure it out, my outlet is I go off by myself somewhere at some later point and cry. Shower, room, car but until I'm alone I act like its no biggie. Just because I have a husband and three children that is living with this also and their lives have changed so much, so if I can do just a few things to keep that freakin worried look off their faces I'm doing it so a lot of what I do is for them and it keeps me going. But I've realized I hold every moment more precious now because if I lay in bed and waste away what was any of it for? So I take my pain pills get my arse up and do what I'm supposed to do. That is me personally that's how I'm surviving. You have to find your own way, but do it for you and people who love you.
Donna,
I remember at my worst, I worked for the devil, I would have these random panic attacks. I would be sitting in my car headig to work and singing along to the radio and bam! It would hit like a ton of bricks. The one thing that I try to take from every trial is what can I learn from this and believe me when I'm at my worst that is definitely not what I am thinking. I haven't been perfect at it but I do try to write things down that seem to trigger symptoms to be exaggerated or worse. I know when my panic attacks were at their worse someone told me something interesting and I've also heard this about migraines. When I used to work, my migraines would hold off until I got into my car or home. I began to worry that maybe there was something at home or in the car causing them. Also FYI I'm taking a lot of the advice I've gotten over the years from many Doctors and just sort of combining it because I think it is all very interesting. Migraines are complicated and they are kind of smart. They wait for you to let down your guard and then they hit. I have been told that they also can be compared to a glass of water: maybe you ate this today, and maybe you did this today, etc. so your cup is to full. But the next day you didn't do those things so your cup is only half full. Now granted I know that our headaches and migraines differ from others but I do believe that even if I can block a few of my triggers it's worth it. The same thing with panic attacks. Your body knows that you need to get through something, my friends brother died suddenly so I had to come in on a day off and it was not a good day for me, So I felt I deserved a Peanut Buster Parfait because I worked on my day off and had gotten through it. Sure enough half way through boom! Panic Attack, yet another Doctor told me that if you retraced your steps for that day you will most likely find the trigger for the panic attack. I had been to see a new Psychiatrist and he was super nice and very honest. He told me that he was semi retired and so he didn't think he would be a good fit for me since I would need more week to week care and he also told me that I may never get back the life that I used to have. The phone call came right after that. Granted, I'm not always able to figure them out but I do think if you have the time try a journal and see if maybe some sort of pattern shows up? Just some advice from someone who has been there. Please let us know how you are doing!?
Much love,
Sarah B
Donna said:
@ Brandi, sometimes my depression feelings are because this is gonna be my life now and feeling bad and situational things. But when I have bad anxiety it can just hit me out of nowhere and be gone again the next day (or even later the same day) just like my neck pain or whatever else I'm having. There's no reason for it and it causes a lot of fears and junk that are irrational and I know they are, but I cant think my way out of it. Maybe everyone's anxiety isn't caused by the brain compression, I just think that a lot of mine is and I know that almost everyone I've heard of with Chiari has it.
Hey Beeba!
Long time not type! ;) For some reason Dilaudid never worked for me. I use Generic Demerol and three hours later I take Vicodin with over the counter meds. I learned some interesting information at my Pharmacy and wanted to share in case people hadn't heard this, I know I hadn't. As long as you stay under 4000mg of Tylenol a day, your kidneys should be fine. I had an Aunt that had total kidney failure because of migraines and taking too much Ibuprofen. Her brother gave her on of his since UNOS said she was too old. She did ultimately die of complications with her kidneys but was able to have another 10 plus years, sorry I digress, I do that a lot! :) So anyhow next year all the pain killers that come with tylenol will all be at 325 milligrams which is what my Vicodin is to help to keep my numbers low. Don't quote me because my brain is not always my best friend but I do believe that is what she said. Granted I had been crying all day and my feet hurt and my head hurt and, yeah you know! ;)
Love ya girl!
Sarah B (thought I should start adding that since there is another awesome named person on this site, won't mention the name "cough Sarah" cause I don't want to cause any jealousy.
Beeba said:
Chiari/ms - no I just used a very well respected neurosurgeon. He was recommended on the ASAP site. And when my ENT who I trust a great deal said he had worked with and considered him the best I went with him.
Angalyn - yes you are the darn Tylenol people!!! Lol. I was the dilauded for 12 weeks people!! We really are a spectrum aren't we? No I will never be one not to complain. But I will say I have been sick and I have had pain surprisingly I would probably take pain over sick. But I don't have a pounding headache right now tomorrow I could be singing a different tune. Ah life is quite a roller coaster.
Scared D. Cat,
I think that is one of the worst things we do as humans is compare. Don't get me wrong I totally do it all the time. But the reality is everyone has their own problems. I feel like a total and complete failure as a wife, mother, daughter. One thing Anxiety does that is actually positive is we actually have a lot more empathy for people, maybe because we're just so raw all the time? I developed anxiety when it wasn't really known, my own Mother even told me to just make it go away. Oh, if only I could. I read a book that compared anxiety to diabetes. You wouldn't tell a diabetic they don't need their insulin! Same with anxiety, it's there it's real. Although I don't have this symptom I think it is one of the most common, you feel like you're going to have a heart attack. I also like to compare it to labor (yes I know you're male) but! it doesn't make the saying any less true "you feel like you're going to die but unfortunately (not that we want anyone to die) you're not going to. To sum it up you will get through it but there are going to be times that you may question that. A wise man once told me something that has always stayed with me. I was raised to believe that all answers to prayers come like thunder and lightning. None of my answers have ever come that way. I believe they fit into 3 categories: no, yes and not right now. Just my humble opinion. I was at a pivotal time in my life and I could not get an answer on whether or not I should marry my husband. My friend told me what he did when he asked his wife so I did the same thing. 20 years later, it may not be the perfect marriage but we are still together. In my prayers I told Heavenly Father that I was going to marry this boy and that if it was wrong he better let me know. Sometimes we have to meet Him half way, sometimes it's a leap of faith, for some reason the scripture faith without works is dead keeps coming to mind. Hope that wasn't too preachy! Also one last thing, during our lives together we have discovered when something keeps us up at night or makes us feel a bit nauseous then we have made the wrong decision. I like to think of faith like a muscle is you don't use it it's going to shrink. Okay, promise I'm done. Maybe the CPAP is doing weird stuff to my brain, yup that's it the CPAP. I hope you will find some of this helpful, sorry I'm kind of all over the place but that's just me.
Sarah B
Wonder said:
Most, if not all of my symptoms deal with my vestibular functions. Dizzy. Nausea. Light headed. Queasy. Nystagmus. Etc.
That's why I'm nervous about the surgery ... To have those get worse is a great fear.
I feel like I could deal with pain. But with feelings of "not being here" or "dreaming" or not "normal" give me heavy anxiety.
That's why I never drink or have done drugs. I don't like feeling not in control.
Sincerely,
Scare D Cat.
Ps, not to mention I have a brother who's a pilot and another who does brain surgeries and survived a brain tumor himself ... I feel like a large failure in my battle with my mental capacities.
Wendy,
You are not crazy! My last flight over three years ago I was coming back from a reunion with my Mom, Sisters, and Sister in laws. I texted my husband and told him I didn't think I could get on the flight. He thought I was joking because I didn't want to leave. It was right before the 4th of July and my husband was working so I didn't want my kids to miss it and it was crazy because I was just gonna turn around and drive them back down there in a week. I remember being in the airport and just be so out of control. Looking around and knowing someone somewhere had anti anxiety meds. My sister that was flying back with me immediately called those that were driving back and they said a prayer for me. It wasn't instant, and the whole time I didn't know if I was going to get on the plane. So, I just took it by minutes. Okay 15 minutes in the flight only this much more to go, etc. Pretty soon I was able to sleep a little bit and it was gone. That was the first time I was able to beat an anxiety attack without running home. I do not believe that was a coincidence and I too love that poem it is one of my favorites.
Sarah
Wendy said:
Wonder, my brother in law is also an anesthesiologist. You should talk to your brother, he really might be able to ease your mind about it. I think you would be pleasantly surprised by yourself, that you really may be able to handle much more than you think.
Just wanted to tell you a quick story. I'm not generally claustrophobic, so when getting my first MRI i didn't think would phase me. Well, I guessed wrong because once I was in that machine I made the mistake of opening my eyes and it caused me to panic. I knew that if I paused the test I still would have to get back in there eventually, so I began praying to God to get me through this- give me strength. Suddenly I was struck by the strong smell of ocean water (the way the beach smells). It was so weird. Funny thing is, my favorite "poem" is the Footprints one where God says "that is where I was carrying you" at the end. (If you're not familiar with it, google it- it's a great one) Others may think me crazy but I think that was God's way of reminding me that He was carrying me.
I find that talking to the Anesthesiologist before the surgery is very helpful. One time it was me and my daughter with the Doctor and we were laughing so hard somebody came into the room to see what was going on. :) We live in a time when there are so many things available. I have issues with nausea and of course anxiety. They can push those meds before they even start the surgery so that they are already working before you wake up. A lot of us with anxiety have issues with control, we need to control the situation in order for us to feel alright. You are going into something that you feel you have no control over. The truth is you have more control then you realize just make sure you right it all down. If you do decide on the surgery ask for something to take before the surgery, I usually have to do this. I know surgery is not easy on my body but I still go in with a positive attitude hoping that this time we figure it out. Besides the fact that everyone is so nice and they want you to be comfortable. I was spent 5 hours in the recovery room for a same day surgery because they didn't want to send me home until I was completely comfortable. They didn't have to do that but they did. Tell them your fears, like I said before there are so many medications available to us now that you should wake up just fine and even if you don't it only takes a few minutes to get you there. Sorry, I keep responding I have to read the e-mails one by one or else I totally forget what I just read.
Sarah B
Wonder said:
I am trying to figure if my period of unmanaged anxiety and stress has "caused" these symptoms. Surely they haven't helped.
When I feel ill, I get bad anxiety. When I feel anxious, I feel ill.
What came first, the chicken or the egg?
I have an irrational fear of being ill so the thought of waking up from surgery sends my mind through a rabbit hole.
I know I sound like a looney but its the truth.
Funny thing is, my brother is an anesthetist ... He puts people under for a living. I could just talk to him about what to expect when waking up.
My biggest fear is having a panic attack when waking up and not being able to mentally handle the physical symptoms of post operation.
Wow Sarah all I can say is you are a total rock star at replies!!! Love you girl!!!
Hello, I am so sorry you are going through this. I hope you find comfort.
I had a 15mm herniation. I had my surgery and laminectomy of C1 & C2 in June 2012. My Chiari headaches are gone but I have pain and muscle aching there still. I’m not sure which is better. My Incoordination, dizziness, bubbles in head, swallowing, some of my tingling, foggy brain, bloody noses, ringing in ear, numbness in leg are gone. I still get tingling down my left side if I overdue.
I’m on Cymbalta for depression and nerve tingling pain. My neck is in constant muscle pain. I do massage therapy and acupressure to relieve the constant neck pain. My doctors said it will take up to two years since it was a C1 & C2. I also still work a 60 hour a week and notice that if I get to overworked I get some of the tingling on my left side.
I feel like I’m in more pain, a different pain BUT my quality of life is better.
I hope this helps and you find the answers you need.
-Jamee
What great information.
For all pre-op people. Do you ever find that in a lot of instances, around bed time you’ll feel ok. Then gain some hope. Then only to wake up nauseated, headache, etc
That’s tough for me.
I had a good talk with my mother and brother and laid it on the table on how I didn’t think I could mentally handle surgery. It was good to get that out.
I used to teach kids at a performing arts high school as a second job
before I fell ill. I lost that job.
I’m self employed and on the verge of losing my facilities if something doesn’t change.
I’m supposed to see the psychiatrist today. Blurg!
I’m reading all your wonderful posts about recovery and coping with anxiety. My dream is to BEAT it!!! Like a red-headed step child!
Exercise and POTS
I want to try and get some exercise in. I USED to be in shape!!! 240lbs. Now I’m 160. Bummer.
I’m still unsure as to what POTS is but I have noticed I need to stay cool and not exert so much.
In my attempt to get some anxiety out, what exercises do you all do so as to not aggravate our rebellious cerebellums?
I used to run track and field on a nationally competitive level and love to run. But since now walking to the restroom makes me feel like what comes out of the south end of a north bound horse, running sprints isn’t viable at the moment.
Any thoughts?
Sincerely
Bruce JenHurts.
I try to walk as much as possible. I love Dunkin Donuts coffee and Pepsi, so instead of keeping the stuff in house or driving; I tell myself if I want them walk to get them. Motivation is key!!