The feeling is mutual and is that you in the back of the picture?! Love that picture! I spend a lot of time thinking before I write. I was talking to my Mom about how sometimes I go back and read something and I think how on earth did I write that? My Mom kind of laughed because the last e-mail I sent out to the family about my oldest she felt the same way! :) I always feel like somebody is helping me, and I need HELP, so I'm always listening! Have a great weekend!
Sarah
Brandi said:
Wow Sarah all I can say is you are a total rock star at replies!!! Love you girl!!!
Yes it’s me and my youngest daughter Kaitlyn making duck faces:) I always make fun of them for the duck faces so she said they have to be my profile pics.
My sister , myself and my 16 yo daughter were all diagnosed and decompressed last year between March and September by the same NS who is not a Chiari specialist but just a really great NS(he did do a fellowship at a hospital that specialiized in Chiari). We are all doing very well and I am glad that I did it.I am not 1005 but am much better off than I was:)
I have not had surgury. Although I have symptoms throughout the day, waking up in the morning tends to be my worst enemy. There is no doubt in my mind that this is due to chiari. When i go to bed, i feel somewhat fine once i find the proper position to sleep without pressure. But WOW when I wake up, the pressure in my upper back and head are unbelievable. When i go to sit up to get out of bed, it's as if all areas are non-responsive and it takes me a bit to get out of bed. I notice that when I try to walk I am off balance and physically and mentally. My vision is not well at all either... it takes me a long bit in the morning to get adjusted. I get terribly crancky if I need to rush as soon as i wake up in the morning because it's so hard to push myself, my body to function.
My opinion on having a psychiatrist due to these effects chiari has on us is that it should not be considered helpful in the long run. I have a knowledgeable history of diagnostic review in phsychology and know the impact that anti depressants or other anxiety medications can have on an individual. If you can manage without meds, while maybe something light over the counter to calm you, its alot safer in the long run. pshyc meds can be just as dangerous as your own feelings if not more. Try to pull yourself thru any emotional discouragments through your surrounding supporters.
I am in a position myself where I am waiting on a second opinion for surgery. I have just found out that surgery is a suggested option through the first neurosurgeon and i am very very scared as to what my better option would be and I am in full understanding of your concerns.
Wonder said:
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!
I understand your point. You cover alot of issues that all of us face. I guess my advice on seeking psychiatric help is mainly is to state the dangers involved when given medications. Keeping in mind that psychiatry is their 'practice' and it's a hit and miss with medications they give. It's important to be very careful with the medications the psychiatrist gives. And it's only my opinion that counceling is very important to recovering from depression or anxiety with or without medicine. It's all so nerve racking with all we have to consider through all of this isn't it?
Beeba said:
I agree in some respects that psychiatry will not cure chiari but I disagree that it might not be helpful. It is a tough diagnosis and can in many cases be life altering. If anyone feels that the right meds may help to deal with the psychological impact this takes I would always want someone to explore that option - whether for the short term or the long. Depression can indeed become its own debilitating problem. I am not on any depression meds because even on my darkest days - and there have been some pitch black ones - I always knew it was from a physical source. I have since gotten that under control and surprisingly NOW is when I have considered psychological intervention to help to come to terms with my physical limitations and the overall impact this has taken on my life. I have indeed experienced clinical depression twice in my life. Once for 6 years while dealing with infertility and the next was when my house got covered in black soot and my family had to move into a one room hotel. Yeah I was down!! With chiari you deal with a great deal of frustration,annoyance,homicidal thoughts for the doubters and suicidal thoughts about a life that can look very long. For some depression is situational as I have always felt was the case for me. But for some it is a chemical imbalance that can be really helped with the proper medical intervention. Talking to a psychiatrist and differentiating it can be very helpful. Who knows they may just say " you have a pretty crappy diagnosis and just venting it out is all you need" or they may say a medicine will help no matter what the source. Every person is different and every person has their own unique coping skills. I would not want anyone to feel if this was getting the upper hand that they should not seek intervention - for many it can avoid a secondary tragedy. I don't find anyone weak who would choose that route - if anything the opposite - they recognized a problem and took the control to manage it. We all have our own opinion and I just thought I would put out the other side to the coin. I respect everyone's opinion even if it differs from mine. Best of luck no matter what happens.
So I sent all my MRI (2001, 2004, 2013) and med reports to Dr Batzdorf at UCLA chiari institute.
My 2004 radiologist who read my MRI noted a 3mm low lying cerebellar tonsils.
My 2013 MRI radiologist didnt even mention chiari in his report so dr Batzdorf wanted my current dr’s notes (Dr Duma who said I have now 7mm herniation).
I have dr Batzdorf a list of my symptoms though I haven’t seen him yet. He wanted to review all my procedures and medical files first.
His office called me this morning and said he does not recommend surgery.
Now I’m questioning everything.
I’m definitely going to see him so he can see what my quality of life is and how miserable I am but now it’s making me wonder if I’m more effected by anxiety and depression than the chiari.
I would have the surgery. I did real well at about your age in 1998. I was 36. I now have symptoms returning, but if it weren't for surgery, I was told I'd be a vegetable by the age of 40. Don't be discouraged by this disease. Do the best you can and do research before actually deciding. Also be prayerful about your decision. Know that you are not alone in this and keep fighting.
I agree with the Chiari specialist vs neurosurgeon with alot of chiari experience post. I went to a chiari specialist and got no where..and no sympathy..2 weeks ago I had surgery with a very experienced NS and already have most of my hearing back, no dizziness/balance issues, only tinnitus once for about 2 seconds (and it was constant before), none of the old headaches. I'm still sensitive to light and have post op head pain...but its not the headaches. I still have blurred vision, which we are hoping goes away with the internal swelling. The surgery was worth it to me for the last 2 weeks of feeling almost normal again.
Does / did anyone else struggle with their mood being effected? I’m not just talking about being sad or depressed … I mean actually feeling like they’re becoming a different person? I shudder to think I’m becoming a mental case but I’m battling HEAVY negative thoughts, racing thoughts, etc etc.
it’s like I’ll have an ok day (if I take Ativan) and then a HORRIBLE day. I’ve been out of work and pretty much bed ridden since December.
Can Chiari cause mood changes or am I just experiencing heavy panic attacks (or am I just crazy???).
I’m seeing a Chiari specialist next week for a second opinion. I’m still disenchanted by the post op stories I’ve been reading and hoping for more answers.
Ps, my NS said I had 7mm herniation. Why did the radiologist not mark that on the MRI report?
I had emotional changes after surgery and my dr said this was normal. The “help” gained from surgery will depend on what/where damage has already taken place. I still have pretty bad muscle spasms and now have increased intestinal issues but, I also have a syrinx from c1-T7. I’ll be praying for you!
Beth
Saw your post on my phone and wanted to give you some insight, or what I've experienced. I'm a woman so yeah I'm moody! ;) My poor husband. Does Chiari make me worse, absolutely! I feel like I'm living on a roller coaster, everyday I don't know what to expect. For awhile it was I wonder what symptom I'm going to develop this week? Ativan is wonderful for anxiety but on the flip side it's not fun to get off of. I used to take 50 mg of Valium in one dose, through mistakes and trusting the wrong doctor I ended up needing help to get off the meds. Withdrawals from Valium type medications is the worst. I've been through it many times and each time I think I just have the flu. My body is highly addictive, I went through withdrawals after taking three painkillers, so I have to be careful and I have a PCP who knows my history and helps me taper down. What I think you're experiencing, and this is just my opinion, is withdrawal from the Ativan. I take Klonopin every day, I don't want to but for now I need to. My hope is to not need to take it on a daily basis. Just have it for backup like the Ativan is. Talk to your doctor about maybe for awhile taking it everyday? It is hard to get off of but that is when you try it cold turkey, if you taper down it's not bad. When I have panic attacks and my sister is the same way you get this funny feeling in your chest almost like a tingling? I know then I'm toast, I need to get something in me. I haven't had panic attacks for awhile, since being on the Klonopin. I had a Psychiatrist pushing a new drug on me and I had gone with the kids to visit my Brother's family. While down there I had a massive panic attack and I had taken 4 ativan. He didn't listen to me at all, I ended up being addicted to Ativan and he tried to dump me off on another Psychiatrist who wasn't taking new patients. Luckily I had my PCP, in two weeks he had me back to almost normal, the Psychiatrist only made me worse. The most important thing for me is trust. I have to trust my Doctor, if I don't I find someone else. Radiologist is WA state, I've been told automatically say no Chiari Malformation. I didn't realize that was true until something clicked and I looked up my daughter's MRI measured it and discovered that she too has Chiari. Now I have to tell her when she comes home in between semesters. In the report they said she had a 5mm tonsil herniation (so they said she had Chiari) but in the next sentence they said no cause for Chiari or something to that effect. I had already stopped going to my Neurologist in that same practice and now I'm so frustrated that they had the information right there, she denies that I have Chiari. I don't know if you're having panic attacks or not? I can just tell you what it is like for me. Your life is changing and you have no control, living with anxiety I've discovered I do not do well when I'm not in control. You're stuck with a very hard decision: surgery or no surgery. Nobody can make that decision for you but you can do your own research, talk to as many Doctors as you feel you need to. When you come to the point where you have to make a decision make sure you have done your "homework". Nobody can tell you how you feel, and they shouldn't and nobody understands you as well as you do and He does. Prayer, family, and this website are pretty much what is getting me through. I hope I was able to answer some of your questions. I too am in the wait and see. Right now I'm concentrating on trying to block the pain with pain blockers. Talk to the Chiari specialist tell him your concerns, and ask what he would recommend for what you should do for medication until you are ready to make your decision. I've made decisions when I'm not in the right mind set and although it was the right decision I struggled with it for many years. When you are in excruciating pain it's hard to think, let alone make decisions. I usually get a break where I'm at a 5/6, that is when I'm most reasonable and that is when I can say surgery is not for me right now. But when I get to a 10? I can't think straight, I freak out, my anxiety triggers, and yes I would do ANYTHING to make it stop. Try to concentrate on the good days and if you can't do that, do it minute by minute. Believe me I've been there! I'm here as are many others to support you in anyway we can. Good luck to you.
I only take Ativan when needed (when I have to drive, or when I’m fed up with feeling nauseous) and its .5 mg.
I’ve only taken Ativan maybe 3-4 times in the last 2 weeks so I’m unsure that I’m having withdrawals? Maybe. Maybe not. Who knows.
All I know is I get these periods or moments of bad depression and anxiety.
I know what my panic attacks feel like but maybe cause I’ve been in bed since Christmas I’m having these depression bouts. It feels like I’m bi-polar. Very frustrating.
For me, the fear of surgery and post surgery are ruminating. And the DAILY being in bed, nauseated, dizzy, headaches, etc etc has really tested me to my wits end.
I really DON’T want to get on anti depressants for fear of worsening. But my NS said, “you never know…I’ve seen people take 1 pill a day a get their lives back”.
My PCP told me if the klonopin or Ativan makes me feel normal, than all of this is Anxiety and nothing else. It does make sense in that regard but I don’t take Ativan everyday so as to not get addicted nor have withdrawals.
Dealing with anxiety and medication is sort of a “you’re damned if you do and you’re damned if you don’t”.
I grew up in a family that wouldn’t even take Tylenol for a headache. At one point I was told to just make the anxiety go away from a family member. I hate the meds because if the judgment that comes with them. I also had an anxiety attack that lasted a week and knew I couldn’t live like that. I don’t think it’s withdrawals either. I do feel bi-polar sometimes but having a mother in law who has it I know I don’t. I think mainly we are just all over the ace. Depending on how we feel, what we were able to accomplish or not accomplish, dealing with overpowering anxiety, and of course dealing with a disease that isn’t well known. I would say and this is a guess from experience. The reason you are scared of the surgery that overwhelming feeling that you have? That is anxiety, it can take minuscule things and make them seem horrendous so imagine what it can do to something as important as having surgery? These are addictive but you have to weigh what it’s worth to you? I used to take more of the Klonopin and a beta blocker. I tapered off of those all by myself but when I try to taped off of the klonopin once a day life throws me a curve ball. So for now J take it and know when the time is right I will stop taking it of like my PCP warned I may have to take it the rest of my life. Is it worth it that you feel somewhat normal and not nauseated? You have some big things you’re dealing with and I think, just my opinion, that you’re anxiety is getting in your way. I think until you get your anxiety under control you’re going to struggle with the surgery question? On the surgery again you have to weigh your prod and cons. Are you willing to live the rest of your life feeling the way you do? You are a religious person so I will say the same thing I’ve said before. Sometimes you don’t get an answer. Sometimes it’s not an obvious yes or no answer. Sometimes your answer is wait and sometimes it’s a leap of faith. Nobody but you can know what is best for you. But whatever it is I think it’s going to take a great amount of faith. Again just my thoughts and feelings. I wish I could tell you what the “right answer” is. I wish I knew that for me but right now I am in the wait and see.
My panic attacks are so strong that I fear not being able to “get away” or not being able to deal with them like I normally do (take a pill and get ALONE in a safe place). My fear is being hooked up to all those machines and panicking.
I know a lot of it is interpersonal. Like I’m afraid of how I’ll look. How ill be seen. Like I’m not in control.
I fear feeling WORSE and there’s no going back after the surgery.
I have only recently (last week) divulged these feelings to my family.
Most people RUN to help during anxiety … I run FROM it. Weird.
I fear getting ill too. Literally ill … Vomiting. It’s a phobia.
Anxiety has ruined parts of my life. I’ve turned down COUNTLESS opportunities. Two to travel the world doing what I love. One to take a job on Broadway. Multiple MULTIPLE others.
Yes, it’s my anxiety keeping me from surgery. Hands down.
You mentioned that your psychiatrist prescribed medication for your anxiety, how long have you been taking it?
"I am very discouraged at reading surgery outcomes. It seems its about a ratio of 10 to 1 in regards to complications versus success." The above is not accurate at all. It doesn't make sense to go by the 'outcomes' you are seeing on the internet because they don't include the thousands of successful outcomes that are not counted because those people have moved on with their lives.
Even among the people here who are still having issues after the surgery, seems that most people have posted they think the surgery was worth it even though the results might not have been exactly what they had hoped for.
Did any of the medications help? I know it's hard to find something that works and doesn't have unacceptable side effects. I hope the Seroquel can give you some relief, it's horrible to suffer with severe anxiety.
Your response to anxiety is totally normal. It's a fight or flee response. We both flee, when I couldn't feel "safe" in my own home I knew it was time to get help. At the time I was working and every thought just compounded on another. "What if I can't open the store?" "How am I supposed to work alone?" I had been working there for over two years and anxiety had gotten to the point that I thought I could stop taking my Zoloft. My PCP warned me it could come back and it could come back worse and it did. I had never really had panic attacks before and I always would be fine once I got home. When you don't feel "safe" anywhere that's when it's time to figure out another plan. I have two daughters who fight with this as well and I had to have both of them see someone for help during grade school years because it was so bad. I'm grateful that for me my anxiety didn't get to that level until I got pregnant with my first child.
I have been taking Ativan and Klonopin for a couple of years, I already filled you in on that, so I won't bore you again with details. :) I have had no issues tapering or going off of them. The reason it was so bad in 2005 because I did detox from massive amounts of painkillers and Valium. This is not normally the case. After my many surgeries if I just listen to my body I can taper and not suffer. I feel horrible they you are stuck in this awful place because I know how it feels. It's sort of light a caged animal, we need to control everything and have an escape route. I drive 15 miles to visit family in Utah because I can't get on a plane! Driving with four kids is no picnic either. I have realized that without the Ativan I can go to a really scary place and I can't handle that. I was stuck in Boise having massive attacks, throwing up, and when I could sleep I would dream that I had slit my wrists in the bathroom and my kids found me. It was one of the worst night of my life, I felt so out of control and so helpless, I was really looking forward to seeing family but in my mind I knew I was driving farther away from home. No, we shouldn't have to take meds to be normal but if we were all "normal" why do we have the meds? I do believe that one scripture and I'm terrible "my Dad has the whole Bible practically memorized, well did 84 is catching up with him!" something about God helps those that helps themselves? Why else would we have Doctors and other people to help us? When you take the Ativan and you think about the possibility of a surgery how does that make you feel? Do you feel any different than when you're not on the Ativan? Does that make sense? Your mind has a way to just keep compounding things on, what if, what if, what if. I am very blessed with an amazing husband who has put up with me for 20 years and he has learned to read what is normal and what is compounded by anxiety. I'm not saying that it makes any difference, fears or fear, just like my PCP said pain is pain. Whether it is real or caused by something else, your brain is telling you you are in pain. Either way you still need to treat it. The same I feel for you, only because I know where you are at and it is not a fun place to be. Everything is so overwhelming sometimes just keeping food in. I don't know how many times I've had to use the BRAT diet because of my anxiety. It was the only thing that worked after Detox.
B: bananas
A. applesauce
R. rice
T. toast, sometimes I put the applesauce on the toast
Anxiety is very real, and I think I've told you this before you wouldn't tell my niece who has diabetes that she doesn't need her insulin? You can't see her diabetes but she has it, would you deny her of the medicine that saves her life because she shouldn't need medication? What you need to do is somehow figure out how that applies to you. Just as she needs insulin you need something for what your body isn't able to do. Does she want to have diabetes, of course not, she has to sit and wait to eat sometimes and it's not fair. Did we choose to feel this way, no but this is our lot in life and we need to figure out how we can get through it. I think I told you before about a book "Dancing with Fear"? I only realized I had Chiari recently but have been dealing with anxiety most of my life and depression all of my life. I found this book to be very helpful in understanding what is wrong with my brain because there is something wrong with my brain. There are two teachers at a school who also have their responses to anxiety: one curls up in a ball and one was found running down the streets screaming. We all react differently but your response is not unusual. I still feel that you are going to struggle with this decision until your anxiety is under control. Who knows if you have the surgery maybe it will flip that switch in your brain and you won't have anxiety or depression anymore? There is nothing wrong with you! It is good that you are reaching out and questioning things. Trust me I have jumped in feet first too many times, now I've learned to sort of test the waters first. In fact I would be more worried if you weren't concerned about a surgery, it's scary! Brain surgery is scary! But where you are at right now is not good, you deserve better. Live does not end at 34, nor does it end at 40 as I sometimes feel. We have a lot of living still to do! Each of us has to figure how to do that. Right now your anxiety is controlling you, I'll put it like an ex boyfriend compared automatics to sticks. Do you want to drive the car or do you want the car to drive you? Figure out what YOU want and then fight like heck to get it! You deserve to be happy! You have the right to live without fear! You should not be stuck in your bed because of anxiety or pain! Figure out how to fight it and fight, we are not fighters but we can learn! I'm here for you, always! I have bad days too but I'm here, always.
Sarah
Wonder said:
My panic attacks are so strong that I fear not being able to "get away" or not being able to deal with them like I normally do (take a pill and get ALONE in a safe place). My fear is being hooked up to all those machines and panicking.
I know a lot of it is interpersonal. Like I'm afraid of how I'll look. How ill be seen. Like I'm not in control.
I fear feeling WORSE and there's no going back after the surgery.
I have only recently (last week) divulged these feelings to my family. Most people RUN to help during anxiety ... I run FROM it. Weird.
I fear getting ill too. Literally ill ... Vomiting. It's a phobia.
Anxiety has ruined parts of my life. I've turned down COUNTLESS opportunities. Two to travel the world doing what I love. One to take a job on Broadway. Multiple MULTIPLE others.
Yes, it's my anxiety keeping me from surgery. Hands down.