I've been awhile for awhile but slowly making time to stay in contact on this forum. After receiving my diagnosis early this year and the subsequent Dr appointments that followed I started to get overwhelmed and the topper was when I went to see the Neurosurgeon and he suggested the decompression surgery.
I think I shut down and refused to acknowledge anything that had to do with Chiari the diagnosis or anything remotely related to the word Chiari.
A few months ago I came to the realization that I am going to need to go through with this so I better buckle down and do some research.
I have a few things going on that I'm not sure is relevant to the Chiari or just a swell coincidence.
1) A fear of heights- not, oh my that's awfully far up, but a heart wrenching anxiety of being on the second level of a mall....really, a mall? And sometimes a house if the floor isn't sturdy (No idea how to explain that!) No, I've never had that before. Actually I grew up in said mall and I was the kid that leaned over the glass edge...(my heart feels like it's palpitating as I write). What's up with that!?! Which now in turn has made me anxious whenever anyone else is close to an edge.
2) A fear of crowds...yeah, also never had that before.
Still have the headaches...the jackhammering and construction they are doing at work is definately not helping!
Oh, yeah..and we're taking the kids to Disney World in Feb....I'm sure that whole fear of heights and crowds are going to be GREAT to deal with!!!
Thank you for reading and allowing me to vent and if anyone else has had this crop up on them it would be great to know!
I can 100% your anxiety...I too have been suffering with it..where I hardly leave the house....I have no idea it f mine is Chiari related.
Have you spoken with your doc about this?? I see my doc on Monday....he is aware of it...but since the last time i saw him , it has gotten so much worse....many are blaming it on the passing recently of my mom...but it had started long b4 that.
How woonderful of you to have the courage to go to Disney for your kids....It took much prayer for me to attend my daughters Christmas concert last nite!!!! Plus , I went to the middle school earlier on another topic......WOW....it was so scrary for me...so I 'get it'.
As far as the heart racing....I have a question for ya???? Does it happen, for instance, when you are fully relaxed at home, say ...and then BOOM...out of nowhere your heart rate is going nuts?????
I did have that b4 decompression....would even wake me from a sound sleep....very scary.....it is a Chiari Sx.....have not had that since decompression over 3 yrs ago.
The anxiety you are having and heart racing...too me , anyway....remember I am no doctor!!!!! It sounds like major anxiety disorder...Is it possible that with all this Chiari stuff and actually hearing from a NS you need surgery brought on this MAJOR ANXIETY???? Please don't let ANYONE poo-poo your anxiety..."Oh, get over it. Pull yourself up. Snap out of it!" Hun, I have heard 'em all myself ...naturally from folks who mean well..but have no CLUE!!!!!
If you ever need to vent.....vent ways!!!!!
Peace,
Lori
PS: So glad you are back....saddened for all your suffering.....let us help you....at least we can 'listen'...sometimes..just knowing someone 'gets it' helps me.
Great job on making it to your daughters' concert and I am truly sorry for the loss of your mom.
It's weird, the heart racing only really happens when the kids are too close to the stairs (I fell down them last December and broke my finger) or are too close to an edge...like at the mall I mentioned earlier. And I know it's more than just being a concerned mom.
As for the rest of the anxiety, I'm not sure how strong it is because I work outside the home so I don't think mentally I allow myself the time to get worked about not leaving the house. My mornings are usually hectic with getting the kids ready for school and myself ready for work.
In Michigan there is a Christmas store called Bronner's. People come from all over it really is beautiful and carries everything! We went Thanksgiving weekend (did I mention there is an outlet mall not 20 minutes away and Frankenmuth which is a German town that has the most amazing chicken dinners! Which may give you an idea on HOW busy the store was) I had such a hard time with the crowd I literally broke down in the middle of the store because I couldn't make a decision on a new piece for my Fontanini nativity. Really?!
Now, as for the surgery...As of right now, I'm not having any issues with the fact that it's going to happen. No built up anxiety or fear. Which may be an altogether different issue :).
Thank you for the kind words and I know I'm not alone. It is greatly appreciated.
I'm glad you are back! I think it is very common for all of us to take a break from "chiari" for awhile. I know I have done it too! When are you thinking that you will have surgery? Before or after Disney? For what it's worth, I too, have ha d a fear of crowds and anxiety creep up on me. When I look back, I think I have had this for sometime. Before surgery which was 4 years ago. I wouldn't worry about it. It is probably your body's way of telling you that you need to relax and take care of yourself:) It may totally disappear when you make your decision about surgery and begin to accept your journey with chiari.
Patty Hi well hey you explained my issues well- I never been this bad until chiari- but i have always been clausterphobic
I cant handle the mall/ multi floor building thing unless i have someone with me who understands and lets me hang onto them its something about feeling the floor move..yes i can actually feel it moving. and it comepletely freaks me out- i dont do elevators or escolators well either.
and crowds its almost like give me a bag so i can hyperventalate in it please- the best i can figure with that is the constant movement thing of people.
i to this day deal with both these issues but both are much easier to deal with if i one have my husband with me or someone who understands and really is there for me, and i have antianxiety medication --which may be something to ask your doctor about getting you. And remember when it feels a little overwhelming to take a deep breath and exhale slowly- I also keep a small token in my pocket that means something to me and brings me comfort and when i am especially stressed i rub that. and it does help
Since I haven't been on here in awhile how is your sister doing? If I remember correctly (and I apologize if I'm not) she was sick possibly with cancer? Again, my deepest apologies if I am not correct.
As for my symptoms, I feel like my neck is always tight and I have to "pop" it to loosen it up. The neck pain lately is horrible.
We are taking the kids the last week in Feb. Their first time there! I'm so excited, we are surprising them with the trip on Christmas morning. My husband has to go down for a work conference and the kids and I were going to fly down a few days later but after my "breakdown" at Bronners we decided to go down together. It scared both of us to think that feeling like this I would have to be responsible for a 10 and 6 year old who had never been on a plane and have to maneuver them through airports, the height of flying and driving to a hotel I have no idea where it is located.
Talk to you soon,
Patty
Carla Jo Stone said:
Patty,
I'm glad you are back! I think it is very common for all of us to take a break from "chiari" for awhile. I know I have done it too! When are you thinking that you will have surgery? Before or after Disney? For what it's worth, I too, have ha d a fear of crowds and anxiety creep up on me. When I look back, I think I have had this for sometime. Before surgery which was 4 years ago. I wouldn't worry about it. It is probably your body's way of telling you that you need to relax and take care of yourself:) It may totally disappear when you make your decision about surgery and begin to accept your journey with chiari.
Sounds like a good idea to go down together! Have you talked to your doctor about an anti-anxiety med or something to help you relax a bit? It might help. I think it is all related to Chiari myself.
Hi! I know exactly what you mean! My husband knows when I'm having issues because I grab his hand to keep me steady. It's subtle but then he knows and I don't make a big deal out of it to anyone around us.
Of course my kids LOVE the elevators...especially the glass ones! Joy.
I have great family and friends but like everyone else they don't really understand what I'm going through. How often does anyone want to hear or do you want to say "I have a headache"
Talk to you soon,
Patty Lisa W said:
Patty Hi well hey you explained my issues well- I never been this bad until chiari- but i have always been clausterphobic
I cant handle the mall/ multi floor building thing unless i have someone with me who understands and lets me hang onto them its something about feeling the floor move..yes i can actually feel it moving. and it comepletely freaks me out- i dont do elevators or escolators well either.
and crowds its almost like give me a bag so i can hyperventalate in it please- the best i can figure with that is the constant movement thing of people.
i to this day deal with both these issues but both are much easier to deal with if i one have my husband with me or someone who understands and really is there for me, and i have antianxiety medication --which may be something to ask your doctor about getting you. And remember when it feels a little overwhelming to take a deep breath and exhale slowly- I also keep a small token in my pocket that means something to me and brings me comfort and when i am especially stressed i rub that. and it does help
I haven't been in to see my neurologist for about 5-6 months, didn't think there was a reason to since I spoke with my NS. I do need to see my NS to ask a few more questions about the surgery and to officially pick a date. Ironically, the first neurologist I saw (the one who diagnosed me) didn't think the Chiari was anything to worry about...originally he blew it off and had me on anxiety medicine.
Carla Jo Stone said:
Sounds like a good idea to go down together! Have you talked to your doctor about an anti-anxiety med or something to help you relax a bit? It might help. I think it is all related to Chiari myself.
I dont say i have a headache anymore like you its like whats the point its old anymore I just do what i can and when i cant i just say iam done or not today or ya know what i just need to sit down for a bit thanks..go ahead have fun i will be right here.
defidently talk to doc about anxiety meds they do help a lot worked wonders for me like i said.
oh yeah a stress ball helps sometimes too. as for elevators of anytype i turn my back to them and hold onto the side rail
oh one other thing that worked for me was biofeedback it really taught me some great relaxation tools to use in times of stress, might be something to think about if you havent already done so.
My heart and prayers go out to you and your family. Thankfully the physical pain she was in is gone.
Love, Patty
Abby said:
Patty,
Sadly my sister passed away September 26th. We miss her deeply, but know she is in a better place and without the pain she endured. Thank you so much for asking. I missed talking to you and missed you!
Love, Abby
Kajosmom said:
Thank you Abby!
Since I haven't been on here in awhile how is your sister doing? If I remember correctly (and I apologize if I'm not) she was sick possibly with cancer? Again, my deepest apologies if I am not correct.
As for my symptoms, I feel like my neck is always tight and I have to "pop" it to loosen it up. The neck pain lately is horrible.