I second that. Selma, you do help so many with the knowledge you have gained through the years. Thank you.
And Selma...complete shout out to you, just as Kerri said. You're so giving , supportive and a wealth of knowledge. We're all blessed to have you! <3
I second what you said Kerri!!! Everything. And I do know that pain (and other distressing symptoms) causes stress and stress causes it to be worse. It's a vicious cycle. It is incredible that we have each other to "talk" to... For those confronting it for the first time, those IN it & those who are finally seeing the benefits from the surgery. It's amazing to have this community where just as you said, we can go to and complain, vent, talk about what's going on w/o any judgement ...and yes, even if the symptoms aren't exactly the same, were all in the same boat. It's comforting to know there's other's trying to navigate these waters too.
I'm excited for you to meet your new NS...go in w/your head held Chiari high...you'll find some answers!
Keeping you & everybody in these waters in my prayers!!!
And of course, keep us updated. AND, bent away whenever you need to...the Chiari Cry is wellllll understood here... I believe in all of us. "I think I can, I think we can... I know we can lol. But true!
In my prayers you are! (Pulling a Yoda there ;) )
I just want you to know, it is not just you that has had this experience post op...it seems we all do....hang in there <3
Emme, we are like the little engine that could! I think I can.... Haha! It really is a test of strength. Emotional and physical strength. You are strong and can push through this hurdle too!
Lasel, thank you for your kind words and sharing your emotional tolls in your journey with me. It sounds bad to say, and I don't mean it to be cruel, but I'm so glad I'm not alone in these feelings. I never would wish this on anyone but I really am thankful that there are others that know how it feels to go through this! I used to say the same thing about at least I'm not in a wheelchair. Even though I really thought I would eventually be before anyone could figure out what was wrong (pre chiari diagnosis). At least we all have each other here to complain to without judgement. I'm glad you have a reduction in symptoms and so far have seen benefits of surgery! And pray you continue to do so!
Selma, you are always the waterfall of info and you give so much of yourself to this community and I want to thank you for that. I'm just kinda letting the emotion take over which is strange for me because I'm usually so together. I just feel let down at the moment and physically in pain so it's getting the better of me. I'll hopefully have answers soon and then can look forward to moving past all of this!
How you are feeling is typical post op.....we all get depressed when symptoms resurface ...it is not only a disappointment since most of us feel the best we ever have immediately post op and slowly the symptoms return....BUT let me tell you...if you are careful not to over do it and take it slow (hence my turtle avitar) slow and steady will win over rushing....
Each yr that has passed I have noticed more benefits....it has been slow....but I am doing better now then b4 my surgery and a few yrs post op....it has continued to get better...and that is with other related conditions I have yet to address....
Do not let some set backs bury you....keep positive...and listen to your body as to activities you participate in.....JMHO
What you two have written has really touched me. I've gone through all those emotions too and it is hard to find people that can really relate. My husband has been supportive but I know he can't really truly understand and I try not to complain anymore. My surgery has helped and I am in a better position at the moment than you two, and I really hope you find the help you need and can feel a reduction in symptoms.
Even with an improvement with surgery there still is soooo much I can't do that I could do before symptoms. I still have tinnitus and it does drive me crazy at times, sometimes I listen to headphones just so I don't hear it. I'm still very limited physically compared to what I used to do and get tired easily. I would get dizzy if I bent down and touched my toes over and over, so I just don't do it. But I don't feel so incredibly ill all the time anymore and the floor doesn't move under my feet so I just thank God that I have some improvement and a better quality of life. I was truly dysfunctional before surgery, and now I can function. I'm hoping things might continue to improve with time.
I do get down remembering the life I used to have wondering if I will ever get it back. I find myself saying things like, at least I didn't die or at least i'm not in a wheelchair, that things could be worse. It's just weird how you're fine then it's like you are hit by an invisible truck and you are never the same again.
Whenever someone asks how i'm feeling I just say I'm fine because it's too complicated to tell the truth, and really no one wants to hear it, they don't want to be friends with someone who complains about strange symptoms because the weather is bad. No one gets it, except people who have chiari.
I've become emotional listening to that U2 song too!
Tinnitus is one roughy thing to deal with!!! I recall my eyes opening wide when I truly came to after the surgery ( truly meaning a few days after-when I actually understood what they were asking me-during the neurological exams) and they touched the left side of my face, asking if I could feel it...I felt it!!!! Upon realizing that the numbness was gone, I realized no jet 747 in left ear! I feeeel like my whole body jumped w/excitement, but I know it couldn't have...I was gripping the handles on side of bed in pain, so I think my eyes just jumped, lol!!! What a relief...until Dec 26, I woke to a jet again. Disheartened.
As for thinking it could always be worse, I used to (and still do) try to tell myself that. But, my Neurologist once told me, when I said that, that I shouldn't do that b/c I was a way of invalidating my feelings. I thought about it & I suppose it's true. It's an easy thing to say to ourselves (and I suppose it COULD always be worse), but what she said did make sense. What you're going through is very rough...it's a horrible way to test our strength, eh? Right now, I feel like life is testing my patience... Tinnitus and pain & just like your pains, it's...lame. I hate it. You're right w/"answers is a good start. With answers come some mental & emotional relief!!! We'll keep pushing forward. Ugh!
yes things could always be worse I know. At least I'm alive and have a wonderful family and support group. And good friends here that pick each other up when we're down! Thank you for picking me up!
I wish there were some magic wand to just wave and heal us all. But in the meantime, I'll settle for a good doc! I also hope he can point me in the right direction. Just having answers is a good start.
I have the tinnitus also. And the thumping in my ears that has become worse in the last few months again. It's an awful thing to hear day in and day out isn't it? I try my best to tune it out but sometimes it's like an electric guitar blaring in my head!
It may be hard for your mom but she hasn't given up on you because you're her child. And she wants to protect and help you. It's hard on family to see the person they love hurt and cry. It must be an awful position to be in.
I pray you can find some pain relief and be able to get some rest. Your body and mind need that!
The struggle IS real ( I know that's a trendy thing to say, but it's actually so literally true in our situation. (And many other chronic conditions&"lesser known" conditions). But it IS real. We can hold ourselves up for so long before what is a daily battle brings us to our knees. It makes me feel weak when I break, but this like vision problems (I've not truly addressed the worsening vision-it's WAY worse than before..more than 50%worse-but, the brick has consumed me), constant numbness, tinnitus & say.... Oh, I don't know- a heavy brick pounding & stabbing your skull, non-stop, 24hrs. a day. 7 days a week. A doctor once told me "well, tinnitus won't kill you"..I told her to look at the suicide statistics. These "invisible" debilitating things would break a Berlin Wall down, let alone the strongest of persons. I feel bad that anyone-especially my mom, who shouldn't have to hear her daughter, at age 41, cry all night, be confused about the issues going on & have to hear me "talk it out", when "talking it out" never makes it better understood. (Somehow, as I'm consumed daily by the ringing in my ear & the Alien on my skull- stabbing me every part of the day/ I feel like if I explain it, she'll get it. Or that I'll "figure it out". But it never does...and then I feel it just makes her frustrated &helpless. That I'm a weakling "failure"). It's very hard not to think about the future when the right now is so very overwhelming & you're stuck in a state of limbo.
It certainly is emotionally, mentally & physically exhausting. And we break-but that's ok. And that's why we're here. (I'm trying to "listen" to myself, as I'm feeling... Done. Give up, pushed to my limit :/)
But there is a new hope for you w/this new NS. I will 100% pray that he LISTENS to you and chooses to take your hand and walk WITH you through this. Keep believing that you WILL find that right Dr's hand.
Sounds corny-but I listen to U2 when I'm in the deep well feeling. A new song,from the new album has a line:
"If there is a light
You can't always see
And there is a world
We can't always be
If there is a dark
Now we shouldn't doubt
And there is a light
Don't let it go out"
I'm trying to hang onto those words/idea right now .
Many brickhead hugs to you.
P.S. I know, your husband may never truly FEEL it, he feels you, loves you...I think we worry about those who have to go through it with us.
It's a wonderful thing we have this place to come to!
<3 to you Kerri!!!
well I had this all typed out and posted and then it didn't post... So if duplicates appear I'm sorry!
Thank you emme for the pep talk. I needed it more than you know! I feel so bad that we are stuck as you said. And I'm just having a pity party for myself I guess. It's just hard to be upbeat all the time when you feel so bad. I'm the one who puts on a brave front and pain hidden behind a smile because I don't like letting everyone know how miserable I am. And I also try to be positive because being negative all the time just makes me feel worse. But you have a breaking point, and when I reach it there's nothing else to do but be sad for the life I once had.
I'm so thankful to you and everyone here that understands the misery of this condition, because we all walk in the same shoes. Even though each person suffers differently, we can all sympathize with each other.
Thank you again for making me realize that I'm never alone when I come here!
And btw, your mom must be a trooper too!
Thank you so much for that pep talk emme! I needed that more than you know. You're right about understanding each other and the struggles caused by chiari. It really is a battle, and we're strong people to endure it thus far. But it really takes a toll on me physically and emotionally and sometimes I just wanna cry and wish for my old life back...
I'm so glad for you and all the people here because we all walk in the same shoes and can fully grasp each others situations, even if they aren't exactly the same. Just knowing I'm not alone in this makes a world of difference and I'm thankful for that. I just wish none of us had to go through this at all, but if we do, at least we have each other!
Kerri, you're not being negative, you're being real. I'm there with you. It's hard to feel like you're the "complainer" (that's how o feel). Or that you're a "failure". But you're not. We are living w/ Chiari, which is...usually only known, truly, by fellow Chiarians. It's a strange & frustrating world - with Chiari. When you encounter symptoms, it's like..is it Chiari? Is it something else? SO many things fall under Chiari ...and I know how you feel about your husband dealing w/being the one who listens to you- my mom, (I'm unfortunately not married), she's such a trooper. I know I feel horrible that she has to listen to all my troubles..(especially as right now, you and I are still dealing with post/- surgery issues..for you, with the vision -I know that must be taxing). It weighs on me that I know it does get to my mother-she kind of thought that I'd have the surgery & a lot of relief would be found. But, as you are, I can't sit back, joyously, to bask in the benefits of the surgery yet. Still in a storm. I think that only Chiarians can truly understand the world were in. But please remember that's why we're all here...so vent all you need to b/c I ( we) understand. 10000%. I worry too that I'll have to live w/a "brick". Is this what my future is? And what's tough is(for me) is when you're in a limbo of not knowing. Perhaps with your new NS, you'll get answers ... and (to me) answers guve me something to work with. Somewhere to .... Start toward a possible solution. But to be in "limbo", waiting, sitting with uncertainty in your lap. Uncertainty is an unwanted dinner guest for sure. Hang in there&vent ALL you need to! Because we totally get it! I do completely FEEL your pain...(metaphorically & literally). Believe it or not, I'm the 1st person to find the light for someone else in a storm. And generally, I do remain positive...but, I hit walks, where I'm just TIRED of pretending (always convincing myself)?that all is going to work out & im pulling through. Sometimes the smile just can't hold up anymore & I break. I do believe, for both of us, that the surgery will be a positive outcome. But, right now, we're stuck. You keep at fighting for answers and know that you have me & this community right by your side..I feel how you feel. We will get through all this. Many hugs to you from me (but I have to give hugs awkward hugs, with my head pulled away b/c of my "brick", so a big awkward "brick" hug lol)
<3 <3 <3