Hi, Im new here. And pretty new to Chiari. And very overwhelmed. After having pain and some issues for about 10yrs, it got increasingly worse after Ihad my 1st baby last May. Since august Ive gone through a lot of tests, they checked for Lupus, Arthritis, and many other diseases until recently when they checked me for MS since my symptoms seemed like it. Thats when they found the Chiari. The 1st Neuro was pretty blunt and rude-he said he doubted this is whats causing my symptoms- extreme body pain, arm & leg numbness, back pain, neck pain, migraines, dropping things, walking into things, falling, extreme dizziness often, blackouts, poor cooridination, occasional slurring, and more. Then I seeked a 2nd opinion with a NS and he said since I was also DX with Fibro I wouldn't be a good fit for surgery. And I asked what am I supposed to do about feeling like this , he said 'nothing really, thank you for coming in, goodbye' Im sorry but Im 30 and this is not an acceptable way for me to feel. Also my symptoms got much worse after my daughter was born, but they had a hard time with my Epidural and I needed to go back in for a blood patch. The NS said when the punctured the spinal sac it pulled the piece down even further and thats why it got worse. So since then everything has been getting much worse much quicker. I look on some of these forums and from what people say surgery scares the crap out of me. And I just don't know where to go. My husband found a place in Milwaukee, or he said Mayo. I just feel so stressed and overwhelmed. Thank you fo rletting me vent.
1st welcome. I would recommend a new NS. What you were told is a rather common experience. Both of the NS I went to told me the same.
Ask away people here are great, we share and help with our own knowledge from what we have learned and been through and we help each other. Please know that you are not alone.
I am sorry you are having all these issues. People have different results to CM surgery. Please try and stay positive. You will find the people here amazing. You can always vent and find someone that understands. That's what makes this Group so special.
Dr. Heffez in Milwaukee will look at your MRI for free and he will let you know if thinks he can help you. Go onhis website. I saw him today, and he is very nice.
It so hard to not just be in denial and let it go and try to get through it and just forget the whole thing. How do I know if all that I am putting my family through is worth it?
Lindsey, Hang in there! Definitely try to get into to see a chiari NS. I had almost all the symptoms you are experiencing. I felt like I was walking around in a fog and could barely function. After messing around with 3 NS here in TX, I got into see Dr Oro in CO. I had surgery Sept '11. I am so glad I had surgery because I now have my life back.
After reading all the horror stories about surgery, I was prepared for an awful ordeal and was pleasantly surprised when recovery was so smooth.
Welcome! I know it is very frustrating and ovewhelming to be bombarded with so much information, especially when you already don't feel well! I had surgery when I was 30 years old, but it took 10 years to diagnose and 2 years for me to decide to go through with it...even though I have a severe case (18mm) and every surgeon (4) and neurologist (2) I saw told me I needed to have it done. You need to get informed, take your time and be comfortable with your decision. Everyone on the forum is here to help ...use us!!
Hello and welcome to the group! Everyone on here is great. I’m fairly new myself and these ppl here have kept me from going totally insane! I’ve seen two ns as well and they both told me tht my herniation is not severe enuf to b causing my symptoms. They couldn’t tell me what was but they jus knew it wasn’t Chiari. The first one I saw told me to stop taking my meds and go back to work and I’d b better. Needless to say I was so upset and felt like I was making this a big deal whe it wasn’t, I was sure I was crazy and it was difficult for my fam to understand y I was so sure it was Chiari when the ns said it wasn’t. I had all the symptoms u have…still do. I’m kinda at a stand still bc I am confused on what to do. I do know from talking on here tht when I go to my nl I’m requesting a cine MRI. The ns both said my flow was fine but the good ppl here have told me u can’t tell without the cine. Honestly, I trust these guys way more than a dr at this point. I was talking to a gal on here tht told me she finally saw a nl tht believed in her and told her to start taking a diuretic and if it helped, chances r surgery would help. Well I started talking them and I actually had 4 days practically pain free! I know it doesn’t work for everyone but it is helping me. If u try it make sure u keep ur potassium up. Not sure how I’m going to convince my nl of this but I’m going to try. Can I ask where ur from? I live in Iowa and tons of ppl have suggested the mayo clinic. I’ve been hesitant bc I don’t wanna b away from my kids but it’s sounding more n more like the what I’m going to have to do.
As for ur family, it is so hard for them to get where ur coming from bc on the outside u look fine. I have actually let them read a lot on this site bc it does explain how most of us have been treated like we’re crazy and how we all do experience so many of the same symptoms even tho drs say they’re not Chiari related. It really has helped them to understand. U r going thru real pain and symptoms so u have to focus on getting answers and it’s time to b a little selfish, ur fam will understand. Trust me I tried for over a year to ignore it and make it go away and now I’m just in worse pain and it’s changed my life n I hate it but all I can do is keep trucking away and get my support here. Take care of yourself and Plz keep us posted! Diane
Linny427 said:
It so hard to not just be in denial and let it go and try to get through it and just forget the whole thing. How do I know if all that I am putting my family through is worth it?
Welcome, Lindsey! You certainly found the perfect place, everyone is wonderful!!!
I am in the same boat as you right now. I'm waiting on my 2nd opinion referral and I'm terrified of hearing the same thing previous drs have told me...it's not what's causing your symptoms, but we don't know what is causing your symptoms. I also sometimes feel like giving up the fight to find out what is really going on b/c it's taking a toll on my super supportive family. It's gotten to the point where everyone asks how many appts I have each week. But, I am only 37 (soon to be 38, gulp) and I am too young to feel like this! My kids are too important to have a mom that can't do it all, so I am determined to go through it all to get to the bottom of this.
thank you all for the support. Sorry I haven’t replied to everyone, my baby had a tough night, up all night. (almost 10mos old ) nights like that are awful on me. I was/am in a lot of pain & lack of sleep hurts me. I feel so bad my pain makes me short tempered with her. And now all I can think abouts how we want 1 more, and how the He’ll can I physically do that?!
Welcome Lindsey! I think most of us have been told that are symptoms couldn't possibly be related to chiari from at least one neuro. Keep pushing on and you will get some answers, I just wish I could tell you it will be soon. Good luck to you, and if you need anything at all, just know that we are all really good about being here for one another. Hugs!