After my appt tuesday with the surgeon he told me it was likely i also have a tethered cord but wasnt going to worry about that right now because i dont have loss of bowel or bladder, after our consult when i said i wasnt sure about surgery he sent in the lady to set me up with surgery...in short this doctor is off the list. i since called my pain clinic (who ordered the MRI to begin with and also made the first referral) to get me referrals to neurosurgeons of my choice so i can get second and third opinions also i want a Lumbar MRI. No return phone call and i can only leave a message when i call. I have always been an advocate for family members making sure they understand that doctors work for them and not the other way around...this is the first time in my life i have had to be my own advocate. I am already beyond frustrated i have what i thought to be a birth mark my whole life right on my tailbone..looks like thats a huge sign of tethered cord not to mention the many UTIs and pelvic pain i have suffered my whole life..had surgery for the pain they said mile case of endo, pain was a little better but not gone. My next delima is my children, my oldest already shows signs headaches 4 out of 7 days a week. she is in cheer and is in terrible pain in her back with nothing helping her headaches. My 10 year old doesnt show any signs at this time but is on team for Gymnastics they are both very active and i have seen they say its not hereditary but i have seen others say they have to fight for their kids to get MRI's only to find out all their kids have it...am i overstretching? i am beyond frustrated and in the first throws of all of this. I run my own travel agency and taking all that time off for surgery is scary i dont have anyone i would trust with my couples for their weddings or my VIP's or my corp account ugh sorry i didnt mean to make this into a vent. anyone have experience with computer work after surgery? how many days would i really be unable to work from home? i have a headset for my phone and a laptop table for bed already because i am always working.
i am glad i have this to read, research and rely on for support so THANK YOU!!
That sounds extremely frustrating. I think we do have to be our own advocate and arm ourselves with knowledge. Thank God we have the internet, we can get so much information so easily and find others who ‘get it’.
I wanted to address you concerns about the chance of this being passed on to your kids. At this point, there isn’t enough evidence to say that CM is hereditary. However, imo there are enough cases to assume there is a possibility that in some cases it is.
That said, even if it is found to be hereditary the vast majority of Chiarians still will mot aee it in their family tree. I understand your fears, i have children and a grandson, but I would try to take all of this one step at a time. The odds are in your favor that they will not have Chiari. And even if they do that doesn’t mean they will have a severe case or even need treatment.
I feel fortunate that i know about Chiari because i am aware that it could be a problem- i wont allow them to have headaches for 20 years without being checked.
I hope you can find a doctor that is the right fit for you, I know how frustrating it is.
I did have them do an MRI on my teenager it did come back clear of Chiari which is strange because she does have headaches almost daily, she is in PT right now for back and shoulder pain. i think i will be getting a copy of the MRI because the doctor only counts Chiari past 7MM which is why they are minimizing mine its only 7MM. I have read that symptoms can be worse at 3-5MM. i would never put her thru the surgery but it would make a difference on me allowing her to Cheer. She is a base and her flyer is always landing on her head when they are practicing new stunting routines.
I am still frustrated with my doctors they seem to be completely opposite plans for what they think i need.
You are right about being your own advocate,in my case I searched for more than 27 yrs.I’ve not seen anyone who has gone for this long.You mentioned a mark on the tail bone,my grandson has a mark on his tailbone it looks like a bruise,that caught my interest.Is that what the mark supposed to look like?I may be digging a little,but it’s always better to be aware of things like this.I love having you and others on this site to gain info.I know from experience that we all must research and be an advocate,I believe anyone who’s done their homework on this condition should be sure to find a specialist,because of the nightmares people go through to find answers.In my own journey my life has been very altered but for all those years not one NS or other Dr.was able to find my chiari To make a long story short,I found my own way and I’m almost 5 months out after decompression and things are so much better.I believe that only by the grace of God I found this specialist my help come when I stepped out with the NS that knew what he was doing,he is a pioneer in this field.I didn’t have a second opinion from anyone.I knew things were getting worse and my legs were getting weak,balance issues,numbness in my arms and legs,no sleep,fatigue and headaches so many aweful symptoms.It’s just so wonderful to be better than I was,thanks for the info.