Well as a few of ya know that one of my symptoms (same as others) is that my left leg has felt as though it was dragging. Has been feeling that way for awhile. Like it was tired or something. Now it is getting much much worse. Now it is to the point that I am limping all the time and it feels like it is going to fall off or disconnected from me. Like one leg is bigger than the other - really I don't know how to explain it...I can just feel it. Okay well mainly it feels like I am going to have a "drop attack" (had those before my first chiari surgery), and like I could fall to the ground at any moment. As a matter of fact, either I just got off balance or it was just the leg by itself that did it, but I almost did fall the other day and luckily my husband was there to catch me and keep me from falling to the ground.
Truth be told, I am feeling somewhat scared now! I was never really scared before because I always new that Chiari was not a death sentence, that it was not something that death could occur from, but the way things are going...I sometimes wonder. I feel like I am dying! I feel horrible! Since Dr. Di is leaving (hopefully he stays in Ohio), I hope that I can follow him too, because I just don't know what I will do - all I know is that I saw somewhere where one of his patients went to another neurosurgeon bc of Dr. Di leaving CC and she is just back at square one again. I honestly don't have the choice of going out of Ohio for a doctor...I don't have the money to do that. Anyway, sometimes, bc of the way I feel I feel as though there is something else wrong along with the chiari - well the Cerebellar Ptosis, that is just aggrivating the symptoms...but Idk. Getting to the point of having breathing difficulities too (don't know it could be the weather on that issue).
I want to encourage u to get to a dr asap since u mention breathing issues...this is something u should not delay getting a dr to see u.
Check with ur insurance's to see if they will cover u at a dr out of Ohio and use the links page in the Health Pages to contact the diff orgs that will fly u to the drs location free of charge.
Many of the chiari drs also have a location for u to spend the night at cut costs of a reg hotel stay.
With brain slump (cerebellar ptosis) u will continue to feel worse....
Call ur insurance and get to a chiari dr now.
I agree with Selma 100%...go see Dr now and tell them about these issues!!
The thing that worries me the most about your leg is that is EXACTLY how things progressed for me when I started to have leg involvement. For a long time, I felt like my left leg was dragging but no one could really see it. Then one day I started to limp...and by the next week my leg was totally weak and it started to affect my right one as well.
I am certain that if you are feeling this way that you must have some re-blockage that is starting to do damage! I would walk in there with your limp and show them how you are walking..that should get some attention! I wouldn't wait for DR. Di...try and find someone that can see you NOW! I wish that I had been able to take action when it all began, but b/c it too them so long to dx me...I now have a lot of permanent damage.
I totally understand what ur going thru. I had PFD surgery with Dr. Di in August, was feeling so much better (at least 75% better). Then all of a sudden my leg/legs started feeling like they weren't there and twice I collapsed to the ground. Otherwise, my legs get so weak that I can't walk. I also have been having heart palpatations, breathing and swallowing problems. I had my last followup with Dr. Di and he told me he was leaving CC. He said my problem is tethered cord and that without surgery to un tether within 3-6 months it would undo my Chiari surgery. He told Roberta to set me up for surgery with him and wherever he was, he would operate. She has never called, has been about three weeks. I called CC yesterday and left a message for her to call me back. When I told them that she was supposed to call me with a surgery date, they acted like she would not be allowed to set a surgery date with him for another facility. Originally, I got a blind second opinion for the Chiari surgery with Dr. Tew at the Mayfield Clinic in Cincinnatti. I may go back there if Dr. Di doesn't work out..So maybe you can think about ttat too.
Thank you all. Sorry I haven't been back on since I posted. I have been feeling pretty bad. I was going to go to another doctor and/or to the ER but unfortunately there was no where around here I can go...they think Chiari is Budd-Chiari when I tell them Arnold Chiari they try to correct me and tell me I need to see another type of doctor...the dummies! Anyway, my husband and I discussed it and he said if it comes to worse before my appt that he will take me to the ER but he agreed about how I am treated every single time I have been there. They are downright mean to me and treat me like I am in there for meds (as many of you have been through bc they don't believe you), even though Dr. Di's nurse told me to tell them to call my neurosugeon if they don't believe me and he will set them straight.
I will have to explain when I go back to him about it. See they won't run tests or anything. When I tell them other stuff they run only blood tests (which are always fine) and a brain ct but actually it is not one...they do the front of the head I guess and look for things like aneurysm, stroke or sinus problems. They have no clue what they are doing. I know so many ppl who have filed complaints on them. Ppl have died in the ER waiting room bc they don't do things right and act like everyone is not urgent.
My appt is Thursday and it can't be soon enough (MRI's and CT's). I just pray they don't call me to cancel or reschedule again...I think I might go crazy if they do. Anyway thanks for the advice and information. My husband and I discussed TCI and if I have to after Dr. Di is gone...we will try to figure out something. I have to submit for approval again (different insurance this time). I will let you know how things go after my appt next week when I get home. Hopefully we make it there safely and back too. It is bad up north and they always get the bad crap with weather. Well it is not really bad to me unless traveling...otherwise here I wish we would get half what they get...I want some white on the ground, seems as though when snow reaches my city it splits right around us, ha ha.
Talk to you later (p.s. I am going to check back more often this week).
Just wanted to say good luck!! I'm so sorry that you have to deal with so much inaccuracy, that is so very frustrating. Maybe you should keep a file of information on Chiari and just pass it to them and tell them to read up on it!! :)
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