Mass confusion in what is in the brain group today.
Has anyone tried the Mayfield chiari center in Cincy Ohio. Chris is looking into it for me. Insurance wants me to go to the UPMC chiari center. We found some information on the UPMC center and needless to say after reviewing the doctors credential none mentioned chiari. Why am I not surprised about this finding. Has anyone used either center so I can gain more knowledge especially if I an going to pay out of pocket?
Secondly went into the ER the other night and they are diagnosing me with non epileptic seizures with stroke like symptoms. Nothing they said was related to Chiari. One of them went as far as implying after test were run that I was not an important patient. As she started to leave she said "I have a r... stroke patient across the hall." Chris says she started to say real, I am 99% positive she said real. But anyhow nothing was accomplished.
I have had a home nurse coming for 3 weeks now, but here is a kicker she asked me where my Chiari was located. I forgot to mention so did the ER doctor.
What to do, oh what t do?
Finally has anyone been diagnosed with non epileptic seizures long with CM/SM. it presents it self with severe tremors, weakness, memory loss, speech and swallowing problems and other symptoms that look like you are having a stroke.
The wonderful world of Chiari and health who knows what causes what ~ I thought I could figure it out out some but I guess not.
I go to mayfield. I’m not sure what info you need. But they told me that for most insurances they are in network. I think there’s only one or two that are not in network for mayfield.
Thanks Donna. I was calling them today but they closed early due t the bad weather. I will try again on MOnday or Tuesday. I was trying to find out if my UPMC medicare is accepted there.
Donna said:
I go to mayfield. I'm not sure what info you need. But they told me that for most insurances they are in network. I think there's only one or two that are not in network for mayfield.
Beeba yes I have ben diagnosed with POTS. I am on the beta blocker Pindolol and Florinef. I think there is some interaction between the meds but nothing to what I am going through. THat is one thing the hospital checked. I keep trying, CHrissy is almost positive about it being related to the CM. SHe has been doing a lot of research. I tend not to argue as much since I realized her degree is a pre-med degee. So now I argue for her to go to med school, but she has a good rebuttal for that one as well. :)
Beeba said:
Michael, I can't answer your question specifically about the centers. But refresh my memory - have you been diagnosed with dysautonomia? And if so what meds are you on for it. Although not as severe before proper treatment that was pretty much how I felt. Had to try a few different beta blockers but with each wrong one I would feel worse.
Sorry all my typing is so bad today especially after recovering from a fall today. Almost went throuh 100 y ear old glass if CHrissy was not there to save my bacon. mmmmmmm bacon
Mike, what do you think about what Beeba said about the pots meds? It may be The CM absolutely, but there is another member having some trouble on the Florinef. Clueless myself, just pointing at the first thing. I’m sorry you are feeling so bad- this is not right!
I was thinking that but I have been on the florinef for a while (longest of the 4 I am taking). Nothing in the interactions is what I am feeling / doing. When I have episodes similar to what sent me to the ER, she is now recording them to show the doc. Even though I am not sure I wwould want it again she thinks my CSF flow is blocked abd I may need another decomp. I have not find any info on another decompression so soon. But with the worsening of my symptoms who knows. Just playing nicey nice with insurance and if the medicare 1 cannot fix it we are going to try the mayfield clinic with doc tew. All I know now is that when I was offered the surgery i was told the rule of thirds ~ 1/3 get better, 1/2 stay same, and 1/3 gets worse. I felt and still feel that the NS blew me off after the surgery and still to this day. I mean he said I longer have a syrnix, but I read the report and it is still there same size and location in my c & T spine. still tryong to find answers too
jcdemar said:
Mike, what do you think about what Beeba said about the pots meds? It may be The CM absolutely, but there is another member having some trouble on the Florinef. Clueless myself, just pointing at the first thing. I'm sorry you are feeling so bad- this is not right!
I know a lot of Dr's at the UPMC Chiari Center. Mayfield is good also. I would be happy to give you some names. I am not a fan of most medical providers right now. You have been through so much I am so very sorry. They definitely need to get things to a place. My home Health Nurse was useless. We spent the time talking about her new twin Grandbabies. I am not the right person right now to give positive provider advice in complex situations. I just think we are failed by the Medical community and they need to step up and take responsibility for their shortcomings. You know I care about you and your wife and family & will keep you in my prayers. I will get you the list for UPMC. Just know we understand and know you are sane and a incredible friend. One way or another we will all make it through this.
My niece had seizures until she had her first decompression. The surgeon said surgery would NOT stop the seizures. But it did.
I went to the er a few years back, before I knew I had Chiari and the nurse doing my intake asked me if I had seizures before. Then they sent me for chest xrays thinking I had a clot. After the tests they told me I had anxiety issues and sent me home. I even asked them to MRI for Chiari and was refused.
Here I am a couple years later... just hady first c-spine surgery.. also found out (after fighting the doctors) my daughter has Chiari
Hey I know the symptoms you’re talking about, next time you’re talking to a doc ask about hemiplegic migraine (it’s what I was diagnosed with, also apparently completely unrelated to chiari apparently)