Its been a while

[bbisweary]

Hi Everyone, it's been a while since I've been on to comment, but I have checked in from time to time to see how everyone is doing. As an update, I am now 1 1/2 years post-op from PDS and C1 Laminectomy. I have have been much better in many ways and I'm so very thankful for that.  However, about a year ago I starting having a bad bout of muscle cramping, right sided weakness, and severe muscle "freeze up" episodes in my hands and feet.  Like everything for the past few years, this is episodic and thankfully has not been a permanent symptom, just long periods of flareups.  So....since Dr. Di left CC and is out of practice for good due to his vision, I found myself without a NS.  I went to the Mayfield Clinic in Cincy, and saw a NS there.  They agreed something else was going on after testing, but my MRI didn't show anything operable, and my muscle and nerve conduction tests only show ed a mild abnormality in one area (Dr. Di had said I have Tethered Cord and I would need further surgery, but they disagreed at Mayfield). They told me I needed to a nuerologist for a diagnosis, and I thought, "here I go again", back through the abyss. Yep, that's what happened!  I began seeing a NL that actually seemed to know a tiny bit about CM and appeared knowledgeable of the complications of it.  However, he had several meds for my pain and muscle cramping without success, finally we started Lyrica but I had an EXTREME reaction to it and was sent into a severe dystonic episode resulting in an emergency run.  The ER called him and followed his advice.  All seemed to work out, but, his receptionist or nurse called the next day to check on me, and I reported how badly my neck was hurting, I had assumed it was from the violent jerking during the dystonia.  So, as uncharacteristic as it was of to settle it down until I saw him again.  I NEVER, EVER ask for, or take pain meds, but the neck pain was horrible (I have osteo, and DDD in my neck).  She called me back and said I had to see my nuerosurgeon for that because that was surgical.  Well of course I have no NS anymore.  So I perservered through the pain, but during my next appointment I just happened to be having a very bad day with the stiff muscle problem, (i.e., my fingers would not release and my feet were turned slightly inward).  I started getting more tense due to the NL's reaction which only served to exacerbate my symptoms.  He just kept staring at me, telling me to release my fingers.  I explained that I couldn't at will and this episode was what I kept explaining to him in my prior appointments.  Well long story short, I will never go back to him again to be treated like a two headed alien creature, nor do I think he wants me to. He told me that I was CURED from the CM after surgery, then repeated, the surgery CURES you.  I was so upset and literally so uptight that I didn't bother to tell him how incredibly ignorant he was!!! I can't believe the medical schools are still teaching med students that either CM is never symptomatic, or they teach that decompression surgery cures CM.  We all wish it did!!!  Well, enough said, I just wanted you all to know that I am going to write either an short story or a book about my experiences with CM and the ignorance in the vast majority of the medical profession.  People need to know how detrimental the wrong diagnosis, delayed diagnosis, and overall ignorance and misunderstanding is to those of us with this disorder.  So, if any of you have anything you want to contribute, please PM and let me know. I don't need your real name or anything personal, I will just use your stories for further reference.

Thanks!

[bledpub]

I just saw that you are in Kentucky. Looks like I am abut 30 minutes south of you. Small world! :-) You and I are also going to the same NS, or at least the same office. I have NOT been able to find a NL in the Lexington area who has been able to help me. I've started doing phone interviews. I don't just need one for the Chiari, I also have epilepsy so finding a good one is important. My regular one went off the deep end when he found out about the Chiari and told me that it was just restless leg syndrome. (In my head? Good one.)

My PCP is wonderful. She is "just" a nurse practitioner but if she doesn't know what something is, she researches it. I saw her the other day and she actually has several Chiari patients. We talked about the runaround and she said, "I wish these NLs and NSs would help me help you guys. Believe me, I'm as frustrated as you are." We kind of learn together as we go.

I don't know which ER you went to but I have had zero luck with UK. You'd think it being UK you'd get pretty good care there. They must have spent all their money on the renovations, though, because we've had to start going to Cincinnati for everything-geneticist, cardiologist, neurologist...All of the pediatric people are leaving and the adult side isn't faring much better.

[selmaS]

  Hi...I was thankful to get ur update, and sorry to hear u r still having issues, and the Royal Chiari Runaround to boot!

May I ask, how is ur PCP?...Can u ask him to do in depth blood panels?

Some of the muscle cramping can be from low magnesium and potassium levels as well as Vit D, B12...this can be a result of surgery and the meds and drugs used as well as a malabsorption issue if u have GERD or other health issues.

  Agreed that there is a vast majority of ignorant Drs out there that feel surgery cures u of this...I really do not understand how....

  But to help u with ur issues , I would look at blood  panels and see if any of that could be an issue....

Then go on to all the related issues with chiari, EDS, tethered cord, etc....

  hang in there, and u can PM me about that book : )

[irislita]

omg...its so frustrating reading all of this sad stories over and over again. how the hell can this jerk ask u to open up ur fingers which obviously wont open and let me tell u he really deserved ur answer. Sometimes I feel we are treated like people that need a shrink and people who are bored making up new symptoms...i am with u in the runaround.even my ns doesnt believe my symptoms are chiari related, but before was ready to make brain surgery???!!! My nl told me honestly she doenst know much about chiari and my second opinion of a ns was that u dont need surgery for chiari1, but this idiot does it hisself!!! i am sorry i cannot help u in anyway, but i do understand u so much...its not only the disease thats horrible, but more the way we are referred back and forth to people who dont understand...and then tell u its all anxiety!!! well i hope u can find someone to help u...p.s. before my symptoms got severe i also had feet cramps lasting several minutes and coming over and over again...it *****