My PCP sent all my information to Dr. Ellenbogen. I just got a message from them saying I'm not a candidate for surgery. My herniation is borderline. I should seek medical management of my symptoms through a neurologist.
I put all my hope in Seattle. I thought they would understand and in a few months I would be decompressed, back on my feet, and getting my life back. I have no idea where to go from here. My PCP chided me just yesterday to look on the bright side - at least it's not cancer! No, it's not. What we have isn't terminal. But I can't imagine living the next fifty years like this, slowly losing my sight, my hearing, my muscle control, my sense of touch on my left side... I am beyond disappointed. I guess it's fortunate that I'm going away to Hawaii Sunday. A week with myself in the sunshine, a notebook, and time alone to figure out where to go from here, if anywhere.
Is there any way you could get here to San Antonio to see my ns he goes on symptoms ?? Davis jimenez at UTHS google wonderful man he believes in the patient knowing their bodies and size doesn’t matter maybe you could send him your stuff? He scheduled my surgery after the first visit worth a try? How big is your herniation? Not that it matters because he says that it’s your quality of life
I'm so sorry to hear this! :( Please enjoy your trip to Hawaii. I hope you have a great time and get to relax and enjoy the beauty! Don't give up on getting treatment. I would take a break and then when you return home continue searching for the right doctor, one who knows that size is not what matters.
I could probably go anywhere - I have two very good insurances for now. I am just reeling... Dr. Ellenbogen is at the University of Washington, and Chiari is one of his specialties. To hear from him I'm not a surgical candidate... It makes me feel like that was my last hope, and I'll just have to live with this for the rest of my life.
I'm not making any big decisions until after Hawaii. There are a lot of things I have to think about and I can't do it here. Every day is an exercise in biting my tongue! I'm bringing a notebook and I'm hopefully going to do a lot of writing, pro/con lists, and getting all my feelings out on paper. When I get back I'll try again.
I am so sorry that you got this news....I am curious, however, that a doctor could make such a decision based on records, tests, ect..without visually seeing the patient and speaking with the person face to face.
Your symptoms should speak for themselves...the size of the herniation does not matter from what I have read.
I think you have the right idea..go to Hawaii (BRING ME!!)..relax and write things out...
Have a safe and fun trip...When are WE leaving????LOL
I have been told Dr Andrew Holman is the man to see in Washington. I believe he is a rheumatologist that works with fantastic neurologist and neurosurgeons. I have fibromyalgia and a Chiari malformation. He was recommended to me as someone to consult. I live in Oklahoma and I am scheduled to fly to The Wisconsin Chiari Center for further testing. Don’t give up!
I am so sorry! I too have decided to go back to Ellenbogen but when I called and left a message to make an appointment. They called back and told me to call the triage nurse line? I had said my symptoms were way worse. I did that the nurse could not believe they had made me call, didn't say it but you could tell. I called back to make an appointment and this part I can't believe, they wouldn't make one. I have to write a letter/email before I can get an appointment. She will forward it to Dr. Ellenbogen and then if he feels there is enough whatever it is he wants I can come back. Needless to say, I'm not holding my breath! A little history on Washington State. The former Top Neurosurgeon who is in jail on unlrelated to Chiari stuff. He started this nightmare. He would only operate if it was severe. So when other Neurosurgeons operated and if the patient sued he would be the witness for the defense. He drove most Neurosurgeons out of the State and the ones that stayed their malpractice insurance skyrocketed. So if I had a 12 mm herniation with these symptoms I would have already had surgery. The fact that he claims that I am 1 mm above the formen magnum makes me think I'm just wasting my time. He is holding every Chiari patient hostage in the state, nobody will "cross" him. Without him diagnosing me my husband will not let me travel out of state for surgery, I'm not even sure I could handle it with the anxiety. Something needs to be done but I don't know what?
I just sat in my PCP's exam room and cried. This was before I had even contacted Ellenbogen's office. My PCP is the greatest but he doesn't know a lot about Chiari. You could tell he was frustrated too. I had forgot about how surgery would stop the progression of symptoms but will not bring back things you've already "lost". Blocking the pain was my only thought but now I think even if I could what am I blocking? Am I blocking irreversible damage? Should we even be trying to block the pain knowing what we are gambling with? I want off the roller coaster, my family doesn't deserve this. Maybe I will go to the Neurosurgeon up in Bellingham that my pain doc recommended. The reality is I won't let anyone but Ellenbogen do the surgery here so what's the point?
Sarah
smozer said:
You are not alone, I am going through the same thing right now. A couple of weeks ago I was told by a neurologist that I wasn't a candidate for surgery because one of my symptoms is not typical of Chiari....my left arm tremor. They have diagnosed me with an 8mm herniation, I have just about every symptom of Chiari but because he feels that the tremor is not Chiari he will not recommend surgery. His advise to me was, and I quote, "keep fighting".
I cannot even define the feelings I had after that appointment. Angry, depressed, sad, confused, frustrated and appaled all at the same time. I allowed myself to be consumed by all of these feelings but after a few days my wife managed to cheer me up and encouraged me to not give up. It's just a roller coaster of emotions.
My plan now is to send my medical records along with imaging to Chiari specialists around the country in hopes of getting an expert opinion, and ultimately treatment. My current insurance will not cover out of network, so I am pretty much on my own but determined to find a solution.
Just this last week I called my PCP and they're trying to get me an appointment with Dr. Ellenbogen. I've been diagoned twice - once in my early 20's and then again here in Spokane a few years ago.
If I remember mine was only about 5mm so I'm probably SOL too.
I highly recommend Dr Ali Krisht in Little Rock AR if you are willing to travel there. I was a reject of The Chiari Institute in NY. Dr Krisht always does a CINE MRI and I recommend that everyone have one for an accurate diagnosis of what we have going on. Dont give up!!! I am 15 months postop and feel so much better.
I would like to recommend someone for you to look at.He is in N.C. a pioneer in this field,just call his office and see if they might set up a consultation with you.Dr.Micheal Rosner,you can get his number on line,he’s in…Hendersonville,N.C. Don’t give up call and talk to him.
I struggled with symptoms from the age 16-25. When the MRI finally showed the compression, I waited 10 months. My pain was crippling, and I had two small kids. The doctors treated me like I was crazy. Putting me on depression meds. I had to keep telling them that the reason I was depressed was because of my pain, and confusion. There will be a light at the end of the tunnel. I had my decompression surgery 2 years ago. Starting to slowly have issues again, but the surgery changed my life! Dr. Cone in Amarillo TX did an amazing job.
I hate to say this but yeah you are. Looks like Oregon is not good either. Steven is going to give you the name of his Neurologist he really likes. He is meeting with his Neurosurgeon on Friday so hopefully that goes well too. I should get a call from a doctor tomorrow that might help I will keep you posted. As it looks for now Ellenbogen doesn’t care about symptoms he only looks at herniation which is ridiculous because we all know that means nothing. It’s no wonder you can’t find complaints on him he stacks the deck!