Chiari Online Support Group

My physician discontinued my care DUE TO COMPLEX CASE


#1

Have you ever received a registered letter by mail from your physician's office? I did it stated a code # and stated my Dr will be discontinuing my care due to the complex nature of my case and that I need to call my insurance (ohp) and find a new Dr, I am so frustrated I feel like I did something wrong! All I asked for was referrals to the neurologist, a sleep study and a new MRI to look for Syringomyelia because my symtoms are pointing to that, I am in extreme pain and I will not live like this...I feel like it's taboo to ask for pain medication, so I asked to be seen by the specialists to prove what I am going through in hopes at the end I would be placed on a pain program ...I don't want pills actually I really need pain meds but if I ask over and over they say no it makes me think I better not even ask even though the back of my head is being squeezed and my neck is so stuck I can't pick my head up but they won't help me ... why can't they help me with this? The neurosurgeon said a decompression surgery is like taking a roll of the dice...it might not help one bit...or it could change my life for the better he just couldn't be sure...I really am up a creek I need a dr and I am on state medical system can this support group advocate for me? I have a husband but he doesn't understand and he's very busy business man, I have friends they understand but everyone's so busy and want to help me but don't have time to help me make calls and I don't drive so I always have to make appointments way ahead of time so my husband can take his time to take me but I feel guilty and he hates how much time it takes...chiari malformation is a big Ole speed bump in my husband's life...it's like how does he think I feel? Geez

I really need someone to advocate for me


#2

Hello there Rebecca, I am so sorry you find yourself in this situation. My heart goes out to you. All we can do here is support you and try to point you towards whatever resources we have or are aware of.

I've got a couple of ideas which I'm following up with other members but in the meantime have you checked out our Doctors List? Perhaps you could ask your husband or a friend to put some time aside to sit down with you and take a look.

Hopefully some other members in Oregon may have some suggestions as well.


#3

Hi, Rebecca.
I did some research and found the state of Oregon’s (DHS) Department of Human Services’ website. There are a number of social services and advocacy groups that should be able to advise you on what to do from here. Here are a few links to these services-

http://www.oregon.gov/dhs/Pages/index.aspx

http://www.oregon.gov/dhs/spd/Pages/adv/home.aspx
http://www.oregon.gov/DHS/aboutdhs/pages/gao.aspx

Please let us know how are things going for you once you’ve contacted Oregon DHS.
Best wishes,
Laurie


#4

Rebecca, I hope you can find help. I know the feeling of being a burden to others and its not fair.


#5

I am also being shuffled around from Dr to Dr so I have decided to check Mayo Clinic and Chiari Institute. Both are very far away but I send my MRI and questionare and the Dr review my case before I make any trip


#6


Thank you so much I have a place to start now that's a relief!
BaltimoreBaby said:

Hi, Rebecca.
I did some research and found the state of Oregon's (DHS) Department of Human Services' website. There are a number of social services and advocacy groups that should be able to advise you on what to do from here. Here are a few links to these services-

http://www.oregon.gov/dhs/Pages/index.aspx

http://www.oregon.gov/dhs/spd/Pages/adv/home.aspx
http://www.oregon.gov/DHS/aboutdhs/pages/gao.aspx

Please let us know how are things going for you once you've contacted Oregon DHS.
Best wishes,
Laurie

#7

Hi, I am in Oregon as well. I have found a CNP who got me my diagnosis of Chiari after 13 years of, you know, Chiari hell. She has been learning with me and is open and kind. Are you anywhere near Klamath Falls?


#8

Hi Rebecca are you in the Portland area or which area? I am in Boring/Sandy area and I have some doctors that I see at OHSU which takes OHP so if you’d like to talk you can message me and we can talk.


#9

No, you did not do anything wrong. Please, do not stress out about it. Don't give this matter even 2nd thought! Your Dr. stepped away so another more qualified (or motivated to learn, research and understand our condition) Dr could step in. All that matters. It is OKAY to seek 2nd opinion, 3d opinion, have additional MRIs etc. My regular neurologist never minds when I take off to some Research Institute or neurological center when I have some new symptom flaring up. That's how I have it, I have prescription Dr (neurologist) who treats my migraines. I don't have medications for pain but I do have medications that prevent and abort migraine attacks. I do not venture into Chiari with this Dr much. He knows about it and that's about it. When my eye goes bad or I have other concerns or worsening of the symptoms I go to big name Drs and re-visit neurosurgeon. And if they are no help, I just drop them but I always keep my prescription neurologist.

Try to figure out your pain. What is it? Headaches? You know some of them could be migraines, for whatever reason many of us are prone to them. If triptan medication works on your headaches, it is a migraine. And it is a good news, because there are meds and botox...for migraines

And to respond to your question, "Did I ever receive a letter from a physician office?" I sure did!:) It was gynecologist tough. We got in a big argument after he insisted to liquid nitrogen (freeze) precancerous cells on my cervix and I asked to retest me in 6 months after I try some herbal treatment instead. Freezing has serious drawbacks so hey...Dr was furious, he yelled how I am gonna end up with cancer etc. I said good byes and walked out. He had to send me letter not to get sued if I get cancer. Do I care? I did herbal treatment and took vitamins and my body cleared of those cells on its own. In one year my test was absolutely normal. Moral of the story. I did what I felt was right for me. Pleasing Drs whose treatment plan could hurt me later in life...I could not care less about it.

Please, stay stress free. Leave that Dr behind (with every thought about him), don't look back, find new one. Get medication you need. Listen to your body.. learn more about our condition...enjoy pain free moments.

On friends....I recently got a german shepherd pup (5 months now). She is only one who never puts me down because of my condition. Even when she gets naughty and makes me upset, she makes sure she will her "I am sorry" through ASAP with her eyes and licks. She woke me up last saturday, it was past 11 am. With normal wake up time at 7 am and my head exploding from pain when I did wake up...I wondered for a second, if she did not wake me up, would I ever wake up on my own? But she was there...

Your neurosurgeon said a wise thing about surgery...love the way he put it.

Take best care of yourself, we are here for you when you need us.


#10

So I am curious, when was your last MRI? Its highly unusual that a Syringomyelia would not be present or figure into the surgical consult. The reason for the sleep study is what?

There are very specific criteria for treatment of Chiari (Based on outcome history) and also for both MRIs and Sleep studies. Its fine to ask, don't misunderstand me here, but the harsh reality is there is not a lot of science behind treating Chiari except in a few very specific instances and pre approvals for not only surgery but many studies is hard to come by with most insurance companies. The headache/pain cycle has NOT been proven to have any connection to chiari except with a flow restriction. With a syrinx, its preventative and again not related to "pain"

Hopefully you will find a doc who can work within the parameters set up and still provide you with treatment. Keep in mind the only treatment for a Chiari is surgery. Pain management may very well be an appropriate referral. You deserve a life...................

What was the code number on the letter?


#11


Hello Tj1 sorry for the delay in answering back, I asked my Dr for referrals to have a sleep study...because I stop breathing I gurgle and don't wake up unless woken up I will literally sleep through alarms ect., my husband has told me every night what I am doing and he thinks I can change this by myself...I can't I need a sleep study to prove what's happening so I can fix it.

#2 ....I HAD A MRI DONE LAst YEAR IN JULY ...MY HERNIATION IS 8 MM after the MRI I saw Dr Kokkino neurosurgeon at oregon neuroscience he was frank with me ...he said he would perform my surgery and it would be my choice because it was not a emergency and he said me getting my surgery wouldn't guarantee that I would be fixed ...ie it wouldn't guarantee my symtoms would improve

#3 I WANTed AN ADDITIONAL MRI WORKup...I was hit by a falling hammer by a worker I hired to hang security cameras in my store...I was spotting them on the ladder the hammer fell they yelled watch out and I got hit in the back of my neck...after that happened my neck swelled up and every time I cough sneeze strain ect I get intense pulling at the bottom of my spine and my symtoms have increased I have episodes of incontinence as well and a deep burning sensation in my upper arms

I am trying my best to answer your questions I am at work and it's too hard for me to adequately finish this here...I will finish this up tonight

TJ1 said:

So I am curious, when was your last MRI? Its highly unusual that a Syringomyelia would not be present or figure into the surgical consult. The reason for the sleep study is what?

There are very specific criteria for treatment of Chiari (Based on outcome history) and also for both MRIs and Sleep studies. Its fine to ask, don't misunderstand me here, but the harsh reality is there is not a lot of science behind treating Chiari except in a few very specific instances and pre approvals for not only surgery but many studies is hard to come by with most insurance companies. The headache/pain cycle has NOT been proven to have any connection to chiari except with a flow restriction. With a syrinx, its preventative and again not related to "pain"

Hopefully you will find a doc who can work within the parameters set up and still provide you with treatment. Keep in mind the only treatment for a Chiari is surgery. Pain management may very well be an appropriate referral. You deserve a life...................

What was the code number on the letter?


#12

Hi Chiari friends !! I haven’t been on here in a few years, I am really up a creek with my condition now. I’m going to the hospital soon bc something is very wrong, theres a huge lump on my neck and the pressure in my head hurts so bad, I can barely lift my head .


#13

Sleep study was needed bc I stop breathing during sleep, I sit up in the middle of the night and don’t remember my husband wakes up and tells me I’m sitting up and to lay down, I gurgle and hoot during sleep…not good