Chiari Malformation Community
Feeling miserable
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Feeling miserable

Today, I had an appointment with my neurologist. I knew it was a mistake because he is not a neurosurgeon but since I am still waiting on that appointment I figured it was better than seeing nobody.

I was wrong.

I finally found a NS that specializes in Chiari in my state. (He was not on any lists. I had to do a lot of research and calling around. He is new to the area.) I called the neurosurgeon, got the contact information, and sent it to my PCP. They have yet to make the referral. That was two weeks ago. All they have to do is make a phone call. I called them today and they said that they hope to get to it "this week." I got so angry. The NS is already backed up until the second week of March. I have done all the background work for my PCP. They just have to make a phone call... I got bitchy to them on the phone. They said it wasn't marked "stat." Well, I am in an incredible amount of pain and having other issues. It's important to me.


grrr...

Then, I went to my neurologist. I know. Everyone says that the neurologist is not that helpful with Chiari. But, since I already have one...

I showed him my list of symptoms: dizziness, memory problems, tinnitus, weakness in arm and legs, tingling, pain in back and arms, pain in legs, headaches, severe fatigue, and bowel troubles. I showed him the report from the MRI, showing my chiari. His diagnosis?

None of my symptoms are caused by chiari. Instead, they're a combination of a Vitamin B12 deficiency and restless leg syndrome. Say what? I had my B12 levels checked two weeks ago. They were 392. That's not low enough to cause all of that.

He didn't even look at my MRI.

He said I did NOT have a syrinx because it didn't say so on the MRI report. When I pointed out that he was looking at the report for my brain (the one for my spine hadn't been delivered yet) he said that if I had a syrinx it would show up somewhere in my brain. Not true. The syrix shows up in the spinal MRI, specifically my lumbar one. Fluid buildup or lack thereof can show up in the brain, but not the cyst itself.

He told me that if I would just buy some over the counter B12 pills I would be fine.

I told him that I had an appointment with a NS. (Well, I WILL when they make it.) He shrugged and said that I could "drive all the way there" if I wanted but that it definitely wasn't chiari related.

I left.

I feel so miserable. I have trouble getting out of the bed most days. I am so tired and in so much pain. I sit here some moments, in my own living room, and can't remember where I am. My head feels like it is going up in flames but that's not as bad as the alternating of numbness and tingling in my arms. Or the back pain. And the fatigue...I get tired just walking across the room. I break out into a sweat trying to get dressed. Sometimes, simply taking a shower takes so much energy that I vomit from exhaustion.

I take a multivitamin everyday. I take iron tablets. I take antidepressants. I have tried these things for over a year. This is NOT anemia, B12, or anxiety related. That's why my PCP finally did the MRI-because none of her other suggestions had shown an improvement.

My Chiari malformation herniation is 8mm.

I hope the NS doesn't turn out to be crazy.
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9 Comments Post a Comment
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1925822_tn?1333709217
Oh i do understand u soo much.i hAve the same run around and still after surgery.its like a cat and mouse game.no one wants to be responsable for you or they just dont care.i stArted losing faith in doctors too.do thet think we are bored or what?i actually had a cynical laugh about the syrinx part.i was also told i dont have one till i found out here that u need a spine mrt.what he means is a synringobulbia,its a syrinx in the upper part.but it cAn be found everywhere.
I know what u mean by the endless feeling of living in a bubble and not being present.its horrible.
I hope,they make the referal soon.pressure them till they do it and i hope the other doctor will listen.keep us updated.
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1925822_tn?1333709217
P.s.and its not a mistake going to an nl...thats were we are suposed to go if we do have neurological problems...the problem is that too many dont understand chiari.i think it would be easier if our mrt would show up ms sometimes.then people do believe there is something wrong...i am sure u will find someone listening to you.
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1979479_tn?1330378618
I'm so sorry to hear that you are going thru all of this. I hope you can find someone that will listen to you. Your symptoms are pretty much the same as mine and I have cm thats 10mm and a syrinx thats about 4-5 mm long. However, i do want to ask if ur weight is normal only because people who are overwieght tend to have fatigue and if your are taking your vitamins then the only other reason for it may be your weight. if its normal than I would suggest getting 2nd and 3rd opinions about the CM.
good luck
-dani
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700067_tn?1332992883
Thank you. Yes, my weight is normal. I am 5'1" and weigh 110 lbs. I did get a call today saying that my stuff had been faxed to the Chiari specialist so I should be getting an appointment with that NS shortly.
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620923_tn?1405964489

  Hi and welcome to the Chiari forum .

  It is true once u have a dx of chiari u need a NS, but u also need a NL that is well educated in chiari as well...u do need to have all the other testing done to rule out related issues as it can affect ur recovery if u r a surgical candidate.

  Plus once u do have surgery, u only go until the incision is healed, then released from care, that does not mean u feel great...or u do not need a Dr, but a NS will not see u at this point, u need a NL that is of like mindedness with ur chiari NS.

  Do see several Drs...and make sure they check for a syrinx in all areas of ur spine, rule out sleep apnea, tethered cord, and ehlers-danlos.

  These will affect how u feel and heal if u have surgery.


           "selma"
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700067_tn?1332992883
I actually do have a syrinx. That was part of my complaint with the post I wrote above. The neurologist only looked at my brain report and ignored the spinal report that said I had one.
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620923_tn?1405964489

  The problem is the drs that do not have the experience with chiari do not know that a syrinx can be found in the thoracic and lumbar spine, they only look in the cervical spine, and that is y he said that....

The cervical spine is not as protected at the thoracic spine with the rib cage, so the thoracic spine is the area less likely in most Drs minds to see a syrinx, and the cervical spine is the most likely, so they only look there...and if they ask if u were in an accident and u say no, again they feel no need to look.

They have no idea how chiari can  cause a syrinx to form in these areas with out an injury.

   It is so frustrating...but once u get to a Dr that is well informed u will see a huge difference.
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Ugh! The infamous Chiari run around. My NL suggested I see an endocrinologist for my chiari, lol. I just giggled and said, okay.. then my BF found the amazing Dr. Ellenbogen. My pcp made referral the same day I asked and had surgery 2 months later. I went through HELL for 2 years. Its not fair for us.. just cause we aren't in a body cast doesn't mean we're not sick or in pain.

I do hope u get treated asap!
Krystal
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700067_tn?1332992883
Yeah, it's frustrating. I also got the "well, you look okay!" diagnosis. I'm sorry...maybe I shouldn't have brushed my hair and come in my pajamas.

I got a call back from the PCP today. They have faxed my records in to the NS so I should be hearing something about that appointment soon.

I understand all of that about the placement of the syrinx. I was just venting about my doctor. He is the underinformed one, not me.
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