Chiari Malformation - Online Support Group
We are patients and survivors of Chiari (types I-IV), here for your support.
Damn It. This Is Frustrating.
So.....Within the last couple of weeks, I have been told everything from "Your symptoms can all be explained by fluctuations in your blood sugar", to "I can't find anything wrong with you". Meanwhile, I have three...count them...three, MRIs since March of last year that show a 5mm Chiari.
Practically every single doctor's appointment I have had in the last 15-20 years can be explained by Chiari. The stomach issues that I have continually had for the last 13 years. Possibly the low testosterone issues that I have had for the last five years or so. The inexplicable 100 pound weight loss that I have experienced in the last year. The fact that in late January of last year, my A1C was at 6.6. On March 7th, it was 9.7. Somehow, in a matter of less than six weeks, I went from borderline diabetic to insulin dependent. I don't know.
I do know one thing. Diabetes does not cause your body to spontaneously collapse and lose bowel control. That happened last Saturday night. Diabetes does not make you forget how to spell or how to sign or print your name.
Yesterday morning, I didn't recognize my own daughter. Add to that the fact that I'm collapsing nearly half a dozen times a day. Prior to my spinal surgery, I collapsed once every other week.
I went for a second opinion with another spinal surgeon a couple of weeks ago. He looked at my MRIs, and said "I can't do a thing for you. You have a Chiari." He referred me to a neurosurgeon at Barrow Neurological Institute. Get this. Any NS affiliated with Barrow will not so much as do a consult with a patient if they have had a prior back surgery. Too much of a liability. REALLY?!? WHAT HAPPENED TO THE HIPPOCRATIC OATH???
I finally got up the nerve to call my neurologist to request a referral to an alternate (non-Barrow) NS today. He refused. I informed him that I obtained the reports from the last two brain MRIs, as well as the cervical MRI that he has on file. All three reports indicate, in writing, a 5mm Chiari. His office said that the reports are often wrong and that referrals are based upon HIS expertise. Anyways, the NS he would be referring me to was the same one at Barrow that refused to see me. He suggested keeping my diabetes in check and seeing if symptoms improved.
Oh...get this. His office did give me one referral. They thought it would be a good idea for me to see an orthopedic surgeon. His assistant tried to give me the number to the same spinal surgeon that has operated on me three times since late June. Are you fucking kidding me?!?!
I managed to get back in contact with the spinal surgeon that I spoke with regarding a second opinion. His office was nice enough to refer me to another neurologist in town. He said that they should be able to get me in contact with a NS in town that can help me. His office also faxed over their notes on my office visit of two weeks ago. I took a photo specifically regarding my last cervical MRI:
Look at the info dated 01/04/2012. Also, look at the bottom line of the page. I have a Chiari.
When I called the new neurologist's office, they asked why I was making the appointment. I told them that I had a 5mm Chiari. The receptionist asked what symptoms I had been experiencing. I listed maybe a third of my most serious symptoms over the last six months or so. I haven't mentioned the asymmetrical pain or weakness. I didn't mention the seizures. I didn't mention the vertigo or the fact that I see yellow blotches off and on throughout the day.
I told her that I had been seeing another neurologist and that I have had this Chiari show up on multiple MRIs since March of last year. Then I told her that he attributed most of my symptoms to "diabetes". She started laughing so hard, she had to set her phone down. I have an appointment Monday at 1:30. Usually, there is a four month wait to get in for new patients. What I haven't told their office yet, is that the neurologist that I'm currently seeing is one of the most respected doctors in the country. In the 90s, he was the head of Cognitive Neurology at Barrow Neurological Institute. He's a professor at the University of Arizona, and he spends much of the year travelling the world speaking at symposiums and events on behalf of the medical community. This man is an expert in his field. That being said, he can also be an arrogant, pious know-it-all.
So, the next 24 hours are going to be a wild goose chase. I have to track down the radiologist reports from the March 2011 MRI, as well as the brain MRI that was done this Tuesday, and get copies. The more paperwork I have in hand that has the word "Chiari" on it, the better. Also, since my original spinal surgeon is no longer cooperating with my old long term disability provider, they need to have some sort of medical paperwork faxed to them showing that I am still physically disabled, so that they will continue paying for my health insurance.
Fun, fun, fun.
Comment
-
Moderator Comment by Twitch (Adam) on February 10, 2012 at 2:54pm -
Hi Laura. Yes, I'm in Phoenix. Ahwatukee area.
It's funny. Just an hour or two before you and Gabby posted your comments, I ended up getting a referral to a NS. It's a doctor by the name of Jonathan Hott. He's in North Phoenix. I have been seeing a pain specialist for the last month. On my first visit, he ordered a brain MRI, basically just to humor me. The MRI came back showing a 7mm Chiari and a 1.6cm cyst. At first he said that neither of them should be causing any symptoms. Then, as he was dictating notes, he said, "The patient has a 1.6 millim....HOLY SHIT!!! CENTIMETER?!?!? OH MY GOD!"
Then, I told him that, pain wise, my main complaint was the migraines. I explained that I have had the same migraine, 24/7, for more than three weeks. After telling him how it felt, and that in addition to the migraine feeling that it felt like I had a cement balloon expanding at the back of my neck, he said, "Oh my god. You have a Chiari."
For the first time, I felt like I have some validation.
He called Dr. Hott on his cell phone and explained my symptoms. Told him that I had a prior lumbar surgery, and that he would be referring me ASAP.
I called the next morning to make an appointment. His receptionist said that they had received my referral. She said that he is only in the office on Wednesdays. I'm his first appointment next Wednesday morning.
Wow.
So...if for some reason this doesn't work out, I will let the two of you know. I may need Kumar's or Nakashi's number later on.
Thanks.
-
Comment by Laura on February 10, 2012 at 5:59am
-
No.... mine is Dr Kumar and he is out of Good Sam. He and his staff are amazing. He really took charge and gave me the care I deserved. I so greatful. He is passionate and his patients arnt just another one to him. He has heart.
-
Comment by Gabby Ayon-Salcidos on February 9, 2012 at 8:53pm -
Me too I have my surgery in barrow az in may now I need repeat y mris bcz my simtomps came in back its weird I don't want to stay in the tube 3 hrs my dr its dr peter nakashi its your dr laura?
-
-
Very familiar story.... are you in AZ? Barrow is in AZ right? My surgeon was wonderful and not with Barrow. If you want the info, let me know.
-
Comment by Michael Salasky on February 9, 2012 at 6:15pm -
feeling your pain after this week visit with NS at hopkins.
-
Moderator Comment by Crystal on February 2, 2012 at 4:02pm -
Twitch,
I am so sorry that your doctors aren't taking your symptoms seriously:( It's sad that we have to fight this hard to get the care we need. My 1st NS and PCP both told me that my Chiari herniation and syrinx are too small to be causing my pain/symptoms. But...they are causing my problems! Frustrating...isn't it?! Is there anyone else that can refer you to a NS that specializes in Chiari? My Chiropractor is referring me, even though this is not normally his area. He is the only one that listens to me and admits that my problems are serious and need to be addressed by a specialist. He admits that he can't do much for me physically, but he is doing everything he can to help me in other ways. So...my point is...do you have someone like this to give you a referral? If not, call a NS that specializes in Chiari and tell him what's going on with you and that your doctors aren't cooperating and giving you a referral. Maybe...he can do something on his end. It's worth a try. I hope you get the care you need soon! You have been through more than enough.
Crystal
-
Moderator Comment by Twitch (Adam) on February 2, 2012 at 12:46am -
So. I went to the neurologist. Two days ago. Yeah....Things went THAT well.
After reviewing my images and the report concerning the brain MRI completed last week, I was told that the cyst in my brain is "of a very small size". Likewise with my chiari. He said neither of which should be causing any symptoms (even though they are).
He suggested that I get an MRI of my cervical spine. When I pulled out the images and the report from a cervical spine MRI dated 01/04/2012, he suggested that I get an MRI of my thoracic and lumbar.
When I pulled the images and report from those MRIs that were done on 12/14/2011, he simply looked at me with a blank stare. He said there was nothing he could do. No suggestions. No tests to run. No one to refer me to.
I asked him that since I'm having seizures and am in a position to where I'm no longer able to care for my daughter during the day, did he have anything he could suggest. He said it would probably be best to stop driving and to find alternative care for my little girl.
That was the end of the appointment. BTW...I realized after my appointment was over that I spelled "uncle" with a K, and the word "none" as "nune". That is how bad my brain has deteriorated in the last three months.
I am getting so sick and tired of dealing with this. I don't know where to turn. Since I spent much of the day running errands, I accidentally fell asleep on Monday afternoon for about three hours. In that time, my three year old got half dozen things out of the pantry, got into my wife's makeup, and took a series of photos of herself on my wife's laptop. I had no idea any of this was going on.
I can't even take care of myself during the day anymore, let alone a three year old. Things are getting extremely frustrating. I don't know what to do next.
-
Moderator Comment by lori on January 31, 2012 at 12:00pm -
Twitch....
What the heck can I say???? You are literally going through hell right now. Here is just a thought...can you make an appt with a NS w/o a referral??? If you can..go online and see if there is one in your area that is not related to that Barrows joint....If you get an appt....go prepared with all documentation and bring your wife along for a 2nd pair of ears.
Forgive me, you may have posted this..but...Have you had a recent MRI of your FULL SPINE????? Something is not right..bowel incontenence(s) and the other issues...come on now....something is WRONG!!!!!!!!
It totally grabs me when we have to do all the work trying to get healthy...I thought that was what a Primary was suppose to do..ADVOCATE for you....what does your primary have to say about all this BS you are going through??? Can he/she step in and help guide you where to go??????
Twitch, can you tell I am BEYOND PO'd???? Hang in there and know we are here for you.
Keep us updated on whats going on with this doctor run-around you are getting...For me, I use to call it "THE DOCTOR DANCE!!!"
You and your family are in my thoughts and prayers.
Peace,
Lori
-
Moderator Comment by Twitch (Adam) on January 26, 2012 at 11:07pm -
I was speaking to my wife a minute ago and realized something. I spent a week at the Mayo Hospital last March. They completed MRIs of my entire brain and spine. I wonder if their records show a Chiari as well. LOL. That makes three hospitals that I have to hit tomorrow.
-
Moderator Comment by Crystal on January 26, 2012 at 10:04pm -
Twitch,
I am so sorry that you're dealing with all of that:( We sure do get the run around with this...don't we?! I've been told countless times that Chiari and Syringomyelia are NOT causing my pain/symptoms. So...What is it then?! My PCP thinks I need to accept that I'm going to need to be on painkillers for the rest of my life. I'm sorry...I won't accept that! I admit that the pain is excruciating and I need them for the time being, but I don't want to just take them forever. I'm working on getting a CINE MRI, which my Chiropractor ordered for me. Once I have that, I can go see Dr. Ellenbogen, who is a NS that specializes in Chiari. Hopefully, he can help me. I hope you find a doctor that REALLY listens to you and is willing to help. We have suffered long enough!
Crystal
Please Like Us on Facebook and Follow ChiariSupport and Ben's Friends
To Support ChiariSupport.org, Click an Ad. Or Two.
Powered by Bensfriends.org
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
© 2012 Created by BensFriends.org
You need to be a member of Chiari Malformation - Online Support Group to add comments!
Join Chiari Malformation - Online Support Group