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Chiari Malformation Community
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Advice needed...Am I going in the right direction?

Hi Everyone!

I was in a car accident in 11/2013 and have been dealing with all types of symptoms since then.  Mostly with my neck and head.  Sever pain in my neck and at times severe headaches with other symptoms I will list below.  In July of 2014 I went for a cervical MRI...The conclusion from the report:

1. 4mm AP right-sided herniations at C4-5 and C5-6, with cephalad extrusion at C4-5, causing moderate right-sided central stenosis/cord compression at both levels. Also, 3mm AP right-sided herniation and osteophyte at C6-7, with no other high-grade central stenosis or cord impingement.
2. Findings cause moderate to severe foraminal stenosis bilaterally at C4-5 and C6-7 and on right at C5-6, with impingement upon/compression of both pre-/intraforminal C5 and C7 and right C6 roots, which is chronic on left at C4-5 and at C6-7.
3. Chiari type I malformation, with tonsillar ectopia to 10mm below the foramen magnum, no mass effect on the cervicomedullary junction and no cord syrinx.
4. No facet arthropathy, fracture, osseous neoplasm or infection and no myelomalacia.

So far, all of the doctors I have seen have focused on my neck.  Nobody wants to talk about the Chiari.  I've seen an Orthopedic Surgeon who wants to do a C4-C7 fusion of my neck (front and back), which I don't want to do until I can find out more about the Chiari and try to determine if the symptoms I'm experiencing are coming from my neck or the Chiari or both.  

I live in Wisconsin on the Minnesota border (grew up in MN).  I just finished writing a letter to the Neurosurgery office of the Mayo Clinic.  I'm trying to get in there hoping to find out more about the Chiari and what is causing the symptoms.  I have to send the Mayo a CD of my MRI and MRA images, they review them and call you for an appointment.

Here is a paragraph from the letter I'm including for the Mayo:

The major complaint I have are the headaches and neck pain.  The headaches range in severity.  The worst pain/headaches are definitely a 9 on a pain scale, the pain in my neck is very bothersome, I get a weird “helicopter” sound in my right ear, the ringing in my ears is more pronounced and I have uncontrollable facial spasms, I feel very anxious and with these types of headaches I get very nauseous and most times throw up.

At other times and most common I will experience what some might call a tension type headache, the pain is at the base of my skull, feels like I was kicked in the back of my head. Other symptoms I have are:  A swooshing sound in my head (can be turned on/off my turning my neck, can hear it on both right/left side) constant ringing in my ears, facial tingling (left sided), facial spasms when I get a “bad” headache, trouble focusing, fatigue, anxiety, balance problems, dizziness, when walking I have an electrical sensation that starts at the base of my skull and travels down my neck, to my shoulder blades and out through my fingertips, numbness and tingling down both arms, more prominent on left side. At times I feel like my throat is closing, my voice gets horse, and there are times where I feel like I can’t swallow, I really have to concentrate on swallowing to make it work.  There are times where I feel drunk, usually on a daily basis. My joints hurt, I have swelling issues with my feet and calves. I try very hard on a daily basis to not let my symptoms been seen by others, on the bad days it’s harder to hide what my body is going through.

Do you guys think I'm going in the right direction?  Trying to get seen by the Mayo?  Does anyone know of any Chiari Specialists in Minnesota in case the Mayo won't see me?

Thank you for sharing and  for the knowledge!  It's comforting to know that your not alone because with the symptoms sometimes you feel crazy and trying to explain it to someone is really hard.

Have a great day and I thank you in advance for your advice!  :-)
4 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Mayo is a big name clinic BUT it is not known for treating Chiari,,,,,,so unless you go to them for something other then Chiari, I would not suggest you go there  unless you have researched a Dr and they treat out of Mayo,,,,,

Not ALL that claim to be specialists are .....and we ALL need to research Drs once we have names ,,,,,what and and who  works for one may not work for another....you need to be confident and comfortable with the Dr in his knowledge and his experience....and personality.

We do have a list of Drs....they  may not be close to your home...and they may not be true Chiari specialists....this list was compiled by members here of Drs they have been to, treated by and liked....you need to research the Dr to find the right one  for you.

MINNESOTA

Dr. Mahmoud Nagib
Neurosurgical Associates
913 East 26th Street
305 Piper Building
Minneapolis, Minnesota 55407
Phone 612-871-7278
Fax 612-863-8531

Dr Nicholas M. Wetjen, M.D.
Mayo - Rochester, MN
Neurosurgery & Pediatric and Adolescent Medicine


  
4237959 tn?1356137806
I wanted to mention my personal experience which is similar to yours.

Like yourself there are No Chiari specialist in my state,do my options where to see a Neuro Surgeon as you have done aswell.

  It seems that so many symptoms that basic N.S. see are from cervical issues.Theresa a simple reason for this in that Chiari is fairly rare.
  However cervical issues are very common,so for 'basic' Neuro Surgeon they see daily patients with similar symptoms,some of these patients have found some degree of relief from cervical fusions.
  This makes the everyday N.S. feel a 'one size fits all's effect,so they tend to treat patients similarly.
   Please if your financial situation of insurance allows do try to goto a CHIARI SPECIALIST, these few specialist have the experience and ability to make the proper surgical procedure happen.
  For myself personal,I've been treated for all sorts of cervical issues,with absolutely no true relief as well as have had 6 years of my life wasted by these 'conservative' methods to treat my Chiari.
  Don't waste time if circumstance allows,please see only a specialist.
Avatar universal
Did you finally find a specialist that worked for you?
4237959 tn?1356137806
I'm on Medicaid and trying to find a route to get specialist care atm.
  I was unsure is you where asking me.
A local neurosurgeon in my area wanted to help me,however it's obvious as of late his qualifications are limited.
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