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Hurting alone in Chicago

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:38 AM in New Member Introductions
Hi everyone, I'm 32 year old female-my medical problems are complex and doctors don't know where to start. It's difficult for me to even find a starting point to get to where the pain begins...

At 14, I was diagnosed with glaucoma, caused by Axenfeld-Rieger's Syndrome ( http://en.wikipedia.org/wiki/Axenfeld_syndrome ) -this syndrome also causes abnormalities in the development of the teeth and jaw. I had surgery to reconstruct my jaw at age 17... involving the insertion of several pieces of artificial bone and screws to hold them in place.

The doctors suspect I'm having pain because of the surgery I had. My pain is mostly on the left side of my c-spine and radiates down my left arm. Occasionally I get shocks that start at the base of my skull and radiate upward around my head. Occipital Neuralgia is suspected because of the 'shocks', but the neurologist cannot diagnose it because I also have pain starting at the tip of my left jaw hinge at the ear-- it goes down the front of my neck and it is excruciating. X-rays of my c-spine have not found anything abnormal.

Also, I don't have insurance--so, finding care and help hasnt been easy, but I've found a few resources in Chicago that help me-- but things aren't progressing anymore--nobody knows what to do with me. I've been told to see.. possibly- ear nose & throat, neurosurgeons and oral surgeons... they 'might' be able to help me. Going through the channels of the public health system this will take a year!

I have been prescribed Neurontin 400x3/day and tramadol 50mg/3x day. The tramadol sometimes gives me awful headaches. Also, vicodin for breakthrough pain-- but this doesnt help much either. Heat and cold, stretching and breathing... they haven't helped much either.

I cry myself to sleep at night and I'm so frustrated that nobody can seem to diagnose me. I want to know what is wrong so I can be treated.

Having surgery for glaucoma next week also... I know this will make getting around very difficult in the coming months. Treatment for my neck will have to be pushed aside during my recovery.

I think the pain can't possibly get any worse.. but then it does. It is ruining my life... just kissing my boyfriend has to be done with caution. I want nothing more than to beat this pain. Life is wonderful-I want to enjoy it...



  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i am sorry you have been having problems for such a long time... :''( i do hope the doctor's find a good starting point and go from there. take a look around the different info offered on the forum and see if anything is of interest to you.. if nothing else you have a whole lot of "spineys" behind you all the way.. =D> anytime you need to vent, complain, rail or cajole, just drop in.. we are always here for a laugh as well. :D good luck to you and please keep us informed. spiney hugsssss, >:D< >:D< Jenny :)
  • Hi Mandy.

    I am so very sorry to hear about all your pain and your trouble. If anything you are in the right place for people who deal with chronic pain and who are trying to find answers. I hope you find what you are looking for.
    I see you are from Chicago. I too am from Chicago. Well that’s were I am originally from. About 45 minutes south of Chicago. All of my family and friends still live out there and I go up there at least once a year. It is growing so fast.
    As far as your condition, I know Loyola is up in Chicago. Loyola has some of the top doctors, surgeons and scientists in their respective fields up there. It is known worldwide for its contributions and advancement to the medical field. I also believe they have programs and options for people without insurance. My mom had foot surgery up there and she does not have insurance. She still is trying to convince me to go their and to John Hopkins hospital when I come home. John Hopkins hospital is for vets though I believe. Also my friends sister is going to U of I (University of Illinois) in Chicago. U of I is known for there medical contributions as well. There may be some options for getting treatment at the local big Universities out there. If anything they can point you in the right direction. I hope this helps. More importantly I hope you find peace and rest.

    Take care,

    :H =D> :D
  • Your story is just heartbreaking. That is alot of years of pain that you have had to deal with. One thing that you can definitely count on is the fact that you are alone no more. You will find wonderful people here that are also suffering chronic pain in one form or another. This is a very supportive group that you can count on night or day. Please do not hesitate to come here when you need support. I look forward to following your story until the day that you get relief because if you are persistent I know that day will come. Good luck and please keep us posted.
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