Hello everyone - I am new to the site. Due to an MRI of my Cervical spine for herniated discs, it was discovered that I have Chiari 1 malformation. I have had back pain for about 10 years (I'm 29, male). I have multiple herniated discs in lumbar, thoracic and cervical spine which is the cause of some/most of my pain.
I have been suffering from debilitating upper/mid back pain - between my shoulder blades. I am wondering if anyone else with Chiari has had similar pain? My doctors does not believe that the Chiari is causing this pain and is adamant that it is from a cervical disc herniation, however, after epidural injections and multiple treatments the pain has not subsided.
Has anyone with Chiari suffered from Thoracic spine pain? Upper/mid back pain?
I have chiari 1 and I have pain from the middle of my back up to my neck and into the back of my head. I also have a burning pain between my shoulder blades. Before I had decompression surgery I would even have pain in my collarbone. That went away after my surgery, but I still have all the other pain. I also suffer from chronic fatigue. I’m just seeing my family doctor now and he thinks my symptoms are most likely from the chiari. I have been have been tested for everything that could possibly cause these symptoms and everything always comes back fine. The only thing that we can conclude is that it must be from chiari. I do have other symptoms to, like tingling and pain in my arms and legs, my feet and hands go numb, random muscle spasms ,ringing in my ears and sometimes I feel dizzy. I hope this helps.
Dear soccbball3, I would have to agree with Liberty1 about the research. You could possibly have a syrinx and they injections would not be good. Also, be specific when you mention what area of the back hurt and that you would like an MRI to rule it out. They generally don't give MRI's to whole back because of cost, waste, etc. I have 2 syrinxes. My neuro has told me that decompression has caused the cervical one to shrink. I still have one in the thoracic area. Why is this significant? Just saying you do have one/couple and find out, you are going to want to make life style changes. Stop some sports, jobs of labor etc to prolong your quality of life. This is reality and not being negative.
Thanks - I will look into the Syrinx. I don't believe there was one reported on the MRI, but I have not yet seen a Neurologist, only my Pain Management Doctor for my herniated discs as seen the MRI. I have recent MRI's of the whole back within the last few months due to all of my herniated discs (roughly 8 in total). I've stopped most sports and weight lifting. Strictly stick to treadmill walking currently, but hoping to add in at least some body weight exercises to stay fit. How do others stay fit/exercise?
I have definitely had thoracic pain for the past 30 years. negative X-rays and MRI's for any concerns in the area. It was never debilitating but tending to be there most of the time. I have found that drugs do not work. I have found that a heated grain bag helps to get to sleep. I have also found that neurodynamic exercises encompassing my feet up to my thoracic spine has helped tremendously - a big time commitment but worth it. I have also found that on-line graded motor imagery exercises from the Neuro-orthopedic Institue help as well - another time commitment. From the reading that I have done, my brain has messed up how it sees and receives input from my spine. Therefore, my brain perceives pain all the time as it is confused and that is how it manages. To date, I do not use a heat bag to get to sleep and I generally feel good during the day. I am more aware of the area as being different, but that is a far cry from being painful all the time.
Long term nerve compression can lead to a condition called neuralgia. I'm sure we have all heard the term, but I'm not sure we always understand the implications. The best way to put it is that it causes everything to go wacky. Pain management, symptoms etc. Worse it causes so many issues, we start grasping at straws. Injections don't work, medications don't work and rarely does surgery work when we get to that point. This is an older piece and although it is more specific to one of our other communities, It is well worth taking a look at. Ken Casey explains better than anyone I have ever seen or heard whats going on and what "neuropathic pain" is and why it is so bloody difficult to treat. Its long but please take the time to watch. It is very helpful and very applicable to Chiari (type1) patients:
Hello Kevin, I have mid to lower back pain also. I had a corpectomy with fusion c5, thru c7, this was due to a car accident, and a later work related injury involving a ladder and concrete floor. The work accident was a torn rotator cuff and alot of bruises and closed head injury. I had that in April 2011, my first decompression in May 2102, the corpectomy in October 2103. Too soon following the last surgery I strained myself lifting my mom, she needed help for about a week. Not a smart move on my part, I was feeling pretty good, my brain slumped, and I had my second decompression with dural mesh Jul 2015. I fell in January on ice, like an idiot, going through tests right now. My neck affects my head, my head affects my neck, it's all related, and I'm sure you can feel it like I can. Find a good doc that listens, get the right tests, be diligent, you have too. I lay on a big ice pack when I get really bad, and use essential peppermint oil. I hope this helps, I'll send positive tbought your way.
I have the same symptom you've mentioned. Also, informed they are being generated from my cervical herniated discs- lumbar herniation as well. I've had one epidural for the lumbar. Today, I am scheduled for my cervical injections. Thinking of backing out today..
My left hand and 4th and 5th digits (fingers) are weak and numb. My neck muscle has created a spasm all the time. Otherwise I stay positive in life. Taking medications for the headaches 1.4cm chiari about 17mm I'm told.