What is wrong with me???? Help Please

[MelissaJane1973]

This is a long one, that I will try to keep it as short as possible. I have sufffered from headaches for yrs, started all of a sudden in '97. The ER told me I had an appt with a neurosurgeon, because I had a brain tumor. Well it scared me - the whole thing was traumatic & a long story).  I was told by the neuro it was nothing to worry about & check every yr to C if it grew. It has but not by much.  Well my symptoms seemed to progress over the yrs and more things came on. My symptom list grew. I had surgery for ACM type 1 in Oct. '07.  It only helped my headaches a bit. My other symptoms the worst: Back pain (upper & lower), leg pain (both), some arm pain, tingling, numbness (arms, legs & facial at times). Anyway some days it is hard to walk. I've had falling incidents (my leg just gave out on me). My pain somedays is just moderate, then other days it is severe.  One doctor tried to make me think I was crazy. 1 doc who I dropped (he tried me on different meds & 1 I had a severe allergic reaction to & ended up in the ER, but he told me to keep taking, so I dropped him). Anyway here is what they found:
03/09/07
MRI Cervical Spine with out contrast
Clinical Indication: Neck Pain, radiculopathy

Comparison: There are no prior studies

Findings: Alignment and vertebral body heights are within normal limits.  Within the T4 vertebral body, there is a 1 cm mass, high in signal on T1 and T2 weighted imaging, consistent with hemangioma.  There are low-lying cerebellar tonsils which extend approximately 6 mm below the level of the formen magnum.  Calibler of the cervical spinal cord is unremarkable.  Signal is unremarkable.
At C2-C3 there are degenerative disk changes.  There is posterior disk and osteophyte, somewhat eccentric to the left.  Canal measures approximately 1.0 cm.  There is minimal left-sided foraminal stenosis.

At C3-C4 there are mild degenerative disk changes.  The canal  measures 1.0 cm.  There is no foraminal stenosis.

At C4-C5 there is no canal stenosis.  There is some unconvertebral point proliferative change resulting in mild left sided foraminal stenosis.The C5-C6, C6-C7 and C7-T1 levels are unremarkable.

Impression:
1. There are degenerative disk changes at C2-C3 and C3-C4.  This results in minimal central canal stenosis.
2. There is mild left sided forminal stenosis, C2 –C3 and C4-C5.
3. Low- lying cerebellar tonsils consistent with Chiari 1.

That is just one of the many MRI's I have had.  They say that nothing on there would cause pain.  They say it must be depression.  I have anxiety not depression. I have anxiety because of the pain I have suffered from over the years. So tell me: Forminal Stenosis, osteophytes, osteoartritis, & degenerative disc disease: does it cause pain or not & some of the symptoms I have told you about.  I do not have enough time to get into all of my symptoms, but I just wonder why some tell me that it is nothing.  That all the pain is just in my head.  I know that it is not in my head!!!! I am sick of that.  I was a very very happy person before.  I was doing PT/OT and it seemed to double my pain. I am awaiting a new appt with a new neurologist.  The last one who said it was in my head (w/o any of my records or MRI's) was not covered by my ins, so I am awaiting and appt with this other neurologist.  I just wonder why no one seems to think these things could be the root of my pain & suffering.  I don't want to be in pain anymore.  I don't want to be on medication anymore.  If I have to be, I want to know what it is that is causing me all these problems.  
Thank you ahead of time.  I cannot write anymore for now.

[rosie028]

Syringomyelia is described as follows, a CHRONIC progressive disease of the spinal cord characterized by the development of cavities and gliosis(proliferation of neuroglial tissue in the central nervous system) of surrounding tissue.Cavitation(formation of a cavity) occurs in cervical and lumbar regions (C and L spine)and soon involves pathways of the cord that carry impulses of pain and temperature sensations, resulting in dissociated sensory loss. Destruction of the lateral and anterior gray matter causes muscular atrophy and weakness.
Treatment: There is no satisfactory treatment. Sudden enlargement of cavity may warrant surgical intervention with decompression of cavity. ******Persistent pain******* may necessitate chordotomy or medullary tractotomy for relief.
It sounds as though this is the reason for your pain problems especially w/ the C+L spinal problems you've been having. This came from a med book and hope it is of some help to you and can explain why your hurting in the areas your having trouble w/. Make sure to tell your new dr's of your past diagnosis w/ AMC and they will be able to access the problem further otherwise they have to investigate as to why your hurting from ground zero. Good luck and hope your days ahead look brighter!!!!!

[chadry]

Well everyone is different and many doctors say that what they see is normal wear and tear and it should not cause you pain. Many of us here at this forum have been told the same thing and we are in pain. I have neck issues that cause me tingling and numbness and pain in my arm. I know this is not in my head.
Hopefully the next doc you see will agree that you are indeed feeling this pain for real.
I do have some questions for you though about your ACM1. My 12 old daughter was diagnosed with this a few years back. We actually are going today to see another doctor in a different childrens hospital for a second opinion about surgery. The first one said she is a good canidate for the surgery. She has accasional heacaches when she strains Ex. laughing to hard, that kind of thing. Her main problem is dizziness. I know you have had the surgery but did they ever tell you that some of the things you are feeling could be from the ACM1. I know they told me to watch for changes in her like that. Problems with her arms and legs etc.
Can you please tell me about your surgery and your experience with it. There is no better way to help us make a decision than to hear about it from people who have already gone through it.
By the way there is a great webite for ACM where people post and discuss problems about this condition. It is www dot  asap dot  org.   I spread it out so that it would let me post it.
Take care and good luck. I would love to hear back from you. I personally do not think you are crazy and what you feel is real.Speaking for myself as a person who sufferd from anxiety and panic attacks for many years i can tell you that I did have alot of tingling sensations especially in my face area. It would get numb feeling. That is just my opinion on the anxiety issue. It can give you all kinds of wierd feeling but I never got pain from it.
Good luck
Chadry