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Avatar universal

Extreme Pain, Neck Pain, Headaches..etc..

I am so sick of feeling this way and just want a good week! Well I want to feel better period! I have been through 2 decompression surgeries for Chiari, after the last one I have felt even worse and I have symptoms worse than I had before and newer symptoms. I recently turned 40 years old.  My recent MRI's were NORMAL (as stated from the doctors). The Brain MRI, just states previous decompression surgery for Chiari Malformation and also mentions a lipoma in the supersellar region (it didnt' give the size and it differs on all my MRI's & CT's as to size and whether a lipoma, dermoid, or rathe clefts.

As to my Cervical MRI, they state:

Findings: There is a vertrebal body hemangioma of T4. The curavature of the cervical spine is within normal limits (weird because other MRI's stated lordosis). Theere is disc space narrowing and osteophytess at C2-3, C3-4, C4-5 and C5-6 and C6-7. The bony spinal canal is congenitally small. No abnormal signal is identified within the spinal cord.

C2-3 There is disc protustion or osteophytes causing mild narrowing of the left neural foramen. The thecal sac and right neural foramina are intact.
C3-4 There is disc protrusion and osteophytes measring 2mm. The thecal sac measures 9mm. There is mild narrowing of the neural foramina bilaterally.
C4-5 There is disc protrustion and osteophyte measuring 2-3mm. The thecal sac measures 9mm. There is mild narrowing of the neural forimina bilaterally.
C5-6 There is disc protrusion or osteophyte measuring 2-3mm. The thecal sac is flattened anteriorly. The thecal sac measures 8mm. Disc and/or osteophyteds result in narrowing of the neural foramina bilaterally.
C6-7 There is disc protrustion or osteophtye toward the left measuring 3-4 mm. The thecal sac is flattened anteriorally. The thecal sac measures 8mm. Disc osteophyte narrows left neural foramen greater than right.
C7-T1 The thecal sac and neural foramina are intact.

There is no abnormal enhancement in the cervical region. There is a suboccipital craniectomy.
Impression: Disc Protrusion and osteophytes throughout the cervical region resulting in mild stenosis of the thecal sac and narrowing of the neural foramina as discussed above.

Now could any of this be causing my symptoms? I know it is not in my head and it is NOT depression causing my issues! Something has got to be causing this. I want whatever it is gone and fixed.

Here are just a small amount of the symptoms I have of many:
I get severe pain in my neck and into my face to eyeball and above (all at once - starts in neck) - mostly my right side, but once in awhile I do get in the left - mostly the right though, big time!
I get severe pain/migraine that feel like an icecream headache times 100!
Pain in upper back area worse in one area.
Pain extending into arm.
All kinds of migraines!!! Different kind/areas
Bad memory/concentration
some tinglng and pins needles
nausea
lightheadedness
face freezes up like paralyzing almost - feel like can't breathe, feel like going to pass out (and i have before so I know what that feeling is like), weak, get dizzy but is not spinning dizzy, it is up and down up and down. It is very strange!
I have much weakness in my arm/hand (left side) and my left leg! Big time! I am having trouble typing and more trouble writing. Can't hardly hold pen to paper.
Off balance

Those are just some! (that is just my upper half).

So why are those results considered normal? They don't cause symptoms? I am in pain here and I need someone to help me but so far, a lot of the people I have gone to see, look at my MRI's for literally 30 seconds and say, "you have a headache, that is normal", etc...  or they say, "everyone has those things in your MRI'.  I want to feel better. I miss going to concerts, football games, and fishing! I can't stay at family function but for an hour or less. Sitting up etc..makes my neck pain much worse and then I get that into the face, eyeball, etc...!

Any help would be appreciated.

Thanks ahead of time!

28 Responses
Avatar universal
p.s. It was not the doctor who told me it was normal it was a nurse. Anyway, I am trying to see a doctor I have been to awhile back.  It is a good wait to see him. These MRI's they just told me on the phone no stroke and no tumor.

620923 tn?1452919248

  Hi.....The flattening of the thecal sac is where u may have issues....the lipoma may not be an issue and since u do not know a size it is hard to consider that an issue.,

I have a few bulging disks and cervical stinosis, (narrowing) and wonder if u have EDS as that is y my disks are the way they are, the connective tissue is lax and does not hold it all together like it should and can cause pain.

Also I was told a disk that is bulging can obstruct CSF flow just like the cerebral tonsils....

Sounds like u may have some issues that someone missed b4....wish I could offer more insight.
Avatar universal
Thanks I appreciate the help and insight. The last known size of the lipoma, dermoid or rathe cleft was anywhere between 4 and 5 mm.  I know that is small, but they kept fluxuating in the size of it when reported on the MRI. This last one didn't say. She for some reason (the one who does these reports) hardly ever states the size.  CCF, I think it was 4 to 5, I can't remember at the moment.

I wonder why some doctors say it is normal to have all of that? Also why they say everyone has it.  I am thinking on nurse I spoke when I called the ortho neuro (who did my lower back surgery where my disc broke) I was trying to leave him a message, but she told me instead that it didn't matter because everyone has that (even the flattening of the sac). I had no idea everyone has that. I wonder why they only look at a few of the MRI images and not all of them. Why do they take so many if they only look at a few (as stated by my local hospital).
Avatar universal
p.s. the last known size of the hemigoma (T4 area) was somewhere around 4 to 6 centimeters.  I don't know what it is now, since she didn't report that size either. Most all other radiologists have reported the size.  Our local radiologists have missed things a lot on my MRI's. I have had better ones from CC and in which has helped me in ways with knowing what was wrong, with what could have become even worse.  I was told that taking out the cerebral tonsils was no big deal (as we have discussed before) and that they have no function (by 2 surgeons) and yet other doctors have been shocked that they were cut off.  I sure would like to get a poll and see if anyone has become worse after surgery and if they were if they had theirs cut off too.  It would be interesting to know.
620923 tn?1452919248

  My understanding is they are finding more uses of the cerebral tonsils, and they use to remove them to make room....now they only do so if there are other components entwined around them....mine were cauterized....and not so they completely retracted but just so they moved a tad bit out of the way.....


Each Dr is going to have a Diff opinion as Chiari and the research of how it affects us is in it's infancy....

The change in size for ur lipoma can be diff slices of the MRI...angles can affect how long or large something appears so if they are diff angles (slices) then u can have a discrepancy on size. This happens with the cerebral tonsils too.

The lipoma is a collection of fatty tissues....many people get these...many have EDS....I keep coming back to that with u....so I really wonder if u have it.....it would explain a lot of ur symptoms
Avatar universal
They haven't been concerned about it because I don't have much of the symptoms. I have no flexability or anything of that nature. I maybe have a few of the symptoms. All of the surgeons and regular neuros I have seen have not thought I had it. So I am not sure.  I often wonder though if I should go somewhere, where I can have a stand up MRI done (not that I like standing for a long period, because I would probably fall). But I thought I head once that a stand up one will most likely show TC more than a laying down one (although as we discussed before it doesn't always show on an MRI).  My neck and head pain have been horrible today. I am just sick to my stomach with pain (literally).  It is just awful.  It is that way a lot. I can't stand being like this.  
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