Discussions By Condition: I cannot get a diagnosis.

Chiari 1 Malformation - post vertebroplasty

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • March 23, 2009
  • 01:28 AM

Hi...

Last September I suffered compression fractures of T11-T12. In mid-December I had vertebroplasty using PMMA bone cement.

In the hours immediately following the procedure, I was doing well and discharged home.

I went to bed that night, feeling okay, considering...but woke up the next day (approximately 7 hours later) with EXTREME head pain.

My husband immediately reported this to the surgeon's office, and was told that he should take me to the ER if "it got worse".

I had always thought I knew what a "migraine" was, but the pain I experienced in my head was mind-boggling and intense to say the least.

The defining part of the headache was that it would go away if I laid down, but got measurably and instantaneously worse if I sat up, tried to have a BM or even start a stream of urine. I was also hyper sensitive to both light and sound.

Long story short, the surgeon's office never did anything for me, and 4 days post operatively, my husband phoned our general practitioner, who stayed on the phone and had my husband perform a virtual physical exam on me...of which he deemed I was stable. It was his impression at the time that I was suffering a CSF leak from the procedure itself, and based on 4 days having already passed, he felt that I would be okay to continue with bed rest (as opposed to a blood patch) until activity was tolerated.

The headache lasted for 3 entire weeks, and I noticed during this time that it did get worse when there were barometric changes as well. I literally stayed in bed for 3 weeks other than to use the restroom, etc. My husband served me meals in bed as well - I literally didn't get out of bed.

When the acute headache dissipated, I developed a rather snotty and very stuffy nose...thought it was a bug.

Anyhow, I finally went to see my general practitioner after those 3 weeks (because the surgeon didn't want to see me until 6 weeks post op, and told my husband what ever was happening to me had nothing to do with surgery)...My MD ordered an MRI, the results of which showed the 4-5mm Chiari Malformation (not present on previous MRI's of brain). And moderate to severe Pansinusitis.

Prior to seeing my MD, I asked the surgeon's office to fax over my operative report so my MD would have a copy at my appointment. The operative report clearly states that the PMMA bone cement spilled in to the "epidural space" at both the T11-T12 levels, but the surgeon failed to mention that when he spoke to my husband..!

So, with the knowledge of newly formed CM on the MRI, the previous symptoms those 3 weeks immediately post surgery, in addition to the pansinusitis, my general MD hit me with a week of solumedrol, and almost immediately my head cleared up, but with that came an awful case of tinnitus..!

At times, the tinnitus is so maddening that I would wish for my head pain back (but not quite)...I know that tinnitus in a common symptom with the CM, but it's driving me crazy.

Other than occasional headache when the weather changes, and infrequent neck aches, I do not have any other classic CM signs & symptoms.

When the tinnitus revealed itself, I would almost describe it as a FT high pitched ringing, but last few days it seems as though my right ear has a low buzzing, or hypersensitivity to low frequency. It's just frustrating. I have zero pain.

I went to see a neurologist a few weeks ago and was supposed to go back to see him again, until his medical assistant phoned me a few days after the MRI came back stating the results were "normal". I don't know about anyone else, but when a patient presents themselves with extreme head pain and the MRI shows CM, there is nothing 'normal' about it.

From my studies of CM the past few months, I am aware that some 4-5mm CM patients may be completely without symptoms, but for those who do, shouldn't the neurologist acknowledge and treat them?

I was so angry that I canceled my follow up appointment with the neurologist, and await a referral to another. Unfortunately, my MD, however concerned he is about my condition, is learning right alongside me because he is the only one who has given a darn about helping me feel better.

Along the way, my MD suggested that the massive head pain, stuffy nose and pain were quite possibly a leak, or perhaps even an allergic reaction to the PMMA bone cement. I responded very well to the steroids...we haven't explored it too much since then, but I am also curious if you think this possibility exists?

I guess you could say I am looking for comments about the procedure, the symptoms, the possibility of Pansinusitis=Allergy relationship, and whether it's possible to ever rid of tinnitus related to CM.

I am beside myself with anxieties that this is what I have for the rest of my life with no hope of a full recovery.

On top of everything else, I still have back pain. Oddly, it's become the least of my concerns.

Also, have you ever heard of anyone developing CM after surgery this way? The general MD believes that had I had an MRI done in those first 3 weeks that it would likely have shown hydrocephalus (later reabsorbed by my own tissues), responsible for ultimately squishing my brain down in to the spinal column...would you agree??

Thoughts, comments, support, help?

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1 Replies:

  • Hi JLJ- I work for an orthopedic spine surgeon group and I have no idea how you could have possibly developed a chiari malformation from the vertebroplasty done at T11 and T12, the cement leak could have caused pressure in your spinal cord and on your brain and could have caused the headaches and other problems but I don't think the chiari could have come from the surgery. However how your surgeon treated you after your surgery after your procedure is completely wrong. Anytime any of our patients call with surgery complications in the 1-2 months following surgery we either get them into out clinic or our ER and get them seen, that is good medical practice. You should to consult with a medical malpractice lawyer and see what can be done for you. Have you had your 6 week follow up with the surgeon yet? What happened there? If you are still having the headaches you need to get into a neurosurgeon, not a neurologist, there is a website somewhere that lists MDs that specialize in chiaris. I have never heard of a chiari reabsorbing into the brain... but then again I don't know a whole lot about them so don't quote me on that. Do some research and find a surgeon who specializes in chiaris and go there even if it is a few hours away from you, you need a good doctor who knows what they are doing if you do indeed have a chiari.
    SpineGirl 64 Replies Flag this Response
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