Back in April our dear friend Toni Hansen was taken to the ER after collapsing at home. She spent several months dealing with extreme vertigo that would last for weeks and intense pressure and pain anytime she sat or stood up, thus confining her to bed and unable to participate in most aspects of her former life.
After a dozen trips to the ER, two hospital stays, spinal taps, CT scans, and MRIs, and several months of agony, she was finally diagnosed with a "spontaneous cerebrospinal fluid leak." It was not a typical leak, however, and very few surgeons have much experience with this condition.
Last month Toni was flown via medical transport to Los Angeles to see one of the top specialists in the world. Upon arrival it was revealed that her cerebrospinal fluid level was so low that they could not even get a reading. This fluid protects your brain and spinal cord. By this point Toni had gone nearly three months without that protection.
Actor George Clooney suffered from a CSF leak in 2005. To understand how debilitating this condition is, Clooney even said he thought about suicide due to the intense pain. The actor shared "I was lying in a hospital bed with an IV in my arm, unable to move, having these headaches where it feels like you’re having a stroke, and for a short three-week period, I started to think, 'I may have to do something drastic about this.... but I never thought I’d get there. See, I was in a place where I was trying to figure out how to survive." He thought, "I can’t exist like this. I can’t actually live." Toni is now going into her fourth month... She told me, "It is not something I can ever describe to someone who has never lived it."
Toni sought help at the same hospital as Clooney: Cedars-Sinai in LA. The surgeon could not locate the leak on imaging, so he targeted the most likely source: a large spinal cyst between her shoulder blades. The leak was found and was "substantial," according to the surgeon.
To learn more about this condition, go to http://jama.jamanetwork.com/article.aspx?articleid=202849&quizId=2255&atab=8
For more details from Toni herself, please read the following: http://simona78.wix.com/tonihansen
Toni's surgery was in mid-July, but her recovery has been slow. She has had periods of extreme high pressure (intracranial hypertension, resulting from closure of the major leak). The risk of a secondary leak remains high for one year post-op due to the specific type of leak she had due in part to this increase in pressure. Testing is invasive, requiring additional dural punctures, so currently they are taking a "wait and see" approach until September to give her body a chance to heal.
While Toni or her family have not asked for any help... As our friend we don't want her or her family to worry about anything other than her recovery.
Should your generosity exceed Toni's needs, any excess funds will be used by Toni to establish a charitable fund to assist other victims of this condition.
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