Help Toni get better
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.
Toni, wishing you a speedy recovery! Just got off the phone with Jeanette and she and the gang are rallying the troops on your behalf :) Our hearts and prayers are with you and your beautiful family. Love from, Ben and Jean McDowell
Thank you everyone for the wonderful support. These ladies gave us quite a great surprise with this site! I did fly via air medic to Cedars Sinai in Los Angeles three weeks ago. We will be appealing with insurance who claimed I could get treatment closer and that it was unnecessary. When they tested me upon arrival, however, my cerebrospinal fluid was so low that a pressure reading did not even register. By that point I could no longer sit at all and barely stand. I had surgery just over two weeks ago by one of the only neurosurgeons in the country with experience to treat my condition (Mayo clinic could, but could not see me until the end of Swptember). I have cysts on my spinal column that the specialist, Dr Wouter Schievink, says I was born with. In most active patients these tend to rupture between ages 35-45 "spontaneously." Less invasive procedures such as blood patches simply do not work in many cases. The leak itself did not show on imaging despite radiologists at Ohio State being positive it did. What they saw instead were the cysts. The surgeon went in at that point and they were covered in cerebrospinal fluid. He used aneurysm clips to seal the leak. He noted that my dura, which is the connective tissue protecting my spinal column, is very thin and i have additional cysts not currentky leaking that may cause problems and hence the success rate over one year goes from 95% to 80%. I spent 10 very agonizing days in the hospital post-op but made it home Wedneaday. I am suffering from rebound high pressure. This happens because the blood vessels in my bran expanded to full in the space lost by the cerebrospinal fluid while my body upped production to try to compensate for the leak. So now I have too much fluid in a diminished space. It's quite painful and I'm on medication to lower the pressure, but its still very difficult. I'm finally able to walk a bit and have even had lunch out with friends, but the dr said to expect it to take another month or so to see how I'm doing as my body gets back into sync and the neurological problems caused by this condition have time to resolve (the Parkinsonism almost has already!) After three months flat I also have to get my body used to used just raising my head not to mention walking and rebuilding muscle and lung and heart strength. Whew... This post is getting long but the great news is that the dr says my prognosis looks much better than he anticipated going in and he thinks a full recovery without recurrence is quite likely! I just wish so much of the brain recovery process didn't feel so much like when I was leaking, but he says I will have swings for a few weeks, so for now I'm taking things slow and just getting as many toddler snuggles as possible. Thank you everyone for your support to me and my family throughout this battle. I have truly wonderful friends and feel extremely blessed to have you in my life... To learn more about my consition, a new site has just been launched by fellow "leakers" at www.spinalcsfleaks.org. While most are not as severe as my case, I meet new women every week who are going through the same thing and I will be doing everything I can to help raise awareness for earlier detection and treatment. I went for two months without a proper diagnosis at one of the best neurology centers in the region. Earlier treatment means a much better success rate with much fewer complications, many of which are life-threatening...
Angel Flights should be able to help you and your family out with free transportation to the hospital and back for the surgery. I will talk with Jeanette about this possibility...
Just feel better.
Just feel better.
Keeping you and your family and the little one in my thoughts and Prayers Toni ~ My heart is always with you, and I pray Wisdom and Healing Hands to bring you through this with excellent guided hands of your surgeons. You WILL get better. Love you ~