{"id":68409,"date":"2023-02-13T15:38:17","date_gmt":"2023-02-13T22:38:17","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=68409"},"modified":"2023-07-03T13:28:34","modified_gmt":"2023-07-03T19:28:34","slug":"new-anschutz-medical-campus-clinic-treatment-spontaneous-csf-leaks","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/new-anschutz-medical-campus-clinic-treatment-spontaneous-csf-leaks\/","title":{"rendered":"New Anschutz Medical Campus clinic will help patients suffering from rare spinal fluid leaks  \u00a0"},"content":{"rendered":"<div style=\"margin-top: 0px; margin-bottom: 0px;\" class=\"sharethis-inline-share-buttons\" ><\/div><figure id=\"attachment_68511\" aria-describedby=\"caption-attachment-68511\" style=\"width: 400px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-68511\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2023\/02\/13150425\/ElaineRestauri-001tiny.webp\" alt=\"After years of suffering pain caused by CSF leaks, Elaine Restauri got her life back. \" width=\"400\" height=\"546\" \/><figcaption id=\"caption-attachment-68511\" class=\"wp-caption-text\">After years of suffering in pain, Elaine Restauri was finally diagnosed with a rare condition, spontaneous cerebrospinal fluid leaks. Photos by Justin LeVett, courtesy CU School of Medicine.<\/figcaption><\/figure>\n<p>Just a few years ago, Elaine Restauri\u2019s entire life revolved around pain.<\/p>\n<p>She tried to avoid it through medications prescribed to calm the \u201cthunder\u201d inside her head.<\/p>\n<p>She tried to manage it by forsaking activities she had once loved, like horseback riding and gardening, because any motion would make her nauseous and dizzy.<\/p>\n<p>She tried to mitigate it by squeezing a day\u2019s worth of work and errands into a few morning hours, treading lightly around her home in special padded shoes to cushion physical movement.<\/p>\n<p>And she tried to keep her spirits up, despite spending much of the day in bed, as lying prone gave her a slight respite from the constant torment she experienced.<\/p>\n<p>\u201cIt was blinding. It was horrible,\u201d said the 69-year-old Elaine. \u201cThe pain was so great that you can\u2019t process things rationally in your brain. Somehow, I learned to live with it.\u201d<\/p>\n<p>Permanent relief finally came from <a href=\"https:\/\/www.uchealth.org\/provider\/andrew-callen-md\/\">Dr. Andrew Callen<\/a>, a UCHealth neuroradiologist and <a id=\"\" href=\"https:\/\/medschool.cuanschutz.edu\/radiology\/sections\/neuroradiology\/csf-leak-program\/about\" target=\"_blank\" rel=\"noopener\">pioneer in diagnosing and treating patients<\/a> with spontaneous cerebrospinal fluid (CSF) leaks.<\/p>\n<h2>Cerebrospinal fluid (CSF) protects the brain and spinal cord from injury<\/h2>\n<p>CSF is a clear fluid surrounding the brain and spinal cord and has several roles, including protecting the brain and spinal cord from injury and providing nutrients. It\u2019s contained by a thick connective tissue called the dura, the outermost layer of membrane called meninges that cushions the central nervous system.<\/p>\n<figure id=\"attachment_68512\" aria-describedby=\"caption-attachment-68512\" style=\"width: 400px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-68512\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2023\/02\/13150440\/DrCallen-PatientElaineRestauri-011tiny.webp\" alt=\"Elaine Restauri finally found permanent relief from Dr. Andrew Callen, (who she stands with here) a UCHealth neuroradiologist and pioneer in diagnosing and treating patients with spontaneous cerebrospinal fluid (CSF) leaks.\" width=\"400\" height=\"267\" \/><figcaption id=\"caption-attachment-68512\" class=\"wp-caption-text\">Elaine Restauri finally found permanent relief from Dr. Andrew Callen, a UCHealth neuroradiologist and pioneer in diagnosing and treating patients with spontaneous cerebrospinal fluid (CSF) leaks.<\/figcaption><\/figure>\n<p>People can incur CSF leaks through medical procedures such as spinal taps and epidurals, as well as through serious accidents or injury. \u00a0However, spontaneous leaks \u2014 when the fluid drains through a tiny tear or hole in the dura surrounding the brain and spinal cord without any identifiable cause \u2014 have proven challenging for both patients and the medical community.<\/p>\n<p>These spontaneous leaks can be tiny and sometimes numerous in the skull or spine. It is a rare malady, occurring in about five of every 100,000 people per year, and more women than men suffer from it.<\/p>\n<p>\u201cWe were a match made in heaven,\u201d Elaine said of Callen, who is the director of the <a id=\"\" href=\"https:\/\/medschool.cuanschutz.edu\/radiology\/sections\/neuroradiology\/csf-leak-program\/about#:~:text=The%20University%20of%20Colorado%20CSF%20Leak%20Program%20specializes,worse%20when%20upright%20and%20improved%20when%20lying%20flat.\" target=\"_blank\" rel=\"noopener\">University of Colorado CSF Leak Program.<\/a> \u201cHe knew immediately what I needed and turned my life around.\u201d<\/p>\n<p>Callen has made it his mission to help patients such as Elaine, who have spent years in a frustrating medical merry-go-round, as they often have been seen by numerous physicians and specialists, neurology clinics and emergency rooms. The nuances of CSF are complicated, and even when patients receive a positive diagnosis, they may experience setbacks and need follow-up procedures before a successful outcome.<\/p>\n<p>He is excited about a new CSF clinic opening this month at CU-Anschutz with a designated space to help treat patients with spontaneous CSF leaks. He will lead the clinic, along with a team of radiologists, neurologists, and neurosurgeons, to provide cutting-edge testing and treatment for this condition.<\/p>\n<h2><strong>Venous fistula leaks: a syndrome just discovered in 2014<\/strong><\/h2>\n<p>Callen is a national expert in treating spontaneous CSF leaks, and specifically, venous fistula leaks, in which the fluid leaks directly into a vein, making them incredibly difficult to detect through most imaging techniques. Physicians did not even discover these leaks until 2014.<\/p>\n<figure id=\"attachment_68513\" aria-describedby=\"caption-attachment-68513\" style=\"width: 350px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-68513\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2023\/02\/13150448\/DrCallen-PatientElaineRestauri-008tiny.webp\" alt=\"Dr. Callen and Elain Restauri share a hug.\" width=\"350\" height=\"525\" \/><figcaption id=\"caption-attachment-68513\" class=\"wp-caption-text\">Until recently, no one knew there was a definitive way to treat cerebrospinal fluid leaks.<\/figcaption><\/figure>\n<p>He explained that the balance of fluid and blood in the brain and spine is a delicate one \u2013 CSF patients experience an aberration that occurs when that precise communication goes awry.<\/p>\n<p>\u201cWe tend to see patients with a long and complicated history,\u201d he said. \u201cPart of the problem is that each patient might have their own set of unique symptoms. Many of them have been written off by certain clinicians as having a CSF leak because their symptoms don\u2019t fit neatly into a box.\u201d<\/p>\n<p>For people suffering from migraines and other headache issues who wonder if they might have a CSF leak, there is nearly always one telltale sign: Almost all CSF patients have \u201corthostatic\u201d symptoms, meaning they are worse when they are standing and better when they lie down. In addition to headaches, people might also experience a sense of pressure, ringing in their ears, changes in vision or hearing, dizziness, forgetfulness or personality changes.<\/p>\n<p>\u201cIt can be much more than a headache for many of these patients.\u201d Callen said. \u201cIt can be a terrible, painful and horrible ordeal. It can cause vision problems, confusion, and a whole constellation of psychological and neurological issues if it goes undiagnosed.\u201d<\/p>\n<h2><strong>Would Elaine ever get better?<\/strong><\/h2>\n<p>This had been true for Elaine.<\/p>\n<p>A mother of three who lost her husband when her youngest daughter was only six months old, she raised her family in the Pittsburgh area, making a life for herself as a graphic artist. In 2009, Elaine relocated to Colorado to be with her three daughters. She is an independent and happy woman who loved gardening and painting with watercolors and acrylics.<\/p>\n<p>Her problems began in 2012. After returning to Denver from an international flight, her head began to hurt in a way she could never have ever imagined. She initially assumed she was dehydrated, jet lagged or had a sinus infection. After six weeks of horrific head pain, she sought medical help and was given an initial diagnosis of meningitis before physicians suspected a CSF leak and used a procedure using her own blood to patch it. This worked temporarily, but she had to seek treatment again in 2019.<\/p>\n<p>By the summer of 2021, her symptoms were so awful that she spent much of her days in bed. She experienced nausea, vomiting and vertigo in addition to head pain.<\/p>\n<p>Her daughter, <a href=\"https:\/\/www.uchealth.org\/provider\/nicole-restauri-md-diagnostic-radiology\/\">Dr. Nicole Restauri<\/a>, a UCHealth thoracic radiologist and a colleague of Callen, was determined to get her help. She had watched her mother physically and mentally decline from a vibrant and independent woman who had raised three daughters alone to a shadow of her former self.<\/p>\n<p>\u201cShe had been suffering for years,\u201d said Nicole. \u201cUntil recently, no one knew there was a definitive way to treat it.\u201d<\/p>\n<p>After Elaine met with Callen, he performed an MRI of her brain and entire spine. The findings of those studies suggested that she was suffering from a CSF-venous fistula, where her CSF was abnormally leaking into a vein. It\u2019s not always known why these leaks occur \u2013 a leading hypothesis for creating CSF-venous fistulas is damage to a structure called an arachnoid granulation. In other non-fistula leaks, perhaps some sort of \u201cmicrotrauma\u201d occurs, causing a hole in the dura.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-68514 alignright\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2023\/02\/13150504\/AndrewCallen-Procedure-004eee.webp\" alt=\"\" width=\"400\" height=\"600\" \/>\u201cWhen leaking slowly, they can be particularly hard to detect,\u2019\u2019 he said.<\/p>\n<p>\u201cThe understanding of these spontaneous leaks has exploded over the past two decades, and our work with venous fistula leaks is even more new,\u201d he said.<\/p>\n<p>Despite Nicole working in the radiology field, even she is amazed at the technology that detected her mother\u2019s CSF leaks \u2013 something she wants more people to know about so they, too, can get help.<\/p>\n<p>\u201cTo be honest, I didn\u2019t even know how specific and precise the treatment could be,\u201d she said. This type of procedure illustrates the power of how advanced imaging can be used to treat patients, she said.<\/p>\n<p>For Elaine, the continual loss of CSF fluid had caused her brain to actually sag into the cradle of her skull since it lacked the proper amount of fluid to help it float properly.<\/p>\n<p>Callen was able to successfully treat Elaine through specialized testing called dynamic myelography to diagnose her condition. Through myelography, a dye is used in imaging to look for problems in the spinal canal while radiologists maneuver the patient into various positions on the exam table to try and find the leak. When one is found, he can patch it with a patient\u2019s own blood drawn through an IV, then injected into the leak, or with a substance called fibrin glue (which includes strong clotting components of blood), that creates a super clotting mixture, he said.<\/p>\n<p>In more extreme cases, when neither a blood patch nor fibrin glue will work, he will refer a patient for surgery where they will have the vein clipped or embolized to stop the leak.<\/p>\n<p>Trained at University of California San Francisco School of Medicine, one of the initial hospitals to do spontaneous CSF research, he saw firsthand how a proper diagnosis could be life-changing. He recalls one of the first patients he treated who was finally properly diagnosed with spontaneous CSF had been misdiagnosed for years \u2013 with ALS, also known as Lou Gehrig\u2019s Disease.<\/p>\n<p>\u201cThese patients were told it\u2019s all in their head when really, it\u2019s all in their spine,\u201d he said.<\/p>\n<h2><strong>After years of pain, finally, relief from CSF leaks and a return to normal<\/strong><\/h2>\n<p>Attaining her equilibrium in body and spirit after what seemed like an eternity of imbalance can be challenging for patients, and Elaine is no exception. It\u2019s common for them to produce too much CSF after their leak is sealed, which she also experienced, although the fluid production quickly corrected itself after a few weeks.<\/p>\n<p>In addition, the years that Elaine lived with CSF caused some permanent damage to parts of her body: Her voice can be raspy because of nerve damage to her vocal cords, and she suffers from a <a href=\"https:\/\/www.uchealth.org\/diseases-conditions\/pinched-nerve\/\">pinched nerve<\/a> in her spinal cord that affects her right shoulder and arm. From the many years of experiencing vertigo, she is sometimes off balance and can veer toward the left, into a wall, if she\u2019s not careful. But these are small ailments compared to what she had been dealing with.<\/p>\n<p>\u201cI\u2019m otherwise in great shape,\u201d she said. \u201cWhen you have a CSF leak, it\u2019s amazing how you adapt. But now, I can move and do what I want to do,\u201d Elaine said. \u201cWhen this happens to your head and body your senses become so heightened to pain, even eating a particular food with a certain chemical in it will trigger pain in your head.\u201d<\/p>\n<p>Trying to make up for lost time, she\u2019s been busy traveling, gardening, working on her art and even thinking about getting back on a horse.<\/p>\n<p>\u201cI feel so much better. I feel normal,\u201d she said, adding that she has been headache free for a year and a half.<\/p>\n<p>For Callen, seeing patients transform into the person they once were motivates him and his colleagues.<\/p>\n<p>\u201cIt\u2019s been very rewarding and incredibly satisfying to help these patients \u2013 it\u2019s a big part of the excitement around this research and clinic,\u201d he said.<\/p>\n<p>For Elaine\u2019s daughter, seeing her mom blossom and bloom again, like the flowers in her beloved garden, is priceless.<\/p>\n<p>\u201cIt saved her. It gave her back her life.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Just a few years ago, Elaine Restauri\u2019s entire life revolved around pain. She tried to avoid it through medications prescribed to calm the \u201cthunder\u201d inside her head. She tried to manage it by forsaking activities she had once loved, like horseback riding and gardening, because any motion would make her nauseous and dizzy. She tried [&hellip;]<\/p>\n","protected":false},"author":2357,"featured_media":68512,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[5],"tags":[574,184,65,1242],"class_list":["post-68409","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-back-neck-and-spine-care","tag-neurology","tag-pain-care-and-management","tag-radiology"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.4 (Yoast SEO 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