{"id":3029,"date":"2022-01-28T13:44:00","date_gmt":"2022-01-28T13:44:00","guid":{"rendered":"https:\/\/fusfoundation.org\/?post_type=sw_disease_condition&#038;p=3029"},"modified":"2026-03-13T10:41:40","modified_gmt":"2026-03-13T14:41:40","slug":"neurofibromatosis","status":"publish","type":"sw_disease_condition","link":"https:\/\/www.fusfoundation.org\/diseases-and-conditions\/neurofibromatosis\/","title":{"rendered":"Neurofibromatosis"},"content":{"rendered":"\n<h2 class=\"wp-block-heading\" id=\"h-focused-ultrasound-therapy\">Focused Ultrasound Therapy<\/h2>\n\n\n\n<p>Focused ultrasound is a noninvasive, therapeutic technology with the potential to improve the quality of life and decrease the cost of care for patients with neurofibromatosis. There are three major types of neurofibromatosis.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Type 1 are the most common and typically has areas of altered skin color, caf\u00e9 au lait spots, bone abnormalities or learning abnormalities.&nbsp;&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Type 2 are vestibular schwannomas, that commonly involve the nerves to the brain and commonly have hearing loss and balance problems.&nbsp;&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>The most rare form is schwannomatosis, which run near of peripheral nerves, which often create chronic pain.&nbsp;&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>This novel technology focuses beams of ultrasound energy precisely and accurately on targets deep in the body without damaging surrounding normal tissue.<\/p>\n\n\n\n<p><strong>How it Works<br><\/strong>Where the beams converge, focused ultrasound produces thermal ablation (burning of the target) that has been studies and has been recently approved by the European regulatory agency (CE Mark).\u202f\u202f\u202f&nbsp;<\/p>\n\n\n\n<p>The recent work by <strong><a href=\"https:\/\/toosonix.com\/\" target=\"_blank\" rel=\"noreferrer noopener\">Toosonix<\/a><\/strong> involves the use of a transducer device that is specifically designed to treat close to the skin, as it can be done with very low risk of having skin burns. This device has resulted in the recent CE Mark approval in Europe, so the Toosonix device is now covered for this and a variety of other medical and cosmetic indications.\u202f\u202f&nbsp;<\/p>\n\n\n\n<p><strong>Advantages<\/strong><br>The primary options for treatment of neurofibromatosis, vary based on the location of the tumors, but can include medication and invasive surgery.<\/p>\n\n\n\n<p>For certain patients, focused ultrasound could provide a noninvasive alternative to surgery with less risk of complications \u2013 such as surgical wound healing or infection \u2013 at a lower cost. It can reach the desired target without damaging surrounding tissue and is repeatable, if necessary.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-clinical-trials\">Clinical Trials<\/h2>\n\n\n\n<p>A&nbsp;<a href=\"https:\/\/clinicaltrials.gov\/ct2\/show\/NCT05119582?term=05119582&amp;draw=2&amp;rank=1\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>clinical trial<\/strong><\/a>&nbsp;for Neurofibromatosis type 1 that impacts peripheral nerves in adults has been completed in Sweden.<\/p>\n\n\n\n<p>The Foundation updates these pages regularly, but with the increasing number of clinical trials, we want to be sure that our audience has the latest information available. Therefore, we also added the website search information for the above trials. If you click <a href=\"https:\/\/clinicaltrials.gov\/search?cond=neurofibroma&amp;term=focused%20ultrasound&amp;aggFilters=status:not%20rec\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>here<\/strong><\/a>, it will take you to the latest information available from <a href=\"https:\/\/www.clinicaltrials.gov\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>https:\/\/www.clinicaltrials.gov\/<\/strong><\/a>.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-find-a-treatment-site\">Find a Treatment Site<\/h2>\n\n\n\n<p><strong><a href=\"https:\/\/www.fusfoundation.org\/the-technology\/treatment-sites\/?indication=Neurofibromatosis\" target=\"_blank\" rel=\"noreferrer noopener\">Search for a treatment center or clinical trial near you.<\/a><\/strong><\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-regulatory-approval-and-reimbursement\">Regulatory Approval and Reimbursement<\/h2>\n\n\n\n<p>Focused ultrasound treatment for neurofibromatosis is not yet approved by regulatory bodies or covered by medical insurance companies.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-notable-papers\">Notable Papers<\/h2>\n\n\n\n<p>Spiegel JL, De Maio A, Patel MV, Ungar OJ, Lai C, Truong T, Situ Y, Clapp DW, Conway SJ, Chen JM, Lin VYW, Hynynen K, O&#8217;Reilly MA, Le TN.\u00a0<a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/41444363\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Focused ultrasound-mediated drug delivery of bevacizumab in treating NF2-related\u00a0schwannomatosis\u00a0in an animal model<\/strong><\/a>. Sci Rep. 2025 Dec 24.\u00a0doi: 10.1038\/s41598-025-32031-9. PMID: 41444363\u00a0<\/p>\n\n\n\n<p>Wozniak B, Bove T, Zawada T, Calik J. <a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/37899948\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Treatment of Cutaneous Neurofibromas in Patients with Neurofibromatosis Type 1.<\/strong><\/a> Case Rep Dermatol. 2023 Oct 20;15(1):194-201. doi: 10.1159\/000534270. eCollection 2023. PMID: 37899948&nbsp;<\/p>\n\n\n\n<p>Tydings C, Yarmolenko P, Bornhorst M, Dombi E, Myseros J, Keating R, Bost J, Sharma K, Kim A.&nbsp;<a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/34604751\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Feasibility of magnetic resonance-guided high-intensity focused ultrasound treatment targeting distinct nodular lesions in neurofibromatosis type 1<\/strong><\/a>. Neurooncol Adv. 2021 Aug 18;3(1):vdab116. doi: 10.1093\/noajnl\/vdab116. eCollection 2021 Jan-Dec. PMID: 34604751<\/p>\n\n\n\n<p><strong><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/?term=%28%22focused+ultrasound%22+OR+HIFU%29+and+%22fibromatosis+or+neurofibromatosis%22&amp;sort=date\" target=\"_blank\" rel=\"noreferrer noopener\">Click here<\/a> for additional references from PubMed.<\/strong><\/p>\n","protected":false},"template":"","meta":{"_acf_changed":false,"_searchwp_excluded":"","_editorskit_title_hidden":false,"_editorskit_reading_time":1,"_editorskit_is_block_options_detached":false,"_editorskit_block_options_position":"{}","episode_type":"","audio_file":"","podmotor_file_id":"","podmotor_episode_id":"","cover_image":"","cover_image_id":"","duration":"","filesize":"","filesize_raw":"","date_recorded":"","explicit":"","block":"","itunes_episode_number":"","itunes_title":"","itunes_season_number":"","itunes_episode_type":"","_vp_format_video_url":"","_vp_image_focal_point":[],"footnotes":""},"sw_disease_condition_cat":[6],"sw_disease_condition_stage":[20],"class_list":["post-3029","sw_disease_condition","type-sw_disease_condition","status-publish","hentry","sw_disease_condition_cat-neurological"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - 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