Connective Issues Winter 2018

MEDICAL INFORMATION

TARLOV CYSTS AND MARFAN SYNDROME Tarlov cysts may be a cause of pain in people with Marfan syndrome.

relief. Narcotic pain relievers do not help and an individual may build up a dependency that actually makes the pain seem worse. TENS, transcutaneous electrical nerve stimulation, seems to be an effective way to work with Tarlov cysts. A permanently implanted system actually delivers elec- trical stimulation to the nerves for pain control. The electrodes are surgically implanted in the lower back and con- trolled by an electronic device. The device has various settings to control pulsations that work with differ- ent pain levels. Patients can participate in normal activities including swimming, walking and other exercises. Other treatments include injecting the cyst with fibrin glue or even removal of the cyst.

LORRAINE ATKINS AND HER DAUGHTER, ALICIA ATKINS LAZENBY

By Lorraine Atkins

Surgery Surgery involving Tarlov cysts removal is very delicate and very few neurosurgeons have experience with it. The risk of complications is great. More research is underway. Case study My daughter, Alicia Atkins Lazenby, has experienced Tarlov cysts in connection with Marfan syndrome. Alicia was diag- nosed with Marfan in 1984 at the age of four at Children’s Orthopedic Hospital in Seattle. She has had two heart surgeries and several other surgeries. The permanent TENS implant has helped her work with the Tarlov cysts. She participates in water aerobics and other exercises programs. Finding the right neurologist in the Seattle area required research. She tried physical therapy, corticosteroid treatment, and pain management therapy prior to the implant. As recently as 2016, Alicia consulted with a neurosurgeon who said that neurosurgery was not an option at the time. People with Marfan syndrome who experience pain associ- ated with the Tarlov cyst condition are encouraged to find neurologists who are familiar with the TENS implant. This article was written and researched by Lorraine Atkins, of Seattle, who is a member of the Marfan Writing Group, with assistance from her daughter, Alicia Helene Atkins Lazenby. It was reviewed by Dr. Paul Sponseller, director of pediatric orthopedics at Johns Hopkins Hospital and a member of the Foundation’s Professional Advisory Board.

Tarlov cysts are fluid-filled sacs in the lower lumbar region at the base of the spine. Pain may be caused by lumbar sacral nerve compression. The perineural cyst comes into contact with the nerves in this region. The contact can cause severe pain in the lower back, buttocks and legs. Tarlov cysts, also referred to as sacral menigeal cysts, are expansions of the dural lining of the spine. They are variations of dural ectasia which is a weakening of the dural connective tissue. Tarlov symptoms may include:

• Sciatica-like nerve pain • Urinary tract problems • Headaches • Loss of muscle control

However, it is important to know that the cysts may cause no problems, and the symptoms above may have many other causes. Finally, the pressure of the nerves in the lower back can also cause bone deterioration. Treatment Treating this condition involves physical therapy and pain management. It will always be difficult to manage a sudden searing pain along the back and legs when a person is sitting or standing. It wears people down emotionally. Medications used include the non-steroid anti-inflammatory drugs (NSAID), such as ibuprofen. These provide temporary

12 Marfan.org