Vocal Cord Dysfunction in desperate need of help - Rare Disorders Message Board

brittcheerdhs16 · 09-30-2003, 12:41 PM

I really need some help. I am a 17 year old girl who has a SEVERE case of VCD. Its so bad my symptoms never subside. They never come in episodes, there always present. I have a hard time breathing, I'm always short of breath, I'm always tired and worn out, I have a horrible stridor that attracts everyones attention. I just don't know how to deal with it. I mean I'm only 17 and in my senior year of highschool. The doctors have told me that they don't know how to help and that I may be like this the rest of my life. That really upsets me. I went from being a cheerleader and the loudest one on the squad to barely being able to talk over a whisper. I need some advice or help. I don't know what to do. They're giving me 14 more days before they put a tracheostomy in. I'm scared and feel alone in this. Please help me if you can.

zuzu8 · 10-02-2003, 01:28 AM

Brittcheerdhs- I preume both your vocal cords are involed....Currently, the treatment for patients with damage to both vocal cords involves a tracheotomy, which may, however, cause voice production problems and decrease protection of the lungs in an effort to improve the airway. But, if you HAVE to have a tracheotomy, recent studies show that another feasible approach to laryngeal rehabilitation may be using an electrical stimulation device to activate the reflexes of the paralyzed muscles that open the airway during breathing.

Also, The University of Pennsylvania has the PENN Center for Voice and is is doing very innovative treatment focused on opening the airways,( WITHOUT A TRACHEOTOMY), so that you can breath normally. Treatments range from laser surgery, microsurgical reinnervation, or major laryngeal reconstruction. Perhaps you are a candidate! Even if you have to travel, it certainly seems it would be worth it.

Here's their link (also thru MEDLINE's website) [url="http://216.239.57.104/search?q=cache:lYSHvP-8tZ4J:www.uphs.upenn.edu/+Pennsylvania+University+Hospital&hl=en& ie=UTF-8"]http://216.239.57.104/search?q=cache:lYSHvP-8tZ4J:www.uph s.upenn.edu/+Pennsylvania+University+Hospital&hl=en& ie=UTF-8[/url]

Also, perhaps you might want to contact the following.... I got these resources from MEDLINE's website (whose info is permitted to post here)..

American Academy of Otolaryngology-
Head and Neck Surgery (AAO-HNS)
One Prince Street
Alexandria, VA 22314
(703) 836-4444

American Speech-Language-Hearing
Association (ASHA)
10801 Rock***** Pike
Rock*****, MD 20852
Toll-Free: (800) 638-8255

National Center for Voice and
Speech (NCVS)
University of Iowa
330 WJSHC
Iowa City, IA 52242
(319) 335-6600

Voice Foundation
1721 Pine Street
Philadelphia, PA 19103
(215) 735-7999

If you can stall the tracheotomy a bit longer and research the above places for help, especially the Pennylvania option, maybe there's real hope you can avoid the tracheotomy altogether.

zuzu xx

[This message has been edited by zuzu8 (edited 10-03-2003).]