Shunt CT
After the hand appointment we went and had a head CT series done to try and check on Ashleigh's shunt. She has seemed more sleepy and not as quick with her movements the past few weeks. In the past these very subtle changes have been a precursor to a shunt failure which requires a shunt replacement and inevitably a major setback in any gains she has made.
(A tip for families when getting CT's or x-rays. Ask the technicians for a copy while they are printing the one for the doctors. We always have success getting a copy and this will allow you to build a set that you can have to take with you to the ER if necessary.)
This is Ashleigh's fourth shunt in six years. Some people have shunts that work trouble free for years and years. She has had no such luck. Ashleigh's problems have mainly been with the shunt tube clogging where the shunt drains in the abdomen. The first failure was the worst. We could not convince our neurologist that there was a problem. We did talk him into checking with the neurosurgeon. The neurosurgeon said no, shunts do not partially fail or slowly fail, they are either on or off. And, if hers was off there would be rapid, significant symptoms leading to coma. Meanwhile we saw Ashleigh getting more lethargic, less responsive, and losing some of her movments.
This was the last straw for this doctor and his pompous, negative attitude. We called a doctor who consulted on Ashleigh when she was in rehab in Cincinnati. Dr. Van Loveren stunned my wife and I when he suggested we test the shunt. There is a test? Why hadn't our other doctors suggested such a test? A radioactive dye was injected into the shunt and a series of x-rays taken to see how long it took the dye to pass through the shunt and its tubing and into the abdomen. In her case, the dye never came out of the tube. A surgery was scheduled and her first shunt revision took place.
Dr. Harry van Loveren was the total opposite of the neurosurgeon we had been dealing with. He would walk into the room and pull up a chair and ask a ton of questions and wouldn't leave until all of our questions were answered. He talked to Ashleigh directly and often would hold her hand while we talked. This from a well-known doctor who often had other doctors from around the world shadowing him and traveled extensively yet when he was in the room with you, you felt you had his total attention and as much time as needed. He is as good of a person as he is skillful as a doctor.
We were very disappointed when he moved to Florida but we wish him continued success. Ashleigh still hopes to hold him to his offer to take her tandem skydiving with him one day. She would go tomorrow if she could.
Tendon Lengthening Check-Up
Ashleigh had a check-up on Wednesday with the surgeon who did the tendon lengthening on her left arm . Dr. Peter Stern, an excellent orthopedic surgeon with the Hand Surgery Specialists in Cincinnati checked Ashleigh and thought she was doing very well.
He sent us across the hall to the hand therpay area where her hand therapist Bob Schneider made a set of individual finger braces to try to help correct some hyperextension Ashleigh has on two of her fingers. Bob was kind enough to work her in even though we did not have an appointment.
I have attached a couple of pictures to show the dramatic change the surgery has had.
In the waiting room, we asked Ashleigh if she wanted us to tell Dr. Stern about her talking and she signed yes and then used some signs to tell us she wanted to speak to him. So, the next time she spoke we tried to tape her message to Dr. Stern. The files below are not her best voicing but if you listen closely you can hear her say "Hi to Dr. Stern".
AshTalk7 AshTalk6
Ashleigh's Voice
Ashleigh has not been able to speak since her accident over six years ago. She does not even make sounds or noises. A video endoscope showed that although the vocal cords did not close all of the way they were not paralyzed.
An odd thing has been happening that so far no one has been able to help us with. Sometimes, typically after Ashleigh falls asleep for a while, she will awake with a start. Her eyes are wide open and she is very alert. If you ask her questions at that time she can speak! The answers to questions are always appropriate and she also offers spontaneous speech.
We have asked every doctor and therapist we come in contact with and no one has ever heard of this. We are trying to figure out what exactly is happening during these periods so we can try to encourage it more. Is it better breathing, relaxed tone, better initiation? If anyone has any ideas please email us at help@tbirecovery.org
These speech periods only last a very short time. It seems it just gets harder and harder for her until she can't speak anymore. A few times she was able to speak long enough that we called people and she spoke with them. Needless to say they were thrilled. We have tried to record it numerous times but at first we are so fascinated and try to keep her talking that we don't grab the equipment in time. We tried to record it with a tape recorder and it ate the tape. We tried with a video recorder and we were always too late.
We finally have captured a few instances with a microphone attached to our computer. These are not really very good instances as she wasn't as clear as she can be but at least we have it recorded. Also, the first words are always the best and it takes us a while to pull it together so we usually miss recording those. Just a note, at times in the recording we ask a question and you may not hear a response. Typically she is mouthing a response but does not seem to have the breath support to vocalize it. Also some of the louder responses are a little garbled because the dummy with microphone (me) has the microphone too close to her mouth.
Below are links to the audio clips. The first is from a few days ago and the second and third are both from yesterday. If anyone has any insight please email or call us, thanks.
http://www.tbirecovery.org/ashblog/AshTalk1.wav
http://www.tbirecovery.org/ashblog/ashtalk4.wav
http://www.tbirecovery.org/ashblog/AshTalk5.wav
