My friend, who I will help care for post decompression is looking for information, can anyone help us.
24 years old with Spina Bifida Myleomenigicele repaired at birth. Tethered Cord diagnosed 11 years ago but not treated.
Due to the spina Bifida she is a full time wheelchair user; can't walk or stand at all. Fully independent in daily life including her self care, transfering and toiletting (intermittent Catheterization)
Set to have Chiari decompression on Jan 7 2014.
We are looking for other adults who are wheelchair bound that could provide some information for us about what to expect post surgery.
will tilt-in-space be required for the wheelchair
will headrest or higher back be needed (currently low back chair with no head rest)
how long should we expect before she is able to transfer herself safely from bed to chair or toilet
How is balance post-op; she needs excellent balance to catheterize herself on the toilet.
Shan, although my Chiari dizziness is about 90% better since decompression, the two weeks following surgery I was extremely dizzy- I think possibly from the pain meds. I don’t think I would have been able to maintain enough balance to do what your friend is going to need to do. Can you have a backup ready… Bed pan or the like just in case? There was a definite limit to how much weight she will be allowed to lift (5 lbs ?)for several weeks so she doesn’t disrupt her sutures or more importantly the dura patch that will be enclosing her brain. No bearing down or straining- so this may limit her ability to transfer herself. About your wheel chair questions, I am so sorry I just don’t know. I did a search in the key words box under Discussions tab, but didn’t turn up much. Please let us know what you find out and if there is anything else. I will be thinking about you two on the 6th and sending prayers. Please pass this along to our Chiari friend and god bless you for being such a wonderful friend.
Sorry didn't realize, I told you about my friend and not myself.
My name is Liz, I have several non Chiari related health issues. I work as a PSW/DSW/ respite provider. I do a day program for adults and a weekend program for medically fragile children, provide in and out of home respite to families and volunteer at a local pediatric palliative and hospice facility.
My friend with CM has been my best friend for over 10 years and we are now roommates.
Just thought I would update you on the decompression.
Surgery went well. Doc said everything was as expected.
Recovery as I thought is longer then anticipated by the doctor. She remains in hospital (surgery was Tues) with no immediate plans for discharge. We will meet with a social worker for discharge planing as she will need home support
Definitely talk to the hospital social workers about what your roommates options are after she is discharged. They can arrange Home Health Care or you may even want to consider a rehabilitation facility. I wish I had gone to one instead of coming straight home & I had Home Health Care. I have Spina Bifida Occulta & never knew until my CM & C Spine surgeries. I was told that CM patients with SB is usually more involved & takes longer to recover from surgery. Please let me know how she is doing. Did she have to have any C Spine surgery or any other spine issues? Your roommate is very lucky to have you as a friend. I'm sure she already knows that though. ;-)