Hello all! We are pleased to bring you our 24th Schwannoma Case Study - this one the story our friend Vicki Rushby and her experience with pre-sacral Schwannoma. This was one kind of Schwannoma we had not previously had a case study for, and so we appreciate our friend Vicki who volunteered to tell a bit of her story to us so that others with this kind of Schwannoma can learn from it. We wish her the best in her continued recovery - and we hope this case study is of assistance to those who need it! - Neil
__________________________________________________________
1) How old were you at the time of your diagnosis?
Diagnosed last June at 57 years old.
2) Do you have any history of Schwannomas in your family?
No family history that we know of.
3) Where was your Schwannoma located? And what were the
symptoms that lead to your diagnosis?
I had a 14cm pre sacral schwannoma attached also to my
bowel,bladder and nerves in the top of my right leg.
I had a quite a few symptoms one particular one was I couldnt
lay on my left side or if I layed on my back I would get incredible pain in my
rib area.
Also I was constantly getting bad reflux and chest pain but if I
had ECGs or bloods for cardiac enzymes they would all be normal (all stopped
after surgery).
If I tried to lift my lower body weight onto, for example, a boat platform
I just couldnt seem to get that part of my body up like it was too heavy.
I would have sudden severe nausea for a long time then
eventually be sick and then feel much better. My appetite was all over the place
such as be hungry and start to eat then after a mouthful just couldnt eat
anymore. Sudden urgency to use my bowel or bladder. Aching in my tail bone when resting.
Not long before I was diagnosed I lost another 6kgs after
loosing 10 kgs for the year before and became incontinent during the night of
faeces in my sleep and have no bowel control during the morning and getting
drop foot and nearly falling over.
4) Could you describe, in whatever detail possible, what kind
of surgical treatment was performed on your Schwannoma, and if you would
consider it successful? (Or describe what you may know about the surgery that
may yet be performed, if you haven't been operated on yet)
After much discussion and planning by my colorectal surgeon and
after a long surgery and recovery he removed the schwannoma completely in
late July 2015 through the abdomen but left part of the sac of the tumor to
preserve the nerves in the leg, bladder, and bowel.
Otherwise it was not looking good post surgery with a very big
big chance I would have a permanent catheter,colostomy and drop foot. I was very very happy with the results from surgery and feel it
was very successful.
5) Having gone through the experience, what do you think are
the most critical questions for someone to ask their doctor about
surgery and treatment of this kind of schwannoma?
Definitely follow the list "What to ask the Doctor?"
and write down questions because you get into the Doctor and forget important
things. and there is so much going through your head at the time.
What to expect after surgery such as recovery time.
Whether you need follow up scans yearly.
Who to speak too if you dont have a designated person following
you up pre and post surgery if you have any problems or questions.
Ask the Doctor to explain in terms you understand if they dont
keep asking.
Recovery was good and felt great for a change.
Try and keep as positive as you can including thinking that you
can do this surgery and it will be better.
Pain was manageable as I stuck to the allowed doses for the
first couple of weeks then I was finding I needed pain management first thing
in the morning and the evening for a couple more weeks but changed to
panadol for that which worked well.
It took about 6 months for the bowel to settle from surgery.
The physio got me up the very next morning walking after
surgery the afternoon before and although it hurt I tried to straighten as much
as possible and kept the walking up gradually increasing the distance when I was
ready.
7) Are you able to do all or most the things you did
before? (Also feel free to describe your abilities even if you are still living
with the tumor or tumors)
Something I can do a lot better is lifting my lower body weight
to get up onto things like the bed to get things off ther top of the cupboard,
ladders or several steps, boats etc and not dragging my lower body around.
Much better control of my bowel and bladder.
But I do find if you dont pace yourself you can get very tired and
it takes a little bit to pick up but as it was a major surgery I give myself 12
months at least to hopefully completely bounce back.
_____________________________________________________
If you have a similar or same kind of Schwannoma and you would like to speak to Vicki by email, her email address is: vianneru
