Stroke

Posted on: Tue, Jul 7 2009 11:42 PM

Posted by: toriam2006 Posts: 9

My name is Beth, and I survived a stroke in '03 that left me disabled. I have been fighting with spasticity issues over the last several years that make my  life very difficult. I'm able to function on a basic level, caring for myself and my 4 year old son. I of course want many things for our future, and that's what led me to look more closely at ITB. I've had few neuro's suggest it but since it involved surgeryI decided to wait. I choose to walk, although it is very difficult and a little dangerous for me, I insitst on doing what I still can despite the pain and difficulty to keep my muscles intact (well as I can, again). I'm very sensitive to the side effects of any type of muscle relaxers and antieplectics (god i cant spell that still but i hope you get my drift) and the amount that I can stay alert on is not enough to control the stiffness. I have spasticity in several different areas of my body that make it difficult to  speak and breathe sometimes.  I try to play it off and have a good attatude but that runs thin. My son knows why I can't walk very well and a host of other things, and althoughI was blessed with a rather good sport for one his age, I'm sick of saying 'mommy doesn't can't shouldn't  do whatever cause my bad leg won't cooperate with my brain' . Thats not fair for either one of us. He can say big medical words no child his age should have to know.

I'm going to speak with a neurosurgeon soon todiscuss my options. Part of me is exited, and the other half is scared $hi+less. I don't really think my spasticity is severe enough for this extreme measure, but like i said, I tend to play things off. 

Tell me what you think if you will. I read praise of the device as well as horror stories, and although my mind tends to hover on the horror stories, I might just  need to get over that.

Beth

Posted on: Wed, Jul 8 2009 6:31 AM

Posted by: TriDog Posts: 2,800

Beth,

It might help if you told us what ITB is.  Not all of us speak gimp or are fluent in the medical lingo.

Before you try any kind of surgery, do you exercise regularly?  I have Cerebral Palsy and my legs can get very tight and spastic if I don't stretch and exercise almost daily.  I start every day by stretching and usually swim sometime in the day. 

Posted on: Wed, Jul 8 2009 8:34 AM

Posted by: bearlover09 Posts: 315

Beth,

I have cerebral palsy and tried Intrathecal Baclofen (ITB) therapy - Baclofen pump to treat severe spasticity.  The results vary for individuals.  My experience was more of a horror story!  Over five years ago now I tried my first baclofen pump because the oral baclofen tends to create unwelcome side effects like nausea, vomiting, drowsiness, etc...After only six weeks of having the baclofen pump, MY BODY BEGAN REJECTING THE PUMP.  The ITB (Baclofen) worked tremendously to control my spasticity, but my body just did not tolerate having a foreign object implanted inside my abdomen! So after many infections (staph), unfortunately the pump had to be removed.  I was terribly disappointed (to say the least) because the pump improved my spasticity and I walked so much better...making me much more active as well.

Six months later after my incision healed, I tried another baclofen pump placement.  I thought long and hard about this decision after going through such a nightmare with the first pump, but hey it worked so well to control my spasticity! Again, after about eight weeks later, I began rejecting the pump again.  My incision would not heal and I could literally see the pump inside my abdomen...sorry to br so graphic! The second pump caused many infections again and had to be removed.  Yes, I fought the neurosurgeon every step of the way.  But, of course I could have died if the pump had not been removed.

Two and a half years later my spasticity had worsened and I went to a prominent medical center to try my third baclofen pump within five years +.  This pump lasted about six months before my body showed signs of rejection.  Again, I fought my doctor's to keep it! My neurosurgeon told me, "If we don't get that poison out of you, YOU ARE GOING TO DIE!" By the time I consented to the surgery to remove the pump, I was suffering from septic shock.  My body was so full of infection that I looked like I was nine months pregnant with twins! After this pump was removed I spent three days in NEURO ICU with drainage tubes in my abdomen and back.  Thank God I lived through this horrifying experience.  I am grateful to have survived, but what most people cannot understand is that the baclofen pump worked so well to control my spasticity.  I walked better than I ever have.  Yet, my body just will not tolerate having it implanted.

Today, I am back taking the oral baclofen.  Years ago, I did not hear many negative stories regarding ITB therapy...But, I am proof that horror experiences do happen. I had a trial dose of the ITB and it worked great! If you have any questions, please don't hesitate to ask.  Please remember each individual experience varies.  If you decide to try the ITB therapy, I wish you the best.  Take care and God Bless You.

Trish 

Posted on: Tue, Jul 14 2009 6:49 PM

Posted by: toriam2006 Posts: 9

 Trish,

I wish I wouldn't have eaten right before I read your reply, but thank you for telling me like it is. That's what I want. 

Posted on: Thu, Jul 16 2009 8:47 PM

Posted by: bearlover09 Posts: 315

Beth,

Sorry if I was too brutal or graphic, but I wanted to be as honest as possible.  My experience with ITB was not pleasant, but each person is different.  When I tried ITB therapy, I did not hear much negativity from the ITB manufacturer (Medtronic) or from other patients.  Yet, I am proof that problems do occur.  There are risks involved in all surgical procedures, but I pressed my luck to extremes with all of the baclofen pumps I had.

Best wishes,

Trish