Well, unfortunately, I am blogging today about news that was NOT what we were hoping for. The Baclofen Pump Lumbar Injection (test) was not successful.
"What does that mean?"
Well, the results were minimally positive. After 6 hours, dad's toes straightened out some and there was a few degrees bend in his left knee, but that was about it. When doing a Baclofen pump test, there must be a more significant 'positive result' than what he received to justify the inplanting of a pump.
"So, what does that mean!?"
We will head to UAB to visit with dad's neurologist in mid-August and have a serious discussion about DBS. The major concern right now for the DBS option is that getting relief in Dystonia patients that are only affected in their feet and legs with DBS is very unsure. We will see!
Until then, please continue to share your story, my dad's story, or just share what you know about this horrible disorder! Awareness is key and we are hoping for relief soon!
Thursday, July 25, 2013
Thursday, July 11, 2013
change of plans and hope is in the air!
Well to spare you all the details that discredit certain individuals, I will just jump to the body of this blog. We have had a slight detour on our journey. The new decision now is to do a Baclofen Pump Test Injection to try and help with the spasticity that my dad experiences. His Dystonia is slightly different from 'typical' (though no 2 cases are alike) Dystonia. He experiences more muscle spasms than constant and continual contractions. Dad's legs aren't always drawn unless he is in the middle of a Dystonic Storm. Even during the storms, there seems to be periods of relief, and then the muscles will spasm, creating excruciating pain. It is still quite concentrated in his lower extremeties and only during extreme spasms does it go up into the extreme lower back area. Because of this spasticity, we all have great hope for the pump to relieve that.
"What is a Baclofen Pump?" and "What does it do?" you ask! Well, what great questions! ~*disclaimer - i am not medically trained, but speak 'simple English' and try to explain procedures and equipment how it makes sense to me*~ The best way i know how to describe this is to compare it to a combination of an insulin pump (for a diabetic) and an epidural. The Baclofen pump, like an insulin pump, is permanently inserted into your body and continually 'pumps' or drips the medication Baclofen in to the lower lumbar of the spine as an epidural.
Now, my very next question was and from others usually is, how will a pump into the spinal column help correct a neurological disorder that takes place in the brain? Again, very good question! Go on a journey with me through the 'misfiring' of Dystonia. In our brain, we create millions of signals a minute that travel from our brain, down our spinal cord, exit the spinal cord at the nerves, and the nerves send the message to our muscles to actually DO something. When an individual is suffering from Dystonia, the brain, itself, is misfiring, therefore sending bogus messages to the muscles to contract or spasm at infrequent and spontaneous times creating spastic movements or permanently drawn or 'cramped' muscles that never release or relax. When one takes botox injections (my dad took these for years), it essentially turns the muscles off that are receiving the wrong signals, disallowing them to cramp or contract or even spasm as the brain is incorrectly telling them to. After a while, though, the effects of Botox can no longer be effective in certain individuals.
Typically, the next step if you have more spasticity to your Dystonia is a Baclofen Pump. What this does, is the medication Baclofen (a medication that is used to treat spasticity) is constantly 'dripped' into the spinal column at the specific vertebrate that the affected nerves are at. So as in my dad's case, the baclofen will be placed in the lower lumbar where the nerves that send signals to the legs exits the spine. When this medication is dripped onto those nerves, in a similar way that Botox works, the bogus signals that are sent to the legs will be neutralized, not allowing the signal to go to the muscles telling them to contract erratically. They permanently attach the tubing to the spine and the pump is inserted into a fatty region, usually in the left or right lower abdomen.
Now as in everything with Dystonia, nothing is the same, alike, 'typical', etc. so we are actually unsure if this will even work. So on the 23rd of this month, we go for a 'test shot' (my terminology - not a medical term!!!) where they just do a single injection into the spinal cord and you lay there flat for about 3 hours and hope, AND PRAY that results show up. This is a procedure that immediate - or fairly quick - results are seen - so we will know that day within a few hours if this will be an answer for my dad - you will all know soon!!! FINGERS CROSSED, PRAYERS LIFTED UP, and HOPE IS IN THE AIR!!!!!!!!!! My dad is claiming Psalm 121:1-2 "I lift up my eyes to the mountains - where does my help come from? My help comes from the Lord, the Maker of heaven and earth."
"What is a Baclofen Pump?" and "What does it do?" you ask! Well, what great questions! ~*disclaimer - i am not medically trained, but speak 'simple English' and try to explain procedures and equipment how it makes sense to me*~ The best way i know how to describe this is to compare it to a combination of an insulin pump (for a diabetic) and an epidural. The Baclofen pump, like an insulin pump, is permanently inserted into your body and continually 'pumps' or drips the medication Baclofen in to the lower lumbar of the spine as an epidural.
 |
| baclofen pump diagram I found on internet |
Typically, the next step if you have more spasticity to your Dystonia is a Baclofen Pump. What this does, is the medication Baclofen (a medication that is used to treat spasticity) is constantly 'dripped' into the spinal column at the specific vertebrate that the affected nerves are at. So as in my dad's case, the baclofen will be placed in the lower lumbar where the nerves that send signals to the legs exits the spine. When this medication is dripped onto those nerves, in a similar way that Botox works, the bogus signals that are sent to the legs will be neutralized, not allowing the signal to go to the muscles telling them to contract erratically. They permanently attach the tubing to the spine and the pump is inserted into a fatty region, usually in the left or right lower abdomen.
Now as in everything with Dystonia, nothing is the same, alike, 'typical', etc. so we are actually unsure if this will even work. So on the 23rd of this month, we go for a 'test shot' (my terminology - not a medical term!!!) where they just do a single injection into the spinal cord and you lay there flat for about 3 hours and hope, AND PRAY that results show up. This is a procedure that immediate - or fairly quick - results are seen - so we will know that day within a few hours if this will be an answer for my dad - you will all know soon!!! FINGERS CROSSED, PRAYERS LIFTED UP, and HOPE IS IN THE AIR!!!!!!!!!! My dad is claiming Psalm 121:1-2 "I lift up my eyes to the mountains - where does my help come from? My help comes from the Lord, the Maker of heaven and earth."
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