Atypical Multiple Sclerosis

Tomorrow, July 28, I undergo surgery to implant the baclofen pump (ITB Pump-Intrathecal baclofen Therapy Pump). Medtronic makes the pump; click Medtronic to learn more about the pump. I will on a short hiatus while I go into rehab. Then I’ll be back blogging about my experiences. Hopefully, someone else that has to go through the same surgery can read about this and get a real world understanding of what happens.

I undergo surgery around 7:30AM tomorrow. The procedure takes about 90 minutes. A small incision is made just below the skin into the layer of fat at waist level on either right or left side. The pump is wrapped in cloth and inserted into the incision. The another smaller incision is made in the lumbar region of the back at the spine. A small catheter is tunneled from the pump to the lumbar region and inserted into the intrathecal space of the spine.  I am stitched up and recovery begins while liquid baclofen begins it drip into the spine.

Afterwards I need to lay flat for 24 hours to avoid a massive headache as this procedure is like one mega lumbar puncture. Then I am whisked away to the rehab hospital for four to seven days. Probably seven days.

Why rehab? Well, mainly to wean me off the oral baclofen. Additionally, rehab will help to strengthen muscles that are currently spastic, teach me how to use muscles the correct way again. You know, things like that. My oral baclofen will be reduced from 110mg a day to 80mg a day. Rehab will adjust the pump will continuing to reduce the oral baclofen.

Within seven days I will be released, sent home and hopefully feeling much better than I do right now. I am hoping the painful spasms will end so I can stop taking pain pills. Potentially, fatigue will lessen as 110mg daily of baclofen increases fatigue.

I am both eager to have an ITB pump and work at rehab. Having a positive outlook has been an advantage for me through Atypical Mulitple Sclerosis, most likely Primary Progressive Multiple Sclerosis. I know I have a choice in my outlook. I do not expect certain things to happen so I am usually pretty happy most of the time. 

I went through the ‘Why Me’ phase years ago. It wasn’t helpful. I came to the conclusion why not me. What made me so special that I actually thought I was above getting sick, hurt, etc. Because I am surrounded by people who care, love and support me I am glad that I have Multiple Sclerosis. Sounds weird?!? I guess it is, but I hope that because I have MS, maybe I can lessen the hardship of one other person who also has MS.

I can send out good thoughts and feelings to others who are suffering from MS. And not just the physical and mental effects of MS, but also the emotional toll it takes on their spouses, children, friends, families. So often I hear from others about domestic upheaval from the sheer emotional and financial toll from MS, espeically Primary Progressive Multiple Sclerosis. I mean PPMS can be a very isolating disease as sufferers have great difficulty moving about their communities for both daily living issues and SOCIAL CONNECTIONS.

In any event I will blog more when I return. Until then I wish you all well.