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Member since 4/15/05
Posts: 1290
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Posted on: 2/19/06 2:13 AM ET
Long story made short. DD had a broken screw in her electric wheelchair when she came home for Christmas, which has led to: she needs a new wheelchair 'cause the old one can't be fixed, off to PT and doctor for wheelchair evaluations, they recommended that she have PT and OT therapy visits for 4 hours a week. She now has a prescription for a prone stander, different orthotics, and a medication for rigid muscle tone-- its been awhile since she has been in "patient" mode.

The medication helps relieve the rigidity somewhat, but she needs more. The PT is talking to a neurologist about having a pump implanted to deliver the medication into her spinal cord. DD is determined to finish her last semester of graduate school on time in May. She is hoping the surgery has a quick recovery time-- like overnight.

I know that implanted pumps are now being used to deliver continuous medication for various illnesses-- does anyone have experience with one?
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Elizabeth
  
Member since 8/12/02
Posts: 755
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Posted on: 2/19/06 2:40 AM ET
I don't know about delivering meds to the spinal cord, although I will see if dh knows in the AM (I have insomnia tonight) but I do have experience with insulin pumps and had one patient in hospice with an internal pump that delivered narcs.

If any of my kids ever developed diabetes, I would have them on a pump as soon as they were old enough.

Good luck to dd, and let us know how it goes.

--Erin
  
Member since 3/8/05
Posts: 85
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Posted on: 2/19/06 7:28 AM ET
I have no knowledge of using implanted pumps for meds in the way you are reffering. I have been on an insulin pump for six and a half years now and would not go back to daily injections ever again.

I hope all goes well with DD and we will keep your family in our thoughts and prayers.

Carmen
  
Member since 8/12/02
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Posted on: 2/19/06 9:35 AM ET
My dh is familiar with intrathecal pumps for drugs like baclofen. He hasn't had any patients with one himself, so doesn't know much about quality of life issues with it.

Sorry I can't provide more help.

--Erin
  
Member since 1/26/03
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Posted on: 2/19/06 11:10 AM ET
In reply to elizajo
First to clarify, since there is confusion. I am not an MD, I sew and live in MD.

I was an OT. A new W/C every few years is generally a good idea. Revisiting therapy can be a good idea too. Muscle tone issues can cause ongoing changes that you want to deal with in positioning and directly with treatment.

I would be very cautious about anything in my spinal cord and do as much research as possible about benefits and risks and alternatives.

I've had patients who had pumps for intractable pain from terminal cancer and they were a real sanity saver for them.

Good luck to dd and you. I understand that she wants to be somehow done with being a patient, but I encourage her to keep addressing her needs and to realize there are new approaches happening all the time that she might miss.

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Buy the best and you only cry once.

  
Member since 11/11/03
Posts: 1773
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Posted on: 2/19/06 11:38 AM ET
I have limited knowedge about this but I have had patients who have had devices implated into their spinal cord and didn't have any problems with it. One of the benefits to this sort of thing is that you can administer a substanially smaller amount of the medicine in question. It is going right to the specific area where it is needed. This minimizes the systemic side effects which result from the need for large doses of oral medications.
  
Member since 4/15/05
Posts: 1290
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Posted on: 2/19/06 3:20 PM ET
Thank you all for your advice. DD has disliked any notion that her cerebral palsy is an illness since she was little--- just get on with life for her. I think she is realizing that her continued independence depends on her maintaining flexibility and some mobility. At first, she told the PT "no way" but I think she has changed her mind. The oral baclofen must be taken in very high doses to give her relief from painful spasms and tight muscles. The side effects are not pleasant. From what I can read the interthecal pump gets less medicine directly to her central nervous system.

But there are serious complications that can arise if the medicine is not administrated at the correct amount due to malfunction or human error. That's scary for her. My questions are about the reliability of the pump, infections, etc. I'm urging her to at least see the neurologist and try an external pump.

Thanks again for responding to my totally OT message!
-- Edited on 2/19/06 3:22 PM --
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Elizabeth
  
Member since 4/15/05
Posts: 1290
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Posted on: 3/15/06 1:20 PM ET
DD is having a trial run for the Baclofen pump tomorrow if the neurologist/neurosurgeon decides she might be a candidate. They will inject the medicine into her spinal fluid and monitor her muscle tone for several hours.

This whole thing has got me so nervous--I'm supposed to be preparing my house for a dinner party on the 25th. All I can do is sew or surf the internet to keep me calm. So over the past week I have a new wardrobe of 8 knit tops and posted more than usual on PR. Of course my house still needs a good spring cleaning for the party. Once I get back from driving her to the doctor tomorrow night I'll be in a better frame of mind for the party-- I hope.
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Elizabeth
  
Member since 1/12/04
Posts: 6312
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Posted on: 3/15/06 4:35 PM ET
My DH has a spinal stimulator implanted because he has 3 deteriorated discs in his lower back. Not exactly the same thing, but we were able to go to the internet and order materials and videos that we could review.

He decided to go ahead and have it put in. It is very scary, but it was his decision. He states that it has relieved his pain a great deal, like about 50 to 60 percent.

There are issues with these types of things and he has to wear a medic alert bracelet. It may affect future medical treatment and surgeries that she may need because she will have an electrical device in her body. DH had a hernia repair since and they were not able to use an electrocautery device (or at least had to change the kind that the dr usually used). It may not be possible to use a device to shock the heart back into a normal rhythm in the event he has a heart attack.

These are issues that she should talk about with her M.D. She should ask how many of these her M.D. has done.

The reason he decided to go ahead with it was because he was taking large amounts of serious pain killers and he was having issues with pain and the amount of opiates he was taking and side effects with the opiates. Also M.D.'s don't like to prescribe these types of medications because here they are watched by the government.


-- Edited on 3/15/06 4:36 PM --
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Marilyn

January 2009 to January 2010 81 yards out and 71yards in January 2010 to the present 106.7 yards out and 146.5 yards in. January 2011 to the present: 47 yards out and 69 yards in.
  
Member since 4/15/05
Posts: 1290
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Posted on: 3/15/06 5:40 PM ET
In reply to mastdenman
Thank you for your response. It sounds like the pump has been a good solution for your DH. Long term pain management has gotten so difficult for doctors with all the new FDA regs.

I think we are getting much more comfortable with the idea of the implanted device. My apprehension is more like anticipation--- hoping that she might finally have found something which will help. I am preparing a list of questions for the doctor, especially about his experience.
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Elizabeth
  
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