Re: [TMIC] Baclofen Pump
What a great support group we have! How nice to have input from those who already have the pump.Good luck to all of you. Janice From: Deb Monteleone Sent: Friday, June 21, 2013 5:17 PM To: 'Robert Pall' ; tmic-list@eskimo.com ; ahope...@optonline.net ; shirleyabreu2...@msn.com ; vet2bi...@aol.com ; iluvt...@hotmail.com ; suelau...@optonline.net ; frosscl...@embarqmail.com ; mike.fitzger...@us.deltagalil.com ; purple442...@yahoo.com ; lbieh...@earthlink.net ; amy.war...@cigna.com ; judyd...@aol.com ; lbilli...@aol.com ; cgs...@comcast.net ; mpk0...@comcast.net ; traqu...@yahoo.com ; margo.or...@gmail.com ; ppet...@wiley.com ; campeo...@msn.com ; bac...@ramapo.edu ; aac...@rkco.com ; suela...@aol.com ; tikicon...@verizon.net ; fd...@aol.com ; baea...@aol.com ; fulltimewmc9...@aol.com ; mae...@thestettlergroup.com ; rmom...@comcast.net ; nzipu...@yahoo.com ; caree...@aol.com ; arp1...@aol.com ; tac8...@aol.com ; mother...@gmail.com ; suela...@aol.com ; jandpstev...@optonline.net ; jaydeeteef...@gmail.com ; kaysquare...@aol.com ; mrsde...@aol.com ; louie405phi...@aol.com ; r1aquil...@aol.com ; alke...@hotmail.com ; ktek...@aol.com ; deefi...@yahoo.com ; thav...@optonline.net ; teamba...@hotmail.com ; rollinmama...@yahoo.com ; niyu...@yahoo.com ; doctora...@aol.com ; aberc...@aol.com ; aberc...@aol.com ; sharoni...@yahoo.com ; sharoni...@yahoo.com ; andreeb...@aol.com ; gary5...@comcast.net ; gary5...@comcast.net ; momc...@optonline.net ; amanda...@comcast.net ; beans...@aol.com ; hart...@comcast.net ; flynch8...@gmail.com Subject: RE: [TMIC] Baclofen Pump Hi Rob, I can’t wait to hear you say your pain is greatly reduced or gone. I had my pain pump (same pump) put in on June 5th. I was uncomfortable for about 3 days, then the surgical areas felt so much better. You can’t do much but hang out, I organized all my screws, bolts, nuts, etc. It occupied about 4 days and now I know what I have and where it is, yeah. I went back to work today, wasn’t too bad. The pump does feel a little odd, really from the outside, under my skin I don’t really notice it. I started the Prialt at a dosage of 2 as your body needs to acclimate to it. He said most people seem to feel some release at a dosage of around 4. I was raised to 3 this Wednesday, most likely 3.5 next Tuesday. I’m hoping 4-5 is when I’ll feel something, but still not sure Prialt will work for me. He also told me when they first started using Prialt they started the patients at a dosage of 10! This is why so many people had and still have such problems. That made me feel better about using it, they learned to start low and increase slowly. It also makes me feel horrible that so many people were made so sick. No need for you to worry, the pump with Baclofen had been around a long time with no problems and has helped so many people. Make it a great day, Deb From: Robert Pall [mailto:robthe...@aol.com] Sent: Wednesday, June 19, 2013 9:29 PM To: tmic-list@eskimo.com; ahope...@optonline.net; shirleyabreu2...@msn.com; vet2bi...@aol.com; iluvt...@hotmail.com; suelau...@optonline.net; frosscl...@embarqmail.com; mike.fitzger...@us.deltagalil.com; purple442...@yahoo.com; lbieh...@earthlink.net; amy.war...@cigna.com; judyd...@aol.com; lbilli...@aol.com; robthe...@aol.com; cgs...@comcast.net; mpk0...@comcast.net; traqu...@yahoo.com; margo.or...@gmail.com; ppet...@wiley.com; campeo...@msn.com; bac...@ramapo.edu; aac...@rkco.com; suela...@aol.com; tikicon...@verizon.net; fd...@aol.com; baea...@aol.com; fulltimewmc9...@aol.com; mae...@thestettlergroup.com; rmom...@comcast.net; nzipu...@yahoo.com; caree...@aol.com; arp1...@aol.com; tac8...@aol.com; mother...@gmail.com; suela...@aol.com; jandpstev...@optonline.net; jaydeeteef...@gmail.com; kaysquare...@aol.com; mrsde...@aol.com; louie405phi...@aol.com; r1aquil...@aol.com; alke...@hotmail.com; ktek...@aol.com; deefi...@yahoo.com; thav...@optonline.net; teamba...@hotmail.com; rollinmama...@yahoo.com; niyu...@yahoo.com; doctora...@aol.com; aberc...@aol.com; aberc...@aol.com; sharoni...@yahoo.com; sharoni...@yahoo.com; andreeb...@aol.com; gary5...@comcast.net; gary5...@comcast.net; momc...@optonline.net; amanda...@comcast.net; beans...@aol.com; hart...@comcast.net; flynch8...@gmail.com Subject: [TMIC] Baclofin Pump Well I am finally going to do it. I have completed my pre-certification and I am scheduled for surgery a week from tomorrow. I am both stressed and excited. I am excited about the possibility of feeling significantly better after suffering almost 16 years with this awful affliction. I am stressed about having a titanium pump attached to my spinal fluid. I promise the group I will give daily reports after the surgery to let all of you know what benefits I come in to. I hope this lets me walk better,takes away the awful banding and lets me live a more normal life. All the best! Rob in New Jersey
RE: [TMIC] Baclofen Pump
Hi Rob, I can't wait to hear you say your pain is greatly reduced or gone. I had my pain pump (same pump) put in on June 5th. I was uncomfortable for about 3 days, then the surgical areas felt so much better. You can't do much but hang out, I organized all my screws, bolts, nuts, etc. It occupied about 4 days and now I know what I have and where it is, yeah. I went back to work today, wasn't too bad. The pump does feel a little odd, really from the outside, under my skin I don't really notice it. I started the Prialt at a dosage of 2 as your body needs to acclimate to it. He said most people seem to feel some release at a dosage of around 4. I was raised to 3 this Wednesday, most likely 3.5 next Tuesday. I'm hoping 4-5 is when I'll feel something, but still not sure Prialt will work for me. He also told me when they first started using Prialt they started the patients at a dosage of 10! This is why so many people had and still have such problems. That made me feel better about using it, they learned to start low and increase slowly. It also makes me feel horrible that so many people were made so sick. No need for you to worry, the pump with Baclofen had been around a long time with no problems and has helped so many people. Make it a great day, Deb From: Robert Pall [mailto:robthe...@aol.com] Sent: Wednesday, June 19, 2013 9:29 PM To: tmic-list@eskimo.com; ahope...@optonline.net; shirleyabreu2...@msn.com; vet2bi...@aol.com; iluvt...@hotmail.com; suelau...@optonline.net; frosscl...@embarqmail.com; mike.fitzger...@us.deltagalil.com; purple442...@yahoo.com; lbieh...@earthlink.net; amy.war...@cigna.com; judyd...@aol.com; lbilli...@aol.com; robthe...@aol.com; cgs...@comcast.net; mpk0...@comcast.net; traqu...@yahoo.com; margo.or...@gmail.com; ppet...@wiley.com; campeo...@msn.com; bac...@ramapo.edu; aac...@rkco.com; suela...@aol.com; tikicon...@verizon.net; fd...@aol.com; baea...@aol.com; fulltimewmc9...@aol.com; mae...@thestettlergroup.com; rmom...@comcast.net; nzipu...@yahoo.com; caree...@aol.com; arp1...@aol.com; tac8...@aol.com; mother...@gmail.com; suela...@aol.com; jandpstev...@optonline.net; jaydeeteef...@gmail.com; kaysquare...@aol.com; mrsde...@aol.com; louie405phi...@aol.com; r1aquil...@aol.com; alke...@hotmail.com; ktek...@aol.com; deefi...@yahoo.com; thav...@optonline.net; teamba...@hotmail.com; rollinmama...@yahoo.com; niyu...@yahoo.com; doctora...@aol.com; aberc...@aol.com; aberc...@aol.com; sharoni...@yahoo.com; sharoni...@yahoo.com; andreeb...@aol.com; gary5...@comcast.net; gary5...@comcast.net; momc...@optonline.net; amanda...@comcast.net; beans...@aol.com; hart...@comcast.net; flynch8...@gmail.com Subject: [TMIC] Baclofin Pump Well I am finally going to do it. I have completed my pre-certification and I am scheduled for surgery a week from tomorrow. I am both stressed and excited. I am excited about the possibility of feeling significantly better after suffering almost 16 years with this awful affliction. I am stressed about having a titanium pump attached to my spinal fluid. I promise the group I will give daily reports after the surgery to let all of you know what benefits I come in to. I hope this lets me walk better,takes away the awful banding and lets me live a more normal life. All the best! Rob in New Jersey
Re: [TMIC] Baclofen Pump
Rob, so glad you are taking the plunge! I did that for my nerve implant and it is the best thing I ever did.Good luck and keep us informed. Janice From: Barbara H. Sent: Friday, March 01, 2013 10:46 AM To: Robert Pall ; tmic Subject: Re: [TMIC] Baclofen Pump I'm so glad the trial went so well for you! I hope you have good results with the surgery. Barbara H. On Fri, Mar 1, 2013 at 11:24 AM, Robert Pall robthe...@aol.com wrote: I went for the trial for the Baclofen Pump a few weeks ago and I was amazed at the result. After injecting a small dosage of Baclofen directly into my spinal, with 1/2 hour the spasticity in my legs was greatly reducedand it continued to lessen over the next 2 hours. The entire trial lasted less than 4 hours and is a requirement prior to getting the pump. I have decided to go ahead with surgery for the pump. I will be in the hospital for 24 hours and then transported to a rehab center for approx. 2-3 days. The thought of having this device inserted into my body is not a pleasant one...although I have been assured I won't even know it is there. My decision is based solely on the fact that if I do not do it I will second guess myself the rest of my life. I am having the surgery done on June 27th. For the people in the NJ TM support group I hope to have the next meeting Mid April where I can discuss it in greater detail. In addition there will be a walk for TM on April 13th at Cooper Park in Pennsauken NJ. Anyone wishing to attend please let me know. Last year more than 200 people attended the walk and it raised over $10,000. All the best! Rob in New Jersey
RE: [TMIC] Baclofen Pump
Hey Rob, I don't need the baclofen pump but I have an appointment in two weeks to discuss a morphine pump. My Neurologist has patients using the baclofen pump with great success. I heard him say to one of the PA's that if a particular patient doesn't have the pump put in they will end up not being able to walk, so it can be a life saver. It sounds like it will help you a great deal. That's wonderful! I'm hoping my trial for the morphine pump works out as well as yours did. Make it a great day, Deb From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Sunday, March 03, 2013 5:27 PM To: Barbara H.; Robert Pall; tmic Subject: Re: [TMIC] Baclofen Pump Rob, so glad you are taking the plunge! I did that for my nerve implant and it is the best thing I ever did.Good luck and keep us informed. Janice From: Barbara H. mailto:barbara...@gmail.com Sent: Friday, March 01, 2013 10:46 AM To: Robert Pall mailto:robthe...@aol.com ; tmic mailto:tmic-list@eskimo.com Subject: Re: [TMIC] Baclofen Pump I'm so glad the trial went so well for you! I hope you have good results with the surgery. Barbara H. On Fri, Mar 1, 2013 at 11:24 AM, Robert Pall robthe...@aol.com wrote: I went for the trial for the Baclofen Pump a few weeks ago and I was amazed at the result. After injecting a small dosage of Baclofen directly into my spinal, with 1/2 hour the spasticity in my legs was greatly reducedand it continued to lessen over the next 2 hours. The entire trial lasted less than 4 hours and is a requirement prior to getting the pump. I have decided to go ahead with surgery for the pump. I will be in the hospital for 24 hours and then transported to a rehab center for approx. 2-3 days. The thought of having this device inserted into my body is not a pleasant one...although I have been assured I won't even know it is there. My decision is based solely on the fact that if I do not do it I will second guess myself the rest of my life. I am having the surgery done on June 27th. For the people in the NJ TM support group I hope to have the next meeting Mid April where I can discuss it in greater detail. In addition there will be a walk for TM on April 13th at Cooper Park in Pennsauken NJ. Anyone wishing to attend please let me know. Last year more than 200 people attended the walk and it raised over $10,000. All the best! Rob in New Jersey
RE: [TMIC] Baclofen Pump
Janice, Sorry if you wrote about your nerve implant already but I can't bring it to mind. Seems to happen a lot to me. What does it do for you? When I went to one pain mgmt. doctor I was told about spinal stimulation (implant) but they said it would not help my peripheral neuropathy pain. Hence moving on to the morphine pump trial. Make it a great day, Deb From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Sunday, March 03, 2013 5:27 PM To: Barbara H.; Robert Pall; tmic Subject: Re: [TMIC] Baclofen Pump Rob, so glad you are taking the plunge! I did that for my nerve implant and it is the best thing I ever did.Good luck and keep us informed. Janice From: Barbara H. mailto:barbara...@gmail.com Sent: Friday, March 01, 2013 10:46 AM To: Robert Pall mailto:robthe...@aol.com ; tmic mailto:tmic-list@eskimo.com Subject: Re: [TMIC] Baclofen Pump I'm so glad the trial went so well for you! I hope you have good results with the surgery. Barbara H. On Fri, Mar 1, 2013 at 11:24 AM, Robert Pall robthe...@aol.com wrote: I went for the trial for the Baclofen Pump a few weeks ago and I was amazed at the result. After injecting a small dosage of Baclofen directly into my spinal, with 1/2 hour the spasticity in my legs was greatly reducedand it continued to lessen over the next 2 hours. The entire trial lasted less than 4 hours and is a requirement prior to getting the pump. I have decided to go ahead with surgery for the pump. I will be in the hospital for 24 hours and then transported to a rehab center for approx. 2-3 days. The thought of having this device inserted into my body is not a pleasant one...although I have been assured I won't even know it is there. My decision is based solely on the fact that if I do not do it I will second guess myself the rest of my life. I am having the surgery done on June 27th. For the people in the NJ TM support group I hope to have the next meeting Mid April where I can discuss it in greater detail. In addition there will be a walk for TM on April 13th at Cooper Park in Pennsauken NJ. Anyone wishing to attend please let me know. Last year more than 200 people attended the walk and it raised over $10,000. All the best! Rob in New Jersey
Re: [TMIC] Baclofen Pump
Deb, I think I have what your doc’s referred to as a spinal stimulation implant. It really helps cover nerve pain when walking and it seems to give me extra strength in my legs to walk.I really feel it has kept me out of the wheelchair - love it. What is “peripheral” nerve pain? Janice From: Deb Monteleone Sent: Sunday, March 03, 2013 6:47 PM To: 'Janice Nichols' ; 'tmic' Subject: RE: [TMIC] Baclofen Pump Janice, Sorry if you wrote about your nerve implant already but I can’t bring it to mind. Seems to happen a lot to me. What does it do for you? When I went to one pain mgmt. doctor I was told about spinal stimulation (implant) but they said it would not help my peripheral neuropathy pain. Hence moving on to the morphine pump trial. Make it a great day, Deb From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Sunday, March 03, 2013 5:27 PM To: Barbara H.; Robert Pall; tmic Subject: Re: [TMIC] Baclofen Pump Rob, so glad you are taking the plunge! I did that for my nerve implant and it is the best thing I ever did.Good luck and keep us informed. Janice From: Barbara H. Sent: Friday, March 01, 2013 10:46 AM To: Robert Pall ; tmic Subject: Re: [TMIC] Baclofen Pump I'm so glad the trial went so well for you! I hope you have good results with the surgery. Barbara H. On Fri, Mar 1, 2013 at 11:24 AM, Robert Pall robthe...@aol.com wrote: I went for the trial for the Baclofen Pump a few weeks ago and I was amazed at the result. After injecting a small dosage of Baclofen directly into my spinal, with 1/2 hour the spasticity in my legs was greatly reducedand it continued to lessen over the next 2 hours. The entire trial lasted less than 4 hours and is a requirement prior to getting the pump. I have decided to go ahead with surgery for the pump. I will be in the hospital for 24 hours and then transported to a rehab center for approx. 2-3 days. The thought of having this device inserted into my body is not a pleasant one...although I have been assured I won't even know it is there. My decision is based solely on the fact that if I do not do it I will second guess myself the rest of my life. I am having the surgery done on June 27th. For the people in the NJ TM support group I hope to have the next meeting Mid April where I can discuss it in greater detail. In addition there will be a walk for TM on April 13th at Cooper Park in Pennsauken NJ. Anyone wishing to attend please let me know. Last year more than 200 people attended the walk and it raised over $10,000. All the best! Rob in New Jersey
Re: [TMIC] Baclofen Pump
I'm so glad the trial went so well for you! I hope you have good results with the surgery. Barbara H. On Fri, Mar 1, 2013 at 11:24 AM, Robert Pall robthe...@aol.com wrote: I went for the trial for the Baclofen Pump a few weeks ago and I was amazed at the result. After injecting a small dosage of Baclofen directly into my spinal, with 1/2 hour the spasticity in my legs was greatly reducedand it continued to lessen over the next 2 hours. The entire trial lasted less than 4 hours and is a requirement prior to getting the pump. I have decided to go ahead with surgery for the pump. I will be in the hospital for 24 hours and then transported to a rehab center for approx. 2-3 days. The thought of having this device inserted into my body is not a pleasant one...although I have been assured I won't even know it is there. My decision is based solely on the fact that if I do not do it I will second guess myself the rest of my life. I am having the surgery done on June 27th. For the people in the NJ TM support group I hope to have the next meeting Mid April where I can discuss it in greater detail. In addition there will be a walk for TM on April 13th at Cooper Park in Pennsauken NJ. Anyone wishing to attend please let me know. Last year more than 200 people attended the walk and it raised over $10,000. All the best! Rob in New Jersey
RE: [TMIC] Baclofen Pump
Hi Rob - I went for the trial also. The doc put a lot of Baclofen in my spine and I became a paraplegic for 2.5 days, which really turned me off. I ixnayed the pump. I take 10 mg of Baclofen, any more and I get very weak, have a hard time standing. My neuro wanted me to get Botox shots in my back to help with spasms also, but I am leery of that too, I don't want to become a jellyfish. When I'm sitting on my shower seat (no backrest) I need my back to be strong, when I'm having a weak day, I have a hard time sitting on it. For now, I'm going to tough through it. Barney Butcher Honeywell Engineering 516-577-5868 From: Robert Pall [mailto:robthe...@aol.com] Sent: Friday, March 01, 2013 11:25 AM To: tmic-list@eskimo.com; ahope...@optonline.com; shirleyabreu2...@msn.com; vet2bi...@aol.com; iluvt...@hotmail.com; suelau...@optonline.net; frosscl...@embarqmail.com; mike.fitzger...@us.deltagalil.com; purple442...@yahoo.com; lbieh...@earthlink.net; shan01...@aol.com; amy.war...@cigna.com; judyd...@aol.com; lbilli...@aol.com; robthe...@aol.com; cgs...@comcast.net; mpk0...@comcast.net; traqu...@yahoo.com; margo.or...@gmail.com; ppet...@wiley.com; campeo...@msn.com; bac...@ramapo.edu; aac...@rkco.com; suela...@aol.com; tikicon...@verizon.net; fd...@aol.com; baea...@aol.com; fulltimewmc9...@aol.com; mae...@thestettlergroup.com; rmom...@comcast.net; nzipu...@yahoo.com; caree...@aol.com; arp1...@aol.com; tac8...@aol.com; mother...@gmail.com; suela...@aol.com; jandpstev...@optonline.net; jaydeeteef...@gmail.com; kaysquare...@aol.com; mrsde...@aol.com; louie405phi...@aol.com; r1aquil...@aol.com; alke...@hotmail.com; ktek...@aol.com; deefi...@yahoo.com; thav...@optonline.net; teamba...@hotmail.com; rollinmama...@yahoo.com; niyu...@yahoo.com; doctora...@aol.com; aberc...@aol.com; aberc...@aol.com; welt...@iwon.com; george.bar...@usa.net; sharoni...@yahoo.com; sharoni...@yahoo.com; kbertu...@sbsschools.org; andreeb...@aol.com; gary5...@comcast.net; gary5...@comcast.net; momc...@optonline.net; amanda...@comcast.net; beans...@aol.com; hart...@comcast.net; flynch8...@gmail.com Subject: [TMIC] Baclofen Pump I went for the trial for the Baclofen Pump a few weeks ago and I was amazed at the result. After injecting a small dosage of Baclofen directly into my spinal, with 1/2 hour the spasticity in my legs was greatly reducedand it continued to lessen over the next 2 hours. The entire trial lasted less than 4 hours and is a requirement prior to getting the pump. I have decided to go ahead with surgery for the pump. I will be in the hospital for 24 hours and then transported to a rehab center for approx. 2-3 days. The thought of having this device inserted into my body is not a pleasant one...although I have been assured I won't even know it is there. My decision is based solely on the fact that if I do not do it I will second guess myself the rest of my life. I am having the surgery done on June 27th. For the people in the NJ TM support group I hope to have the next meeting Mid April where I can discuss it in greater detail. In addition there will be a walk for TM on April 13th at Cooper Park in Pennsauken NJ. Anyone wishing to attend please let me know. Last year more than 200 people attended the walk and it raised over $10,000. All the best! Rob in New Jersey
Re: [TMIC] Baclofen Pump
A brave decision. I hope you get a good result Rob. Iris UK Sent from my iPad On 1 Mar 2013, at 16:24, Robert Pall robthe...@aol.com wrote: I went for the trial for the Baclofen Pump a few weeks ago and I was amazed at the result. After injecting a small dosage of Baclofen directly into my spinal, with 1/2 hour the spasticity in my legs was greatly reducedand it continued to lessen over the next 2 hours. The entire trial lasted less than 4 hours and is a requirement prior to getting the pump. I have decided to go ahead with surgery for the pump. I will be in the hospital for 24 hours and then transported to a rehab center for approx. 2-3 days. The thought of having this device inserted into my body is not a pleasant one...although I have been assured I won't even know it is there. My decision is based solely on the fact that if I do not do it I will second guess myself the rest of my life. I am having the surgery done on June 27th. For the people in the NJ TM support group I hope to have the next meeting Mid April where I can discuss it in greater detail. In addition there will be a walk for TM on April 13th at Cooper Park in Pennsauken NJ. Anyone wishing to attend please let me know. Last year more than 200 people attended the walk and it raised over $10,000. All the best! Rob in New Jersey
Re: [TMIC] Baclofen pump
I have to get it filled every 6 months. It was every three at first, but once my dose was stable they used a stronger concentration of Baclofen and moved it out. From: amy shultz mic...@hotmail.com To: lynnemye...@yahoo.com; TM group tmic-list@eskimo.com Sent: Saturday, February 23, 2013 9:22 PM Subject: RE: [TMIC] Baclofen pump OMG Lynn!! How often must you get it filled? I would pray to God that wasnt every month. I think my doctor said like maybe every 3 months but IDK, I couldnt afford that. Rob I hope you can get it and NOT have that cost involved!! Again best of luck!! Amy Shultz in Ohio Date: Fri, 22 Feb 2013 16:36:52 -0800 From: lynnemye...@yahoo.com Subject: Re: [TMIC] Baclofen pump To: robthe...@aol.com; tmic-list@eskimo.com Rob I have had a pump for quite a few years now, I use it to control clonus in my legs. The only down side I have found is the cost involved with getting the pump filled. Even with insurance my co-pay is over $600 every time I have to go in. From: Robert Pall robthe...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, February 12, 2013 11:31 AM Subject: [TMIC] Baclofen pump I have just seen a new neuro who recommended the baclofen pump. He had me do a trial where he inserted a needle into my spine and injected a small dose of baclofen. Almost immediately I felt the banding in my legs improve and my walking was much better as well. I guess I am just worried about the downside if any of the pump. I would love to hear from people presently using the pump and hear their side of the story. Please keep in mind that I presently walk unassisted and drive (and swim). Ju7st want to make sure the upside is far better than the downside! All the best! Rob in New Jersey
Re: [TMIC] Baclofen pump
Yes paying for each refill is standard. They actually charge for in office surgery each time they access it to refill it. We have a private insurance through my husbands work and our co-pay is 20% each time. From: heyjude48...@aol.com heyjude48...@aol.com To: lynnemye...@yahoo.com Sent: Friday, February 22, 2013 9:09 PM Subject: Re: [TMIC] Baclofen pump Lynn, I had no idea we would have to pay each time the pump needed to be refilled. Is that a standard thing? What kind of insurance do you have? That really scares me because no one mentioned that aspect of it. Jude, Michigan In a message dated 2/22/2013 7:37:04 P.M. Eastern Standard Time, lynnemye...@yahoo.com writes: Rob I have had a pump for quite a few years now, I use it to control clonus in my legs. The only down side I have found is the cost involved with getting the pump filled. Even with insurance my co-pay is over $600 every time I have to go in. From: Robert Pall robthe...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, February 12, 2013 11:31 AM Subject: [TMIC] Baclofen pump I have just seen a new neuro who recommended the baclofen pump. He had me do a trial where he inserted a needle into my spine and injected a small dose of baclofen. Almost immediately I felt the banding in my legs improve and my walking was much better as well. I guess I am just worried about the downside if any of the pump. I would love to hear from people presently using the pump and hear their side of the story. Please keep in mind that I presently walk unassisted and drive (and swim). Ju7st want to make sure the upside is far better than the downside! All the best! Rob in New Jersey
RE: [TMIC] Baclofen pump
OMG Lynn!! How often must you get it filled? I would pray to God that wasnt every month. I think my doctor said like maybe every 3 months but IDK, I couldnt afford that. Rob I hope you can get it and NOT have that cost involved!! Again best of luck!! Amy Shultz in Ohio Date: Fri, 22 Feb 2013 16:36:52 -0800 From: lynnemye...@yahoo.com Subject: Re: [TMIC] Baclofen pump To: robthe...@aol.com; tmic-list@eskimo.com Rob I have had a pump for quite a few years now, I use it to control clonus in my legs. The only down side I have found is the cost involved with getting the pump filled. Even with insurance my co-pay is over $600 every time I have to go in. From: Robert Pall robthe...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, February 12, 2013 11:31 AM Subject: [TMIC] Baclofen pump I have just seen a new neuro who recommended the baclofen pump. He had me do a trial where he inserted a needle into my spine and injected a small dose of baclofen. Almost immediately I felt the banding in my legs improve and my walking was much better as well. I guess I am just worried about the downside if any of the pump. I would love to hear from people presently using the pump and hear their side of the story. Please keep in mind that I presently walk unassisted and drive (and swim). Ju7st want to make sure the upside is far better than the downside! All the best! Rob in New Jersey
Re: [TMIC] Baclofen pump
Rob I have had a pump for quite a few years now, I use it to control clonus in my legs. The only down side I have found is the cost involved with getting the pump filled. Even with insurance my co-pay is over $600 every time I have to go in. From: Robert Pall robthe...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, February 12, 2013 11:31 AM Subject: [TMIC] Baclofen pump I have just seen a new neuro who recommended the baclofen pump. He had me do a trial where he inserted a needle into my spine and injected a small dose of baclofen. Almost immediately I felt the banding in my legs improve and my walking was much better as well. I guess I am just worried about the downside if any of the pump. I would love to hear from people presently using the pump and hear their side of the story. Please keep in mind that I presently walk unassisted and drive (and swim). Ju7st want to make sure the upside is far better than the downside! All the best! Rob in New Jersey
RE: [TMIC] Baclofen Pump
Doesnt sound like a bad decision to me, I am thrilled for you. I was to have a baclofen/dilaudid pump placed but due to constant infections I have to be re evaluated and reconsidered. Best of luck Rob!! So glad you had really good results with it!! Amy in Ohio To: tmic-list@eskimo.com From: robthe...@aol.com Date: Sat, 16 Feb 2013 19:25:45 -0500 Subject: [TMIC] Baclofen Pump After doing the trial last week and having really good results, I have decided to go ahead with the Baclofen Pump. I have scheduled an appointment with the surgeon in 2 weeks. Now that I have made the decisioncan anybody tell me why it might be the wrong one? Thanks Rob in New Jersey
Re: [TMIC] Baclofen Pump
Rob you have to do what you think is best and if its the Baclofen pump then go for it. Good luck, keep us posted on how it goes. Nikki. Durham, UK. Sent from my iPad On 17 Feb 2013, at 11:33, amy shultz mic...@hotmail.com wrote: Doesnt sound like a bad decision to me, I am thrilled for you. I was to have a baclofen/dilaudid pump placed but due to constant infections I have to be re evaluated and reconsidered. Best of luck Rob!! So glad you had really good results with it!! Amy in Ohio To: tmic-list@eskimo.com From: robthe...@aol.com Date: Sat, 16 Feb 2013 19:25:45 -0500 Subject: [TMIC] Baclofen Pump After doing the trial last week and having really good results, I have decided to go ahead with the Baclofen Pump. I have scheduled an appointment with the surgeon in 2 weeks. Now that I have made the decisioncan anybody tell me why it might be the wrong one? Thanks Rob in New Jersey
Re: [TMIC] Baclofen Pump
Only time will tell you if the decision was right or not. I had the same feelings before I had my nerve implant put in, but it could not have been a better decision. If you do not try it, you would always wonder how much it would have helped you.This way, you will know. Trying things to better our situation is all we can do.I feel you are doing the right thing. After all, you can always have it taken out if it does not work and then you will not spend your time wondering about it. But, from what I have heard of the pump, you probably will do well. Good luck and keep us posted. Janice From: Robert Pall Sent: Saturday, February 16, 2013 6:25 PM To: tmic-list@eskimo.com Subject: [TMIC] Baclofen Pump After doing the trial last week and having really good results, I have decided to go ahead with the Baclofen Pump. I have scheduled an appointment with the surgeon in 2 weeks. Now that I have made the decisioncan anybody tell me why it might be the wrong one? Thanks Rob in New Jersey
Re: [TMIC] baclofen pump
I was on the max dosage of oral Baclofen before the pump and was not getting relief from the spasms, just felt like a had major brain fog all the time. --- On Wed, 5/19/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] baclofen pump To: lynne myers lynnemye...@yahoo.com, dennis rabalais dennis_rabalais20...@yahoo.com, tmic tmic-list@eskimo.com Date: Wednesday, May 19, 2010, 12:08 PM I have been very pleased with the amount of baclofen I take in pill form. It really has helped with knee-jerking spasms. Janice From: lynne myers Sent: Wednesday, May 19, 2010 7:44 AM To: dennis rabalais ; tmic Subject: Re: [TMIC] baclofen pump I have had a Baclofen pump for a 3 years now. Although it does relieve some of my spasms and clonus they are not able to turn the dose up high enough to get the desired relief with out affecting my bladder function. I wish before I had it inserted I had checked to see what it was going to cost me each time I get it refilled. Even with insurance coverage we were shocked at the copay amount. I will be having the pump removed when it is time to replace it and go back on the oral Baclofen. Lynne --- On Tue, 5/18/10, dennis rabalais dennis_rabalais20...@yahoo.com wrote: From: dennis rabalais dennis_rabalais20...@yahoo.com Subject: [TMIC] baclofen pump To: tmic-list@eskimo.com Date: Tuesday, May 18, 2010, 3:57 PM hi my name is dennis. i have had tm since 2002. i am getting a baclofen pump put in. has anyone in this group have had one? if so, has it worked? i am a little bit nervous. dennis, texas
Re: [TMIC] baclofen pump
Did any of you start out this whole experience with severe spasming in the legs? I did 2 nights before my legs gave out.Just thought I was working too hard at my water aerobics. The baclofen has always been a blessing for me after I figured out the dosage and what time to take it. Janice From: lynne myers Sent: Thursday, May 20, 2010 8:58 AM To: tmic Subject: Re: [TMIC] baclofen pump I was on the max dosage of oral Baclofen before the pump and was not getting relief from the spasms, just felt like a had major brain fog all the time. --- On Wed, 5/19/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] baclofen pump To: lynne myers lynnemye...@yahoo.com, dennis rabalais dennis_rabalais20...@yahoo.com, tmic tmic-list@eskimo.com Date: Wednesday, May 19, 2010, 12:08 PM I have been very pleased with the amount of baclofen I take in pill form. It really has helped with knee-jerking spasms. Janice From: lynne myers Sent: Wednesday, May 19, 2010 7:44 AM To: dennis rabalais ; tmic Subject: Re: [TMIC] baclofen pump I have had a Baclofen pump for a 3 years now. Although it does relieve some of my spasms and clonus they are not able to turn the dose up high enough to get the desired relief with out affecting my bladder function. I wish before I had it inserted I had checked to see what it was going to cost me each time I get it refilled. Even with insurance coverage we were shocked at the copay amount. I will be having the pump removed when it is time to replace it and go back on the oral Baclofen. Lynne --- On Tue, 5/18/10, dennis rabalais dennis_rabalais20...@yahoo.com wrote: From: dennis rabalais dennis_rabalais20...@yahoo.com Subject: [TMIC] baclofen pump To: tmic-list@eskimo.com Date: Tuesday, May 18, 2010, 3:57 PM hi my name is dennis. i have had tm since 2002. i am getting a baclofen pump put in. has anyone in this group have had one? if so, has it worked? i am a little bit nervous. dennis, texas
Re: [TMIC] baclofen pump
I've had a pump for nine years and swear by it. Replaced it last December concerned that the battery might be nearly exhausted. My spasticity mostly manifested as a knee jerk - untreated, it would slam into the underside of the kitchen table. The pump has stopped that. Completely. Downside - refills every one to two months depending on capacity, dose, concentration Alton, who never leaves home without it :) On May 20, 2010, at 11:17 AM, Janice Nichols wrote: Did any of you start out this whole experience with severe spasming in the legs?
Re: [TMIC] baclofen pump
I've had a pump for nine years and swear by it. Replaced it last December. My spasticity mostly manifested as a knee jerk - untreated, it would slam into the underside of the kitchen table. The pump has stopped that. Completely. Downside - refills every one to two months depending on capacity, dose, concentration Alton, who never leaves home without it :) On May 18, 2010, at 3:57 PM, dennis rabalais wrote: hi my name is dennis. i have had tm since 2002. i am getting a baclofen pump put in. has anyone in this group have had one? if so, has it worked? i am a little bit nervous. dennis, texas
Re: [TMIC] baclofen pump
I have had a Baclofen pump for a 3 years now. Although it does relieve some of my spasms and clonus they are not able to turn the dose up high enough to get the desired relief with out affecting my bladder function. I wish before I had it inserted I had checked to see what it was going to cost me each time I get it refilled. Even with insurance coverage we were shocked at the copay amount. I will be having the pump removed when it is time to replace it and go back on the oral Baclofen. Lynne --- On Tue, 5/18/10, dennis rabalais dennis_rabalais20...@yahoo.com wrote: From: dennis rabalais dennis_rabalais20...@yahoo.com Subject: [TMIC] baclofen pump To: tmic-list@eskimo.com Date: Tuesday, May 18, 2010, 3:57 PM hi my name is dennis. i have had tm since 2002. i am getting a baclofen pump put in. has anyone in this group have had one? if so, has it worked? i am a little bit nervous. dennis, texas
Re: [TMIC] baclofen pump
I have been very pleased with the amount of baclofen I take in pill form. It really has helped with knee-jerking spasms. Janice From: lynne myers Sent: Wednesday, May 19, 2010 7:44 AM To: dennis rabalais ; tmic Subject: Re: [TMIC] baclofen pump I have had a Baclofen pump for a 3 years now. Although it does relieve some of my spasms and clonus they are not able to turn the dose up high enough to get the desired relief with out affecting my bladder function. I wish before I had it inserted I had checked to see what it was going to cost me each time I get it refilled. Even with insurance coverage we were shocked at the copay amount. I will be having the pump removed when it is time to replace it and go back on the oral Baclofen. Lynne --- On Tue, 5/18/10, dennis rabalais dennis_rabalais20...@yahoo.com wrote: From: dennis rabalais dennis_rabalais20...@yahoo.com Subject: [TMIC] baclofen pump To: tmic-list@eskimo.com Date: Tuesday, May 18, 2010, 3:57 PM hi my name is dennis. i have had tm since 2002. i am getting a baclofen pump put in. has anyone in this group have had one? if so, has it worked? i am a little bit nervous. dennis, texas
Re: [TMIC] baclofen pump
The pump looks like a steel hockey puck with a rubber window in the center and a cannula connection on the side. To refill it the doctor sticks a thin needle through the skin through the rubber window into the pump’s drug reservoir. Between the needle and the syringe is a micron filter to block bacteria that might be in the medicine. Alton On May 19, 2010, at 10:40 AM, Laura Beaudin wrote: How are baclofen pumps refilled?
Re: [TMIC] baclofen pump
Dennis, I had a baclofen pump put in in July 2006, one year after I diagnosed with TM. My PMR doctor, at the time, talked me into getting it. At the time I was walking on a platform walker, over 500 feet at a time. This was good for me, since my TM left me paralyzed on the right side and a quadriplegic. I say, she talked me into getting it, because I was not spastic at the time I had it put in. She told me I will be able to walk further and better. After having the baclofen pump put in, and having two weeks of therapy (which I was promised more therapy time), I was only able to walk 95 feet at most. Over the course of time, I became weaker, received subacute therapy and my Pop site costs need to be hospitalized three times for swelling and pain. My neurosurgeon's nurse, told me that the pump was a foreign object, and my body was constantly trying to reject it. With each hospitalization, they told me that it was not infected, but gave me intense, IV antibiotics, after which the pain and swelling would subside. This led me to believe that there was some infection involved. I was tired of the whole ordeal and opt to have the pump removed. Dennis, I had a baclofen pump put in in July 2006, one year after I diagnosed with TM. My PMR doctor, at the time, talked me into getting it. At the time I was walking on a platform walker, over 500 feet at a time. This was good for me, since my TM left me paralyzed on the right side and a quadriplegic. I say, she talked me into getting it, because I was not spastic at the time I had it put in. She told me I will be able to walk further and better. After having the baclofen pump put in, and having two weeks of therapy (which I was promised more therapy time), I was only able to walk 95 feet at most. Over the course of time, I became weaker, received subacute therapy and my Pop site costs need to be hospitalized three times for swelling and pain. My neurosurgeon's nurse, told me that the pump was a foreign object, and my body was constantly trying to reject it. With each hospitalization, they told me that it was not infected, but gave me intense, IV antibiotics, after which the pain and swelling would subside. This led me to believe that there was some infection involved. I was tired of the whole ordeal and opt to have the pump removed. Once I had my pump removed, the PMR doctor's attitude toward me changed. To make a long story short, she's no longer my doctor. I felt I was talked into getting the pump unnecessarily and when she was no longer servicing it, she had no use for me as a patient. My new PMR doctor said that I should have never gotten the baclofen pump, if I was planning on walking. I don't know if this is true, but I do know that with the pump. I was so flaccid, I could not even stand. The day after I had it removed, I have more tone and was able to stand on my own. I've lost so much doing that. I had the pump, but I don't think I'll ever be able to stand and walk again. I stayed in the hospital for six weeks, last October, to receive acute therapy, and I had so many minor issues that needed to be addressed, that made it impossible for me to walk. Because I wasn't walking and standing (due to no therapy, and no one to help me at home), I did not realize that my right heel would not even touch the floor, and I could not straighten the upper part of my body into an upright position. The doctor gave me Botox and then a phenol nerve block, in my leg to try and get my heel on the floor. After I managed to get my heel on the floor, I wasn't able to throw my hip forward, to move my right leg forward. I was doing all of these things before I got the baclofen pump. I'm not blaming it totally on the pump. It's also a lack of therapy and a lousy doctor. Dennis, maybe you have a caring doctor who mean well and know what they are doing. Just because it didn't work out for me does not mean that it won't benefit you. I wish you well. Dennis, maybe you have a caring doctor who mean well and know what they are doing. Just because it didn't work out for me does not mean that it won't benefit you. I wish you well. Have a Blessed Day, Naomi -Original Message- From: dennis rabalais dennis_rabalais20...@yahoo.com To: tmic-list@eskimo.com Sent: Tue, May 18, 2010 3:57 pm Subject: [TMIC] baclofen pump hi my name is dennis. i have had tm since 2002. i am getting a baclofen pump put in. has anyone in this group have had one? if so, has it worked? i am a little bit nervous. dennis, texas
