looking for a CPM doctor that uses medtronic intrathecal pump

Deb Community Member March 17, 2008
  • Hi, my name is Deb. I live in the Houston, Clearlake area in Texas. I am a disabled vet and I have a medtronics intrathecal pump using dilaudid. I am looking to move and I was wondering were some of you are from and who are your doctors. I have to refill every 2weeks. I got a new phychiatrist at the VA that doesn't know anything about TBI spinal injuries, PTSD or seizures and she thinks she should just yank me off of clonazapam that has been controlling spaticity and helping with seizures and my ability to focus do to the frontal lobe damage I have cognitive problems and severe memory problems. Anyway we were thinking about moving anyway which means I would need a new doctor and need to start looking. Does anyone have any suggestions? My nurse quit that was going to help me and I lost her number on my own. Are there any vets here?
7 Comments
  • jziefle
    Sep. 06, 2011
    I am originally from the Woodlands where Dr. Jack Chapman was my doc. He has four offices around N. Houston area. Where are you moving? I now live in Durham, but last year with the help of my psychiatrist, I got off of the high doses of Dilaudid to help reset my base levels. Using Suboxone (in-patient)...btw, it was a breeze...then taking 100mg of Tramadol...
    RHMLucky777
    Read More
    I am originally from the Woodlands where Dr. Jack Chapman was my doc. He has four offices around N. Houston area. Where are you moving? I now live in Durham, but last year with the help of my psychiatrist, I got off of the high doses of Dilaudid to help reset my base levels. Using Suboxone (in-patient)...btw, it was a breeze...then taking 100mg of Tramadol with some xanax, I have been able to cope for almost a year. Now, however, I feel it is time to start trying a low dose of pain meds in my pump so I am looking for a doctor at Duke. Let me know if I can help you further. Julz
  • Anonymous
    Bonnie Bayers
    Dec. 05, 2008

    Hey Deb, my name is Bonnie and I live in Southern Va, Keysville to be exact.  A VERY rural area.  You are not alone in this situation.  Unlike you, where you have a pump, I have a medtronic spinal stimulator (my 4th one yet).  I am currently having the same problem in wanting to relocate (actually to TX) and cannot seem to find anyone to...

    RHMLucky777

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    Hey Deb, my name is Bonnie and I live in Southern Va, Keysville to be exact.  A VERY rural area.  You are not alone in this situation.  Unlike you, where you have a pump, I have a medtronic spinal stimulator (my 4th one yet).  I am currently having the same problem in wanting to relocate (actually to TX) and cannot seem to find anyone to is either accepting new patients or who will even deal with my situation.  On to the good news...Right now, I am receiving treatment in Richmond, VA at a group called Sheltering Arms.  They have treated me with the best respect and caring I have ever had.  But, I am very limited to who will treat me for my spine stimulator and that is why I'm looking to relocate.  Not because of the other treatment I get.  In Richmond, the group I was with who handled my medtronics part was far and few between.  A "boy's" club if I can say.  Your situation with the pump, you would have the option of going to NC and at Duke University they deal with the pump more than what I have.  Check out there if you are will to make a move to the east coast.  

     

  • Anonymous
    Anonymous
    Aug. 19, 2008

    Deb- Medtronic is a great resource for MD referrals who manage these pumps. There is also a infusion company that specializes in IT pumps called Basic Home Infusion who is national, this is all they do. They can also be a great resource for you to get referred to a MD. www.basichi.com

     

  • Anonymous
    Bob Meeks
    Apr. 04, 2008

    Hi Deb,

    I have had the Medtronics pump for the past six years.  In the first cople of years, I did get some relief, but nothing for the last three.  The doctor I had at the time refused to change or check the lead into my spine.  So, I went searching for the best doctor that I could find in the South.  Everywhere I called, this doctor's...

    RHMLucky777

    Read More

    Hi Deb,

    I have had the Medtronics pump for the past six years.  In the first cople of years, I did get some relief, but nothing for the last three.  The doctor I had at the time refused to change or check the lead into my spine.  So, I went searching for the best doctor that I could find in the South.  Everywhere I called, this doctor's name up.  I am just a week out of surgery having the pump and lead replaced by Dr. Albert E. Gardner, MD, 725 E. Osceola Street, Stuart, FL  (772) 286-0078.  I travel a 400 mile round trip to get the pump filled.  I got one of the new ones, that you may be able to go almost8 months without filling.  Dr. Gardner, and the surgeon Dr. M.Peebles are the best I have ever had.  I came out of surgery and was able to stand up straight and walk without a walker.  Now, as you know, it is all in getting it regulated where I needed it.  My first doc put me through 2 months of pain to find the right setting.  Dr Gardner starts out a little high and keeps you out of pain until you find what you can handle.  I have Dilaudid in my pump also.

    Stuart, Florida is a nice little town on the Alantic Ocean and the Indian River.  West Palm Beach is a short distance and they have a good VA Hospital, if ther is one of those.  I can't complain about Bay Pines VA I have had excellent service from them. 

    I hope this helps you find a good doctor.

     

  • vickie bouten
    Mar. 21, 2008

    I'm so sorry to hear about all your problems, life must be so frustrating especially when you feel no one is listening or wants to help.  Even if they can't it sure would be nice to hear someone say they want to.

    Where do you plan on moving to?  A lot of us live all over the country and hopefully could point you in the right direction. ...

    RHMLucky777

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    I'm so sorry to hear about all your problems, life must be so frustrating especially when you feel no one is listening or wants to help.  Even if they can't it sure would be nice to hear someone say they want to.

    Where do you plan on moving to?  A lot of us live all over the country and hopefully could point you in the right direction.  I live in Bend Oregon so unless you are moving to central Oregon I don't think I can be much help.  I'm sure as soon as the word goes out that you are looking for help people will start writing to you with all sorts of information.

    I think it would be a good idea to check out some of the teaching hospitals, most big cities (and even som middle sized ones) have them, they look into all sorts of problems people have.  They may be able to help.  I know being a vet you are supposed to go to the VA hospitals but if you can check them out.  You may try the AMA they might be able to point you to a good doctor. 

    I have an inoperable spinal cord tumor that will eventually take my legs, but I keep hoping for the best.

    I've learned a lot of things on this site, the most important being you have to stand up for yourself and if you are unable you have to find an advocate that will help you.  I know that most cities have VA halls go to one or call and see if you can find another vet that will stand with you. I'm not a vet and to be honest didn't and don't support this war, but it is a fact of life and if we can't stand by the people that risked their lives this isn't much of a country. 

    You are a brave soul remember that, it won't get you down (at least all the time) unless you let it.

    If you need anything or just want to talk just email, and keep posting we all care here and will help as much as we can.

    Don't give up

    love vickie

    • Deb
      Deb
      Mar. 21, 2008

      Hi Vicky,

       

      I served in the Navy in 1980-84. I am one of the fortunate ones that God says that the wicked store up for the righteous. That sin is only for a season. So in my files they found some things that connected me 100% after going through 50, then 75 and now 100%. The VA was the only place I had to turn to after I broke C1X3. If I write about something...

      RHMLucky777

      Read More

      Hi Vicky,

       

      I served in the Navy in 1980-84. I am one of the fortunate ones that God says that the wicked store up for the righteous. That sin is only for a season. So in my files they found some things that connected me 100% after going through 50, then 75 and now 100%. The VA was the only place I had to turn to after I broke C1X3. If I write about something more than once it is because I forgot I wrote it. In fact I can't remember what I wrote before. But I am concerned about you. I am sorry to hear about your spinal problem. I will pray for you what did you say there is a tumor?

      To answer your question I am looking to move to Florida some day. 

       

      I am in the middle of a lawsuit that after my neck was broke I was beginning to have seizures and an officer came to my house and was very abusive to make a long story short. He did not treat me in a proffessional way and basically for just meaness put me in a WWF Stronghold and picked me up by the neck and slammed me on the top of the hood at least 10 times. My husband said I looked like I was going to die. Then they lied and said I kicked him and I couldn't have because he was holding me in the air by my neck and I am 5'3 and he was 6'7 I was 115 and he was every bit of 300 or so. I was sent from the jail to the hospital with a sprang back, neck and contusions and a concussion. I have not told my pain management doctor yet. I started going to him shortly after this event. I started having a lot of problems. But since then my MRI and CT on my back are much different and I wish I knew more about the language. What is hypertrophic? what are protrusions. My doctor doesn't tell me much about my back because they don't think I will remember or understand. But it goes like this I had nothing wrong with my back after the injury from MVA except spine fracture C1x3 mild loss of intraverteblral disc posterior osteophyte formaton. That was one year after my accident now after the second accident with the bad cop (by the way I didn't do anything to deserve that treatment I never resisted arrest I just would turn the wrong way and became confused which is typical after a stressful situation. But I did slap a girl that was screaming at me and I paid for that and that is my criminal record. But anyway my new MRI and CT read like this can you help me understand.(plus I had severe myofacial syndrome) actually it could be constant spaticity due to seizures and brain injury Thorasic there is a mild protrusion at the t/8-9 and T/9-10 levels, greater toward the left Lumbar L5-S1 There were some artifactual degradation to the left. Cervical spine C/3-4 The neural formina are patent bilaterally. Disc margin is smooth.  Lateral recesses are unremarkable. Facets are mildly  to moderately hypertrophic. C/4-5 The neural formina are paten bilaterally, Disc margin is smooth with a minmal protrusion, There is moderately severe facet hypertrophy

      C/5-6 There is narrowing of the formania bilaterally related to degenerative chane involving the uncovertebral joint and facet joints with a releatively mild diffuse disc protrusin the central canal  and lateral recesses are adequate Facets ar moderately hypertophic. C/6-7 The formina are paten bilaterally. Disc margin demonstrates a mild diffuse protusion Central canal and lateral recesses are adequat Facets are moderately hypertrophic

      Impression. Bilateral Formanal narrowing, greater to the left, at the c/5-6 level related to a diffuse disc protrusion, again slightly Greater to the left , and principally Dorsal Facet and Legamentous hypertrohy. An earlier one says That basically there is a rotational misalignment of C1 and C2 related to the broken C1 grew back wrong misaligned I should have been in a halo but I was in a Miami J collar basically it is very long and two much to write but it says  that the facet of C1 is only marginally in contact with the facet of C2 and is mainly behind C2 so basically it is now deformed. Do you think that the new problems in the cervical, thorasic, and lumbar resulted from my body being twisted and slammed with my head to the side until rendered unconsious or from the accident in 03

       

      I have no one to talk to so if this is two much I understand

       

      Deb 

    • vickie bouten
      Mar. 21, 2008

      I hope you are suing those cops!  Did anyone see this mistreatment?  I hope so.  I don't care if you had a criminal record or not, if you were not resisting arrest they had no business treating you like that none and I'm sorry for what they did.

      About your MRI's I have no idea.  It sounds like you have major back problems to me...

      RHMLucky777

      Read More

      I hope you are suing those cops!  Did anyone see this mistreatment?  I hope so.  I don't care if you had a criminal record or not, if you were not resisting arrest they had no business treating you like that none and I'm sorry for what they did.

      About your MRI's I have no idea.  It sounds like you have major back problems to me but i don't know anything.  If you don't live in a small town where everyone talks take your MRI's to a specialist preferably a neurosurgeon and ask him to explain in LAYMAN'S terms what is wrong with you and when you go take someone if you can't get a small tape recorder and tape it so you won't forget tell him what you are doing and why.  These doctors need to understand that you have diminished capacity and can't remember things but you are by no means stupid.

      When you have a disability through the VA you can be refered to a Vocational Rehab counseler, I used to work with one when I lived in Reno he was great, if you can go to one and he is good and kind, they will listen to you and explain everything to you maybe he/she can point you in the right direction for the help you need.

      Can your husband go with you to the doctor or a friend?  you need to make an appointment and ask for a referral to a specialist and you want one now and you need an appointment for one right away.  You need help and you need it now, don't let those docs or anyone derail you because you have a problem you are fierce and you know it or you wouldn't be here now.  I know it's hard and sometimes you want to give up but don't let it get you.  Don't beat yourself up for having a bad day or because you need to cry or vent we all have those days, weeks, months :)

      Do you go to church?  I know this may not help but maybe your priest or pastor can help you at least they will listen and they may be able to be some kind of advocate for you in some way.

      I'm sorry I couldn't be of more help but I'm here if you need me, if you want to call and talk email me and I'll give you my number.

      As for myself, in 2003 I was in a small rearender, the car was hurt more than me, but over the next week or so my back was hurting more than usual (I was in a MVA in 1985 and broke most everything, so pain is not new to me) it got so bad I finally went to the doc and had an MRI before I got home from the doc they called and told me they had set up an appointment to see a neurosurgeon as I had a mass in my spine.

      They didn't know what it was at first so I had all the tests for cancer, as I understand that most spinal tumors are secondary tumors that come from another source, when they couldn't find any cancer they did a biopsy, sadly when they did the biopsy while it was non malignant it also can't come out because it will take the use of my legs/bowel/bladder with it.  The tumor started out at T11-L1 and is now at L4, when I moved to Bend Oregon my neuro thought he could get it out without any defecits he was wrong, they figure while it isn't a really fast growing tumor it is growing and I should lose the use of my legs and stuff within a couple of years (I'm banking on them being wrong)  I've accepted that it will happen (at least most of the time) but it gets me down all the same at times.  Now I just take pain meds (and that's a whole story in and of itself!!) everyday and hope they work well enough to be able to move around and do the dishes without crying.  There are a lot of other people out there with a lot worse things wrong with them then me so I try not to dwell to much although it doesn't work everyday.

      Try and have a great day!  It snowed here last night (and I thought it was supposed to be spring) but it's beautiful out right now cold but glorious.

      love Vickie