Morphine Pump help needed....

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2010tlo
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/28/2010 11:13 AM (GMT -7)   
I am in need of help.  My mother suffers from failed back syndrome.  She has had 3 surgeries at her L4-L5 area and now as a result of an automobile accident has herniations in her thorasic spine and cervical spine.  Surgery isn't an option at this time for the thorasic or cervical due to the high probability of death.  This is what surgeons have said and won't operate.  As a result of the compounded issues and immense pain, she decided to have a morphine pump installed.  She went in March 2009 for the trial, which was only overnight and I have read in many different forums that people have trials for 5 days.  Is 5 days the proper trial period or is it to each his own?  The trial was great!  She felt amazing, she could walk without having terrible pains shooting down her legs and feet.  The only pain she had was muscle pain from all the years of that pain being masked by the other problems.  She went back in July 2009 to have the pump installed and it's been a nightmare ever since.  Pretty much since the day she had it installed, she has not been able to stand up straight.  She is very hunched over and looking at the floor.  Also, the pain has not gone away and now her spine is poking out at the installation site.  Her Dr put her on oral morphine as well and we had no idea, but she is allergic to oral morphine, which we found out about 3 months ago.  It makes her sick to her stomach and she can't eat, she lost about 20lbs.  Also, she was very unsteady all the time and had fallen many times.  Once in Nov she fell outside and landed on her face and now has a permanent scar from the patch of skin on her cheek that was scraped off.  But like I said the Dr finally took her off the oral morphine about 3 months ago when I went with her to see him and told him all the things that were happening to her and how they weren't acceptable.  He then mentioned that it could be because of the oral morphine. Since she has been off the oral morphine, she hasn't fallen and has actually been eating.  Thank god.  So, my problem now is, I can't find ANYONE who will even look at her to give a second opinion on her pump installation.  Her current Dr says everything is fine, but why wouldn't he say that, he's doesn't want to get slammed with a lawsuit.  But honestly she would just like the opportunity to have it removed if it is in fact causing the additional problems (not standing up straight and her spine is poking thru at the installation site) she is having.  I have called the Cleveland Clinic and they have one specialist there that deals with these things, however he won't work with anyone who has had a pump installed by anyone else.  I have called the Mayo Clinic but was informed that 2 Drs had just left them and they were rescheduling all their appts and nothing was available until the end of Nov 2010, but they weren't accepting any new patients anyways.  Can anyone help me or give some advice on who to contact.  My mother is only 52 and I've just applied to get her a hoveround chair because she is having such trouble standing up straight and walking.  We are in Florida as well.    PLEASE HELP  confused

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 6/28/2010 1:38 PM (GMT -7)   
2010 I posted a reply to you on the other thread that you posted on, I hope you saw it. Also, you may want to do a search here at the forum, its at the top right of the page and type in pain pumps. You should get a lot of info to pop up. Perhaps one of the other members lives in Florida. There are a few of us here with pumps.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 6/28/2010 9:19 PM (GMT -7)   
Straydog is right, there are many threads on HW about pain pumps.   Use the HW search feature to find them.  Another good resource is a Yahoo site called Pumpsters that deals strictly with intrathecal pumps and pump related problems. You have to apply to join and the moderator sometimes takes awhile to OK your request. It is well worth the wait, as they have extensive files of pumps, all kings of pump problems and pump medications.

Don't get so hung up about the Cleveland Clinic. I live very close to the Clinic had my pump inplanted there.  I ended up receiving much better care with an independant local doctor. Because of the high volume of patients, it is easy to become just another number at these big institutions and have to wait long periods of time to get an appointment or a follow-up appointment. A well qualified local pain specialist can provide you with good care and immediate attention should you need medication changes, dose, and or rate changes. Some of the most innovative pain specialists have trained at these mega institutions, but have gone on to establish their own practices. I am not sure how far you are from either the Clinic or Mayo, but how would you mother ever get to their offices for minor adjustments or the tweaking of pump rates. There are times that rather than getting one huge dose adjustment and risk receiving an overdose of medication, I will have smalled adjustments over several days until I acheive just the right amount of medication.  You would never have this option if you had to travel any distance of care.
 
I think Pumpsters might maintain on off site list of  recommended pain specialists. Between that and thoroughly researching out all of the pain specialist in your surrounding area you might be able to find just the right one for your mother.  I know some pain specialist can be really picky and only treat pump patients where they and impanted the pump.  Believe me, there are great doctors out there willing to treat patient with pre-exisitng pumps.  I found my doctor by talking with the Metronic Pump representative for my area and asking him for recommendations.  Since he works with all of the pain doctors, he knows the personalities and qualifications.  He help me find a winner and I receive much better care than I received at two of those mega-institutions.

Good luck in your search to find a good doctor.


Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, congestive heart failure, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator). 

 

 


Post Edited (Stella Marie) : 6/29/2010 5:20:08 PM (GMT-6)


2010tlo
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/29/2010 9:16 AM (GMT -7)   
Thank you Straydog and Stella!  I greatly appreciate this information.  I completely agree with Stella about tweaking the dosage.  It just wouldn't be feasable to go to Cleveland (1.5hr away) or Mayo (4.5hrs) away for this.  However, this really has been offered by her current physician to make adjustments.  I believe she asked him once about it because she just isn't getting relief like she had when she had the trial done.  His response, according to my mom, was "I don't think you're in that much pain". 
 
Thank you again!  I will continue to look and find something that is right for my mother.  She is my best friend and I love her dearly and I'm not going to let her continue to suffer.  I will keep you posted! :-)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 6/29/2010 12:43 PM (GMT -7)   
Please do let us know how things go for your mom. She is lucky to have you advocating on her behalf. Try to urge your mom to come here and talk, nothing we know better and thats pain.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

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