any words of advice or suggestions?

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jmwasko
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/2/2010 7:55 PM (GMT -7)   
I am new to this site and found it very helpful and many people willing to advise others. I am 28 years old and diagnosed with Degenerative Disc Disease almost 10 years ago.  In this time I have tried treatments such as steriod injections, physical therapy, nucleoplasty and finally a spinal fusion.  My spinal fusion took over two years before it finally fused and even then provided absolutely no relief to pain.  I have seen an anesthesiologist that is also a pain dr who told me about the neurostimulator and a drug pump and said either would be a good option for me.  I decided to go ahead with the neurostimulator, but the more research I've done the more unsure I get.  He didn't tell me there are two types of stimulators and was in and out of the room at my appointment in a matter of minutes.  I don't know what to do because I am so desperate to find an answer that ends this pain.  I can't eat, I can't sleep, I don't enjoy anything anymore.  Does anyone out there have any knowledge on the subject or words of wisdom?  Please help.  Thank you.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/2/2010 7:58 PM (GMT -7)   
First, I would call the doctor's office and explain that you need to talk to the doctor about treatment options-mention the neurostimulator-and ask them to schedule a longer appointment. If your doctor won't do that or won't answer your questions then go to a different doctor.

There will be other people who come by to tell you thier experience with a pain pump and neurostimulator but I haven't used either so I will let them advise you.

jmwasko
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/2/2010 8:31 PM (GMT -7)   
Thank you so very much for your reply. I appreciate your help.

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/2/2010 8:48 PM (GMT -7)   
jmwasko, welcome to the forums!!! Please see the reply straydog left for me regarding pain pumps....it's got fantastic information.


Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 6/2/2010 9:37 PM (GMT -7)   
jmwasko

Welcome to our forum, I think you will find that you have come to the right place, we have several members of our forum that have implanted pain pumps and also several that have implanted stimulators. And then the rest of us that are on various forms of pain medications. You mentioned that you have had a spinal fusion would you like to share with us what area you had the fusion and what type of medications you have had prescribed to treat your pain. Many of us here are in the same boat as you are, and athough we are not doctors and can not fix you we can listen to you and support you and share what advice that we may have to help you. I think that you will find that YOU are not alone in what you are going through! And we all help and support each other and understand what it is like to live with Chronic Pain! I hope that you will stick around and join our family here! I do think that we have the most caring and compassionate group of folks that you will find anywhere on the internet and I hope that you will find that true too!

Again I Welcome YOU!

White Beard

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 6/2/2010 9:50 PM (GMT -7)   
Hi JMWasko,
 
Welcome aboard to Healing Wells's chronic pain forum. I am glad you found us but very sorry to see another person come along battling this crazy life of CP. What really bothers me is you are far too young to to be suffering so and you should be out having a great life. I know, empty words that you have muttered to yourself on more than one occassion I am sure. Heck, I  am almost 57 yrs old and still say it after 20 yrs of this crap. I am sorry though, it just does not seem fair to me that such young people are being afflicted with such awful illnesses and many can't or will not get to experience many things in this life because of their situation. That I have a real problem with. But, I can tell you, you are not alone fighting this battle, there are many of of us right there with you. We all have our own story to tell as to what brought us to where we are today.
 
First off, you really do need to schedule an appt with your PM dr and make sure they understand when scheduling this appt you will be given enough time with the dr to ask your questions and get some asnwers. If you get to the appt and he still rushes in and out, then kick him to the curb and find another PM dr that cares enough to give you the time and care you really need. From what I am gathering here you have reached a point where oral meds have not kept your pain at a decent level and you are needing other tools to help you out. We do have some people on the forum that has the SCS stims and I do hope they will pop on. Please look up to the top of the page and on the right you will see the word search. If you will type in SCS implants, or neurostimulators you will find a wealth of information at your fingertips very fast. The same with the pain pump, type that in and a lot of info will come up. We ask that people do this because for one thing it saves a lot of time, you get the info fast and lets face it, some people get tired of saying the same thing over and over and they may not feel like typing a reply, so please check out the search. Still have questions put them out there for others to see. Its a real crap shoot on whether or not the SCS will work, it does not work for everyone, please keep that in mind. Also, you are given a trial with the SCS to see if it helps or not, you will know during the trial if it helps. With the pain pump it is the same too, you do a trial to see if it lessens your pain.
 
Please keep posting and let us know how things are going along. We also ask new members to check out the forum rules that are listed and this is not expected to be done tonight or tomorrow, just sometime in the future. The administrator of the foum likes to keep all of us rowing this boat in the same direction by setting out guidelines for us. We also have a thread called CP 101, there is some wonderful information in there that may help you out too. You will be amazed at the info that is there. If there is anything anyone here can help you with let us know by posting it here. Take care.
 
 
 

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.


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 6/3/2010 4:37 AM (GMT -7)   
Hey jmwasko , Welcome ! You don't mention what your diet is like , I need hip replacement and its delayed because of a factor in my blood (low t-cells ) so I've been dealing with severe pain for almost 2 years and when I stared eating healthy the pain lessened considerably . I use a juicer for veggies and fruits every day , don't eat red meat , take vitiamins and use probiotics as well .In addition I do anything healthy I can after researching it thoroughly . The doctor who made the reccommedation sounds like he may have been distracted that day , if you don't feel comfortable maybe make a list of questions and see him or another doctor again . But don't forget to bring your list of questions , they really help you be more certain of your choices . Best Of Luck !!!

jmwasko
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/4/2010 8:59 AM (GMT -7)   
Thank you so much to all that sent words of advice and encouragement.  To answer some of the questions asked...I had a fusion at level L5-S1.  The pain in my back is my primary source of intractable pain, but it spreads well into my hips and butt.  It has been so long that I just feel so hopeless sometimes.  I was always positive, passionate, caring, friendly, hard working and just plain happy, but these days I feel like I am a shell of who I was.  I have an incredible family who is so loving, caring and supportive, but I fear that my increasingly negative attitude is only going to push everyone away.  Even more so, I am afraid that my increasingly negative attitude means I am giving up and I can not submit, I must keep pushing on.  I couldn't ask for a better support system, I have a husband, father, mother and 2 sisters (not to mention a large extended family) that would do anything to help, but as much as they support and care for me no one understands what I am going through and how depressed I have truly become.  But, I digress back to the questions at hand.  I have tried many treatments both invasive and non invasive.  I have done 2 rounds of 3 (6 total) steroid injections and another type of epidural injection that is similar to what I had done previously, but the main difference was the area they injected the steriods.  I think it may have been called the facet area, but don't quote me on that.  I have tried numerous rounds of physical therapy.  I had nucleoplasty.  Then finally a spinal fusion.  I've done so many different treatments and seen so many different dr's for first, second, third, forth and so on opinions that I'm sure I can't list everything.  Heck, I can't even remember everything.  I have tried oral pain medications, which in the beginning would take away a very good portion of my pain, but as the years past and tolerance built I got no relief.  I have tried Ibuprofen, Lortab, Percocet and Methadone.  They use to take care of my pain enough so that I could get along, but as the years past and the tolerance built they wouldn't even take the edge off of my pain.  I hope some of this info helps, but I must run for now.  I will check in later.  To all....Have a great day.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 6/4/2010 1:58 PM (GMT -7)   
JM, is most of your pain nerve pain? Have you been tried on any of these meds for nerve pain, Lyrica, Cymbalta or Neurotin?
 

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.


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 6/4/2010 3:22 PM (GMT -7)   
Jmwasko!
welcome and sorry to meet you under these circumstances. I have a neurostimulator implanted in my forehead for nerve pain. I have to agree with whats been said and suggest you make another appointment with your pain doc and get all the information you need before you make any decision as important as having a stim implanted. I got mine 5 years ago now and have to say that if I knew then what I know now , I never would have gotten it. I was at the point of "trying anything" because I was in so much pain and my old pain doc was willing to have a new patient to try his new invention so I went ahead. Aside from the fact that its having something foreign in your body, you have to consider the prognosis, the cost( I'm sure a member who just had that surgery cancelled for the 2nd time may chime in, but its almost impossible to get insurance to pay for it and the cost is huge. 5 years ago mine was $82,000 and insurance refused to pay AFTER I had the surgery saying it was experimental even though we got the "OK" before hand as it was a same day surgery.)
I think implants need to be the final option. There are many pain meds as well as all the nerve pain meds mentioned. There may still be one out there and finding the right "cocktail" might do the trick. I can only suggest you not rush into anything more invasive until you are completely satisfied that its the only option to go. Please continue writing and reading. You've found the best group of folks here and we'll be here for you. Lord knows they've put up with my negative moods and helped get through them.
Stick around
catahoula
sick and tired of being sick and tired

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