Chronic Pain & medtronic Neurostimulator for thoracic pain??

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No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 9/23/2011 9:20 PM (GMT -6)   
Hello everyone,

I'm new to this site, but have been suffering from chronic back pain forever. I'm currently on too much narcotic "pain killers" that don't seem to be effective. I suffer from back pain related to a work injury that has messed up my entire back. I have pain in my upper, middle & lower back. I recently had a 2- level cervical fusion. I'm fighting with Worker's Comp. to have a 4-level lumbar fusion. I've tried everything and my doctor believes this is necessary.

The lumbar fusion will hopefully help with my lower back but won't touch my middle (thoracic) back. I use a tens unit right now to help with the pain, but I have it on the max level and wear it all day and night with less and less relief!

DOES ANYONE KNOW IF A MEDTRONIC NEUROSTIMULATOR CAN HELP WITH THE PAIN IN MY THORACIC, LIKE MY TENS UNIT, BUT STRONGER????

I hope someone can help advise me if a neurostimulator has been used specifically for the middle back? My doctors says the stimulators are only used for leg pain? I also have a messed up bladder (I'm a train wreck!) and my Urologist has recommended me for an Interstim Therapy to help with that issue. Besides the 4-level fusion, I'm also hoping this interstim therapy will help with the pain in my lumbar area as well? I welcome any and all input. I've reached my breaking point and I'm too tired of the endless pain!

PLEASE HELP!

Thanks,

Charles

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 9/24/2011 7:29 AM (GMT -6)   
 
          Good morning Charles!
 
                 Welcome to the Chronic Pain Forum! Were sorry to hear of your back problems, but I can asure you that you have found a great support group here.
 
        May I ask when you had the lumbar fusion? Also, can you tell us which pain meds you are on, and are you seeing a PM (Pain Management Dr)?
 
      I can tell you that I had a failed lumbar back surgery, and have suffered moderate to severe pain before and after the surgery. I had a double lumbar fusion done on my L4-L5, L5-S1. Recently my Dr added a new med, that has been recently approved for lower back pain. It is a depression med called Cymbalta, and to date it has worked wonders for me. You might want to ask your Dr about it.
 
      It has allowed me to reduce my BT meds (Percocet), and I'm greatful for that, as I hate to take pain meds.
  I believe your Dr has given you some wong information about the stimulator being used only for leg pain. However, I'm not a Dr, nor are any of us here, but I do know of several members that have them for neck pain and other types of pain as well.
 
     Again, ..."Welcome" and enjoy the forum!
 
       SE wink
       
 
          
Moderator Chronic Pain Forum

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CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/24/2011 9:18 AM (GMT -6)   
Hi Charles, and welcome

Screaming Eagle is quite correct. Although more commonly used for lower back and leg pain, the spinal cord stimulator is also used for neck and arm pain. I don't know of anyone who has used it for thoracic spinal pain, but I don't see why it couldn't be so.

Laura

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 9/24/2011 9:21 PM (GMT -6)   
Screaming Eagle & CRPSPatient thanks for your quick replies. I had a cervical 2-level fusion in July and was supposed to have a 4-level lumbar fusion about two weeks ago, but my health insurance denied the surgery. According to my Dr., my health insurance company has an outdated protocol sheet that determines if the surgery is necessary or not. They have no reason to update their protocol sheets since the are saving a boat load of money. Remember it's not about the quality of life, but the money.

I injured my back in a work related incident, which is another story for another time. My Worker's Comp. Case is currently in litigation. I was injured on Sept. 28, 2010 & terminated from my job on June 12, 2011.

I tried Cymbalta, but it didn't agree with me...made me feel empty inside and didn't help muc with the pain. I'm now on Oxycodone, Fentanyl patch 75 mcg, & Savella (nerve pain).

I have pain in my lumbar, which travels down my left leg. I asked about the spinal cord stimulator before and was told I don't qualify?? I think my doctor's office/practice typically reserves the neurostimulator for failed surgeries. I will be switching health insurance companies in November, so I am hoping that either my case is settled and my surgeries will be paid for or my new insurance will pay for it, unless there is a Pre-existing clause???

I have some time, since next month I should be having a surgery for my bladder issue. My Urologist wants me to take care of my bladder first, before I have the major lumbar fusion surgeries. I am going to get a second opinion about the neurostimulator for my thoracic pain. I also don't see why it couldn't help with the pain in the middle of my back. My tens unit helps to a limited degree and even my Physical Therapist thinks it's a good idea! I'm trying to get off these pain meds. They are almost as bad as the pain, which I still have. The worse part is how freaking exhausted I am after taking them!

I would like to hear from other members to this site who have a neurostimulator implant. My Urologist is considering me for a Interstim Therapy, which is a neurostimulator for the bladder. I was hoping that it would help reduce the pain in my lumbar while also helping with my bladder problems.

Thanks again for your replies and support!

Have a great week!

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 9/24/2011 11:21 PM (GMT -6)   
cfit60 Welcome to Healing Well Chronic Pain Forum, I do hope that you cand get a new insurance company and they will cover taking care of your lower back. I to have problems with my thoracic spine, and doctors just will not touch this part of your spine unless it causes paralysis, and even then if is really iffy to get it worked on. I know this ended my nursing career and pur me on disability, and I am treated with pain meds. I have not heard of anyone getting a stimulator for this part of the spine. I found that only certain doctors that are specifically trained, will even give epidural steroid injections in the thoracic spine. It is indeed a very touchy area. I know this is not much help to you, I do empathize with you. And I do hope you can get some relief from your pain!

Good Luck to you

White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 9/28/2011 9:59 PM (GMT -6)   
Hello everyone,
 
I just wanted to let you all know that I have an appt. with another Pain Management doctor who is trained in the use of Spinal Cord Stimulators (SCS).  I can't wait for my own Pain Management Doctor to "research" the possibility of me being a candidate for the SCS.  I have to be my own best advocate.  I don't have much confidence in my current Pain doctor to find out if SCS will work for me. 
 
I did call one of the companies that make a SCS and they said the product has been used before to treat thoracic pain...you just need to adjust the leads in the correct positions along the spinal column.  Knowing this, I'm just looking for a doctor who is willing to setup a trial period. 
 
During the trial period of 2 to 7 days a temporary wire is placed in your back and attached to an external battery operated stimulator control box.  You use it for whatever number of days your doctor sets up and keep a diary.  At the end of the trial period you discuss the results with your doctor and if it helps to reduce your pain by at least 50% then you are given the green light for a permanent implanted SCS.  The surgery is a out-patient surgery and it can be either removed or turned off if later on it doesn't help anymore with the pain.  Since I use an external Tens Unit to help with my pain, I feel the SCS can help me.  I will let you all know what happens with my doctor's appt.  Meanwhile I hope everyone is having good, pain free days!

hippy56
New Member


Date Joined Sep 2011
Total Posts : 5
   Posted 9/28/2011 11:13 PM (GMT -6)   
Hi cfit60

when you check out the MEDTRONIC PUMP, be sure to ask lots of questions.
I had one placed in 1998 and I ended up with a severe case of Encephalitis from an infection arising where the catheter was placed. I spent 7 weeks on life support, so just make sure you know the risks.. I didn't think of this so didn't ask.

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 10/13/2011 10:54 PM (GMT -6)   
Hello everyone,

I've been busy these past couple of weeks. I was so fed-up with my pain management doctor, who automatically shot down my inquiry of the Spinal Cord Stimulator (SCS). Every-time I see him, he keeps throwing different pain meds at me and they don't work, especially if I do anything involving activity beyond my front yard! I have come to hate and dread the weekends, because that's when my wife if off work and we go out shopping or doing house work and repairs. I know, I feel horrible saying this, because I love my wife and I want to spend all my time with her, but I always end up in horrific pain!

Anyways, I decided to be my own best advocate and made an appointment with another pain doctor who specializes in (SCS). I wanted a second opinion and this doctor feels I am an excellent candidate for a (SCS). I showed him my TENS Unit that I wear whenever I know I'm going for a long car ride, shopping with my wife or working around the house. He didn't really know much about it, which surprised me. I told him that I've used it for about 3 years and it no longer masks the pain, but it still helps somewhat when combined with my pain meds. He recommended I see a Neurologist who specializes in a Peripheral Nerve Stimulator (PNS), which is similar to my TENS Unit, but it is implanted under the skin and along the spinal column and works bilaterally with the pain.

I also saw my pain management doctor a few days ago. You guessed it, he switched my pain meds around again. However, this was mostly because I told him I didn't like the side affects from the Roxicodone, which caused me to forget A LOT and made me feel comatose. Besides that, I was still having pain and I just don't want to take any narcotics!

My pain management doctor told me he had done his homework (he knew I'm not too happy with him) regarding (SCS) and a Drug Pump and feels I am a candidate for either one. I had also read up on this Drug Pump and felt it was much, much better than popping pills everyday for the rest of my life.

As a reminder, my thoracic spine is equally a mess and has been increasingly painful no matter what I do. In July I had a 2-level fusion in my Cervical. The operation helped to reduce the frequency and intensity of pain and numbness that went down my arms and into my fingers where I had numbness. I still experience the pain and numbness, but not as often. Normally, when/if I sleep, specifically on my back, I wake up to both arms in slight pain and with disturbing numbness in my hands/fingers. Within about an hour the pain and numbness tend to go away. Imagine yourself waking up and not able to feel your hands or fingers...that's the worst part of my cervical issues! My Orthopedic Surgeon and I are waiting for my insurance to get sorted out so he can perform a 4-level fusion on my Lumbar. I was told that rarely does anyone operate on the thoracic spine and so I will always have this incredible pain in my back. This is why I am searching for another way to help with my back pain. I'm hopeful the Lumbar fusion will take care of that portion of my pain and left leg weakness, but nothing else will be done to help with my mid back pain.

Today I had my appointment with this Neurologist to discuss the possibility of me being a candidate for the Peripheral Nerve Stimulator. He told me that the (PNS) is "off label" meaning not yet FDA approved, so I knew right then that Worker's Comp. would never approve it. The doctor went on to say he didn't think I would be a good candidate for the (PNS), but he would still do the test phase. This confused me, but then I realized I'm not always looked at as a person, but sometimes as a cash cow. I mean, if he didn't think I would be a good candidate, why would he even consider putting me through a test phase by sticking temporary leads in me for a few days? He also managed to confuse me about the benefits of having a Drug Pump. He said that if I had the Drug Pump I would turn into a drug addict...? The reason why I am considering the Drug Pump is so I can stop taking all these massive daily doses of oral pain pills! The Drug Pump allows for 1/10 the strength of meds I'm currently on, because it goes straight to the spinal cord and brain. Which is the lesser of two evils?

When my pain gets to be a 10+ I want to blow my brains out! If I had my gun and the "10" pain at the same time I wouldn't hesitate to end my pain! I love my wife and for her I am focused and centered on living-on despite my pain, so I put my gun away where I no longer have easy access to it. I don't think about death or killing myself everyday, just when the pain gets to be unbearable. Therefore I don't consider myself to be suicidal. Only someone who unfortunately feels the same level of pain can truly understand what I mean or where I'm coming from. Sometimes I wish I had the ability to share my pain with others who dare judge me. Like the character from the movie "Powder" for different reasons I want different people to touch my arm and feel what a "10" feels like.

Well, tomorrow I have an appointment with yet another pain management specialist to discuss the Drug Pump option. I hope he can help explain the pros and cons of having a Drug Pump! I'll be sure to let you know what he says.

Meanwhile, next Monday I am having an operation to help me with my bladder disorder. I'm having permanent leads implanted in my sciatic nerve and attached to an external stimulator device, which is similar to a (SCS) but it's called an "Interstim Therapy". I have had a problem for years where I am unable to completely void when I have to urinate. I can drink 2 cups of coffee and within an hour I will urinate 3 to 8 times! I know where every bathroom is in town. Whenever I go to the store I head straight for the bathroom. As a result and a way to help deal with and somewhat control this I tend to limit the amount of fluids I drink each day. The Neurologist told me i don't need the Interstim Therapy, because my urinary retention was caused by all the narcotic meds I'm on. It's true, the meds can certainly cause bladder issues, but I have had this problem long before my back problems started. He asked me if my Urologist knew I was taking narcotics for my pain...of course she knows what medication I'm taking! Anyways, I'll wear the external stimulator for two weeks and then on October 31, if the test phase was successful in improving my voiding problems by at least 50% I will have the final surgery where I'll have the permanent stimulator/battery implanted in me. I pray this is successful so I can finally be done with at least this troublesome medical issue! It's been so many years since I voided normally, I forgot what it feels like to not need the bathroom within arms reach. Besides taking Flomax everyday, I've had to use a catheter to empty my bladder and I've had multiple UTI's. With the Interstim I won't need to take Flomax everyday, which would be great considering that if I forget to take it , in just a few hours I won't be able to void!

As I said, I've been very busy these past few weeks. I apologize for the novel...it's now 1:00am and I can't sleep, so I thought I'd gather my thoughts and experiences on paper to share with my fellow pain-pals. I hope and pray you are all doing far better than me. Have a pain free and blessed day!

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 10/14/2011 9:11 PM (GMT -6)   
Hello again,
 
I'll make this one quick...  I met with another Pain Management Doctor who actually took his time and listened to me.  He said I am an excellent candidate for the Drug Pump Therapy.  I'm very excited and hopeful that this will help improve my chronic pain.  If all goes well I will undergo a two to three day stay in the hospital sometime in November where they will place a catheter in my spinal column and observe me while I am given a test dose.  With any luck the test phase will be positive and I will then have a permanent drug pump implanted a few days later.  I am interested in your experiences and/or opinions regarding the Drug Pump treatment. 
 
Currently the pain meds I'm on now have destroyed my short term memory to the point where as soon as I left the doctor's office I forgot what I needed to do next.  I was embarrassed and baffled when I returned to the office and had to wait an additional 20 minutes to speak with the nurse and wrote down the information.  With the Pump I will have 10 times less narcotics in my system and the side effects like my memory loss will be eliminated.
 
What do you think about the Drug Pump? 

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 10/21/2011 6:18 PM (GMT -6)   
Hello Everyone,

Well, I had my mandatory Psych eval. and was approved for the Drug Pump! I'm not too sure if I've been deemed "crazy" yet. I had to take a few brain draining tests and the results are going to be mailed to me, YAY!

Anyways, now I am waiting for my health insurance's approval and then I can or won't be scheduled for the initial trial phase for the Drug Pump. Should I be approved, I'm told that I will have to be in the hosptial from one to four days. I'll explain more as I learn more about the procedure and I pray my insurance company won't be a scrooge and deny my treatment!

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/21/2011 7:44 PM (GMT -6)   
Hello Charles, I see that everyone has given you great advice and different ways to try to deal with everything.  I dont see any reason a neurostim would not work for you no matter where the pain is, the lead wires can be but where they are needed.  I see you may be opting for a pump, that is also a good way to go.  It may very well be even better than the neurostim.
 
I am concerned about your comment about the pain being a 10+ and the whole gun thing.  I know that I dont know you at all, but if you have those type of thoughts, please think about talking to a professional concerning this.  Also you might also be a good candidate for Cymbalta, I have heard great things about it from SE, he has been able to cut down on his breakthrough meds and it has really made a difference for him.  Believe me there are always alternatives to turn to.  Please do not but your family through the horror of the gun thing.  Its not fair to them.  I am sure if you tell your wife how badly it hurts to spend that much time up and around, she would be glad to somehow change the way you spend time together.  Maybe just dont try to do everything in one day, break it up, do  a little one day and so on and so on.
 
I hope you find what you need to help you work through your pain, we all know how awful it is to have to live with cp, but its what we do, we live with it.
 
Ask Laura, the young woman with CRPS, this young lady goes thru more hell in one hour than most of us go thru in an entire day, but the point is she does it, everyday in and out of the hospital week in and week out.  She makes me feel like I have nothing to whine about, the thing is, no matter how bad off you are, there  is always someone else out there that is suffering just as bad if not worse than you are.  She is always the most upbeat young lady I have had the pleasure of getting to know.
 
Good luck to you and take care,
 
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 10/21/2011 8:56 PM (GMT -6)   
Kathy,

Thanks for your comments. Don't worry about me blowing my brains out...it was a poor way of expressing how bad the pain gets, but everyone here knows what I mean. It's just a way of explaining to others who are fortunate enough not to truly understand what pain at a 10...10+ feels like. I get upset when someone in good health tells me they understand how I feel or knows what I'm going thru, etc. I've used this explanation with my doctors, because even though I love life and don't want to die, when I'm hit with that level of pain I know I wouldn't hesitate to end the pain.

I've tried Cymbalta...not for me thanks! I'm looking forward to the drug pump trial. I've done a lot of research and based on how messed up my entire back is...the drug pump would be much more effective in covering the pain than a SCS would.

I would like to believe that everyone who is a member of this awesome website realizes that there is always someone far worse off than they are. I've heard that enough from family and friends and just about everyone else. I'm happy to have shoes while another is happy to have feet and yet another is just happy he can roll around in a wheelchair. I say this, because know this is a fact. However, I like to think that among all of us who suffer CP, we can leave that message for our healthy counterparts to feel better telling us we are far better off than somoeone else.

Here we can share our personal experiences and different methods we've found to help deal with our pain. For example, I am currently in the middle of a trial phase for an Interstim Therapy, which is a Meditronic implant therapy to help those of use who suffer from Urological Issues. Besides my back problems, I suffer from Chronic Urinary Retention, Urgency, Over Active Bladder, etc. I had surgery on October 17, 2011 where my Urologist put permanent leads inside my sciatic area and around my bladder. I have a test stimulator that the leads are attached to. I will wear this outside my body for two weeks and on October 31, 2011 I'm scheduled to have the permanent stimulator/ battery implanted, if the trial phase is successful and so far it seems to be working! So, should anyone want to know what to expect from the Interstim Therapy Test phase, I can help them by sharing my experience. So far, no one has come forward to share their experiences with a Drug Pump, so if my Insurance approves it, I can deal with it and also be able to share that experience with others as well. By the time all my surgeries are done I will be a bionic man! I know that I will always have sme degree of daily pain and never completely be off pain meds, but these Therapys offer some hope of having less pain and fewer narcotics and their side effects t deal with. So, again...here in this site I like to think everyone knows someone else is hurting more than they are, but we put that aside and focus on helping others...even if it's just reading about their stories, experiences and offering them encouragement! I hope everyone who finds their way to this website finds love and support from those who share their pain and suffering together we can learn how to cope with LIFE!

I'm not super religious, but I always offer my prayers to those who suffer, especially from CP. Keep the fight clean and honest and karma will be on your side! Time for my meds...

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/22/2011 2:02 PM (GMT -6)   
Hey Charles, I am not religious at all, I am however very spritual, I am a strong believer in karma, I also long ago got sick and tired of my family, in particular my mother telling me, "its in your head, if you just got up and stopped feeling sorry for yourself, you would be fine", what a wonderful thing to hear from your own mother.  Until the day she passed away, she never believed I was in as much pain as I was.
 
It took me a very long time to recover from the fact that she was calling me a liar, hypocontriac, and every other negative thing she could think of.  My sister (who is older than me) who my mother believed whatever she said, my sister who had read my mri's told her how bad my back was, still it was something that I had done, some reason I wanted to just "lay around feeling sorry for myself".  I went through hell, stopping taking my meds, going thru withdrawal, just to prove to myself how very much pain I was in.  I no longer do any of those things, I had to learn to tune her out completely.  I only talked to her when I had to.  I am sorry and ashamed to say that when she passed ( and it was very quickly, stroke then gone) I was relieved.  I have even forgiven myself for that.
 
I no longer feel the need to prove to anyone how much I hurt, let them walk in my shoes for 1 hour, then tell me how they feel.  I only need to keep doing what I do to make my life and comfortable as I can, that means taking my meds, 3xday each day for the rest of my life, and what ever else I need to do, I will do and I will not feel bad about doing it.
 
Sorry, I didnt mean to come off like the people who say, well someone else is worse, I just was upset about the whole gun thing.  I apologize, I wish you well and hope everything turn out well for you.
 
Good luck and take care,
 
Kat
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 10/22/2011 11:01 PM (GMT -6)   
Kat,

No need to apologize, as I said before we are here to support each other in whatever way we can. I am sorry to hear about your Mother's passing and the relationship you had with her. I'm sure every single one of us who suffer from CP have "Nay-Sayers" who think we are exaggerating our level of pain or that we are in no pain at all. What, besides oral meds are you takng or dong to help decrease your pain? Have you considered the Drug Pump or other SCS therapy?

I take pain meds every four hours and even still I have pain that can't seem to be touched. I'm excited about the potential of the Drug Pump, although I am also realistic and know that I'll always have some degree of pain and will never completely be without pain meds.

With the large dosage of pain meds I'm on now I am always near comatose! I hate it! My wife takes it personally when I can barely keep my eyes open! It seems like I have to tell her every freakin day that my pain meds are causing me to be exhausted. She keeps getting confused between what I am asking her and what. Am telling her, especially when I tell her I need to lay down or take a nap. It's been a little over a year since my work "accident" and my wife is struggling to recognize that I've since changed. I used to be strong and active and the one who carried the groceries, picked up/moved furniture, took out the garbage and did house repairs like fixing cracked floor tiles and toilets. It also took me some time to realize that I can no longer do these things. We still argue about these things, but in the end she stops nagging me. During these times I feel terrible and completely useless! Just today we went food shopping and just 15 minutes into it I was in incredible pain and exhausted to the point I felt I would pass out. I made my way to the store's Pharmacy waiting area where I always end up waiting for her to finish.

Of course I'm not so useless when it comes to paying for the food, hahaha! I laugh, because I lost my job back in June and while my Worker's Comp Case is still in litigation I am not collecting a paycheck. We are living off her salary and she loans me the money to pay our bills. Once I finally get a settlement I will pay her back. Ahhhhh marriage, what a treat! After shopping we had other things to do, which continued to increase my pain level. Finally she takes a moment and looks into my watery eyes and sees my pain. Only then does she give me permission to lay down and take a short, short nap. I'm not mad at her, even when half way through my "nap" she comes in and wakes me to tell me something of little importance. I get it, she works all week and doesn't get a chance to spend a lot of time with me until the weekends. Every weekend I continue to push myself to keep my eyes open and give her my doped up attention. It's never enough though... As usual I've completely gone off on a pointless rant, but it's good for me to get it out and not hold it in. I wonder if I'm alone with how my spouse feels and treats/deals with my CP?

Kat I am thinking of you and hoping you are finding your pain has diminished and is tolerable. Let me know if you have considered a Drug Pump or a SCS? No one deserves to experience pain at our level. I hope you have someone special in your life who loves and supports you. As always, I look forward to a response to my novels and hope other CP sufferers can help me by sharing their thoughts and experiences with the Drug Pump or other SCS???

Take care and God Bless!

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/23/2011 1:25 PM (GMT -6)   
Charles, thank you for your kind words, I know how you feel about things that have suddenley gone out of your control.
 
As to the medtronic neurostim, I have one already, unfortunatley it is just sitting there doing nothing and will never be able to do anything.  In May of 2009 I had it installed, after a month of trying to charge it, it was found to be installed to deep (my doctor is human after all).  So I had a second surgery in July, but sadly the scar tissue made it impossible to charge the stim, so I now have a useless stim, with leads going down both my legs, and the other side of my back do nothing.
 
I had allowed the medtronics salesman to convince me to get this unit instead of the pump, which is what I wanted to begin with, but he kept telling me "you will have to keep getting increases in your meds every so often", well no ..it, I will have to have my meds increased no matter how they are given to me.  My bad, I should have stuck to my original first thought, which was the pump.  So I will have no more surgery unless I decide to have this useless thing removed from my back.
 
In the mean time, I am blessed, I have a great pm doctor, who gladly increases my meds when we both feel the need to, as in now, when winter in coming upon us.  And I am also blessed, for the time being, my pain is at least most times at a level that is tolerable.  When its not, I stay in bed.  I was also blessed 12 years ago, when after being turned down twice by SSI, I found a lawyer who only did SS cases, in no time I was awarded everything from the first time I had applied, he signed me up for medicare, and sent me back two thousand dollars the SS had overpaid him.  I also recieved a check for my youngest daughter until she turned 18.
 
So, I have been blessed in many ways since this nightmare of cp started.  I will pray that things go well with you and I am so glad you chose the pump.  I wish I had.  But so be it.
 
Good luck to you and take care, I will be thinking of you and praying for the very best for you.
 
Kat
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 10/23/2011 2:56 PM (GMT -6)   
Kat,

The Interstim Therapy is working well and I know I will have the permanent implant on October 31. I am also waiting for insurance approval and a set date to begin my pump trial. I'm wondering if I have a similar SCS like device in my lumbar area and qualify to also have a pump...why wouldn't yo still be able to have the Drug Pump implant? Please don't use age as the reason...you are never too old to have a chance of living with less CP!

I hope you are doing well,

Where is everyone else?

Charles

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/23/2011 6:28 PM (GMT -6)   
Hi Charles, believe me age is not an issue, I am 58 years young, and I worked very hard at reaching everyone of those years.  I my have the pump implanted at some point, I dont know.  I will have to get more information, and my feelings about the medtronics personnel is not very good at this point, they remind me of used car salesmen.  I am sorry, I am sure there a plenty of used car salesmen and women who are wonderful people.
 
So, I will think about it for a while, and then see how I feel.  In the mean time, good luck, I think you will do great and you have a great attitude about the whole thing, thats half the battle.
 
What other people? dont you know its just you and me? lol
 
Ok, enough kidding, again good luck, let us know how it goes, I truly hope its a big help to you as you are suffering so much, its time for a break, its time for you to live and feel good doing it.
 
Take care,
 
Kat
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 10/23/2011 9:40 PM (GMT -6)   
Kat,

I love the quick responses....I keep checking my email to see if you or others have replied. I don't have family where I live and have found that I don't have but less than a handful of "friends". All but one of them are much to busy living their lives to take time out to help me through these dark times. Actually, even if I had family nearby, I wouldn't burden them with my medical issues, because there is nothing they can do besides worry about me. I've had several surgeries in the past couple of years and have never told my family about it besides of course my wife, because they live too far away and again all they could do is worry for me, which would just add to my stress.

Anyways, I will be sure to keep you informed every step of the way through my Drug Pump trial, so it may help you decide whether or not it is something you are willing to endure. I don't mind being a lab rat, Hahahaha!

Later,

Charles

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 10/23/2011 11:24 PM (GMT -6)   
Charles,
Forgive me for not reading all your posts..boy oh boy, but I do understand your pain very much. How you refferred to the movie "powder" to explain how badly you want people to understand..I actually got to the point where the pain was so bad I tried ..and failed ..thank god. I do know this, I was on 200mg of. Fentenyl and 30mg oxyxodone for break thru and after starting anti-depressants my pain was cut in half ..so were my meds. The brain is funny, your emotions are connected to your pain. So I try to watch my anxiety level and any depression because lets face it being in pain all the time is depressing! I really hope the pump works for you, that is my next ordeal, please keep us all posted on everything please! Good luck and thinking of you..
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries,dx,fibromyalgia.42 degree scoliosis,pelvic tilt and neurological impingement, complete loss of neck curve and degenerative disc dx

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 10/23/2011 11:27 PM (GMT -6)   
P.s. Charles hope to see you in the chat rooms in the evenings ..
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries,dx,fibromyalgia.42 degree scoliosis,pelvic tilt and neurological impingement, complete loss of neck curve and degenerative disc dx

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 10/24/2011 12:29 PM (GMT -6)   
Wow, last night was rough, my pain was a 10 and I just couldn't sleep. I felt bad for my wife, because I kept disturbing her sleep. When this happens, I try to go somewhere else in the house, but my wife gets even more upset with me. Hahaha, I can't win! I finally went unconscious and managed to sleep in most of the morning. Theres a huge difference between gong to sleep and going unconscious...the pain keeps me up until my body can't stand it anymore and I finally go unconscious!

The worst part I think is the next day, like now where I stayed in bed most of the morning and I feel like crap still. I haven't done anything and it's now almost 2:30pm. No matter how much sleep I manage to get, I'm still too exhausted to during the days and by the time my wife gets home from work I need to la down for a freakin nap!

I'd feel much better if I could take a shower, but I can't for the two weeks I'm dong this Interstim Therapy Trial! It's a bit rediculuos since it has already proven to work for me and I know I will go forward with the permanent implant. Most doctors typically test their patients for just 3 to 7 days before deciding if the permanent implant is the right decision for that patient. I guess my doctor enjoys it when her patients smell like cat litter, hahaha!

Well, I hope tonight is a better night for me. Sometimes I go through a week of horrible pain before I can almost sleep normal. At least I am not having to wake up two or more times a night to urinate! Now I just wake up because of pain.

Lasardo, I don't really know much about chat rooms....I've just found this blog site. I don't get on the computer as often as I once did.

Take care everyone!

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/3/2011 12:46 AM (GMT -6)   
Lasardo,

I hope you are doing well? I tried to email you, but your email was not setup correctly? Anyways, I begin my Intrathecal Drug Pump Trial next Tuesday, Nov. 8th. I will have a catheter surgically implanted in my spinal cord then I will be admitted as they inject different pain meds into the catheter/my spinal cord fluids and observe me. I will have my trusty iPAD2 with me and hope to post updates as I go through the trial phase...you know, depending on the pain..I will post whenever I can. Since I suffer Insomnia despite taking the strongest dosage of Ambien!!!

I had my Pre-Op Appt. with my PCP today and was cleared for surgery. Feel free to email me directly if you want to discuss issues beyond our posts. I told my PCP I will try to see a Shrink after my Drug Pump Trial/Implant to help me with my depression. I have good days and then some very bad, dark days. Before I found this awesome website I had no real support base.

I look forward to reading other people's posts and replies to my novels. It makes my day, since I am 90% alone and isolated, especially during the weekdays. My family are all in New York, but I seldom speak with them and keep my situation from them, since they can't do anything but worry about me from a distance. I have just a few friends, but they are all too busy to be bothered with by me...they have jobs, family and lives and don't want to have their good moods ruined by me whining about my messed up life. See, here I go again, hahaha!

Take care!

Charles
Say what you mean and do what you say. Integrity and Pride are never taken away... They are given away. Stay true to yourself and embrace Karma!
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