HealingWell
Search Close Search
☰

JLA1969 please read & lets welcome JLA to the CP forum

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/1/2013 8:28 PM (GMT 0)
Hello JLA1969, hello and welcome to the chronic pain forum. I noticed that you are new to Healing Well and have posted to a couple of members about the their SCS units. We ask that all new members do their own intro post so that all members will see it & e able to give you a proper hello & welcome aboard. When you post as you did with the other two members sometimes not everyone see's the post.

If you would like you can do a short intro post since I have started this for you.

Thanks......Susie
Posted 2/1/2013 9:43 PM (GMT 0)
Hi JLA
Welcome to our chronic pain forum. Glad you found us but sorry you are hurting. You will find a lot of support from the members here and also a wealth of info.
I will soon be undergoing an occipital nerve stim surgery.
Hope you find the answers you are looking for regarding your SCS.

Keep us posted.

Suzane
Posted 2/2/2013 12:11 AM (GMT 0)
Welcome to the forum. You will find tons of information and the most wonderful people around on here. Everyone is helpful and always willing to lend an ear or a shoulder whenever you need it.
Posted 2/2/2013 5:03 AM (GMT 0)
Hi JLA Welcome to our cp forum. We have a great bunch of supportive and caring people here. Take care, and I hope you get your SCS straightened out soon.

hugs
Loretta
Posted 2/2/2013 5:05 AM (GMT 0)
Hey JLA,

Welcome to HealingWell and the CP forum.

Look forward to getting to know you better.... Take care, Tina
Posted 2/4/2013 2:48 PM (GMT 0)
Hey goodmorning,
Just wanted to say thank you so much for the warm welcome. I had no idea there was so many people that live the way I do with pain everyday. I read all the posts and I'm just amazed. It seems like I can relate to almost every thread I read.
Right now I'm having problems with finding a medication that works for me. I've been on fentanyl patches for five years. The patches are no longer working for me. My pm doc says I need a change. The problem is, I have had gastric bypass surgery. My stomach pouch does not handle the meds well. Also, my intestines have been changed, so the meds are not absorbed. I have tried MS Contin and it took care of the pain but I had chest pain and severe stomach pains for the whole three weeks I was on it. I went from 62 mcg fentanyl every 72 hours and 2 10 mg lortab a day for BT pain to MS Contin 32 mg I think. Then tried that for I think almost three weeks. Since I could not take that they tried 75 mcg fentanyl patches. That also did not help the pain. Now I'm on exalgo er 32 mg and it is about the same as the patches. I still hurt to the point where my SCS doesn't cover the pain. I go back to pm tomorrow to let them know if the exalgo works. I will have to try something else now. I'm really tired of having to change and I guess frustrated. That is really what brought me to this website. I was trying to research to give me an idea of other possibilities. If anyone knows anything about people who have had gastric bypass and what to do about meds not being absorbed please let me know. I leave everything up to my doc. I never try to tell her how to do her job but she does listen to anything I have to say, as far as helpful comments. Anyway thanks for listening.
Posted 2/4/2013 3:27 PM (GMT 0)
Hi JLA, well as a last resort may be the intrathecal pain pump. I think with your medical issues and absorption issues that could be a possibility. I have absorption issues from losing a foot of my small bowel because of crohns disease & I had ran the gambit of meds till there was nothing left. With a pump you would not have to worry about any of your issues. The battery is dying in my current pump & the plan is to put a new pump in this Wed if all goes well.The pump helped me put a new life together and yes I still have pain & always will but its more tolerable. My quality of life is much better.You can do a search here at the forum for pain pumps & read about them. I would think you would do much better on all liquid pain meds. Anyway the pump is something to check out. Glad you joined us.

Take care.......Susie
Posted 2/4/2013 10:25 PM (GMT 0)
Susie, thank you so much for the information. I have read a couple of different posts about the pump and it seems to be a good choice for me. I am definitely going to mention it tomorrow at my pm appointment. I was wondering though.... Is it hard to get the insurance to cover it? I am figuring you probably have to jump through hoops to get them to approve it.. Lol I have two SCS already and I do get relief from those but not enough. It would be enough if I would just lay around all the time but I don't like to do that. I have to have pain meds if I want to do anything that requires walking or bending or anything else. Even sitting bothers me. I hope for the best. I hope all goes well with getting your battery changed. Good luck and thanks again for listening
Posted 2/4/2013 11:16 PM (GMT 0)
Hey JLA....

I, too, think the pump sounds like something you may want to consider. I've had the trial myself but (for various reasons) - have chosen to delay implantation.

Re: getting insurance to cover it - it's usual a last resort thing, as Susie mentioned.... and, most of the time, you need to have exhausted all oral meds. That being said - because you have the gastric bypass component.... that would be another indicator for needing a pump.

Talk to your doctor about it for sure.... and update when you can! Take care --Tina
Posted 2/5/2013 12:04 AM (GMT 0)
JLA, not with the right set of circumstances, it can be pretty an easy thing to get approved and I honestly feel like this would be something that should be explored with you considering your overall health problems. I too ran out of medication options, and I have not ever had back surgery either. Most people assume because I have the pump that I had back surgery. I also used private insurance through my husbands employer that paid for everything. I am on Medicare now & they also will pay for pumps. You could do a trial,its the same 50% reduction in pain or better then its considered a success.

Lets us know what you dr has to say. Take care.....Susie
Posted 2/5/2013 1:11 AM (GMT 0)
Susie and Tina ,
Thanks so much for taking the time to help me. I'm hoping I won't have problems with ins... I too have my husbands ins though his employer and I also have Medicare . I'm really hoping that my pm doctor will be on board with me trying it. Is the surgery to get the pump out patient? If so how is the recovery? I don't understand how it works. Do you control the pump or how does it work? If so, how is it refilled and how often do you get it filled? I don't mean to be asking so many questions but I liked to be prepared for when I go. That way I will know what to ask. Lol
Posted 2/5/2013 7:03 AM (GMT 0)
Hi JLA 1969, I had Gastric bypass surgery almost 10 years ago. I definately understand the wall that you've ran into. The problem I'm primarily seeing, is that your doctor is trying to give you long acting medication. This is totally and completely contraindicted with any gastric bypass procedure... if your wants to ignore that, I'd suggest finding another doctor. Since my Gastric bypass, I've found out a whole slew of information regarding absorbtion, I could almost write a book lol. Here are the meds that I've tried since starting my pain journey. Tramadol, ultracet, Norco, percocet, Oxy IR, Butrans, MS contin, Oxycontin (10mg only, in the hospital, didn't help at all), Dilaudid, Nucynta, and finally the 25mcg fentynol patch. So far, the nucynta helped the best, it was in immediate release form, 100mg every 4 hours.

Talk to your doctor about switching to immediate release form meds, and as I mentioned in another thread, I dissolve all pills before swallowing (didn't realize this thread was going lol), this has almost doubled the effectiveness of any medication I take, from tylenol, to my allergy medication, to my pain medication, and, I only use immediate release medication orally, nothing else absorbs, or else it absorbs very poorly, at a rediculously high dose.

Take care, and let me know if you have any more questions, I'd be happy to answer what ever I can, I also, have access to the bariatric dept at USC university for any questions about gastric bypass, so if I don't know it, I might be able to find it out. Good luck, and I hope you enjoy the forum, it's a great place to come for advice, support, venting, and friendship.
Posted 2/5/2013 12:38 PM (GMT 0)
Hi Matt, thanks so much for the much needed information. I will definitely discuss this issue with my pain doc. She did discuss the possibility that the meds would not absorb with me. It's just that the mscontin worked so good for the pain. I actually was able to go three weeks having such a better quality of life. We were hoping others would do the same.i was curious though... How did you know that you had an ulcer in your stomach pouch? Also, how did the bypass work for you? Have you had any problems with with weight gain? Any words of wisdom help
Posted 2/5/2013 4:00 PM (GMT 0)
JLA, my 1st pump was done as an out-patient and the one I am having put in tomorrow is out-patient too. The only way he said it would be as an in-patient is if the post-op pain is high & would need to be managed or some other unforeseen problem. I think its about like any other surgery about a 6 week recovery depending on the patient. It must not have been bad because nothing sticks in my mind from the first surgery.

You asked how it works,they implant the pump in your stomach on the side above the belt line. They make an incision in your back and feed the one end of the catheter around to the front of the pump & connect it to the pump,the other end is placed at the spine and the medication drips into the space there blocking the pain signal.You save your liver too with the pump, you are bypassing it. The refills are done by the nurse,they take a needle & syringe and draw the old medication out of the pump. On the side of the pump is a little thing that I call a portal, its built for the needle to pop right thru to either take out or put in medication. FYI pump refills are a breeze & painless. To me it hurts more to take blood than refill a pump.

The best website to visit on pumps is Medtronics.com.. It is a great site & very informative. Read about the PTM while you are there too. My pump did not have this, they came out with these about 6months after my pump was put in. Using the PTM is like giving yourself a small pain shot. The dr or nurse has to set these, its done by computer.

If you have more questions please feel free to ask.Take care......Susie
Posted 2/5/2013 10:14 PM (GMT 0)
Susie, thanks so much for explaining to me how the pump works and how they are implanted. Since I'm new to the site I really didn't know what was appropriate to ask. Lol. I have really enjoyed talking with people on this site. I have tons of support at home but its really nice to have a conversation with someone that 100 % knows what you are feeling. I am so grateful. Thanks, Janet
Posted 2/7/2013 6:24 AM (GMT 0)
Hey Janet...

We've probably discussed just about everything you can imagine, lol, here on the board.... so if you have questions about anything - just feel free to ask. :)

I'm glad you've felt supported here on the board, with people that truly understand what you are going through. It does help, doesn't it?

Take care - and talk to you soon.... --Tina
Posted 2/7/2013 9:04 AM (GMT 0)
Hello Tina, To be honest... I have been a totally different person since I started participating in this website. I do have a mountain of support at home. I couldn't ask for better. The thing is, is that it's nice being able to have a conversation with people that I feel are just like me. People that know what a CP persons days are like from day to day.
It's a little different for me now also, I have two children that I am raising and I try to hide the pain from them, so that they won't be sad. I hide it because they have been through so much pain and grieving, to be so young.
What it is ,is that my best friend died 2 years ago. She was the only friend that I've ever had. My husband and her husband grew up together. We would go to cookouts and they would be there. She and I got to talking at one of the outings and started to become friends. We worked together side by side decorating cakes for Kroger. At the time I had one daughter. At that time my daughter was,I want to say five years old. My friend had no children at the time. As time went on she ended up having two kids and we raised our children together. We all did a lot together. I ended up quitting my job and going to work for another company just so our families could go on vacations together. Lol
I got a call one day saying that she was on the way to the hospital. She had went to the doctor for being dizzy. They took blood and called her to come in immediately the next day for the results. They sent her straight to the hospital due to the fact that her blood was so low that she needed a blood transfusion. They ask me to come there to help them with the medical terminology . Well it ended up being myelodysplastic syndrome. That is basically a pre-leukemia. She was gonna need a stem cell transplant. She needed a caregiver, which I automatically committed myself. Also, the caregiver had to be around the clock. My husband and I just picked up and moved across town to live with them. Her two kids were 6 and -11 years old. We thought it would be just temporary and then when the treatment was all done then we could go back to our house. We had lived in my house for 15 years, so it was a big adjustment. My daughter who was at that time 17 and engaged, stayed behind to take care of my animals and the house.
We prepared for the transplant day. We had to drive back and forth to the transplant unit, which was 40 miles one way, seven days a week and even on holidays. The four of us
adults would get up at 4:00 every morning and get ourselves ready and get the kids up and fed and get them to school. Our husband would go to work and we were off to the clinic. We stayed at the clinic from 8:00 to 5:00 Dailey for treatment. When we got home it was do homework, eat, kids showered and ready for the next day. Plus, all the medical treatment we had to do at home.
We did that everyday, even on holidays, for the next two years. We did the best we could as far as caregivers. She lost her life one year and ten months after being diagnosed. Due to the gvhd. That's where her body rejected the transplant. She had ask me if something happened and she didn't make it, could I please raise her kids as their mom. She said I want my kids to turn out to be just like your doctor.
So needless to say my husband and I were never able to move back home. We continue to live here, and my husband, myself and there dad all raise them. This is the reason I hide so much of the pain I have. They have already been through so much emotional pain. I don't want them to be sad anymore. It's challenging for me to hide my pain but I do it.
I guess that is why I enjoy being apart of the HW family. I can have someone to actually understand what I go through and not have to worry about little ears always learking around. Plus, even though I do have plenty of support, it's just not the same as someone who knows what the physical part feels like, not to mention the mental part that comes with being disabled at a young age.
Anyway, I just wanted you to get to know me a little.I thought by telling my story, that everyone would know the type of person I am and that I will help anyone. Thanks again for the warm welcomes.... I will be glad to answer any questions.
✚ New Topic ✚ Reply