Thanks, Mark. I appreciate your thoughts and prayers. As you know, chronic pain isn't easy and right now, I feel extremely nervous about what all the Doctors are calling my "last options".
One of them is an SCS in my cervical epidural space but because of all the surgeries, the Doctors and I really don't know if they can hit my facial nerves. If you don't mind my asking, where do you have the SCS? Did you do trial first and was it successful. Obviously, the implant helped and I am so happy for you. I also hear the paddles can break? Did that happen to you at all? Doctors are telling me that if mine break, they might just leave them in because I have had so many neurosurgeries and they won't want to cut again. This also scares me to have metal pieces floating around in my neck forever! If your SCS is in the cervical area, I could really use your help. Haven't heard anything on a pain pump in cervical yet from anyone even on other sites. It is like the procedure doesn't exsist. Thanks for the support and you will be in my prayers too, Melissa

Hi Melissa! I have been through so many things in the five plus years of my treatment since the wreck that my pain doc, the guy I trust and who is in charge of my pain care, told me the SCS was really the end of the treatment road for me and that in his thought I was a perfect patient for the procedure.

I had the Trial surgery on 13 May at an outpatient surgical center. There was minimal anesthesia administered since I was supposed to be awake for the tweaking of the leads once they were inserted into my dural space along the spinal cord. The treatment being directed toward my unending unrelenting horrendous chronic nerve pain was placed about T8/T9 to be sure to get the electrical impulse treatment above the nerve roots that feed out to my legs. The Trial period was so WONDERFUL, a seven day period of peace and freedom from that awful pain.

I cried during the Trial period when I at first realized, fully recognizing I felt NO PAIN when my wife asked how I was feeling on the first day of the Trial. Oh, what Bliss to be at once FREE from pain, and I was in control of the impulses through the remote control they supplied for the Trial. AHHhhhh.... that peace. It was then a sense of dread began to populate my mind as I realized the seven days would end. I would have to give it back. They would take it from me. I did not want to return to pain.

I felt the HARDEST part of the whole fol-de-rol was that PURGATORY between Trial and Permanent Implant. PURGATORY! Not quite damned, but not quite saved either. A stasis between. Knowing full well what would address the pain to which I had to return and having to WAIT for the permanent as Fiona, Calewark, and others are right now. You see, once we know the peace of SCS it is SO HARD to go back to the pain of the BEFORE and wait patiently as calendar days tick off passing by. Time seems to take a slower pace for us in the waiting. It seems to us so unfair, but then life is unfair, by and large, we live in ways endeavoring to bring fairness to others, but the process takes as long as it is going to take; so, I waited from 20 May, the date of removal, until 29 June, the date of implant surgery, then until 9 July before I could return to a program with the SCS which DOES help manage my pain.

I do have paddles inserted and sutured to my spinal cord through the T8 space, where a laminectomy was performed to make a sufficient opening through which to insert the paddles. The incision at that location is about 5 inches, then a smaller incision appears at my right hip, where the generator is located. No one has spoken to me or made any disclaimer about a risk of breaking the paddles..... Interesting...... since the paddles are inside the dural space with the spinal cord, as I understand it, I don't know what I could possibly do to cause breakage of the paddles. BUT [this is a BIG BUT]- the process of healing so sufficient scarring can occur to tightly hold the paddles in place, I must be careful for this eight week period not to reach above my head with my arms, nor am I to bend, twist, or lift. NO EXERCISE regimen is allowed, that is, other than walking on the firmness of the earth beneath our feet, and THEN I am supposed to exercise due care to avoid tripping risks, because a fall could result in dislodging the paddles or some other connection and then I am where? Back on the operating table.

I can't think right now who has a cervical location implant. I know Burntmarshmallow has the implant for Trigeminal Neuralgia, pain in the face. Fionab is awaiting a dual implant, both lumbar and cervical, she may have helpful information about cervical implant work such as you now contemplate. Rae is a fount of knowledge about who has had what and where to point you within the forum, so writing to her is a very good idea.

Rae may also be able to direct you to someone who has had a cervical pump since you are also contemplating that.

Thank you for your prayers. You and all of the others who have lifted us up in prayer are helping us through this process. I am healing, and feel so proud of myself that I took my first since surgery walk around our block here in Golden, CO. The sunset was absolutely beautiful! It felt good to be back outdoors again. I am bound and determined to make it positively through this healing process and depend heavily on my faith to push on through.

You remain in my prayers Melissa as you research and decide this very important and delicate issue. May God guide you and your medical advisers throughout this process,
ASAP [Always Say A Prayer- I learned that from Calewark here on the forum],
Mark56 PJ

Sorry I'm so tardy in getting back to your very important question:

I'm now on my 2nd morphine pump and I'll tell you, they literally gave me back my life - ironically I didn't know it till after my battery died on my first one after 5 1/2 years of service. Because of additional pending surgeries, I had to wait 4 months before my second pump was installed, and wow was that the longest 4 months of my life.

As far as it working, there's only one way to find out. Let the doctor order the overnight stay in the hospital so they can run the test and see if it will work. You're going to know right then on the spot if this will work. When I had my test, I was bawling in tears it felt so good to have the pain ease up that much. Four hours later the pain returned and I'll tell you I was crushed.

Morphine pumps are no silver bullet. They don't get rid of all the pain, but they do moderate it so you don't have the horrible increased levels you're experiencing now.

As far as getting them paid for, they don't come cheap. My first one cost $20,000 and my second one was $30,000. Refills are over $1,500 a pop, but as long as the documentation is in place I know that most insurance will pay for it including Medicare. While there are some who claim they're no big deal as far as size and location, I'm not in agreement here. After creating the pocket inside my stomach for it to fit in, I had the second one slide down directly on the belt line so it can be annoying that's for sure - but the benefits outweigh the good, at least for me hence I'm thankful each and every day for this amazing piece of technology that's flowing through my body. All the best and I hope you can finally get some solid relief so you can regain some quality in daily life, Bob.

Thanks for getting back with me and for all your information. Is your pump catheter located in your lumbar or in your cervical area? I actually have a pump in my back (lumbar) but it really didn't help me enough to continue it. However, it is still in my body and running saline because I am not up to having another surgery right now and might use it for my neck.
I am really concerned about having the catheter placed so high in my neck because I can't find a Doctor who has done more than four and they are so dangerous compared to lumbar pump. It isn't done much anymore for a reason. If the Doctors are even a tiny bit off or if the medicine is too much for my brain to handle, it can give me a stroke, seizure, paralysis and even kill me! I am going to make an appointment at the Cleveland Clinic to get a fourth opinion and hopefully, find a Doctor who has done more than four. Unfortunately, it is a shot in the dark if I will go to the Doctor who's most experienced because none of the Doctors' profiles say that they even perform this procedure and when I call, no one is able to help me. It just isn't done anymore except with cancer patients who are already dying and that is truly scary. For me, I am willing to take the chance but my parents are not and I don't blame them.
If your pump is in the cervical area and you don't mind me asking, who did yours and how many has he/she done? Also, if you know anybody who might be able to help, that would be so helpful as well. Thanks for your help and I hope you are doing well, Melissa

My pump was installed to the left of my bellybutton, but now it's slid down and sits right on the waist. The catheter was placed through the middle of my body and is sewn into place along my spine on the lower back. It does get sore down there, and there's certainly an annoyance to having the pump on my belt line, but when you're talking about this level of pain, all we care about is that it works. For me it's been a godsend. Best of luck.

I'm sorry, but my pump is the kind that's located in front on the right side of my tummy and then it's all sewn into place in my spine. You're in a tough situation and as far as how to find a doctor who's got the necessary experience, it sounds like you might be facing some serious travel ahead. With the rarity of this type of dangerous procedure, I can't help but worrying about you being between the rock and the hard place. I know you'll figure out the best path, and I sure do hope you find it soon. Take care, Bob.

Hey Bob! Thank you for being there and a rising helpful star to others in need! So GREAT!
Mark56

Definitely praying for you Melissa. You are faced with such a difficulty in even knowing whether to place your trust in someone you have yet to meet without the benefit of recommendations. May you be able to thoroughly interrogate the doc with whom you meet so as to figure out their ability to provide help to you, and also may the doc be conscientiously forthcoming in their discussion with you so as to help you gain understanding which will aid in decision making. I hope and pray that you find the complete help you need.

Pulling for you,
Mark56

Melissa,

I had a cervical SCS for face pain implanted in June. My face pain is primarily in the V3 area of the trigeminal nerve. This gave my surgeon the hope of being able to reach the face through my spinal cord. My trial was successful despite the coverage not quite reaching the face. I still had relief and now the permanent implant has had great coverage so that I have been able to reduce some of my medications. I think by doctor is in the minority for treating face pain from the spinal cord. I am so thankful he did it!!

I do not have the paddle type of implant, but I still need to be restricted for three months so that everything scars into place. It is tough to remember to not bend over to pickup something.

I hope you are able to continue to find out answers and then get the relief.

Emelie

Thanks for all your support. I am heading to Cleveland Clinic and hoping Dr. Cheng who I found on internet can help me figure things out! Anyone been to him? Thanks again for all your support and prayers. You will alll be in mine, Melissa