HI, I am new to the boards, and have spent the past week or so reading as much as I could. While I have learned a lot, and I thank you all for that, I am more frustrated and depressed than ever. It seems that everyone has gotten great relief from their pumps, and while that gives me hope (something that is frightening for me), it also seems unattainable for me. I often say, "If I didn't have bad luck, I'd have no luck at all". Perhaps my particular problems have been just bad luck, but it is really frightening to continue my pursuit of a working pump with a new MD that I have no knowledge of, in terms of his reputation etc...Not that I wish this on anyone else, but it would be easier to proceed if I "knew" of people that aslo had experience with broken catheters, that went on to have another one placed while keeping the old one in their spinal column. I feel totally frozen, with no ability to make a decision. For 10 years, I have really fought off depression, with the hope that tomorrow will be better. However, these last 9 months have been so stressful, and frankly very depressing. I have 3 young children and a wonderful husband, with whom I have tried to live a "normal" (whatever that is) life. It just saddens me further to see how my present situation affects them.I know I can't be alone in much of what I am (trying) to somewhat inarticulatly say. How do you move forward? Any words of wisdom would be greatly appreciated. Thank you for taking the time to read my post. Sincerely, cactuslily
I read your post and everything you said is exactly how I feel. When you said, "If it wasn't for bad luck, I'd have no luck", I had to laugh, because that's something I say all the time.
The only words of wisdom I can tell you is to love your family and appreciate the good things you have. I know this is easier said than done, but, what alternative do we have?
Living with CP is terrible and we shouldn't have to deal with it everyday, but, Thank God we have our families to help us get through the tough times.
I don't know if your religious, but, I always say the Serenity prayer, God, grant me the serenity to accept the things I can not change, courage to change the things I can and the wisdom to know the difference................
It doesn't help to think, "why me"? I have four kids and a husband and I try to think about where I'd be without them? So many people are alone and that's got to be hard, so when you get depressed, look at your kids and think about how much you already contributed to the world by bringing them into it.
Maybe one of them will become a doctor and find a cure for cancer or chronic pain?
In terms of your pump, just try to educate yourself and ask as many questions as you can of your new doc. Don't have blind trust just because he/she is a doctor. Make sure you hold them accountable for your health and if you don't agree, get a second opinion.
Dear Sammyjoe, Thank you so much for your kind words. I am really grateful. I have dealt with this alone for so long. I don't like to complain, and have gotten so used to saying "I'm fine" when people ask. Perhaps you understand that as well. I guess I have just become somewhat jaded and distrustful. I completetly trusted my initial PM Dr., yet look where that got me. On the other hand, the chances of me having the same problems with another Dr. would be akin to winning the lotto twice. I'm not a gambling person, but considering my luck, I wouldn't be the best one to give lotto numbers. I just wish that I could make a decision, and feel good about it. Maybe at this point ANY decision would at least be forward movement. Do you have a pump? If so what kind, and has it helped you? Thanks again, I really am grateful. Sincerely, cactuslily
Hi Lilly. Honestly given The way you has a you r last pump put in with no screening, no trial and little elief from the inial dosing, I would want a sucesfull trial under my bealt before taking any more risks.
I don't know if your old doc is just so sold on the idea of pumps delivering meds VS orals he does this often or if if you skippid all the hoops, Pasych eval, "MMPI, and even more important a sucesful trial to see whether it's worth while. This word probably causes a shudder in a house full of medical profesionals, but the professional curtesy where everything is skiped including a succesful trial would be called malpractice to any other apatient. No Pm doc would say the practice of implantaning a pump without a trial is within any standard of practice or care. The manufacturer recomends doing a trial for a reason. Basiclly this profesional courtesy "no screening and no trial" would be called malpractice if it were any other patient than a docs wife who is a nurse herself.
Ideally it would make sense to take this time to do a trial before implanting another cath and taking the risk of causing further damage.
Good Luck, Dave
Nobody can prevent a slip and fall, Falling in the shower is the #1 reason for fusion revision. So damaging a cath within a couple of weeks of implant really didn't give you enough time to figure out exactly how effective a pump could be. You know where you were and the relief it was giving, why not use those old number as a startng point of sorts for a fresh trial. Perhaps the doc will feel a little better about proceeding with surgery when he knows the patient, whethee they are a nuse or a doc themself will actually benefit from a pump with your condition.
You really have nothing to loose and a lot to gain. If they can get some of the titration out of the way during an actual trial, you will be that much closer if you have positive results. If you don't do a trial and just replace the cath, your still working blindly towards a goal that you won't even now if it's obtainable untill you have spent months titrating every preservative free opiate and the adjunct meds they use like clonodine, Marcaine nd baclofen. IF a pump doesn't work, you may be a better candidate for an SCS.
Although it may seem like taking a step back, your would really just be covering ground that should have been covered long before an implant was done.If It's a success you certainly have some light at the end of the tunnel.
Hi Dave, It was so kind of you to reply. You are really knowledgable and I have truly learned a lot. Just to clarify, I did have all the pre-req's i.e. MMPI, Psych eval and an inpatient trial. The problem with the trial, was that I got really numb, primarily on one side, so yes I got relief, but felt concerned that relief was from being numb. I was told that the reason I was numb was from the "position" of the catheter, and that it wouldn't happen once implanted. I had asked about a trial now, but none of the docs felt comfortable doing a trial with the retained catheter there. Now that my Dr can't practice any longer, and all of his patients with pumps were "released" from the practice, I met with a new Dr. He was very kind, and didn't make me feel rushed. He wanted me to have a new catheter placed and leave the old one alone. Not that knowing the 1st Dr. in hindsight, helped, but my trust in Dr.s was really shaken. I am really frightened. another concern I had was this new Dr, when I met with him, his nurse didn't know how to "interigate" my pump...I think I may see if I can get another appt. to talk really honestly about my fears and issues. It has no reflection on his competence, just me. It has just astonished me that patient abandonment and physician impairment were both just wrapped up in a neat little package for me. Essencially, they (his partners) knew he was impaired, yet refused to acknowledge it, or protect his patients. I don't know what their legal obligations were, but I darn sure know what the ethical and moral obligations were. Perhaps I am naive, and just assumed that when things like this arise in any profession, let alone this one, that issues such as this would be handled professionally and appropriately. Hopefully, this new Dr. will be willing to let me take things slowly, and ask all the questions I need to, so I can make the right decision. Thank you so much. P.S. You mentioned about a company called Integra, I looked them up, but was wondering what drug/product you were referring to? I can see why you are so invaluable to these boards. Thanks for sharing your information. Hope this finds you and everyone else here feeling well. Take care, lily