First I have to tell you I am on Peritoneal dialysis which I do myself at home. I also work full time from home working on company's ERP IT systems remotely via my laptops.
I have an appt the day before Thanksgiving to talk with a surgeon. That will be 11/21/12. I have all three types of nerve issues on the right side of my face. Normally I only have pain with the jaw down to the bottom of my face. It is very intense and I take a sleeping pill to go to sleep at night. Once in a great while I have the neck pain which will go into a headache, that is the worst. Thankfully I don't have it often. I do have the shocking, but it is minor and rarely ever bothers me.
I saw my neurologist this week because my TN has worsened since I started on dialysis. Also it has made me extremely sun sensitive and I almost passed out just going to the store when I was on vacation in a very hot place. My face would literally burn the minute I stepped into sunlight. So the neurologist told me my dialysis is taking the meds out of my system and he is concerned about my side effects. (Oh, my face also breaks out now). Therefore there are two options of surgery; the gamma knife or MVD. I have read up on MVD and considering I still have many years of life left I believe the MVD is the best option for me. Considering I work from home, I am wondering how long after surgery before I'd be able to go back to work?
I'm also wondering if this would affect the timing of my transplant if my potential donor is passed by the hospital board and is able to give me her kidney. I still have one more test to take first, I need to do the stress test and angio cardiogram with substance that I couldn't have before I went on dialysis. I need to schedule that soon also.
I've given you all of the facts so you know what I'm up against. I don't want to lose my job so it's important not to take too much time off. They are looking for a backup to hire for my job since we need a second person anyway. If they do that then I'm okay jobwise. But I still don't want to take too much time off since I'll need a lot for the transplant.
Since you work from home in a job that doesn't seem too physical I would say 2 - 3 weeks if everything goes OK. However, I don't know if your circumstances would make the recovery more difficult or not since you need a transplant. This is something that you will want to have a serious discussion with your surgeon.
On another note, MVD may or may not be right for you. We can't pick an option to work, but rather choose from the options that will work for our circumstances. My surgeon (Dr. Follet, Chief of Neurosurgery, Nebraska Medical Center, went over all treatmensts available for TN and why he did or didn't think they would work for my situation. He said he did not feel I would be a canidate for anything other than MVD.
My daughter is an RN and manages a dialysis facility that only caters to peritoneal patients or patients deemed to be good candidates for starting this type of dialysis; she also teaches classes for new peritoneal patients.
It seems to only make sense that the process of dialysis would remove the TN medications which really seems would present pain management problems for you. I'm not an MD, but will forward your words above to my daughter just to get her thoughts or comments. Yours is a rather unique situation that I've never seen here on these forums (TN and dialysis issues).
I wish you much luck in finding a suitable donor match ASAP. I'm not a candidate for MVD, and so, know very little about that procedure. Take care.
Thank you for your kind words Rick. I'm looking forward to getting these issues resolved so I feel like dancing again! :)
Rick Bruce said:
Hi Lori,
My daughter is an RN and manages a dialysis facility that only caters to peritoneal patients or patients deemed to be good candidates for starting this type of dialysis; she also teaches classes for new peritoneal patients.
It seems to only make sense that the process of dialysis would remove the TN medications which really seems would present pain management problems for you. I'm not an MD, but will forward your words above to my daughter just to get her thoughts or comments. Yours is a rather unique situation that I've never seen here on these forums (TN and dialysis issues).
I wish you much luck in finding a suitable donor match ASAP. I'm not a candidate for MVD, and so, know very little about that procedure. Take care.
Wow, 3 whole weeks out of work? I had better wait until they hire a backup person then. It may cost too much to use the contractor to cover me for that long. Thank you for your reply!
Kc Dancer Kc said:
If you had an MVD - and have a "desk" job -- 3 weeks you should be fine : )
Thank you for your response. Wow, that's a long recovery time. I'll see what the surgeon says too. I will probably see if work will be hiring the other person to back me up soon. I'd have to train them on all of my clients first..
Lori
Mandie said:
Since you work from home in a job that doesn't seem too physical I would say 2 - 3 weeks if everything goes OK. However, I don't know if your circumstances would make the recovery more difficult or not since you need a transplant. This is something that you will want to have a serious discussion with your surgeon.
On another note, MVD may or may not be right for you. We can't pick an option to work, but rather choose from the options that will work for our circumstances. My surgeon (Dr. Follet, Chief of Neurosurgery, Nebraska Medical Center, went over all treatmensts available for TN and why he did or didn't think they would work for my situation. He said he did not feel I would be a canidate for anything other than MVD.
Nice! I will be having kidney transplant surgery at some point so that's why I was hoping this one wouldn't take too long to recover. Because I'll really be taking time off for that. How do you feel now, did it get rid of your TM? Any complications?
Mandie said:
I know it seems like a while, but it is a major surgery. My short term disability gives me an automtic 6 weeks for it.
Feeling great!! One very minor complication (if you can call it that) was that I had a bad spasm in the neck muscle. Doc called in a scrip for flexeril and worked right away. I do get some nausea and dizziness when I bend over too much, so have to watch that.
My stitches aren’t dissolving very quickly. That’s just annoying, but I am going to go in on November 30th and have them taken out if they are not gone. That will be 6 weeks and 1 day:)
That's so good to hear. I'm glad you got quick help for that spasm. Whew! Are you still taking pain pills at all or what do they attribute the nausea and dizziness to? But if you're only 6 weeks out then that might be the reason. Hopefully all with resolve in time. Sounds like you are very glad you did the operation. Lori
Mandie said:
Feeling great!! One very minor complication (if you can call it that) was that I had a bad spasm in the neck muscle. Doc called in a scrip for flexeril and worked right away. I do get some nausea and dizziness when I bend over too much, so have to watch that.
My stitches aren't dissolving very quickly. That's just annoying, but I am going to go in on November 30th and have them taken out if they are not gone. That will be 6 weeks and 1 day:)
Hi Rick, the surgeon said I'm not a candidate for the surgery because of being on dialysis. He recommended starting with the shot of radiation so I'm lining that up to be done this month. I found a donor and am finishing some testing. We're hoping to set up the transplant early in 2013. I keep praying!!
Rick Bruce said:
Hi Lori,
My daughter is an RN and manages a dialysis facility that only caters to peritoneal patients or patients deemed to be good candidates for starting this type of dialysis; she also teaches classes for new peritoneal patients.
It seems to only make sense that the process of dialysis would remove the TN medications which really seems would present pain management problems for you. I'm not an MD, but will forward your words above to my daughter just to get her thoughts or comments. Yours is a rather unique situation that I've never seen here on these forums (TN and dialysis issues).
I wish you much luck in finding a suitable donor match ASAP. I'm not a candidate for MVD, and so, know very little about that procedure. Take care.