Thursday, August 6, 2009

I'm Back!

Sorry for the longer than expected hiatus. I'm just coming out of a taffy-induced sugar coma. My diet on this vacation was piss poor. I subsisted mostly on pastries, taffy and boardwalk lemonade. It was fantastic.

Now I'm back from vacation and have no excuse not to resume eating well. Though, I do confess to waking at 1am this morning to the siren song of the taffy sitting on our kitchen counter (wherein said taffy was transported into the bathroom for 15 minutes of ravishing). You'd understand if you'd actually tasted this stuff (and, yes, I do think the fact that I eat my midnight snacks in the bathroom is quite odd and, no, I do not know why I persist in this questionable habit).

Anyway, I was happy with how I felt this vacation considering the long car rides involved. I can honestly say that car rides have become much more palatable since having the stimulator implanted. They still aren't "fun" but they are much better than pre-stimulator.

I did experience some nasty pain when I went to church with the in-laws this past Sunday. I forgot to bring a pillow for my back and when I sat against the pew, the edge dug into my incision. I unleashed a stream of expletives (though only in my head, lest I be smoted) and spent the rest of mass hunched over-Quasimodo-style . I'm adding "purposefully uncomfortable seating" to my list of grievances with the Catholic church.

Well, that's my update for now. But before I sign off, here's a picture of one of my favorite August flowers (which Mr. B and I spied on our afternoon walk...).


Alright, here's a second pic. I should note that I hid in the bushes to take these pictures as I didn't want my neighbors to mistake me for a flower stalker (which I most clearly am..).


17 comments:

WinnyNinny PooPoo said...

Beautiful Flowers!

seernisse said...

Welcome back Damimal! I spent last week at a family vacation spot as well. My daughter said that dieting rules do not apply at the lake. I took her at her word and had quite a few treats. The taffy looks really tempting - I see how you couldn't resist! I finally had a chance to finish Julie and Julia during the week (between snacks). It was a fun read - thanks again for sponsoring the contest!

Anonymous said...

Hi Danimal, just wanted to say glad you are back (from a long-time lurker) and I enjoyed your post very much! The taffy looks delicious!!

Hanging Laundry said...

Welcome back! It's amazing the little things you realize had been taken for granted; being able to just get in the car and go without worrying about pain. I'm thankful to hear you carried on & am inspired by your positive attitude & sense of humor about everything. Thanks for the post!

random acts of violets said...

I just wanted to thank you for your awesome blog. I've suffered from severe chronic pain from CRPS in my right hand/wrist/arm following an accident where I was crossing the street at a crosswalk and was hit by a driver who ran the red light. Factor in that I'm a software programmer and being diagnosed with stage 3 melanoma a few years later and it's been a difficult journey. One of my doctors has maintained for a long time that the SCS is the best option for me where long term management is concerned, and your blog has provided some great insights about what it's really like and how it could affect my life. Not to mention how good it is to read other people's experiences with chronic pain and feeling like I'm not so alone in it all. Thanks, again.

-- Violet

Sandra Mort said...

Oh, I'm glad to have found your blog. I just had the trial SCS removed yesterday and will be scheduling an appointment for the permanent unit ASAP. A little scared but that's to be expected!

Margaret Shank said...

Hi Danimal,

It's me (your stalker) again... I've sent you a post on the healing blog award place (forgot the name already) and an email asking some questions, to which I'm hoping you will respond.

I have my first stim. trial coming up Tuesday and not all my questions were answered by my doctor, even after I made a long list to ask him using your blog and a few other sources.

Still, I'm afraid that the insurance company will not approve another trial if I wimp out on this one. Another bad thing is that the trial only lasts from Tuesday night (for some reason the surgery starts around 6 pm) to whenever I make an appointment to have the leads removed Friday.

From what you all have written it sounds like I won't be able to make a decision after such a short time, but that is the only option offered. So, what do I have to lose by going ahead?

My doctor also wants the permanent (not rechargeable) battery in my buttOCK (tee hee, I know you hate this word, Danimal) as he claims more risk of infection with two openings, turning me during the surgery, etc. I do not want this as I just don't have a lot of meat in my bum. And I will not be talked into it regardless of what he says.

I have another question after reading your blog and now the comments too -- everyone is so worried about lead migration and the accomodations necessary to prevent this (e.g. no bending, twisting, lifting, etc.) Now that you are a few months out, can you at least raise your arms above your head? Who styled your hair when you couldn't do that? I read that your DH washed your hair in the sink -- our pain must be very different since that would leave me sobbing and screaming. I can hardly even brush my teeth.

So: Can you shampoo, shower, and do your hair on your own now? When will your concerns about lead or (in your case) paddle migration become a fairly remote possibility?

I welcome comments from others, too.

I'm just so afraid of this and feel rushed. My husband did say that the insurance company seemed to feel that it wasn't a huge deal to reschedule, but I'm not sure it's worthwhile as nothing really will change. I can't have the leads put in on Friday and removed Tuesday (my only other choice) unless I want to work with a total newbie Medtronics rep or change doctors, and I just can't face that. It's so hard to drive and I can't get my husband to drive me everywhere, and I'm in a fairly small town.

Thanks for everyone's comments and willingness to share this experience. I too have shed many many tears at having this disastrous event take place in my life -- chronic refractory pain. There is so little positive information out there, it is a godsend to have this blog and the comments to help.

Thanks to all, especially Danimal, and best hopes to everyone for as comfortable a day as possible.

Anyone please feel free to comment or to write to this very scared new passenger on the neurostimulator journey! In fact, please do!

Margaret (made_maka[at]hotmail[dot]com)

Margaret Shank said...

P.S. I just noticed that the original post and comments are more than a month old so I guess I won't be getting many if any commenters to read. So, "never mind". I still hope to hear from Danimal...

Margaret

Lizi :) said...

Hi Danimal & others,
Just found a recent comment on the Wellsphere Blog so I know Danimal is still out there. Hopefully having too good a time to blog - go girl!
Having been addicted to this blog and found it the most useful resource during my neurostimulator experience I'd like to thank Danimal for her honesty, warmth & wonderful information - no-one but an implant person can really tell you what it's like!
After 4 years of chronic pain I had a cervical spinal cord stimulator implant done between 5th - 7th August this year - just over 6 weeks ago.
I was lucky enough to get into the Pain Management Clinic at my public hospital under the care of one of the top two Pain Specialists in Sydney (Australia) and so after 3 years of trying everything else he agreed to an SCS implant. I was also extremely lucky as being a public patient i didn't have to pay!
My Pain Specialist has been doing SCS implants for 25 years and had done 100s of lower back implants but only 6 cervical ones before me - but I finally convinced everyone I was a worthy candidate.
Hospital policy meant that I had the Trial implant on the Weds. afternoon - with permanent leads attached since they didn't want to have to go into the narrow cervical canal twice - then the neurostimulator implant done on the friday afternoon.
It is amazing - the pain relief is sheer bliss!!!
Okay you have to suffer the pain of surgery & the recovery process is slow & painful & it's not all plain sailing. I've had 3 re-programming sessions since hospital & another scheduled for today but we are getting closer to optimum pain relief, I've adjusted to the stimulation changes which occur when i change posture or tighten up my neck, where the electrodes are, but overall I'm enjoying 50-85% pain relief, without painkillers - except for rare breakthrough pain when I do too much - and that is so good!!! (The relief not doing too much!)
For anyone thinking of SCS - get all the information you can, really think about it, talk to others online, if not in person - and don't be afraid!
It is worth it - I would do it again in a heartbeat!
I was also lucky to have enough Long Service Leave (used up all my sick leave long ago) to take 8 weeks off work - I'm a Teacher-Librarian in a high school - and that has helped with time to adjust to the stimulation sensation, go in for re-programming, learn how to use the stim & recover from the surgery.
Best of luck to any other "implant people" out there and thanks again, Danimal - I'll keep reading if you keep blogging!

Lizi :) said...

OOPS - I forgot to mention, Danimal, that I have recommended your blog to the Pain Management Team at my hospital, as well as to my Medtronic Technician - I had a RestoreUltra just like yours installed but with percutaneous leads.
Also on the pain relief front - slight typo _ i should have said I can achieve up to 95% relief with my current program and the average pain relief is around 80% - just a few spots that need adjusting...
I have it on all day, turned down low for sleeping - and if i want to find out how well it's working I only have to switch it off for 15 minutes!!
I know it's working, too, when i get an unconscious smile at the corners of my mouth...
cheers all.

Danimal said...

Helloo there everyone! I'm still here..I promise! I'm so sorry I haven't been blogging these past 8 weeks or so. I am a very, very bad danimal. Traveling around this summer and having a bit more work to do has left me dragging a bit at night and..well...I don't have that many excuses, really.

Anyway, I just wanted to say hello and tell you that I will (come hell or high-water) post an update by the end of the weekend. Really. No, really. I mean it.

Welcome to Margaret, Liz, Random, and Sandra! I'm so glad you found the site. Margaret..I just sent you an email.

Liz-I'm THRILLED that you are getting relief from your stim. I'm also glad that your surgery went well. How are you doing now that you are more than a month post-op? And thank you so much for telling your pain management team about my blog. I truly, truly appreciate it!

All the best to all of you!

seernisse said...

Hey Danimal - Glad to know you're still around. I was worried about you! Looking forward to your next post when you feel up to it.

Lizi :) said...

Hi again Danimal & others,
Thanx for the kind comments Danimal - it seems strange after months of "lurking" & enjoying this blog that I am now part of it!
Things continue to go well for me at 7 & 1/2 weeks post-implant. But as I said B4 - it's not all plain sailing.
I had the misfortune to have a lead migration in the first 2 weeks post-implant - even B4 i had my post-op check-up.
My Pain Management Specialist told me it was quite common for this to happen with cervical lead placement and that even a sneeze could have done it! And sent me to the Medtronic people for re-programming.
I have two leads - percutaneous not surgical - and the migration means that after much fiddling about they can only use one of the leads.
I'm really happy with the level of pain relief I've already got - but the stimulation on the RHS is not up to scratch and there is a breakthrough pain spot in the middle of the right shoulder that the Medtronic people have said they can't get with the current lead placement. At times it drives me mad!
I'm due to see the surgeon early November for the 3 month check-up - by which stage I'll have been back at work 3 weeks so I'll know how I'm coping.
I'm hoping to persuade him to do an X-Ray or Cat Scan to see how far the naughty lead has moved - if necessary I'd be happy for them to operate again to replace it - I can still remember the bliss of both leads working in the honeymoon period in hospital!
But am I being greedy?
Should I be content with the really good pain relief I now have or go for more?
Just seems a shame to have an expensive lead in there doing nothing...
what do others think?
Should I be the "patient from hell" and ask for an appointment/X-Ray earlier than November?
Anyone out there gone through lead re-positioning?
any advice appreciated...
Still smiling, :)

Limojay said...

Hey Danimal! I too have been wondering about you. I thought that little orange pain gremlin had taken you away! Hope you re doing well & not overworking yourself. I mostly hope your pain is manageable. I'm still battling with my SCS & back on alot of meds that I so wanted to get away from. We all look forward to your much awaited return.
Limojay

Danimal said...

Hi Lizi!

Oh stinker..I'm so sorry to hear that one of the leads migrated! If it were me, I'd ask for an x-ray right away to see if you can get this lead situation figured out sooner rather than later. You would NOT be a patient from hell for wanting to do that. If you're amenable to having a revision...then I think it's worth looking into now (especially since you said you had such good pain relief with both leads). I agree..it seems silly to have 2 leads implanted but to have only one functioning! Plus, it's really no inconvenience for your surgeon to order you an x-ray and then maybe you can get in to see him before November 3rd.

Let us know what you decide!

Danimal said...

Limojay! Nice to hear from you! Don't worry..I didn't get carried off by my pain gremlin...I just got sucked into the summer vortex of being lazy. ;)

So how is your post-op pain? Have your incision sites healed up completely or are they still tender? Are you on the same amount of meds as before the surgery? Or are you taking more?? I forget..are you on a fentenyl patch?

I'm thinking about you!

Limojay said...

Danimal, Yes, my incisions have pretty much healed. I still get no relief in my lower back from the SCS though. It's been reprogramed so many times I've lost count. So, my docs have about gave up on that. They are now trying to treat my pain with morphine & zanaflex and I'm really not sure the side effects are worth the little help I get. I wish I had better news to report. Glad you enjoyed your summer! We all need to live each day to the fullest & just take the good with the bad, right?
Limojay