shmirlyx3

By shmirly Thursday, March 27, 2008

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Hi Again...

I haven't posted in about 6 weeks. I am home recovering from my pump implantation surgery. Unfortunately, i had a "minor" complication - the dreaded spinal leack headache. And i had to have 2 weeks of vancomycin antibiotics through my port a cath as well (which meant no shower for 2 1/2 weeks) TORTURE!!! I just had the blood patch procedure done yesterday, so instead of the headache now, i feel like someone kicked me with steel toe boots in my back! Actually, it is better than the headache! Anyway, i had to take a break from reading everyone's "posts" because i was getting very confused with all the positive and negative things i was hearing about. The only thing that has gotten myself and my family through all of this is prayer and a great support system - without those, i know i would not have made it this far in my life. If you have read my bio, it would make more sense. Anyway, the good news - the pump has definitely helped my everyday day (night) chronic bone pain - i actually sleep for several hours consecutively now - which is a huge help. My children are starting to see the benefits of the pump as well - if i can just get back on my feet, i think things will get better - they always do. If i could give anyone advice on this web site, it would be this...Remeber that everyone one of us is created a unique and special way, and we handle life's battles in our own unique way! What works for me may not work for others, and that's okay! Finding a balance to keep us going and knowing that there is a reason we are here - i have chosen to focus on my faith and family but it is up to everyone to make their own individual choice - and that choice is what ever works best "for them"! Try to keep your faith, hope, and general happiness UP! It takes a lot more energy to be down and and agnry that it does to just be greatful! And i have had those days that i cry and cry and just want to give up (and that's normal) - but the next day can be different if you let it! God Bless everyone who struggles with pain - when i pray everyday for strength to get through each day, i include all of you who struggle as well. And to close - i did take my nice hot shower that i thought would never happen!!!

Comments (7) | Add comment

yeti105

3/27/08 3:54pm

With all that you have been through would you do it again? I have had spinal HA, seen a pt. die cuz his doc would not do a blood patch, and then you say it feels like you have been kicked with what was it? Steel toe boots in your back? I go for trial on 4/7 and psycho counseling 4/16. I have RA, hypothyroid w/nodules in the gland and am so afraid that this thing won't work. I also have FMS, chronic myofascial pain syndrome, the latter creates muscle spasms from hell and the doc said he can put baclofen into pump also. I just get worried it won't work, and/or doc will not "up" the dose quickly enough, would you do it again? Thanks

shmirly

3/27/08 6:25pm

it is probably too soon for me to answer that question honestly. Give me a few more days...but like i said, my initial pain is soooo much better - they have morphine and bupivicane in my pump. they said it will take few weeks (3-4) until we get it adjusted just right. The one thing that made my decision easier was that i have been with my dr. for 9 years! She has been nominated and awarded in the "top Docs" magazine several times, including this year - She is wonderful and i feel blessed to have her - more importantly, trust her. The bottome line is this - if doesn't work, take it out! When you sit and read and read and read, you are going to find stories that scare the crap out of you, that is why i stopped looking and simply "prayed and waited" for the right answer. The bigger question to ask me now is "do i regret it?" .....and the answer is NO! i am a believer in time and patience, and the fact that i can see some glimmer of "help" (not to mention i am just about weaned off of the hard core narcotics they had me on) i am willing to wait it out and give it a try - i would love to keep communicating with you, so let me know - ask away!! The one thing i didn't do was ask more people that went through the procedure ahead of time - and you don't need to hear about all of the "bad experiences", because i believe there are more "good ones" that just aren't told. Otherwise, would they really still be doing this procedure? Talk with you soon God Bless

Deb50

3/27/08 6:24pm

Hi Shmirlyx3,I'm Glad your home and Hope the Pump works Great for you.For me it has.My pump was put in Nov.7th 07,It has made a difference in my life and families.I got headache after the trial,but luckily it sealed itself.My only problem was my first refill last week,made me sleep for a couple days and very very nasuea's.I went in today and told the Dr to turn it down.I have Dilaudid in mine.Morphine did'nt agree with me.I'm so glad you got your shower.If you have any questions,let me know,Your Friend,Deb

shmirly

3/27/08 6:32pm

they have morphine and bupivicane in mine for now - but i am curious about dilaudid. Tha drug seemes to work better for me IV wise vs morphine - do you know if that would be the case in my pump as well? What did the morphine do to you? when you say it didn't agree with you, how? i have weaned off of just about all my narcotics now, so i hope to have a better base line soon. the dr said it can take several weeks to find the "right level and drug" did you find that? About how long did it take? I am hoping to return to work next week - i am fighting the whole "disability battle" and getting an attorney now. Keep in touch Deb, i look forward to getting to know you and will be checking in more often. God Bless PS - where do you live? I am in Sunny, hot, Arizona.

Deb50

3/28/08 10:35am

Thanks for writing,When I went for my trial last Sept.The Dr put in Morphine,I started itching all over,my chest was tight and I got till I could'nt pee,lol.It took me almost three months to get to the 0 pain level.It took three surgies to get it in,because of all the hardware I have and scar tissue.I got hurt on the job in 1990,and its been a fight the whole way with Comp.They stopped paying for all my medical treatment last yr.I wish you lots of luck with disability,don't give up keep fighting them.I did get SS Disability,and get 82 dollars a month.I thought Gheeez whatever will I do with so much money,lol.It was from my depression,from the pain.But my Comp disability came threw last year.

I did'nt like how I felt after my pump refill last week,I slept for three days.So yesterday,I told the Dr to knock it down a bit.My hips hurt a bit,but I'm AWAKE,lol.

I live outside of Charleston,WV. we are raising our two grandsons,because our daughter is terminally ill with Lou Gerig's Disease.Please Pray for her,she's only 33 and the boys don't understand whats really going on.I feel like I've wrote a book to you,but I Love connecting with others,and Having New Friends,I'm Always here for you,Your Friend Deb

sally

4/ 9/08 2:00pm

Oh bOy I had one of those head aches from a spinal about 20 years ago. I sure feel for you . I hope your head ache has stopped ny now. sending positive energy to you now ------------ ---- did you get it?--:)

shmirly

4/ 9/08 7:48pm

hi sally

YES - but i ended up having to get the "blood patch" done after 6 days of waiting it out. i should have known it would come to that. i have a blood disorder as well and i take blood thinner injections two times a day. they claim that it had nothing to do with it, but i think it did. anyway - with my other illnesses (is that a word?) the risk of infection is greater each time they "go in". i stayed on antibiotics (vancomycin) through my port for an extra 5 days. i am now back to work (limited), but i do feel the benefits of the pump now, i just have some surgical pain and my back starts to hurt if i am up too long. They said that will get better because there is still some fluid where the leak was. So, i'll take your positive energy anytime!!! i'm not sure if i have any extra positive energy to send back - but i can definitely keep you in my prayers and send those to you. Take care!

Kelliann

shmirlyx3

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