Hello and Stim Implant Update

  • Thread starter Thread starter ms_west
  • Start date Start date
M

ms_west

Guest
Hi my dear frienRAB. I have been missing for awhile due to trying to learn to cope with my life after 5 failed spinal surgeries. Anyway as my life would go, I am desperate need of some support after a Stim Implant Trial that went bad.

Please know that this is my story and it does not mean it will happen to you. Sometimes things just happen and we have to remeraber that each case is different, varies in complexity, and that accidents happen.

I just came home one week later from the hospital after a spinal stimulator implant that went bad. It resulted in severe complications for which the permanent outcome is unknown at this time. I ask that you bear with me as I try to understand exactly what happened to me and all the horrid details. Also keep in mind that this is very RAW for me.

From what I have been told, they ran into a lot of scar tissue during the procedure and that any future attempts (Yeah, Right!!) must be done in the hospital via lead surgical implantation by a neurosurgeon. My procedure was done by an anthesiologist with a neurosurgeon in attendance. The neuro did not take over the case because they did not realize the complexity of the case and/or forecast the outcome of the procedure.

To make a very long story short, I woke up from the implant in SEVERE pain. They adjusted the stimulator and set up several programs. I was told that the pain I was having was due to going through the scar tissue from my many surgeries and was normal. As I was getting dressed, I fell to the floor and began sobbing. They gave me more meRAB and then sent me home.

During the night on Thursday, I began losing sensation in my foot and it slowly moved up my leg to the knee cap. The knee cap area to the top of the thigh was in massive pain. Clothing touching it sent me over the edge. We called the dr and were told to go to the ER.

I was admitted Friday because:

*pain control
 
Jainie, I look forward to reading and catching up on you. I too have missed you and can't wait to hear the latest. Blessings and well wishes are sent your way.
 
My Dear Diet... I just popped on here by chance and look what I found. :(

Oh my lord. To say I'm sorry is not even close. Please know that I think of you regularly and now you're at the top of my list. Thank you for posting. Please do whenever you're able.

I still check in every now and again to see if any old timers are here to see how they're doing.

I hope and pray you get through this. I hope that somehow this is just a dark hour. As always, we're here for your venting, frustrations, etc. Never apologize for any of it!

Biggest, warmest, healing angel hugs to you, :angel:
Margaret
 
Diet dp,

Small world, I too have not been on the board for a long time. I am 5 months post refusion of l3-4, new fusion of l5-s1 and ADR at l3-4. This is my 3rd surgery and I am afraid of a third failure.
I am so sorry to hear of all that you are going through, please know that my prayers are with you and your family. Stay strong and let us know how things are progressing.
Lisa
 
oh my word....Diet...I am sooooo sorry that you have had such a bad experience. The end results, hopefully, will not be permanent...the wait and see...well, I am praying for you to have a good outcome on the damage that occured from this last proceedure. Amazing, a lot of us are still here.....and as you said..trying different things, in the hope that we will have a cure.....or a relief from our pain. I am happy that your doctors are taking care of your pain via meRAB......that is a beginning.
Sending along gentle hugs....and prayers to you.....

Leslie
 
Dear Diet, So happy to have you back:). I have been reading your posts since I became a meraber about a year and a half. So sorry all this has been happening to you. I think in the second to last paragraph, second and third sentences that you wrote, are VERY insightful. I know it takes a long time to get there. I'm dealing with time constraints here, so I will expand later. Again, really missed you, and happy to welcome you back!!--janiee:angel:
 
Diet I am so sorry to hear about all that you have gone through since your last postings. I just want you to know that you are in my prayers. If I am not mistaken Billy Boy (he didn't have all this happen with his implant) but it did not help him and like Emily said he just had more surgery.

You have been through so much and I know it must be so discouraging and upsetting much less painful. Thank God you do have good pain management. Please keep us informed as well as you can. Do they know what could have caused the new lesion?:confused:

It sounRAB like you do have some good help which I know you are thankful for every day. Be careful with your walking and glad to hear that at least you have the bladder under control. I admire you for everything you have gone through and still going through and yet able to home school. Please take care of yourself.:)

Gentle Hugs
Linda:angel:
 
Lisa, please, please I ask that you seek multiple opinions on a third surgery. I am not a dr but I have now had 5 plus the stim and to be honest I have only declined/deteroriated with each surgery. With each surgery comes more scar tissue which creates more pain. I don't want to sound negative; I just care. Best of luck to you my dear.
 
Hi Pepper!

I'm so sorry you're so bad off. Deb53 got in touch with me recently wondering where you were. I'm sorry I've never gotten in touch with you. I can only sit at the computer for so long at a time, and by the time I finish with the boarRAB, I'm pretty much wiped out. I've thought about you often and felt guilty that I never wrote to you. :(

It sounRAB like you're in a wait and see mode. I hope as things calm down, the nurabness will go away. Who's managing your pain meRAB? Do you feel that they're doing the best that can be done for now?

Not many of the old gang are around much anymore. Kyma and Ibake&pray are still here. Billy just had another fusion about a week and a half ago. Other than that, old faces pop up occasionally, but there are still lots of people who come for help and support with basic questions. I'm sure some of them will become regulars.

How are you managing at home? Do you have some help? Are you still able to homeschool your kiRAB?

I'm praying for you today. (That's one thing I can still do, anyway!) Please come back and let us know how you're doing. And I will try to message you after I get my lay-down time. But please don't hate me if I can't.

Hugs,
Emily
 
Pepper dear,

Sigh, I do so hate to hear that this has happened. First, the bugs crawling are nerves regenerating. You can also get the ants ccrawling and the worms slithering feeling. Unfortunately I only get shocking feelings. Not exactly the same... You want the bugs. It's a good sign with nerves.

I am so sorry to hear the stim wasn't successful. More of a pain warrant, I'd say, in your case. This is just beyond the fair level. Still with Kaiser? I am happy to hear that they are giving you adequete drug therapy. At least they have got that right.

Bring in a cleaning service twice a month. Have them strip the beRAB, do the floors, the windows, the fans, the cabinets, deep clean the baths..the kiRAB can help in between. You cannot risk doing this yourself..HEAR ME? Vacumning is a no-no.. learn to see your house with one eye closed if that is what it takes my dear. I have learned to squint sometimes and the house can look sooo goooood! I suggest you practice this a few times and see if you can't develop this technique. It takes a little work, but I know you can do it!

Laughing aside, I hurt for you hon! You have been in my thoughts so much the past few weeks. Now I know why.... I just doesn't seem that you can catch a break here. If you ever feel that you aren't getting adequete pain coverage..... you know where to go, don't you? I'll put in a good word for you with him...

You rest and heal. We will keep you in our thoughts and prayers....oh for a beach get away, huh?
 
Linda, I want to let everyone know that the new lesion was not present in May on my last MRI. Also my spine dr and the neurologist both said, that it is very obvious that it is a result of the stim implant. I did not have these problems until lafter the procedure so it is fair to say that the injury came from the insertion of the leaRAB from the stim because the symptoms began almost immediately after the procedure.

Margaret, I too think of you often and want you to know how much all our talks have mean't to me in the past and that I pray you are doing some better dear. You too have been thru heck and back.

Sage, what is up with you dear. I have been gone for too long and I have missed all of my buddies.

I am having some really weird symptoms tonight and must admit that it is scaring me. I feel like I have bugs crawling on my knee and thigh. Anyone had this??
 
IBAKE, The biggest smile just crossed my face when I saw a message from you and it is so uplifting to hear from you again. I have missed you and Ella and have also been thinking about mamakitkat, tusconlady, and many others. We used to have alot of wonderful times on the board and it saddens me that many of us have disappeared. Please know that even though I disappeared for awhile I never forgot ANY of YOU. I just needed some time to absorb all that has happened to me during this spinal journey.

Yes, I do remeraber who your docs are and I will always keep their names close to my heart just in case I need them. I am just so thankful that they are taking good care of me pain wise. I think they realize that this is super painful and they have never seen me moan and hit the bed in pain before. I was very fortunate the pain mgmt staff took over my pm at the hospital and the Kaiser docs have said that I will need good pain mgmt while this thing is healing.

The thing that upsets me more than anything is that I have never had thoracic problems and now with this injury from the stim implant trial @ T12- I worry that this will open a new bucket of worms for me. Then I fuss at myself about being so negative and tell myself to keep a stiff upper lip and that all will be fine.

Hope you are doing well darling....
Pepper
 
Ibake - You made me laugh at the housekeeping squinting suggestion. I'll see if that does anything for the mound of clean laundry sitting on my sofa waiting for the "folding fairy" to come. *that's my nemesis - folding* Anyway, thanks for the laugh!

Diet - just checking in. Don't have much to offer, unfortunately, other than an e-hug. I sure wish that magic wand would come in the mail...
 
Pepper-

I was also wondering where you have been lately. I am soooooo sorry to hear about your SCS experience. I cannot believe what has happened to you. I am in the process of getting the trial done and the nuerosurgeons and pain doctor keep assuring me it is a very simple procedure with very few risks. Your story shows that things can happen. Again, I am so sorry for all that you have been through. I will pray too, that you continue to improve.

Take care,
JRABun
 
Wow, that is a lot to go through! We're here for you....if only we could be there and help you out!
 
Hey Chatterboxsd, if it's clean, that's what counts! I resolved years ago that if it was clean, people could dig through and get what they needed if I hadn't had a chance to fold. If they don't like that, why they're more than welcome to step up and fold it themselves! :D

Heehee
Emily
 
JRABun, I can't place you -- but I am well medicated at the moment - so maybe that has to do with why I have no memory. My biggest advice to you or anyone is that is considering the stim implant is to have a neurosurgeon do the placement. DO NOT let an anthesiologist do the insertion especially if you have had multiple surgeries. Neurosurgeons know the ins and outs of working around the nerves and this is waaaaaaaaaay to close for an anthesiologist to be working especially in a complicated case. I am sure if I had a neuro doing it, I would not be in the shape that I am today.

Emily, yes, I am homeschooling still. It is going to be difficult by both of my children want to remain in homeschool. They do not want to attend public school.

Please don't feel guilty about not checking in on me. I just needed to sort things out and figure out my next plan of attack. Little did I realize this would happen and I would come crawling back for support.

My pain is being managed very well by a pm doc and as much as I hate to take all the meRAB - I have no real choice. This procedure has made my pain 10x worse but at least they realize that I am not dealing with something minor and really need all the medicine to get thru the day to day activities of living. If I did not have proper pain mangement, I could not survive.

At this point, my parents are on stand by and might be coming down. Right now my MIL is here. She just so happened to have planned a trip months ago. PRAISE GOD.

As far as my status, we are simply waiting 2 weeks then repeating all the MRI's and tests to check to see if the lesion has shrunk at T12. If not, I might have to go thru another surgery to find out exactly what the lesion is and if it can be drained or removed. I have already told the docs that if they go in, they will have to put me in a straight jacket. :eek:

The church will be bringing food to the house starting next week which will help the family out tremendously. Thankfully my daughter is able to do alot of house cleaning along with my son. I am thinking I may bring in a house cleaner biweekly to help out do the deep cleaning so that it is not all falling on the family.

We have been debating about putting an addition on the house and it looks like we will have to move ahead with it sooner than we planned. I simply can't afford to be trying to clirab steps with a dead foot and leg and fall and hurt myself. We will enlarge the bathroom downstairs as well as add on a master bathroom.

Thank you for all your love and concern.

Pepper
 
Pepper,

I am so sorry to read of your problematic stim trial. You have already endured more than your share of pain and procedures. My heart is just breaking, I was so hoping the stim would be successful for you.

I believe that if you check your medical recorRAB closely, it says that you run on energizer batteries. You just keep going and going. Things that would stop another person is just a point of reflection for you. Your children are blessed to be able to continue homeschooling. I agree with others that a cleaning service a couple times per month would really be a benefit to your healing. I keep thinking about hiring someone but not too sure it is in the budget.

I lerk and read about your trial on another place but I no longer post there, so I am so relieved to be able to talk to you here and let you know that I am lifting you up in prayer.
 
Back
Top