Day 2 of SCS Trial

[Kelly0514]

On final update for all of you out there. Didn't want to leave you hanging after you were so thoughtful to give me such great information.

After the 2nd attempt, they removed the SCS last Friday. I had it in for 5-days. The leads continued to move throughout the whole week and on the rare occassion I was able to get the sensation in my foot, I had it turned up so high, it actually effected my entire leg and was very distracting and borderline uncomfortable.

Since I didn't get the chance to truly experience it, I'm not going to move fwd with the perm implant. It's just not for me. If anyone is considering a trial, feel free to PM me and I would be more than happy to share my exp with you. Although it was unsuccessful for me, the sensation was a wonderful feeling and I can def see it helping many people.

I talked to my doc about next steps and he didn't have any recommendations off hand on the spot. I got back the beginning of May for a Rx refill and check-up. We'll see what he says then but its not looking very promising.

Physically I'm about 98% recovered, emotionally is another story. Knowing that this could be the end of options and the overall feeling of failure of this is too much to bare at times. I'm too young to give up now but I don't see a light at the end of the tunnel anymore. Some of you have mentioned the TDS thing but I'm not open to that. Some options are a match and some are not, that is NOT for me. I'm going to see my PCP tomorrow to see if she can help me with my anxiety/depression meds and something to sleep. For the last week I have had a really hard time sleeping and my anxiety/depression is increasing. I will cry at the drop of the hat and stay in the bed all day. I'm in a funk and need to get out. I'm also going to ask her for a recommendation to go see a counselor so I have someone to talk to that is neutral. Hopefully she can help.

Thanks again for all of your help and input while going through this process. I truly appreciate it and if there is any info I can provide in return, please let me know.

[Nanc]

Hi Kelly! I have been thinking about you and wondering what was going on with you. Thanks for updating us.

I am so sorry to hear that your trial was so unsuccessful. You really can't get a true sense of how the SCS will work when the leads move around like that!

While I have great support in my husband, I go to a counselor once in while. She is impartial and gives a different perspective...it is helpful! I hope you find some help soon, with both your pain and anxiety.

Take care,
Nanc

[CoralToe]

Hi Kelly,

I might have missed this earlier - so sorry if this has already been answered....but is your pain only in your foot, or throughout your leg? The reason I ask this is it is extrememly difficult to cover just the foot. The way that most Doc put in leads is referred to anterograde, meaning the leads are inserted in the upward direction - and the only way to get converage to your foot is to hit your whole leg.

Conversely my doc is one of the few who does retrograde lead insertion (which is also technically termed spinal nerve root stimulation) - specificly for people with CRPS or peripheral neuropathy in the feet. I have 1 of each - ie 1 lead placed in the normal anterograde fashion to cover my whole leg if needed, and 1 retrograde to fit just my affected foot. If you have it in your heart to try again, find someone who will do the retrograde method. It has been amazing for me

[Rrae]

Thank you so much for this update. You're right, it really means alot, especially since you've been thru such a time of it. This has really been a roller coaster and I feel for your depression and anxiety. I suffer both as well. I sure hope you choose to stick around and feel free to talk about everything. We have a great forum specific to these issues and I hang out there from time to time....but you've really landed a special place in our hearts because of your experience, and the fact that you didn't run the other direction when your other thread turned so ugly (i swear that has never happened here before ).
It would really mean alot to have you here, even to share your experience with newcomers......ok, have i resorted to 'begging' here??

Anyway, a counselor is a great idea. You and Nanc are so right, they come from a neutral standpoint and it's very helpful to feel so uninhibited.
Please know that you've still got a lot to hope for. We don't know what is around the corner waiting to happen in our lives. I admit that when I was at my worst down and out, I began to get suicidal ideation. I hope that you find someone to open up to before that dark cloud tries to get on you. When there seems to be no way out and no light in sight, it's very easy to begin to feel this way. You are stronger than you think, Kelly......

I'm so glad you've come here. You are a true blessing to know...

Rae

[CRPSjames]

Dear Kelly,

You may be down but you certainly don't sound out. You are right not to give up. Counseling is a great idea to get you back on track. At one time I also felt there was no hope, but there always is, especially when you are so young.

I found that counseling and meds enabled me to feel more hopeful and think more clearly, which is what we all need to do to be the best advocates we can be for ourselves. Instead of seeing things as the end I was finally able to see that I would just need a new path.

You will find a path too. Please don't despair!

[Kelly0514]

I hope counseling will help. I have an appt w a psychologist tomorrow. I'm going to be meeting w her for therapy sessions and a seperate psychiatrist to manage my meds. They both work closely together and are out of the same office so it should be a good partnership. I'm a little nervous for tomorrow but I'm hopeful as well. As we all know its not easy to talk about all our pain and emotions. I hope it will be therapeutic. Time will tell. I will start a new post with an update. Thanks again. U all keep me hopeful for a better tomorrow.

Good night to all.......

[Mark56]

A bright star who brings a fresh breeze to our neck of the ether woods..... [come to think of it, I remember very well the ether "taste" when at six I had tonsillectomy....... there I go again...]

I'll beg right along with Rae, encourage along with James, support along with Nanc that today is only the first day in the rest of your life!!! What new wonders will tomorrow bring!! Imagine, just years ago, there was no technology such as we now discuss; HECK, discussions like this could not even occur a few years back [ever grateful Dr. John]!!!

So, yesterday we learned I did not have CRPS, no bone cancer, not the heebie geebies, just good old Ben Franklinesque chronic GOUT of the lower legs and feet. HAH!!! Well, stim does nothing for that. Additionally, that right arm I have been complaining about.... well, the nerve is on its way away down south in dixie..... I no longer have grip in my dominant hand, the whole arm hurts like a migraine all day every day. I am not given hope for the arm.

BUT, I have a good left arm, so I can learn to write my signature with that one. There is a bright side. Somehow, somewhere there is a bright side in your situation...... AND I am feeling So Very Sad the Trial just could not be done for you, precluding the attempt at a permanent stim implant. I pray for you dear Kelly..... you are on my mind.

A counsellor is a good approach along with the meds to control depression and anxiety, and boy howdy do I KNOW THAT!! Right Rae? Fiona? How well we remember those dark days and nights. Nights I lay awake and awake wanting IT all to end. I am so glad God jumped in the middle of my funk, or I would not be able to deliver these words to you.

Somehow there will come to be a way to work with and in spite of the pain you live. Yes, we all live pain as you well know..... each in our own way. Pain may be allowed to swallow up that light at the end of the tunnel OR convince us it is in fact a train racing in our direction..... BUT we can demand to live our best in spite of the D A R N E D [sorry Dr. John] pain. I really and truly wanted to swear there, but I have not learned Eva's way around that dang fooled censor thing

Kelly, you have my deep respect for your strength of will, determination, perspective to recognize warning signs and seek out help when you need it most. YOU demonstrate a deep well of character worth there!!

My prayers are with you in this particular quest,
Yup indeed,
Mark56

[Rrae]

Originally Posted by Mark56

A counsellor is a good approach along with the meds to control depression and anxiety, and boy howdy do I KNOW THAT!! Right Rae? Fiona? How well we remember those dark days and nights. Nights I lay awake and awake wanting IT all to end. I am so glad God jumped in the middle of my funk, or I would not be able to deliver these words to you.

Mark56

No exaggeration there, Mark The worst part about those dark days was when we 'quit' hearing from you......
You literally were at the edge of a cliff of life or death.....the devil on one side of you holding a weapon, and [thank GOD] the Lord on the other.

Never again. Ever.

Rae