[Hana]

I need either a stimulator or pump and I am afraid of them both. I only have my own council so please chime in if you like!

I have different types if neuropathic pain in different areas.
I have sciatica and RSD in different spots..
RSD is primarily my upper body pain.

Sciatica and spinal related pain is the other most major pain, and most is in the lower half. I'm at the limit with meds and my ability to function. I have to do something and I am nervous. Until a few months ago I was able to get enough rest that my legs would work and I wouldn't have that level 10+++ pain until about 2.
In my upper extremeties I have RSD as well as spinal cord related neuropathy. The RSD manifests as fingers boiling hot and swollen or frozen blue and swollen, along with the pain associated. Otherwise, My hand goes numb if I lie of my side... I drop things...

In the lower I have excruciating pain from sciatica and pain from different spots along my lumbar spine that impinge my nerves. L2-S1 Standing becomes impossible. I cannot find a comfy place to sit..and now I take bed pillows to sit on and lie against. Its not possible to roll over in bed.
I tried to fit my day into that amount of time 7AM to 2 PM. Now I wake up and my legs are aching ,and the stabbing begins.
I am getting anxious because my hands do not work well from the RSD, and I cannot prepare a meal,...well. I am sad to say I am pretty well on my own at home, and I am at the limit of my abilities.

I go back to the doc on friday, a 2 hour drive from here. I dread it only because of the time having to spend sitting and standing without ability to move my body to get comfortable.

Either I go with 2 stimulators or a combo of pump and stimulator? I'm not wild about infection risks.

Pain has driven my family away. They cannot tolerate seeing me in it, and can't be with me, so I am grateful that you are here to relate to.
Pain is pain. It is not who we are. It is a gift to experience pain because of the ability it has given me to appreciate you and the gift that life is. Never waste a moment....

[chrelsey]

Hana,

Welcome! I am sure that you will get some great input from the wonderful members here. Their support and encouragement has been invaluable to me as I, too, struggled with the decision of whether or not to get an SCS.

I am so sorry to hear of the pain that you are in, and the limitations that it has placed on you. This beast truly does wreck havoc on us physically, mentally, emotionally, etc.

I had my SCS trial in mid-December, and had the surgery for my permanent implant on Christmas Eve. I, too, was terrified - I had read so many horror stories, and so many other procedures, surgeries, etc., had failed, and I just didn't put much faith in this working, either. I can honestly say that having my SCS has given me a part of my life back that I thought was lost forever. My pain level has gone from about a 6-8 on any given day, down to a 1-3. I no longer walk with a limp, and I can sleep in bed for more than the one hour I was managing before the surgery.

The absolutely amazing thing about the SCS is that you can try it out before moving forward. The trial lasts about 3 days (maybe a couple of days longer, depending on your doctor), and you can get a good feel for whether or not it will be effective for you before moving forward. Have you talked to your doctor about the trial? If not, you might want to check into it.

Please keep us posted on how you are doing, and don't hesitate to ask questions, vent, or just lurk and read!

=Becky

[PamelaJune]

It's ok to be afraid, it means you are taking your health seriously and not blindly following suggestions by others.
Personally, I'm terrified of the ketamine infusions, but that's because I've got a hang up about medications and the stigma that goes with being a long term prescription health user.
I trialled the SCS in November and had the permanent put in December 17th a week before Becky had hers. I had some problems and had to stay in hospital for 4 nights but nothing dramatic. They could only get one lead in instead of two. I know the trial worked for me and because it did, I'm hoping to get a paddle to replace the one lead I have.

[pooh_ac]

Welcome Hanna. unfortunately you have developed a love hate relationship with your body. We have had a couple of members who have "twins" ( 2 neurostimulators) the best thing I can tell you is to ask you pain doc LOTS of questions, come here and ask even more questions... Read through the threads. I suggest starting with this thread: http://neurotalk.psychcentral.com/thread117854.html
It traces Marks Journey.
z

[Hana]

Hi PamelaJune, Becky and pooh_ac. Thanks!
All of your stories, or what I have read so far are incredible and inspiring. I do have hope, although this feels different from any other surgery or journey I have had. I'm not trying to cure the pain or irradicate the disease, I'm trying to learn how I can live with it. My time up to type is limited as it is for for everything,so I'll keep this short tonight.
I'll read through the threads as much as I am able and I am interested in Marks Journey too. So many of your stories are beyond belief.
Right now I am thinking I need to slow the process down long enough to have a clear picture. When I went to the doc I expected a contentious meeting, but instead he told me my options of Pump and SCS, or 2x SCS, and RFA . Then We'll talk about what I've decided (friday). It's a lot. He thought the pump would work best low, but also said he could do a 2x stimulator. He mentioned risk of damage to my cord with the pump up high. So that was all I knew as of last friday.
I'm fearful of using a stimulator around RSD when vibration is one of my triggers, so I'm super interested in anyone with similar RSD experience. I'm also concerned about the massive amount of scar tissue in my cervical and thoracic region being an obstruction. The worst thing would be yet another episode. In the last 2 years I have lost most of the function of my left arm. The muscle and bone wasting has been miserable. If I could halt the progress I would be happy, and to diminish pain would be a dream! All I know is that like some, I can't take anymore pharmaceuticals. I have fentanyl, oxycodone, neurontin ,valium and metaxalone.
Thanks again!
Hana

[Rrae]

Welcome to the group!

You'll be pleasantly surprised at the amount of genuine care there is here.
I am so very sorry that you too are a victim of this most frustrating condition in the world (imho) Living with RSD is a 'silent' pain and most people do not understand nor comprehend it. There is only ONE other type of pain that is so hard to face and that is the pain of rejection, especially family and friends. I'm so sorry that your family isn't supportive. It comes off as either a) they don't seem to care or b) they don't believe we are in the amount of pain we so desperately try to explain. But in reality, it's like you say - that they don't want to see us in this 'unexplainable' pain and they don't know what to say or do.

You have obviously done your research on these units. Good for you. As you read thru others' testimonies, you'll find quite an array of experiences. The positive ones are so good to read about, yet it's also good of those who have come on here to share their frustrating stories and bad experiences. This gives you a realistic idea of how things can go. It leaves you with good questions to ask your doctor.
Like Pam said, it's ok to be frightened about the procedure, but also leave room to be able to dwell on what the SCS/PP can possibly do for your quality of life.
Every single person has different experiences, yet we all share a common bond. We all experience the same emotions.
We are all here for one another and so glad you came upon this forum!

Caring,
Rae

[pooh_ac]

Please feel free to search out my threads and replies. My injury was indeed crazy. But when you are a nurse and a ranch wife things happen. The worst part was the time it took to get my diagnosis. I am on my third unit and would not be on this earth without them

[Hana]

Thanks Rrae and pooh_ac.
I am beginning to read.. and am astounded and inspired by all of this tenacity and strength. I'm looking forward to connecting more .. soon! For now I can't sit more than an hour a day, and I can't get comfortable to type, so I'll be brief. I would like my life back ... just have to remember the goal!!

[Mark56]

Debilitating, chronic pain is isolating, and difficult for those near by to understand or cope.

Pace yourself in all decisions. This is not a race. Inform, inform, inform. Then, being informed, you are better able to try a choice which is best for you. All of us are different. The choice needs to fit your need.

Hoping and praying you endure with strength through the choices, M56

[eva5667faliure]

Originally Posted by Hana

I need either a stimulator or pump and I am afraid of them both. I only have my own council so please chime in if you like!

I have different types if neuropathic pain in different areas.
I have sciatica and RSD in different spots..
RSD is primarily my upper body pain.

Sciatica and spinal related pain is the other most major pain, and most is in the lower half. I'm at the limit with meds and my ability to function. I have to do something and I am nervous. Until a few months ago I was able to get enough rest that my legs would work and I wouldn't have that level 10+++ pain until about 2.
In my upper extremeties I have RSD as well as spinal cord related neuropathy. The RSD manifests as fingers boiling hot and swollen or frozen blue and swollen, along with the pain associated. Otherwise, My hand goes numb if I lie of my side... I drop things...

In the lower I have excruciating pain from sciatica and pain from different spots along my lumbar spine that impinge my nerves. L2-S1 Standing becomes impossible. I cannot find a comfy place to sit..and now I take bed pillows to sit on and lie against. Its not possible to roll over in bed.
I tried to fit my day into that amount of time 7AM to 2 PM. Now I wake up and my legs are aching ,and the stabbing begins.
I am getting anxious because my hands do not work well from the RSD, and I cannot prepare a meal,...well. I am sad to say I am pretty well on my own at home, and I am at the limit of my abilities.

I go back to the doc on friday, a 2 hour drive from here. I dread it only because of the time having to spend sitting and standing without ability to move my body to get comfortable.

Either I go with 2 stimulators or a combo of pump and stimulator? I'm not wild about infection risks.

Pain has driven my family away. They cannot tolerate seeing me in it, and can't be with me, so I am grateful that you are here to relate to.
Pain is pain. It is not who we are. It is a gift to experience pain because of the ability it has given me to appreciate you and the gift that life is. Never waste a moment....

welcome
welcome welcome
so relate to your story
my passion cooking
i drop everything also
so happy to read you
experience strength
and hope
miracles do happen
hear our prayers