elsa (@elsa)

Thanks so much for your reply. I'm glad that you've found substantial relief from your Medtronics SCS. I'm at least 7 weeks away from a trial and am starting with Nevro's HF-10. Is the Medtronics Intellis high-frequency or low? The HF-10 is high frequency which appeals to me because I don't think I'd like paresthesia; would prefer no sensation. I've held off on doing an SCS for a long time (10 years) but now I'm eager to do the trial because my pain has gotten substantially worse and it's hard to get my mind off it much at all. Thanks again for sharing your experience and for your support.

Hi. If I pass the psychological assessment, I'm going to have a SCS trial later this summer. I read with interest your comment about a SCS helping a fair amount. Could you elaborate a bit about the ways in which it has helped you. For example, how far can you walk compared to before? What other forms of exercise can you do? Etc.
I had an L5/S1 microdiscectomy in 2010 during which the surgeon tore the dura. That was the start of ever increasing nerve pain. Was on opiates for 8 years but in 2018 I graduated from Mayo's 3-week pain rehab program. Had been doing okay but then about 18 months ago I developed allodynia in both buttocks. Now sitting has become terribly painful. In addition, I now have right-side lumbar pain and shoulder pain. It feels like my whole right side from lumbar to neck is trying to compensate for pain & weakness. Hurts to sit, stand, walk. Only time I get relief is when I'm asleep of lying on my left side with pillow between my knees.
I'm 65 years old and have gotten lots worse in 10 years. Fearful for what the next 10 will bring.

Thanks for any further info you can provide about your SCS. (By the way, what kind is it? I'm have a trial of Nevro's HF-10).

–Elsa

Is your doctor Dr. Linda Bluestein? I visited the WI Integrative Pain Specialists web site. I may consider visiting there to see what they might offer me.

I have an appointment this Wednesday at Mayo's Pain Clinic. I plan to ask them about the combination of oxytocin & ketamine troches. I will also ask them about a "high dose steroid pulse". A 3-day steroid treatment was offered me by my MS doctor. I've postponed it for the time being because I hate steroids (I take 40mg prednisone occasionally when I have an upper respiratory infection or when my asthma flares up.)

I am very sorry to hear about your Tarlov cysts. I can only imagine your frustration and worry over getting the treatment or surgery you need. I wish you all the best in getting an appointment with Dr. Feigenbaum. I hope the surgery is successful and provides you with relief.

Where in WI do you live (if I may ask. If not, I understand!)? I am in Madison.

All Best,

Elsa

qball2019: Thanks very much for your reply. It was illuminating.

I had never heard of an oxytocin or ketamine troche. I imagine the oxytocin hormone helps a person to relax and imparts a feeling of well-being. How do you feel taking a combo of an oxytocin troche & ketamine troche? Does it make you sleepy or does it affect your memory/cognition?

I've been living with severe neuro pain for 9 years. Early in the progression of the pain, I would occasionally go to the ER seeking relief. A time or two I was given a ketamine injection which relieved my pain for 12-18 hours. I was grateful for even that small window of relief.

I am going to be seen at Mayo's Pain Clinic next week. I hope that they will take a fresh look at my symptoms and try to understand, with more precision, what is causing the pain to have spread and gotten more worse. Of course, I also hope they can offer me a treatment to lower the pain. I will ask them about the treatment you now follow.

This week I received a 2nd lidocaine infusion. I had the first one, 350mg, a couple weeks ago and it did nothing. This week they increased the dose to 500mg. It hasn't helped either and unfortunately, 500mg is the maximum dose they'll do.

Are you seen at the Mayo Clinic? If so, which one?

Thanks again for your message. I'll let you know what happens at Mayo. I wish you all the best, and hope your pain will be better controlled.

–Elsa

Thanks very much for your response; it was enlightening.

I used to get steroid injections at L5-L6 but they stopped working. I do take 1800 mg/day of gabapentin. I also take CBD oil and low-dose naltrexone. I'm sure the gabapentin helps a little but I'm less sure about the efficacy of CBD oil and low-dose naltrexone. For 8+ years I also took morphine and hydrocodone but it's now been almost a year since I've taken any opiates.

I gather that lidocaine infusions are a pretty new pain therapy. Here's a 2017 article about them:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5323245/

I haven't tried massage but hope to do so. I've also tried dry needling which has been helpful for the neuromuscular part of my pain.

I wish you all the best with managing your pain.

Oops. There's a typo in my previous reply. I meant to write that lidocaine, NOT ketamine, infusions last 1 – 2 weeks. I don't know anything about ketamine infusions. Sorry for the confusion.

Lori Renee, Thanks for sharing what you know. You might want to inquire about ketamine infusions. I'm told they last 1 – 2 weeks and take about 1 hour to do. Depending on the type of insurance you have and the level of pain care you can get through your local provider, infusions might be preferable to using lidocaine patches. I imagine patches aren't all that easy to keep solidly attached to your feet.

Yesterday I had an appointment at my local pain clinic (UW Health in Madison, WI). Each time I visit, they have me color code a diagram of where my pain is and what kind of pain it is (e.g, yellow = aching, blue = burning, red = stabbing, green = tingling, etc.) I colored in the entire back of my buttocks and hamstrings on both sides as both aching and burning. That kind of diagram is new for me because in the past my pain was much more localized. The pain PA who I saw said that that type of diagram, i.e., broad, expansive areas of burning pain, along with a description of the pain being in the skin, was what she typically sees from her pain patients who have MS. I have MS and I also have had chronic neuro-skeletal-muscular pain due to a disc injury and subsequent microdiscectomy in which the surgeon tore the dura.

The PA at my Pain Clinic ordered a lidocaine infusion which I will be scheduling. That said, I came home and did a bit of research online and found a brief article titled “4 Infusions that can help relieve chronic pain” https://www.painnewsnetwork.org/stories/2017/10/22/4-infusions-that-can-help-relieve-chronic-pain.

The 4 possible infusions are: 1) ketamine 2) Immunoglobulin 3) lidocaine and 4) stem cells

I subsequently sent a message to my pain doctor as well as my MS doctor and PCP. The MS doctor and PCP said that was a question for the Pain Clinic. The Pain Clinic wrote back and said: “the UW Pain clinic doesn’t offer ketamine, immunoglobulin or stem cell treatments. You are welcome to explore those options.”. This is so TYPICAL of healthcare at places other than Mayo. No real coordination between departments. Neurology refers me back to the Pain Clinic. The Pain Clinic only does lidocaine infusions so they don’t try to answer the question or try to call Neurology and find out exactly what types of infusions are actually possible between the Pain Clinic and UW Hospital which serves neurology patients. Ugh! I requested an appointment with Mayo Neurology but was turned down (even though I’ve been a patient in the past and have graduated from Mayo’s Pain Rehab program). I plan to persist and see if my PCP can call Dr. Keegan (the MS doctor who’d seen me in Mayo Neurology) and explain to him the kind of wall I’m running into locally.

Anyway, I’m writing to ask if any of you have been any experience being treated for severe neuropathic pain in the skin with ketamine, lidocaine, IVIg or stem cells? I have MS which, of course, is an autoimmune disease so I suspect IgIV might be appropriate but I really don’t know.