1. < Chronic Pain

Infusions for widespread, intense nerve pain, probably due to MS

Posted by elsa @elsa, Feb 6, 2019

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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

elsa | @elsa | Mar 1, 2019

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

REPLY
qball2019 | @qball2019 | Mar 1, 2019

I live in Wisconsin and I've been seen at Mayo Clinic Rochester. I was there back in 2003 after my initial injury. My doctors referred me back there but I just got a letter last week telling me that they reviewed my records and don't think they have anything more to offer me. I am upset about that because I have multiple Tarlov cysts, also called perineural cysts in the sacral area and they are causing all the cauda equina symptoms. These cysts were present over 15 years ago and they were never brought to my attention or even considered to be the cause of my pain! All those years all the doctors just kept telling me that they didn't see any reason for my pain. Doctors, even the ones at Mayo in the Spine Center don't want to admit that they cause issues. I asked and Mayo has only done a couple surgeries on these cysts and aren't doing it anymore. It's a serious operation with potential for even more nerve damage so most doctors don't want to even attempt it. (avoiding a lawsuit). There are only 3 neurosurgeons in the U.S. that are known to specialize in this surgery. I am currently waiting for a surgery date with Dr. Feigenbaum from the Tarlov Cyst Institute at Pine Creek Medical Center in Dallas, TX. He has done more of these surgeries than anyone else and has has the best outcomes. It's either allow the cysts to continue to cause more nerve damage & other symptoms or risk the surgery.

Anyway, I have a doctor from a pain clinic, an integrative pain specialist, physical therapist, and my PCP that all communicate and work together on my treatment. The doctor from WI Integrative Pain Specialists is also an Anesthesiologist and specializes in connective tissue disorders. She is the one that prescribed the Oxytocin and Ketamine troches. I know if you Google Oxytocin and Ketamine for pain there is some awesome info. about it that comes up. Also, this doctor has people that fly in from all over the U.S. so if you can't find anyone near you please don't hesitate to ask me for her contact info.

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2 replies
elsa | @elsa | Mar 4, 2019
In reply to @qball2019 "I live in Wisconsin and I've been seen at Mayo Clinic Rochester. I was there back..." + (show)
@qball2019

I live in Wisconsin and I've been seen at Mayo Clinic Rochester. I was there back in 2003 after my initial injury. My doctors referred me back there but I just got a letter last week telling me that they reviewed my records and don't think they have anything more to offer me. I am upset about that because I have multiple Tarlov cysts, also called perineural cysts in the sacral area and they are causing all the cauda equina symptoms. These cysts were present over 15 years ago and they were never brought to my attention or even considered to be the cause of my pain! All those years all the doctors just kept telling me that they didn't see any reason for my pain. Doctors, even the ones at Mayo in the Spine Center don't want to admit that they cause issues. I asked and Mayo has only done a couple surgeries on these cysts and aren't doing it anymore. It's a serious operation with potential for even more nerve damage so most doctors don't want to even attempt it. (avoiding a lawsuit). There are only 3 neurosurgeons in the U.S. that are known to specialize in this surgery. I am currently waiting for a surgery date with Dr. Feigenbaum from the Tarlov Cyst Institute at Pine Creek Medical Center in Dallas, TX. He has done more of these surgeries than anyone else and has has the best outcomes. It's either allow the cysts to continue to cause more nerve damage & other symptoms or risk the surgery.

Anyway, I have a doctor from a pain clinic, an integrative pain specialist, physical therapist, and my PCP that all communicate and work together on my treatment. The doctor from WI Integrative Pain Specialists is also an Anesthesiologist and specializes in connective tissue disorders. She is the one that prescribed the Oxytocin and Ketamine troches. I know if you Google Oxytocin and Ketamine for pain there is some awesome info. about it that comes up. Also, this doctor has people that fly in from all over the U.S. so if you can't find anyone near you please don't hesitate to ask me for her contact info.

Jump to this post

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

REPLY
qball2019 | @qball2019 | Mar 4, 2019

@elsa

Hi Elsa,

My name is Terri and I live in Lakewood, WI. It's about 1.5 hours straight north of Green Bay (in the woods). Yes!! Dr. Bluestein is my doctor! I just got back from an appt. with her this afternoon. I'll tell you, she gets things done!! She's very personal and absolutely understands people's suffering. If she suspects something is going on with you she jumps right on it and gets answers. She thinks out of the box when confronted with a tough case and she never thinks you're crazy. The list of symptoms I've acquired over the last year make me look crazy on paper and she is the only one that understands & looks into the causes. When you have nerve pain it does cause some crazy symptoms. I do need to let you know that she doesn't accept any kind of insurance at all. However, she called my PCP and they agreed to work together. That way my PCP would refer me out for any tests, imaging, etc. so it would be covered by insurance. You just need to pay cash for the appts. with her and she is so worth it. I would be so excited for you to see her. I know you wouldn't be disappointed. Please let me know if you make an appointment!

If you feel comfortable, please share your story and symptoms with me.You can private message if you like. I know you mentioned MS and my heart goes out to you. We may have different diagnosis' but we have many of the same symptoms! Maybe we can swap ideas for things that work for the pain. Those steroids are nasty! Do they have you taking Naproxen or Tumeric for inflammation at all? I'll bet the oxytocin & ketamine troches would work great for your pain though. It's hard to find a pharmacy that will make them but I'm pretty sure there is one right in Madison by you that does. If not there is a pharmacy not too far from Dr. Bluestein that ships mine to me and they've been great.

Were you able to find info. on the oxytocin & ketamine combo for pain relief? If not, I'll dig some up for you.

Terri

REPLY
chrisfink | @chrisfink | Mar 7, 2019

Hi Elsa. Keep us updated please about your journey. I was offered ketamine infusions this summer by University hospitals cleveland for my 5 yr thorasic nerve pain. I turned it down because i was scared. Since then my wonderful Pain doc Dr. Zumbar, agreed that I should keep searching for an answer and recommended a colleague Dr. Ryan WagnerSports medicine in Bucyrus Ohio and Marion Hospital Marion Ohio .So off i went first week of jan 2019. After hundreds of intercostal injections epidurals blocks accupuncture blah blah blah you know the drill. The drugs from gaba to cbd oil. The specialists. This young man who thinks outside the box found a nerve inside rib end T10 and T-11 which he injected in his office , painlessly, because he took almost an hour. I am almost pain free now and this was instrunctional for his other ideas for longer relief in the future. And now because of your video i will no longer be afraid of ketamine infusion. Everyone please keep looking for your answer but i do know how its such an exhausting full time job to b your own advocate. The money out of pocket for most will be a problem also. I have my first grandchildren and ive been tenacious! Med mutual hates me im sure. Ill b paying out of pocket for PRP when and if these injections wear off. Bless you all my fellow friends in pain
Christine

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 27, 2019
In reply to @elsa "Thanks very much for your response; it was enlightening. I used to get steroid injections at..." + (show)
@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.

Jump to this post

Hello Elsa

I hope this post finds you receiving pain relief. I scrolled back through posts searching for anyone who has recd lidocaine infusions. You spoke of Low Dose Neltrexone as well.

I'm sreally suffering from wide spread Small Fiber Neuropathy and have received infusions for 3 and a half months to which I broke from this week. I needed a mental break. Dose up to 1000, getting metallic taste in mouth that lasts a couple days, partial face numbness. It scares me honestly. Needed to prove to myself if it's worth sitting there every week for over 5 hours and enduring side effects. Stopping is the only way to do so.

It certainly does not bring sufficient relief to my most problematic areas but overall does provide relief in various places. With or without, I still need 4 hydro each day plus Duloxetine, Lyrica and newly added plethora of supplements.

My PM Dr. recommended low dose naltrexone last Dec. I filled the script then never took it because I wasn't prepared to stop hydro due to my pain levels.

Heard great things about ketamine infusions but insurance won't cover and I can't afford out of pocket.

Meeting with my Neurologist Wed and I believe his next suggestions are IVIG (which confuses me bc I don't have an autoimmune disease) and plasmapherisis. Both difficult to receive insurance approval for.

If you are willing to share info or experiences on any of these mentioned topics I would be very grateful.

Also, anyone else out there is welcome to add to the conversation.

Thank you. Much appreciated!
Rachel

REPLY
layla2 | @layla2 | Jun 11, 2023
In reply to @qball2019 "I live in Wisconsin and I've been seen at Mayo Clinic Rochester. I was there back..." + (show)
@qball2019

I live in Wisconsin and I've been seen at Mayo Clinic Rochester. I was there back in 2003 after my initial injury. My doctors referred me back there but I just got a letter last week telling me that they reviewed my records and don't think they have anything more to offer me. I am upset about that because I have multiple Tarlov cysts, also called perineural cysts in the sacral area and they are causing all the cauda equina symptoms. These cysts were present over 15 years ago and they were never brought to my attention or even considered to be the cause of my pain! All those years all the doctors just kept telling me that they didn't see any reason for my pain. Doctors, even the ones at Mayo in the Spine Center don't want to admit that they cause issues. I asked and Mayo has only done a couple surgeries on these cysts and aren't doing it anymore. It's a serious operation with potential for even more nerve damage so most doctors don't want to even attempt it. (avoiding a lawsuit). There are only 3 neurosurgeons in the U.S. that are known to specialize in this surgery. I am currently waiting for a surgery date with Dr. Feigenbaum from the Tarlov Cyst Institute at Pine Creek Medical Center in Dallas, TX. He has done more of these surgeries than anyone else and has has the best outcomes. It's either allow the cysts to continue to cause more nerve damage & other symptoms or risk the surgery.

Anyway, I have a doctor from a pain clinic, an integrative pain specialist, physical therapist, and my PCP that all communicate and work together on my treatment. The doctor from WI Integrative Pain Specialists is also an Anesthesiologist and specializes in connective tissue disorders. She is the one that prescribed the Oxytocin and Ketamine troches. I know if you Google Oxytocin and Ketamine for pain there is some awesome info. about it that comes up. Also, this doctor has people that fly in from all over the U.S. so if you can't find anyone near you please don't hesitate to ask me for her contact info.

Jump to this post

qball--I am in WI too and just joined the tarlov cyst groups on facebook, are you on there? I have been having what I think is high pressure since a manual manipulation in Jan and now I have saddle pain and walking trouble and a cyst in sacrum. Have historical cervical stenosis and bone spurs in spine so there are variety of things that could be causing the high pressure. How did it go with Dr F?

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