Is anyone going to try the Stellate Ganglion Block procedure?

[Rrrr]

Hi @mitoMAN -- it really is early days. but I will report more soon, i hope. no major improvements yet, or at least not like what you saw with the above Long Covid patient's report.

The first block (right side) felt like it was turning "off" my always "on" body. but turning it off in a good way. I felt very calm. The second block (left side) was not calming. It was not bad. but it was not calming. it felt like it either made me hyper or energized (the two feel similar, but hyper can sometimes lead to a crash). or maybe it was just not calming. it is hard to tell.

there will be more to report later, i'm sure.

 

[Hoosierfans]

Hey all, so here’s my update and what I’ve learned so far. I’ve had 3 SGBs done, all under fluroscopy X-ray. And here’s what my doc has done protocol wise (more on why that’s important later):

SGB #1: Right side, .25 percent bupivicaine at C6 (great for my anxiety and dizziness for about 10 days, so so for burning pain but noticeable in arms and neck, legs not so much)

SGB #2: Four weeks later. Left side, .25 percent bupivicaine at C6 (very little improvement in anxiety and dizziness, but there. Fatigue improved a bit. No effect on pain).

SGB #3. Four weeks after #2. Right side, .25 percent bupivicaine at C4 (higher) (significant side effects days of for about 6 hours — swallowing, inability to talk; less effects than #1, more than #2, to anxiety, dizziness and pain in arms and neck. Leg burning not effected).

SGB #4 planned for this week, 1 week after SGB #3 and will repeat R side at C4.

What we’ve all collectively learned so far….

• SGB results are kind of all over the place….part of that is that what people are doing in terms of side (right or left), level at the neck (C4 or C6 or BOTH in one procedure) medication and dosage used, and time between blocks also seems to be all over the place.
• Example: some docs are doing 1-2 x per week of 10 ml of .5 percent ropivicaine; mine have been 5 ml of .25 percent bupivicaine and been 4 weeks apart. I even saw one patient do 4 blocks within 48 hours.
• Each patient is different (duh!) so while some patients might get away with 1-2 blocks and see significant improvements that last a few months, the longer and more severely sick a patient is seems to necessitate (a) more blocks; (b) more closely spaced together; and (c) repeat the blocks until the improvements “stick” for a period of time (months or longer) at which time the blocks can be spaced apart and done based on return of symptoms.

What this seems to mean practically for anyone wanting to try this treatment:

1. Find an experienced practitioner, preferably one that uses ultrasound vs X-ray (you don’t want repeated X-ray to your thyroid area)

2. You may need to “invest” in trialing 3-6 blocks of different types (side, medicarion used, volume, placement, time between blocks) to find a “protocol” that works for you. And then once you hit on it, it will be rinse and repeat based on symptom return.

3. Cost can widely vary between $500-$600 per shot (private pain practices) all the way up to $1250 per shot (Stella Centers).

4. SGBs are not covered by insurance UNLESS you have a pain condition. If you have pain, ask your doc if they are willing to code it for pain (mine are covered). Otherwise, it’s an out of pocket investment.

Happy to answer any questions….this is all still VERY experimental and so far I’ve not seen the miraculous, sudden recoveries reported on in patients that I’ve been in contact with. What I HAVE seen are folks who have done repeated blocks over a longer period of time, and spaced closer together, get a decent level of recovery.

 

[Jyoti]

Thanks so much for sharing this update, @Hoosierfans. No wait....let me thank you FIRST for being a pioneer (almost said guinea pig, but let's keep this positive and hopeful!).

It is invaluable and so much appreciated. I am really glad that you have seen some improvements, even temporary ones, and feel motivated to keep pursuing this to find out if it can make a long-term difference for you. My fingers are crossed!

 

[Rrrr]

Thank you, @Hoosierfans for this excellent update. So here is mine: I have had 4 shots over 3 weeks, so far, and though there were ups and downs, mostly I'd say that it a thumbs up. These 4 shots have given me increased energy, increased stamina and increased activity tolerance. It is still early days for me, and in the past some treatments that have helped me have suddenly stopped helping me. So who knows if SGB will continue to be helpful or not. But for now, I am hopeful. Each SGB cost me $500 at Portland Pain Solution, in Portland, Maine, with Dr. Littlejohn. I did two on the right side, two on the left side, days apart. I had to travel 6 hours total to get each shot, so I will now start doing SGB with an MD who is closer to me, in Massachusetts. But I do think that Dr. Littlejohn in Portland Maine is good. So I do recommend him.

 

[Rrrr]

Medicare:
Some Stella centers (that do SGB's regularly) and MDs who perform SGBs may not take Medicare. But some will. I have heard that Medicare covers SGB for Raynauds, CRPS, hot flashes, and hyperhidrosis. And maybe some neuropathies, I think. So hopefully Stella centers can be flexible in their coding. For example, my hospital-based SGB MD says my numb hands that get cold and white can be considered Raynauds. And my PCP says my excessive armpit sweating (from dysautonomia?) can be considered hyperhidrosis. So going forward I will try to get Medicare to cover some of my treatments in the Boston area (so I do not have to go to Portland, Maine). NOTE: my MD says that Medicare in the Northeast region (each region is different), pays for 1 SGB every 4 months for Raynauds. Other regions may be different.

 

[Rrrr]

Here is a mish mash of info I have collected recently about SGB. Sorry it is such a mess. But there may be helpful info here.

Articles, studies, posts, groups, videos (I may have posted some twice by mistake):

Published paper on SGB and Long Covid:
Stellate ganglion block reduces symptoms of Long COVID: A case series: https://www.sciencedirect.com/science/article/pii/S0165572821003118

Facebook group on Stellate Ganglion Block for PTSD
https://www.facebook.com/groups/307074906913268

Video on what an SGB treatment is like:

"60 Minutes” (CBS TV show) on SGB for PTSD:

Cort Johnson article on SGB
https://www.healthrising.org/blog/2021/12/28/stellate-ganglion-long-covid-fibromyalgia/

Long Covid SGB recovery story

https://www.reddit.com/r/covidlonghaulers/comments/ushr47

Stellate ganglion block modifies the distribution of lymphocyte subsets and natural-killer cell activity https://pubmed.ncbi.nlm.nih.gov/10638906/

Regulation of acute reflectory hyperinflammation in viral and other diseases by means of stellate ganglion block. A conceptual view with a focus on Covid-19 https://www.sciencedirect.com/science/article/pii/S1566070221001338

Description of the SGB procedure is found here:
https://www.brighamandwomens.org/an...in-management-center/stellate-ganglion-blocks

Short and technical YouTube video on SGB, and it lays out the risks.

"The Effect of Stellate Ganglion Block in Severe Brain Injury"
https://clinicaltrials.gov/ct2/show/NCT04208477

Not yet done study: Effect of Stellate Ganglion Block on Meniere's Disease
https://clinicaltrials.gov/ct2/show/NCT01574313

Brit. J. Anaesth. (1969), 41, 699
STELLATE GANGLION BLOCK IN THE TREATMENT OF MENIERE'S
DISEASE AND IN THE SYMPTOMATIC RELIEF OF TINNITUS
https://www.bjanaesthesia.org/article/S0007-0912(17)51081-8/pdf

Efficacy and safety of stellate ganglion block in chronic ulcerative colitis
https://pubmed.ncbi.nlm.nih.gov/28210090/

Short video on the procedure

 

[Rrrr]

THIS IS HOW I HAVE APPROACHED STELLATE GANGLION BLOCK MDs REGARDING DOING SGB ON AN ME/CFS PATIENT.

SBG is done mostly via pain management clinics, interventional pain MDs and by anesthesiologists. A private MD can set their own rate, but if done at a hospital, it may be much more expensive and out of the MD's control as to the cost.

To see if I can secure the MD to work with me, this is what I do: I tell the admin assistant via phone that I'm asking to do an SGB for an out-of-the-box condition, a post-viral illness, and instead of wasting the doctor's time and my time, can I email with the MD and see if s/he is open to doing it. Each time, the admin assistant said yes. In the email, I write all this found below:

Please see this 2021 paper on the successful use of SGB for Long Covid, a post-viral illness: "Stellate ganglion block reduces symptoms of Long COVID: A case series” https://www.sciencedirect.com/science/article/pii/S0165572821003118

My history: I have a post-viral illness too. I got infectious mono decades ago. And I'm still sick, decades later.

Not a psychological illness:
ME/CFS is not depression or anxiety. I don't have depression.

It can feel like anxiety but it likely the ANS disorder, or dysautonomia, and Orthostatic Intolerance, which I have. And I do feel occasional anxiety, but not sure if it is the OI or real anxiety.

Top symptoms for many living with ME/CFS (and Long Covid)

• Unrelenting exhaustion
• Cognitive dysfunction (brain fog)
• PEM or post-exertional malaise (a worsening of all symptoms after minor activity)
• Nonrestorative sleep
• ANS disorders, and dysautonomia
• We likely have neuroinflammation and low cerebral blood flow
• After 6 months with these above symptoms, one is eligible for a diagnosis of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Many with Long Covid are now getting diagnosed with ME/CFS.

Symptoms of some with ME/CFS that could be similar to PTSD (which SBG now treats):

• Racing heart, excessive sweating (armpits), fight or flight

Questions I asked in the initial email:

• Are you open to doing SGB on ME/CFS and post-infectious chronic illness?
• How much experience do you have with SGB?
• What is your protocol (the medication you use, the amount of med, the guidance you use (ultrasound?); where do you do the injection; what gauge needle? FYI, in the protocol in the published paper, Dr. Luke Liu uses bupivacaine, 10 mL, ultrasound guidance, and they inject at C6. Most MDs use 25 gauge needle.
• I hear people with ME/CFS may need a series of SGB to see results. Are you open to doing a series of SGB, should we find that 1 or 2 does not bring the desired results we are looking for (improvement of symptoms)?
• Cost? Can we go through Medicare if I have CRPS, hot flashes, hyperhidrosis, Raynauds

QUESTIONS I ASKED AT THE FIRST APPT

• Are you an anesthesiologist? Or family practice MD?
• What do you treat with SGB?
• How long does SGB good effects last?
• Do you usually do one SGB or a set over two days?
• How many sets of injections does a person usually get?
• What percentage of people see results?
• What percentage of people have negative side effects, and what are they, and how long do they last?
• Why did one PTSD patient report that her fight or flight got much worse? Was it due to bad placement of the needle or was it due to the specific patient?
• Can you do R and L side, one day apart? (Many will only do it a wk apart, which is not terrible, in my personal opinion, as that is what I have done and it still seems to help me)
• Risk benefit ratio: what are the serious side effects?
• Do you use ultrasound guidance?
• What do you inject, what strength and how much?
• Where do you inject and how much do you inject?
• What gauge needle do you use?
• Do subq skin test the medication first (wait 30 min to see results)?
• Which ganglia are you trying to affect (just stellate? Middle cervical, etc.)?
• Does this impact the vagus nerve?
• Could the blocks reduce vagal tone?
• How to avoid this getting into the brain?
• Do you have patient swallow to locate esophagus (to avoid a puncture of it)?
• Post-treatment: Do you monitor patients with standard cardio-pulmonary monitors for 30-60 min after treatment to ensure there are no immediate post-treatment complications?
• Migraine? Can I get a prophylactic prescription for a migraine?
• ME/CFS may require a series of blocks, like Meiners's took 20+. Are you open to that?
• Medicare: Will they cover this with the right diagnosis (e.g. excessive sweating, numbness of hands and arms, hot flashes, all of which I have). Can your office submit my SGB to Medicare?
• Cost out of pocket (if insurance does not cover it)?

 

[Jyoti]

@RRR--what a wonderful resource you are developing for us! Thank you for sharing it all.

And.... I am so excited to hear that you are feeling more energy and stamina. This is grand news.

 

[Rrrr]

Thank you, @Jyoti. Time will tell. These are still early days for me. And I have sometimes gotten a good response from a new treatment only to have it all disappear after a few months. So please take my enthusiasm with caution.

Is anyone here on Phoenix Rising considering Stellate Ganglion Blocks? If so, and you are in on the East Coast (New England or Washington DC area), there are some MDs who know about ME/CFS and might see you.

 

[kewia]

@Rrrr,

How are you doing now?
Did the effects hold on?

 

[Rrrr]

@Rrrr,

How are you doing now?
Did the effects hold on?

So very sorry for the long delay. I will update in my next post. But in short, I'm no longer hopeful about SGB for me.

 

[Rrrr]

Hello good people. I'm so thrilled to to hear via various channels that some Long Covid and ME/CFS folks are getting a good response from their SGB treatments.

I'm here to give my update after 10 SGB for ME/CFS. Unfortunately, it is not so wonderful.

BACKGROUND: I have had ME/CFS for decades. Unrelenting exhaustion, brain fog, PEM, and more, including numb hands.

UPDATE ON SGB: I have now had 10 SGB. I had 7 with Dr. Littlejohn in Maine, and 3 with Dr. Qureshi in Massachusetts. Both are good MDs. But the SGB with Dr. Littlejohn seemed more effective, so I mostly did the SGBs with him.

The first 4 shots helped me. I got more energy, more stamina. I was able to go on short walks. How exciting. So I was hopeful.

Then I got a shingles vaccine and was sick with a post vax crash for 1 month. The two SGB I did during that month did not help me at all -- or so it seemed. But for all I know, it made the crash less bad...?

Anyway, since then, after that crash seemed to go away, I got additional left sided SGBs that seemed to help with energy (yay!) -- but did not prevent some bad PEM and crashes I experienced when I did too much (boo!).

Since then I have had additional right and left sided shots, and even increased the concentration of the bupivacain to 0.50% solution (inching up, over time, from 0.25%), and I did not get much of a good response from those shots, except one good day.

In fact, after the last two shots things seemed to go downhill in terms of my ME/CFS: I got worse.



I had my last SGB 1.5 weeks ago, and I have been struggling since then. 

Just very wiped out. Also worse cognitive issues, and worse vestibular issues (vertigo and dizzy). Also, I almost passed out a few times, which is rare for me. The worse time was just a day after the last SGB.

I wonder if this negative effect to the last two shots was due to upping the bupivacaine concentration to 0.50% (8 ml) for my last two shots (R and L shots), as I did poorly after both of the last two shots. (The effects to all prior shots was either good or no response at all.)

Of course the 5 day IACFSME conference I attended virtually (and which was excellent) also wiped me out significantly.

Anyway, I assume I just have to wait out this bad response to the last shot, and just hope I get stronger again.

But also, something else weird: About 5 days after my last SGB, I had a new symptom: Excessive thirst. I had this once before from a medication (doxycycline). Eventually it passed, both then and now.

The excessive thirst could also be from the extreme dry climate we are experiencing in the Northeast of the US right now...?

Not sure about next steps. But for now I'll hold off on more SGBs.

I did have improved sleep from the SGBs, which was great. But it did not make my ME/CFS any better. And my numb hands did not get less numb, tho SGB is supposed to help Raynauds (of the hands) and also neuropathy, and make your hands warmer in general. none of that happened with me even after 10 SGB.

I did feel happier after most of the shots, for a few days -- I was making more jokes, etc. But I was not depressed before the shots, so though being happier was nice, it was not so necessary.

That's my not-so-great update after 10 SGB.

UPDATE from Oct 14, 2022: I made it back to my baseline about 2 weeks after getting worse from my 10th SGB. I think I got worse because I we did too strong a solution (we used Bupivacaine 0.50% solution for the last two shots, and before that we had used less. I think my best SGB results were when we used 0.375% solution.) Anyway, I decided to put SGB on hold for now. I know a few ME folks who have tried SGB and not gotten better. So that is influencing my decision. (Also, I ran out of funds for SGB. Though I think I can do a few SGB with medicare paying for them, with the right diagnosis.) Long Covid folks, on the other hand, seem to get a better response to SGB.

There is a facebook group where folks are reporting in on SGB for ME and LC. It is called "ME and Stellate ganglion block"

 

[iliketoread]

Stella quoted price of $2300 for one side and $4000 for both sides at once. Have people been able to get this done more cheaply? I'm going to try calling around pain mangement places but I don't know if they would provide SGB without a series of appointments and stuff that could get pricey anyway.

 

[kewia]

I think in some countries it is covered by insurance.

 

[iliketoread]

I am scheduled for a right sided SGB through Stella in October. I went with the option for $3399 which with cover 2 procedures. They will start on the right with 2 shots at C4 and C6. After that we can go to the left or re do the right. I will let you know how it goes.
They highly stress the SGB should be combined with therapy/mind body practices. They also told me the SGB isn't proven for fibromyalgia, and they said it will not help that. So that made me a little worried, but we shall see, fibromyalgia itself is kind of a vague term.

 

[Jyoti]

Good luck, @iliketoread. I hope you have 'stellar' results! Let us know how it goes.

I would add that I spoke to an anesthesiologist/pain doctor at one point who who was very willing to do SGB for ME/CFS but perhaps a bit like Stella, basically insisted that I be in therapy in order to be eligible. Not that I object to therapy per se, but I got the sense that underneath the requirement lurked the old hobgoblin of hysteria. I think he might have agreed so readily to do the procedure because of stressful events which preceded the beginning of my illness, thus....PTSD.

I decided to pass on that.

 

[Rufous McKinney]

I think he might have agreed so readily to do the procedure because of stressful events which preceded the beginning of my illness, thus....PTSD.

I decided to pass on that.

I have these strong, rare earth Biomagnets........

And I think I will try to use them like a vagal stimulator/ apply to the stellate ganglia area...(small magnets, I lash them onto my neck using a scarf, probably.

I do not have a way to track my HRV.

Should I get one? Then I would have data? If I have no data, what do I use to decide: the magnets help?

I can't make things work, often these days, so some computer thing tracking my HVR sounds complicated..

 

[BrightCandle]

I do not have a way to track my HRV.

Welltory is a mobile phone app, uses the camera and the LED light to read the pulse through the finger and it gives you HRV data. If you aren't really looking for "body battery" but the raw numbers then try HRV Camera.

 

[Jyoti]

I do not have a way to track my HRV.

Certainly an uptick in HRV would be a good, somewhat objective assessment of your treatment of the SG with magnets. Most people who are doing the SGBs, though, just report on how their energy is, how they feel, sleep, etc. I don't think you NEED to measure HRV to see if your technique produces results. Though Welltory is a relatively simple way to track (roughly) HRV.

 

[Rrrr]

Stella quoted price of $2300 for one side and $4000 for both sides at once. Have people been able to get this done more cheaply? I'm going to try calling around pain mangement places but I don't know if they would provide SGB without a series of appointments and stuff that could get pricey anyway.

That is way over priced, in my opinion. I was paying $500 per SGB with Dr. Littlejohn in Portland, Maine.