Non surgical options
Please remember that you need to work with your medical providers to create the Protocols that work for you. Always check with your doctor and/or your pharmacist to make sure there are no harmful side effects or interactions with other meds that you’re on.
I found that developing a strong relationship with my pharmacists was crucial in my own care. Because I was being prescribed opioids especially, it was just as important to me that my pharmacists became educated about my diseases as anyone, maybe even more so. They actually became friends and allies and were able to assure me that I wasn’t abusing my medications, etc. They were also invested in my recovery and would make sure that each medication or supplement that I tried was safe for me.
I urge every patient to invest in those relationships.
In my experience and observations, the objective for non surgical patients is to control our pain and symptoms by figuring out ways to control our neural inflammation, and the sources of our “flares”. Since we are all different, what helps one person may not help another. This will not remove our cysts, of course, but it can really help to relieve pain and symptoms.
There are different protocols that we can use for daily maintenance and then tools for “flares” of our condition.
The best Protocol that I have found, and witnessed in the groups online, is one that was written by Dr Forest Tennant for his AA (Adhesive Arachnoiditis) patients, but it works great for patients with almost any neurological diseases. His books can be found on Amazon but the simple explanation of his protocol is a 3 pronged approach to treatment.
Each prong has several different options provided, for patients to try. Some are prescription, some over the counter supplemental, and some exercises and therapies. You should look at his suggestions and try each one, one at a time, until you find what works for you.
The first prong is pain management, the second is to control your inflammation and the third is support for neural repair and regeneration.
Here is my personal Protocol. Each of us are unique so explore your options.
It’s important to find a good Pain Management doctor who is willing to work with you to find the right medications for you, if you are in need of prescriptions.
You can do his protocol with only supplements, if prescriptions aren’t available to you. Some people with this disease live in places like the Middle East and do not have access to the drugs that Westerners have, but have found some relief with supplements.
When I was at the height of my pain, I tried various different opioid and non opioid prescriptions until I found the ones that worked the best for me. Unfortunately, at that time, I didn’t fully understand the importance of a protocol that reduced inflammation. Once I started Dr Tennant’s Protocol I was able to reduce my medications dramatically, even coming completely off of the full opioids that I’d been on for 7-8 years.
Currently I am taking -
Gabapentin 300mg, 2 times a day (I was on 600mg, 3 times a day)
Suboxone 1/2-3/4 film, 2 times a day (I was on 15mg MorphineER, 3 times a day, and 15mg Oxycodone, 4 times a day)
I receive a Trigger Point Injection with steroids every 2-4 months in my mid left back muscle (under my “wing bone”) because one of my thoracic cysts causes a contraction there. The TPI has done a great job at releasing that particular muscle area, and relieving my deep pains.
This particular thoracic condition has a name. It took me years to identify it but it’s called notalgia paresthetica. It usually starts with an intense itching that can’t be scratched and it can progress to numbness of the skin and a deep, dagger like pain that can radiate across the back and around the rib cage. It ONLY occurs in that specific area of the back. Usually on just one side but it can happen on both sides too.
I strongly advise against any injections around the spinal cord, such as ESIs. They can work wonders for “regular people“ but risks rise for patients with TCs, and have even been known to be the cause of TCs developing in patients. The Dura layer of our spinal cords can be weakened, which can often be why the TCs develop in the first place.
This is why I often call them Spinal Cord Aneurysms instead of Cysts, because they are not like other cysts that can be removed. They are the Cerebrospinal Fluid (CSF) that has filled up the nerve roots off of the spinal cord, so they cannot be removed, only drained and wrapped.
I use various CBD creams on certain areas when they ache, such as my low back.
I also take supplements that support my nervous system by reducing inflammation and help with nerve repair and regeneration, such as;
A good multivitamin
Magnesium - Please read the note at the bottom of the page. Magnesium can have side effects that can help some people but can also cause issues at higher doses.
Potassium
Calcium
Folic Acid with B vitamins (it’s important to add B vitamins because Folic Acid can deplete them)
PEA- Mirica Brand (I have written a whole post about PEA. Please read it.)
Taurine- (I have written a post about it) Relieves muscle cramps and contractions, along with neurological support. It also provides many other health benefits including cardiac support.
Collagen peptides (particularly for those with a Connective Tissue Disorder. There are differing opinions about whether this helps but I see no downside in adding them. Plus, my skin, hair and nails look great. In my mind, if it helps the tissues that I CAN see, it must be helping the tissues that I can’t see.)
I drink a nutrition shake each day and add a lot of my supplements, like the collagen. It’s good for anyone, no matter your weight. I know many people who are overweight but still lack proper nutrition. I use a vegan protein shake sold by Shakeology but you can get a good shake base at Walmart or any such retailer. The issue with Shakeology is that you have to buy from a “Coach” with the company. I’m friends with one, so it’s my way of supporting her business.
Other suggestions
Try to eat an anti inflammatory diet as much as possible. Don’t obsess though. That can cause tremendous anxiety for many, which just adds to our symptoms! I found that it was less important to stop everything than it was to make sure I added what my body needed. Staying away from processed food and eating in moderation is always healthier though, so try to be aware of what you’re feeding your cells!
Try to do as much movement as possible. If you can walk, walk, but even if you find yourself with limited mobility, there are things that you can do to get your CSF moving in your body. A swing or rocking chair can really help.
Stretching is wonderful too. Nothing that hurts but finding the stretches that help release your muscles can feel glorious! I try to bend and stretch a few times a day. Not just the back and legs but my arms, back and chest too. I like to place my arms against a door jam at various heights and lean into it. This isn’t something that you need Physical Therapy for.
I tried PT on numerous occasions and honestly ended up having to stop every single session because the therapists didn’t understand my disease and would push certain areas too hard, like my “core”. You may have better luck but don’t be discouraged if it doesn’t work out. There are some great videos on stretching that you can look up.
I’ve shared a link at the bottom of the page to the chiropractor video that helped me learn how to stretch properly.
Things for your tool box
Sometimes you find yourself in a flare and things are worse for a while. There are various options for relief, depending on the reason for your flare.
The least invasive options are things like Ice, Heat packs, and Epsom Salt baths.
Some people swear by Accupuncture, massage and/or dry needling.
TENS Units help some.
Steroid Pack -
I keep a dose pack of steroids, like a Medrol Pack, on hand to use in extreme situations. These shouldn’t be used very often. I try not to use them more than a couple times a year at the most. Since starting Dr Tennant’s Protocol 3 1/2 years ago, I’ve only needed to use the steroid pack one time. That was after Covid and my body was very inflamed.
Diamox -
I keep a prescription of Diamox on hand. Diamox is typically used to treat glaucoma or altitude sickness, but can also be used to lower CSF pressure. For some patients that have high CFS pressure all the time, they may need to be on a regular low dose, but this needs to be closely monitored.
It is a very powerful drug and doctors are very careful about prescribing it. My own doctor was very cautious but because we had built a history of trust, he wrote me a prescription for 10 pills to start. That one prescription lasted me about 6 months, because I only used it as an emergency rescue medicine.
For patients like myself, their CSF may only rise during a flare. I’m not sure about cause and effect. What came first? Did the high CSF cause the flare or did the flare cause the high CSF? Whatever the case, the treatment is the same in this situation.
In my particular case, I will take the lowest dose pill and cut it in half, to take once a day for 2-3 days. IF that flare includes my CSF being high, that low dose will generally do the trick and settle my flare within days. If my CSF isn’t involved, my symptoms may actually start to feel worse because the Diamox might cause LOW CSF then. I stop it at that point and, for me, the CSF recovers within a day.
Again, you need to be very careful with this one and listen closely to your body, while working with your doctors. Since starting my protocol I haven’t needed it in over a year though.
Klonopin-
Cervical and Thoracic cysts can cause symptoms related to breathing difficulties and chest pains that can feel like a heart attack.
When the breathing issue acts up at night, and it causes sleep issues, I’ve found that Klonopin really helps calm that nerve down so I can sleep.
If you’re on opioids doctors won’t want to combine them, because combined it can cause sleep apnea, and even death. It’s also addictive so you’ll want to be very careful with how much you take.
If you become dependent on it, it can be a very difficult withdrawal, if you don’t cut back safely.
I learned that the hard way with a doctor who had been “too generous“ with her dosing and then got scared when she read about possible complications, so she stopped it cold turkey. That could have actually killed me.
I ended up in the ER 4 days later, in withdrawal, and the doctors were shocked at what she had done and immediately put me back on it, at my old dose, which was 2mg. I immediately switched doctors and slowly weaned myself down to .25mg and now I only use that when it’s necessary for sleep.
I wasn’t mentally addicted but my body was physically dependent. I didn’t understand then, what I know now, about how these drugs work.
I’ve never had to battle true addiction, which is the mental obsession for something, but because I had to take narcotics to help me live through that period of my life, I had to understand the difference between addiction and dependence.
As my pain and symptoms were better controlled, it wasn’t hard for me to come off of the meds. It just has to be done properly.
At the time, I understand her panic because I had slowly had to increase my opioids after surgery and I was at a place where it could have been dangerous.
The problem wasn’t in cutting down the med, it was in how she went about it. It had to be done over about a 6 month period. Doing it that way, I had no withdrawal symptoms. She literally could have killed me with the withdrawal.
It’s a good “tool” for our breathing but we have to be very careful with it. I take the lowest dose and only use it in a flare of that particular symptom, at night.
Note about Magnesium -
I have learned one good lesson and piece of advice that might be helpful for patients. For the last 2-3 years my stool has been liquid? Well, my GI doctor (yay! A good doctor) figured out why.
He noticed that part of my protocol was Magnesium Glycinate and told me “Well, that’s your problem. Magnesium causes diarrhea!” That’s why Milk of Magnesia works. At the quantities that I was taking, plus the fact that I had stopped taking opioids 2 1/2 years ago, and I’m missing part of my colon, that’s why my stools became liquid. I quit and within 2 days my stool was normal and it’s been fine for since.
I slowly added back the Magnesium, starting with one every other day. I was taking 2 a day, once in the morning and once at night. If my body is fine with every other day, I’ll increase to once a day. It’s definitely good for our neurological protocol, as long as it’s at the correct dose for our body.
It was a problem for ME, but it could be a solution for the patients that struggle with constipation due to Opioid use.
Stretching video - here’s the link to the stretching video that helped me.
How do we know if we have high CFS at times? whst are the symptoms?