Updated: Jan 23
Dear members, For this month's blog I'm going to talk about what to do when you're newly diagnosed with Arachnoiditis. Whether it's an old case or new case, we have some great information for you that I believe will be very helpful in guiding you in the steps you need to take to get Arachnoiditis under control. The first thing I want to share is the Three-Component Medical Treatment by Dr. Tennant. As the name implies, there are three components to this protocol. The first component is controlling the neuro-inflammation (inflammation inside the spinal canal) which is important to control the progression. The second component is tissue regeneration, and the last part of the protocol is controlling the pain.
Here's the Three-Component Medical Treatment bulletin.
As you can see, there are several choices for both prescription and supplements for each category. Many of us have a hard time getting prescribed the necessary medications because our doctors are hesitant to prescribe corticosteroids and NSAIDS as a first line of defense or because of the side effects. Plus there are those who are unable to take them for medical reasons. If this is you, I believe it's important that you start on the supplements, along with other measures such as diet and exercise. Dr. Tennant, who developed the protocol, recommends that you try at least one or more medications from each category. Keep in mind finding the right protocol that works for you takes time and patience. What works for one person, doesn't always mean it will work for you. As far as supplements are concerned, you generally need to give them at least a month (or more) to work before making a decision on whether or not it's working for you. It personally took me two years to get my protocol down and I'm constantly reviewing it and adjusting it as my situation evolves. People often ask if you need to take the expensive brand names because they're concerned about the cost and they're like me on a fixed income. To those of you who are in the same boat as me, I don't believe that you should necessarily spend extra money on brand names. I feel it's better to just get started and buy what you can afford. I've found that physicians are more open to prescribing us some of the medications that Dr. Tennant recommends, such as Ketorolac or corticosteroids, when they're aware that we're trying to help ourselves.
In addition to supplements and prescriptions, I feel it's important to eat an anti-inflammatory diet along with physical measures. These exercises are meant to encourage proper flow of CSF (cerebral spinal fluid) and electricity in your spine. Here's a great resource from Dr. Tennant for physical measures for prevention and treatment. I personally have found aquatherapy is a great option for us because of the buoyancy of the water. I use flotation devices such as belts and bars to help aid in exercising and to compensate for the weakened muscles and nerve damage in my legs. You don't need to swim or get carried away, you just need to do gentle movements starting out slowly and working your way up exercises that are for strengthening later on.
Emergency Starting Protocol If you've been newly diagnosed it's essential that you get treatment within the first four months of the inciting procedure. This gives you the best hope to reverse the damage from Arachnoiditis. You can find the emergency protocol, along with the Three-Component Protocol and other useful information at our "Starting point" webpage.
Good luck and have a low pain day,