Wow! It has been four years since my Tarlov Cysts surgery!!!!
I guess, since I skipped a three-year follow-up, I should do one this anniversary. As you read this post, and the next, might I suggest you read the pages in the top menu. There are several pages under the drop-down tags of ‟Journey,” ‟Recovery” and ‟About Me.” These will answer any questions you might have about ‘what the heck I am talking about’ as you peruse these two pages on my four-year recovery. Also, I will link other posts from the archives that can keep this from becoming a book.
[ Why am I doing this? and My Journey to get you started.]
To anyone considering the surgery, there are things you need to understand. It is a relatively new surgery method; each doctor does something different, — there are only a few that will even attempt to help you. Other things to remember are: “It is not a cure.” It is a long road to travel and you may not be helped. Diet is important – more than you can guess. Some form of mindfulness and faith is especially important. Drugs or narcotics do not help after a while, if at all. You will have many downs and few ups. Accepting a ‘new normal’ is a must. Do not be discouraged if your doctor tries to insinuate it is “all in your head”. Be prepared to educate yourself and any doctor or dentist (even your eye doctor). [I am required to say: This is not medical advice.]
One thing to help you through this journey (even if you decide on not having surgery) is learning to journal every activity you do for each day, each activity, and the duration of activity. Just like migraines, there will be triggers to your levels of discomfort. Also, in the journal keep a food diary; not just the general food but all the ingredients in that food. Food can trigger pain, not just in your gut but in your whole being. We know there are food triggers for headaches and for gut issues; so just as with those, there are triggers for inflammation. Learn what you, personally, cannot tolerate. The best way to do that is with a food diary. If you have read any of the blog, you know that I have given up gluten. One fourth of a slice of bread can start the swelling along my spine and can cause pain for three days. A half cup of noodles will do the same. [Read some of the post in the Life Style Change category.]
I know I have touched on mindfulness and faith before. So, let me tell you these have seen me through some rough days. They give me the hope to complete some days. I do not know how anyone could survive this living if they did not have a faith. I know my faith allows me to laugh when I want to scream; allows me to cry and then wipe my eyes; it keeps me from taking my pain out on innocent people. [For more reading Daily Personal /Physical Goals and Mindfulness with Tarlov Cysts even Hope or Wish? ]
Another thing that has helped is support groups. They can answer your questions. They give you someone besides yourself to worry about. They give you kind (alike) souls that are going through your trials. Each group is not for everyone. Some are filled with people who seem to have no hope; some that are angry and blame others for their results being negative and get angry when others are positive with their results. There are those that will not let you share your faith. Read the group’s rules carefully before you join. There is nothing like disappointment when you feel let down by those you had hoped to help you.
Another thing that has helped me is the word “acceptance.” You have to accept that your life has changed. You must accept that it may not get better; do not let this determine who you are. You need to accept that other people may never show you empathy, much less understand the juncture of life you are at. You must accept that you need to change the way you look at your self–worth. Things to never accept are: the lack of hope. Never accept that there may not be a better way to treat the cysts. Never accept giving up. Never accept being belittled by family and friends, much less your doctors. [Again, not medical advice.] Also, how you look at the words that you use, and terms used to express what your are going through will determine how you accept what is happening to your body. [Please read the post Numbness, Pain, Confused Nerves?]
Remember that “recovery” is as individual as our hair. Understand that recovery is an idea, and that it is different in meaning to each person. I have written several posts on this topic, they help explain how a doctor thinks of recovery and how confusing it can be when people ask you if you have recovered. “Recovery” is like steps up a mountain. Some of those steps will be tilted, some flat, some set so far apart that you know it will take several attempts to get to the next one. [Suggested reading is: The Question of Recovery, and How Long Should Recovery Take?]
Questions that I asked myself, that may help determine how you approach your decision to have surgery are: What do I see as my dream outcome? What did my realistic research on the recovery tell me? What do I truly hope for by having the surgery? Will I accept that there may be no relief from the surgery? Can I accept that I may end up with more pain than when I went into the surgery? Do I know much about the progression of my issues, if I do not have the surgery? Am I willing to stay positive about my decision? Am I willing to follow all recovery instructions to the tee? Is my family ready to help, for years to come? Why do I feel the need to have surgery? To what level of pain relief will I be happy with? My suggestion is to write all your ‘what if’s’ down and then answer them. Have your family support person answer them as they see/know you; and let them be honest, even if you do not like the answers. [Reading from past posts are: Care-giving and The Perfect Home Recovery Room ]
Remember your family will travel this decision you make, with you. Find out how they feel, even if they say it is your decision. Ask them how they are going to feel if you are worse off than before. Find out their fears. Find out their strengths. Ask them to educate themselves, so they can go to each doctor appointment with you. Ask them to support you by asking questions with and for you. Hide nothing from them but do not allow it to become drama. [Not only is Care-giving a good reading, but Why The Heck Are There Post-op Instructions? is also a post that can help.]
The next page in this series will cover more of the physical part of my personal recovery. Please do not be discouraged for I am pleased with how I am progressing.
Also, I have mentioned before that nothing in my blog is to be medical advice. I must reiterate that. My blog is about the disease and what I have learned and experienced. I have no medical degree.