For the physical side of my recovery from these Tarlov cysts, I have to think of pre-surgery pain and post-surgery pain. I need to consider the things I was fast not being able to do and the progress I have had.
Before finding out what was wrong with my body and then doing the physical therapy, I was going downhill fast. I was being told all sorts of things. As I have posted before, I could not sit for long unless it was on the couch and reclining on my hips. Sitting in the car to Christmas shop, or going to the many doctor appointments, would make the nerves in the legs and feet burn, sting and/or go numb. The tailbone would feel like it was bruised or I was sitting on brimstone; maybe trying to get out of the car, my hips and legs would not function. My ability to just go to the grocery store was almost lost. That store is only two miles from my home. The last long trip I had taken before the surgery, took me three extra hours and lots of drugs after arriving. Then, when I returned home, I was down for days.
The physical recovery from the Tarlov Cyst surgery in the last 18 months has been slow. I am in no way back to the life I had before all this became unbearable. I will never know those days again. Did you read that I will never have the life I had before? I am welcoming my new normal. Heck, I am even welcoming just not having each day filled with pain. I am even receptive to learning my new limits.
I have a few days a week now that is relatively pain-free days, which I now call “discomfort” not “pain”. [ Numbness, Pain, Confused Nerves? ] Maybe I have just learned to ignore what my body is feeling. Since I have made an effort to not use the “p” word, I look at my body differently. I am supporting my body, not worrying it. After surgery you are told no lifting, bending, etc for at least 6 weeks. Did you read the “at least”? That means it could take more than 6 weeks. For me it was over 12 weeks before I could pull the gallon of milk out of the fridge. Even longer before I touched the vacuum cleaner. I didn’t try to drive more than two miles before the 12 weeks mark. It was one year before I traveled to see my parents. That trip was broken into 2 days on the road. I can now sit for around 20 or more minutes in some chairs, I can sit at restaurants and eat out. I can now drive 40 minutes without having to get out, but sometimes I still plan doctor trips so I have a ‘walk around the car’ stop. If I do an hour straight in the car, getting out is scary, stiff and ungraceful.
I have learned what I can do and cannot do. I am understanding my limits, and how much I can push myself. If I listen to my body; I know from the moment I wake in the morning, what I will get by with on that particular day. If I am stubborn and try to do more, I pay for it. If it just takes a half day to recover from my stubbornness, then I learned that I am close to being able to do that one thing more or longer. By pushing and then recovering (resting) I am able to judge what I can do or not do.
So what can I do? Almost anything I have tried. With limitations! Now, remember I was never an athlete or very active. I can only vacuum one half a floor level; once in a 3 to 4 day period. Sometimes it might be just a few rooms on that level, but I am happy with what I can accomplish that day. I can stand at the sink to hand wash those dishes that I will smack you if you put them in the dishwasher. I can go up and down our steps a few times a day. It has been a few weeks since my legs did not want to cooperate going up or down the steps. [in other words – ‘fall’] Grocery shopping is still uncomfortable, but I can do it by myself. I take my walker in the car, but rarely use it. I can bend over to pick things off the floor, sometimes, lol. Reaching over my head still is uncomfortable; I am a shorty, so it is an issue of patience for hunting down the step stool. I can clean a shower, as long as I do not stretch across the tub; I have to strip down and clean it, while squatting down. I do all our laundry, but no more laundry days, they are laundry weeks now. The laundry room is on the level with the home office and guest suite, so that means stairs. I try not to carry clothes up them and I toss them down the steps and kick the ones that don’t make it all the way down.
What discomfort do I experience each day? I still have the feeling that a rock or golf ball is crammed against my tailbone. That has not eased, but the other discomforts are not always present and I can deal with them. It is not pain; it just feels like a foreign object is in my rear. I don’t have the severity of the issues going down my legs. If I am careful and stop what I am doing, the burning of the back of the thigh will ease; the nerve going down the calf and curving to my feet will ease with just pressing on it, or using an essential oils mixture. Thank you niece! I rarely have feet pain or numbness when driving. Now that the pre-surgery pain has diminished, I always feel sore or tired in the waist area of the spine. Ummm, that could be that lovely disc that has its own set of issues, oh well.
I still experience unusual numbness or what I call “numbness”. After sitting too long or too often, (proper sitting, that is) I become numb from my hips to my knees. Now what is this numbness? This is the best way I can describe it: if you think, with purpose, about your arm, then think about your shoulder and hands, without touching them, you can also feel your elbow. Well, with this method, if I try to feel my buttocks or the upper parts of the legs, I can’t. If I touch them, then I can feel them. It is very hard to describe, it is like my nervous system wants to ignore that area. But I still can feel the sacrum and coccyx, knees, and middle of my back. When this happens, knowing if I am tinkling on myself becomes a crap shoot. Or, to know if I am standing upright, I have to look down. Yes, some people poke me and ask if I felt that. My answer is ‘yes’. How rude! But I know it is just the curiosity and the vague way I explain the lack of sensation to them. Does this numbness bother me? Why should I let it? Not really, unless it continues for 30 minutes or more and/or if it starts tingling or stinging. When it gets to that stage a good couch sitting will help ease it.
Improvements that I have noticed with my health are: I have not had a migraine since the surgery! Now, I just get tension headaches from trying to protect my back. My eye sight has improved in one eye! I don’t know about the other as I have a cataract forming. Then the bladder issues have changed. I still wear protection, but not always. The genital area has eased, but I still get those bee stings. They have lessened in frequency and will shock you when they decide to show themselves.
So, to the question of “have you recovered?” Ummm? No! At this stage in my life I am a realist. I understand that I will never see my old life again. Remember, it is not a paper cut on the finger that you recover from because it has healed. A disease is so much different. A 100% recovery is not possible. You have to recover by accepting that your life has changed and you recover by continually learning the “new normal” for you.
I know that a lot of patients get mad at their doctor, thinking that she/he did something wrong when they do not go back to 100%. Every doctor gives you statistics and then tells you that your case will be different, but not all patients hear them. Doctors cannot promise anything, so if you think you have not recovered to your expectations, maybe you were not being truthful to yourself; maybe you didn’t follow the post-op instructions; maybe it was just not meant to be. Anger and worry are negative, stay positive and accepting. It sure makes life easier for yourself and your family. Learn what you can do with ease, what irritates your body, and find the good in your body. Celebrate the good, so the body and mind can stay positive.
Do I wish my “recovery” was the 100% type of “recovery”? You bet! Would it not have been great for someone to slap me on the forehead and yell “be healed” and it all disappear? Then, again, I would not have learned how strong I can be and who in my family loves me unconditionally. I would not have had the blessing of knowing that God has a plan for this inconvenience in my life. Do I know if the blessing is for me or for some other person? No, because life is meant to be a mystery. That is my blessing.
It is funny how we look at things differently when we allow ourselves to re-think a word such as “recovery”. If you are reading just this page, then you need to read: Recovery.