I recently received correspondence from a fellow Tarlovian who had the surgery one year ago. I asked her if she wouldn’t mind sharing some of her experiences, post-surgery, so that I could get a clearer picture of the outcome of this decision. I want to make the most informed decisions possible and in order to do so I must be informed! I find it is hard to find good information on this topic and I feel the reason for this is because once you have the surgery you move on with your life as best you can and spend less time researching the topic and sharing your experiences online. I already avoid other Tarlov discussion boards simply because they are depressing and offer very little by way of non-invasive solutions. I am so grateful to her for being so honest and open about her experiences. If you are reading this please know that you are helping so many people who are confused about what to do.
Disclaimer: This only reflects one person’s experiences. The outcome varies from person to person. As with anything, your outcome may be different then hers, for better or worse. For the best results, make your decision based on a myriad of information, not just one story.
“you are correct in that many of us who have had good results with surgery do not go on-line as much. and some that have not had good results might be afraid to say much. i know several women who are worse after surgery. very difficult. but both of them had other things going on as well. it seems that those of us who were healthy, in fairly good shape physically and had no other musculoskeletal problems seem to do the best with surgery. of course my sample is fairly small. but i have no regrets. i can walk as much as i want to and just this month tried hiking a bit but only went three miles round trip and not much climbing. it felt good and my body told me when to stop. no backlash either. but i still do not like sitting for very long.....i get uncomfortable and restless. if i am traveling by air and have to sit for long periods it takes a few days of rest to get back to comfortable. the only pain meds i ever take now are aleve and that is maybe once or twice a week it at all. anything involving lifting over 15 lbs doesn't work for me, nor does using anything with a long lever arm like a broom, vacuum or garden hoe. the first two i can live with out but i love gardening and that is a bit difficult.....i do a lot squatting or scooting along on my butt. and my kids help but they are teenagers and will not be here at home forever. i can bend over now without any pain. and pull on pants without having to lean on anything or sit down. little things. but yoga is still too stressful.....the stretching irritates things. i was never a runner but have found myself doing short jogs when in a hurry and am amazed that it doesn't hurt. i do most of my work standing.....i am a stained glass artist and have raised all my work surfaces to allow me to stand as much as possible. i am also back in school and that is actually more difficult....the sitting part. enough chatter. i am amazed that the diet thing is working to settle the inflammation down enough for you to see real changes in the pain level. i do hope it continues for you. keep working on the patience thing......you have absolutely nothing to lose and everything to gain.”
In a lot of ways I feel my method may have the advantage. Most of the milestones it has taken her a year and a surgery to accomplish, I have been able to accomplish in 2 months or less with this lifestyle change. At around the 2 month mark I was able to use a mop/broom/vacuum again, I am able to lift heavier things, and I can sit as long as I want without any issue. The big difference and I do mean big, is that she can walk as much as she likes. Let’s be honest, that is one of the most important tasks that needs to be completed in life and adds to your quality of life. I am optimistic though, that with more time I too will be able to walk as much as I’d like without issue. Only time will tell. I cannot begin to express how invaluable the information she took the time to give is to me. I wish her even more improvement and a life filled with gardening!
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Thanks for your comment! With so little known about this disease it is up to us to become the authority and advocate for better options!