Where does the time go?? It has been a while since I have posted so I had better get caught up. I had my follow up visit with my rehab physio doc in mid March. He was impressed with the progress I have made and was very confident the nerve issues would begin to settle down and eventually go away. It has only been six months since my accident after all. I have found that the Tramadol seems to really help but it wears off fairly quickly - 6 hours or so. Consequently, he suggested we try Tramadol extended release since that is a 24 hour dose. I have been using that for a couple of weeks now and it does seem to provide overall better results. The only problem it is vastly more expensive for some reason. $135 vs $10 for a months supply.
I continue at the fitness center and have been gradually adding more weight to the resistance machine routines. I am certainly getting stronger and more flexible as well. As winter this year was brutal, we decided to take a trip to Florida for a week to see if the hot weather would be of any value. I found that my overall stiffness level was less in the warmer weather. Another goal while I was there to see if I could still hit the golf ball. The first couple of holes were a little suspect and thankfully not a lot of people were around - it was too hot. By the end of the round, I was able consistently hit the ball about 150 yards off the tee box. That is about 60% of what I was capable of previously, so I was very pleased. My flexibility will hopefully continue to improve and I think golf will help me get there. I played four 18 hole rounds in the 7 days I was there but that was about all I could handle.....pretty exhausting.
The months of February and March were very busy as well tuning pianos. I actually did more in those two months then the same months in 2013. I am confident that keeping busy, as I have been, is another reason my progress continues so well. Since piano tuning falls off in the summer months and I want to stay busy, I checked with our local golf course and it turns out they need help with mowing of the course. So....I begin another program in the next couple of weeks. I checked with my doc about it and he said as long as there is a good suspension on the mower, he has no issue with it. Turns out, they have two riding mowers and they will put me on the slower one since that has the best suspension system. An added bonus, I get FREE golf. All of this should help with my stamina, flexibility, strength and hopefully my golf game.
I will continue to post as things progress. I hope that all is well with everyone.....have a safe and productive summer!
Thanks for the update donl1150, its great to hear that you are making progress still. You certainly have the right approach towards your own recovery. Its good you are always looking at ways to promote recovery in a positive and active manner.
Enjoy your golf this summer and i look forward to your next update, keep up the work!
Hey donl1150, I'm really happy to hear that recovery is going well for you! You've been injured for less than a year so you still have lots of room for improvement/recovery!
Lucky you got a vacation to Florida, I would have loved that seeing how bad this winter was. Thankfully spring is finally here and summer is right around the corner.
It's great to hear that work has been keeping you busy and that you've been able to keep up with it. It probably does help with recovery so keep it up but remember not to work too hard!
Wow, time really does fly as you get older. I remember my parents saying that all the time when I was growing up but it didn't sink in back then.....it does now. I better give an update before I forget what happened!
The job cutting grass at the golf course with the good suspension rider....not so much. It turns out after about 3 weeks I became so sore I simply couldn't do it anymore. Obviously the vibration and bouncing 4-5 hours a day, even if it was relatively minor, was just too much for my body to take. I don't think any damage was done but I had to stop. I have been able however to continue to golf and that has been getting better throughout the summer. I have been getting out about once a week and that is just about right.
The burning nerve sensations do continue. After a suggestion by my doc, I have transitioned from a Tramadol/Nuerontin combination to Cymbalta/Nuerontin combination. That does seem to have lessened the burning but not eliminated it. I had a year follow up with my doc last week. He tells me his expectations are time will continue to be in my favor and I will see further gains. My strength and stamina continue to improve although I discontinued the gym routine for the summer. It simply becomes too busy in the summer.
We are now in the process of selling our home so a new adventure is in our future. We haven't found a new home just yet but have narrowed down the choices a bit. Next time I give an update, I expect to be relocated and improved once again! Keep thinking positive everyone and I wish you all the best.
donl1150, its so good to hear from you! Thankyou for the update, im so pleased to hear that you are gaining strength and you sound very excited about your new move.
Please come and let us know how it goes....and about your continued recovery. Sorry to hear about the nerve pain...Lets hope it improves a little more..
Well, oh my goodness….I really have to apologize now! Here we are approaching year end 2018 and 4 years have passed since I posted!! I am SO sorry it has been so long. I don’t know if I can adequately summarize but I will do my best.
We did make a housing move to the far northern reaches of Minnesota. We live out in the woods on a very small lake, very quiet & peaceful. Winters here do tend to get a bit brutal however. Last year it went down to -39 F. That is cold but we made it through!
I started my piano business as soon as we got here and it has rapidly grown. Not many piano tuners these days…..good news for me. I keep as busy as I want to be.
Now where do I stand medically ??
My neuropathy continues, from my forearms up through my biceps, into my chest and now down my legs into my feet. The worst part is the biceps and feet. With feet now involved, the docs were concerned it could be diabetes, but they have ruled that out.
My current level of meds is 3600 mg gabapentin daily, 800 mg daily of carbamazepine (Tegretol), Flomax & a B12 supplement. Reflecting back since my accident, my wife & I were discussing how things have changed (or not) for me. We concluded that in the 5 years since the accident (wow, has it really been that long?), things are better but to what degree? Not sure.
Here is what I have tried in the past 5 years:
Gabapentin (various dosages now up to the upper max) Cymbalta Carbamazepine Amitriptylene Tramadol Acupuncture Healing touch A device called Quell (a wearable pain relief device)
I have had:
CT scans MRIs EMG studies
I have had discussions with my neurologist regarding medical marijuana. He has no objection to my trying it but gave me the ‘speech’ about the lack of clinical trials as to the effectiveness of it. He personally can not help because even though it is legal in Minnesota, he is licensed in North Dakota only. Consequently, I have changed docs to one licensed in Minnesota. I have met with her and her diagnosis is the same as the previous doc. She agreed with all steps previously taken. Discussions with her relative to medical marijuana were the same. She too had no issues with me trying it but was unable to help me qualify under Minnesota statutes. She said my type of nueropathic pain would not be approved as ‘intractable pain’ as defined in the statute.
All that said, my wife and I concluded on a course of action. Since the best course of action is to make only one change at a time so you know what effect that change has, my first step was to eliminate carbamazepine. I was only on that for roughly 4 months and really didn’t notice any positive change so that was the first to go. I gradually reduced from 800 mg daily to zero over a 30 day period. I have noticed no change - either good or bad.
My next step is to try CBD (cannabidiol), a cannabis compound that does not have the psychoactivity effect of the THC compound. Again there is no clinical research as to its effectiveness but there is plenty of anecdotal evidence it may provide some relief. I am willing to give it a try since everything else seems to have had limited value. I know there are other threads out here on CBD so I will defer to them on that subject but I wanted to give an update on my situation. If anyone wants to chime in, feel free. All the best.......
donl1150, hi. I don’t remember talking to you before. I like your plan,...getting rid of whatever drugs you possibly can and trying marijuana for your discomfort. I believe in fixing whatever can be fixed. But there comes a time, especially with SCI, when a person is just suffering for suffering’s sake and for no other valid reason. We aren’t trying to prove how much pain we can cram into one lifetime. Many have been helped to get a little further down the road by marijuana. I’ve never had any. I do, however, take kratom,...not nearly so effective as marijuana from what I hear,...but legal to obtain in Texas without a prescription.
I have never heard of kratom but just did a quick search. Sounds like even less research out there on it than CBD. Also just saw the news report about deaths being linked to it. Not for me! You indicated marijuana didn't help you? Have you considered CBD, which is mostly THC free and I believe legal in all 50 states?
for me, marijuana vaping is the only relief I have from muscle tightness and minor pain which is constant unless I use cannabis oil to vape. I went 12 hours without today and I was feeling very uncomfortable, once I vaped about 5 good hits I feel so much better, thc is part of the pain relief for me, so I would use it. I would be suicidal if I didn't have.
I have never heard of kratom but just did a quick search. Sounds like even less research out there on it than CBD. Also just saw the news report about deaths being linked to it. Not for me! You indicated marijuana didn't help you? Have you considered CBD, which is mostly THC free and I believe legal in all 50 states?
No, donl1150, I said I had NEVER TAKEN any marijuana. Kratom is a wonderful, safe herb. Contaminantes added to harmless herbs kill people.