Hello all, I hope everyone had a great weekend and are starting the week off right! As usual, I've been spending my time researching how I can continue to better myself post craniotomy and stroke. This July will mark 3 years since my rupture and stroke. I was 20 at the time and even though I'm at a better place than I was, I still have a bit of paralysis from the stroke. Now, I can listen to all the Drs and Therapists out there who tell me there's no hope for me to recover or I can keep on keeping on and strive to prove them wrong. I've chosen the second option. So far, I've invested in the bioness, drive to another town to use the Alter- G, and now, I want to start doing hyperbaric oxygen therapy but before I do that, I want to ask if anyone here has used it? If so, what was your experience like? Thanks for reading and I hope you have a great day.
My comment didn’t post:( I’m very curious about what experiences are out there.
Good for you Monica
the truth is they just dont know and you are young and can hopefully continue to make improvements in your mobility. I have not done the hyperbaric oxygen but interested
I did make some improvements with my left side issues using a tens unit I got off of Overstock
They are cheap and can help wake up your nerves and muscles and help with pain
Interested to hear your progress!
Hi Jeremy! I'm sorry your comment didn't post. I've done research and seen very positive feedback on YouTube. How they explain the healing ability for TBI and stroke patients, it really makes sense. I'm very willing to try it but almost everyone I ask about it just say theres not enough evidence that it works which discourages me.
Hi Angela! Hope you're doing well. Almost everyone I ask about it say there's not enough evidence that it works which discourages me. I have both the bioness and a muscle stim device which are very similar to the one you sent. I've been feeling so down lately as im approaching my third year in July ( since rupture) and although I'm at a better place since then, its hard not to look back and miss being who I was pre rupture and stroke. I'm still struggling as my left side is still a bit paralyzed. I cant wiggle toes, open hands, and tone hasn't improved.
I had good results with a tens unit bringing symmetry back to the paralyzed left side of my face. Good results with CBD oil and uncontrollable muscle stiffness. Acupuncture is next on my list of things to try.
You’re going to have to accept that you’re going to be a pioneer in a lot that you do. There’s just not going to be a lot of research out there and some things may not work. Then again you may be the first
Monica I know its so hard not to get down and frustrated.
Look just a few years ago drs I spoke to would not even touch stem cell now they are doing it. I get it that there is not much data on it and even it was we are so different than what the mass pop has and goes through- I usually try new treatments 2 to 3 times to see if I am seeing any improvement.
I dont have the bioness anymore but when I am tired my left foot pronates and also I find myself holding my left arm close to my body like its not working and just had a bad fall a week ago but I playing pickle ball with a bunch of competitive senior citizens who I have to keep reminding them that even though I am young I am messed up!
Keep thinking positive I know you and I had our strokes in the same area and I was told my thalamic was dead! Then last year they said oh its back...interesting how can it go from dead to back? I mean I believe them but I still have pain every day and thankfully have most of my mobility back but that was 5 years it took to revive my thalamic
I do take MCT or Coconut oil every day which I strongly believe was the essential piece of my recovery
I do PT almost every day as well which I just believe I will do for the rest of my life I have gotten stronger in the last year
Jeremy, whats cbd oil and how did you use the tens unit? Im thinking of purchasing it since I still have a little weakness on my face.
Thanks for always responding. I love hearing about what you've done in order to gain your mobility back. Remind me what MCT is please, I forgot lol I truly believe technology is always evolving and there are new things being created each day to help those with strokes. Just last week while I was at PT in UCSF I was introduced to a device that allows stroke patients to have full use of their arm. What did you use the tens unit on and how has it helped? Im going to take your advice on trying something at least 2-3 times to see improvement. For stroke patients, its recommended that you do 10-30 sessions in the hyperbaric chamber. I've also read online that a person was able to gain their mobility back after using the hyperbaric chamber 14 years after they had their stroke.
CBD oil is the non buzz stuff made from the pot plant. You can get the hemp oil completely legal online. The stuff made from pot is regulated in most states. It’s what parents are giving to their epilepsy kids. The Tens unit is an electric muscle & nerve stimulator. I would put one pad on my cheek and one above my eyebrow to work the paralyzed muscles. The increased muscle tone helped the slouch. 3 times a day for 15 minutes. I would move the pads around a little each time.
You're very right Jeremy!
Ahh I see. How did you use it exactly? im very curious and might check it out for myself :)
I tried the hemp stuff first. Etst is one brand. To see if it helped. You’re looking for high CBD. A dropper under the tongue 2-3 times a day. The pot based stuff I went to Colorado for. It depends on your state. It’s a big gray area right now. My arm draws up like Angela but all the time. My left side moves like Frankenstein. I’m very curious if the Mct oil she talked about helps. This stuff definitely works but a lot of hurdles
Saw an article on this and was very interested after my bleed. Here's some content from the article :
It was hypothesized by the researchers that such increased levels of oxygen may revive the inactive nerve cells in the post-stroke patients’ brains.
The therapy seemed to help. After conducting hyperbaric oxygen therapy for two months, increased activity was seen in the brain images in case of the treatment group in comparison with the non-treatment, control group. Visible improvements were also shown by the patients, like renewed use of language, enhanced sensation, and paralysis reversal.
Hopefully some people here will be able to do this and show some positive results.
I really liked the HBOT treatment. I saw a little relief in my head pain for about 6 weeks. I did the full treatment it was every day for 90 minutes no weekends for 30 days I believe. I was hoping it would revitalize any brain cells that were dormant from my bleed. I think it helped. It did not solve my main issue which is my head pain since gamma knife surgery. Keep pushing and don’t let the doctors dictate how far you can go. At the same time we have to realize we will never be who we have but we can strive to get to where we want to be.
I meant to we can never be who use to be but we can always strive to get better!