No worries guys will update after the next 10 sessions
Session 11: my hand opened!! And has stayed relaxed on my chest in comparison to it trying to choke me lol (also I didn’t manually open it!! It just opened it!!) I had already opened it on the day of session 10 but I had stretched and it happened (like how I used to stretch pre-stroke) so I figured it was why it opened but this time it just opened on its own!! Now I just need to perfect it and finish my sessions and hope/pray I can control finger by finger soon
May the New Year bring you even more success!!
Hello @Teiry Teriy
Do you still have your avm? I was told I could not do a hyperbaric chamber due to that I still have my DAVF. Did you notice the changes during the treatment or afterwards? Does it feel weird while in the chamber? Thank you
Nope it is dead I was embolized and went through a craniotomy and every angio it remains dead lol I was super concerned of a possible regrowth but my neuro radio interventionist reassured me I would be fine and if it were to grow back he’d take care of it immediately but thus far no avm symptoms!!
No need to thank me I noticed the changes like after the 3rd session. It feels no different than laying in bed watching tv (my hyperbaric chamber clinic has your chamber facing a tv lol so you don’t get bored in there and the audio is inside as well
Oh also your ears pop constantly like as if you were on a plane. Aside from that you breathe and feel just the same. But OMG the exhaustion and hunger hours later, after a few sessions… because something is healing and it is apparently normal lol!! I recommend it. But of course once you’ve been “cured” and have passed your yearly angio checkup with flying colors for several years in a row. I’m going unto year 4 which is why I decided to give it a go. And have done wonderfully on my angiograms that I finally upgraded to every two years. Fingers crossed that everything remains well. Trust me if I start feeling numbness on my affected side or weakness I’ll for sure update and tell everyone not to risk it. But for sure get all your doctors on board and have them approve as I did. Wouldn’t want to risk it once the nightmare is close to over
Oh also they’re extremely OCD about what you can and can’t take in there. For instance glasses are fine but you can’t wear deodorant or your clothes (strictly hospital gown) to avoid fires. Take all your medications etc. I generally see a difference after 5 sessions in a row. Not just one. Boy it is costly though!! No insurance will pay for it since it is not a for sure solution. It is still being tested as stroke recovery option. I pay $1,600 /5 sessions. And I have 5 more sessions to go. I have heard other people have done close to 100 but the risk is not worth it. (You can go blind, mess up your hearing or lungs if you do too many hence it must be done under a certified hyperbaric dr)
@Teiry Thank you for all the explanation it sounds great- I was looking into it. I did have a Cerebral Venous Sinus Thrombosis massive stroke before my avm /davf was formed and from that I went into a coma and had brain damaged and was paralyzed then about 6 months later they found the davf I think it formed about 3 months after the stroke I actually felt weird one night and had stroke symptoms but when they ran a reg mri of course they didnt see it . Anyway after my second embolism they said they couldnt risk touching the remainder cause it could cause me to be paralyzed again and I had regained my movement. So we are in a holding and wait pattern, So they told me I could not do it - I still have weakness on the left side even though they said now my brain shows no damage but I still have constant pain so I would love to try it- But even flying I five hours I usually get a headache and have to wear compression socks ever since the DAVF- I am so glad its helping you.
You could keep it as a backup plan, as I did. (in case they ever decide to intervene) It’s not a magical cure, don’t get me wrong. I still do OT/PT AND take cbd (just not as often now like maybe twice a week now in comparison to every day and I only do so to achieve the most potential gain in therapy. Stay hopeful Angela!! For instance I know I will never be able to play the piano again BUT I just want to be able to drive (despite all the adaptations out there that I have purchased my husband refuses to monitor my driving until I am “better” but who knows if better will ever come right? ) I feel like a caged bird especially with this covid mess now
@Teiry I will for sure keep in mind if I ever get rid of my avm. I was really looking forward to trying it before my neuros squashed it-
I am lucky I am able to drive and it was after a year on marijuana gummies that my brain no longer showed any signs of the 2 strokes I had - I know what you mean with COVID we live in the Bay Area and its bad and we only have 110 ICU beds for about 1 million people and one hospital was about to close due to bankruptcy but was saved because COVID - sadly they built so much but didnt add any new hospitals with any new ERs - not good planning - We even had a hard time getting one of our cats seen at the vets before Christmas - Happy New Year!
I use cbd powder here and omg game changer!! I can totally relate with the excitement of wanting to try out hyperbaric therapy lol. Now I’m just like how do I get more sessions and darn I’m broke 2020 and hyperbaric therapy out of pocket has done a number so hopefully I can save up enough next year and see if I can get a prescription for another 20 sessions:)
Can you tell me more about this? Is this ONLY an option once the AVM is gone?
So it seems. I asked my doctors 3 years AFTER my avm was dead and just still focusing on as much recovery I can obtain. It has been a great boost. Not a magical cure, don’t get me wrong. I am still not where I want to be despite reaching what I like to call the comfortable phase. I am not the type to conform though lol
So based on what Angela was told, I definitely wouldn’t recommend it until after your avm is a thing of the past. I hate not to be able to be more descriptive but it’s only because Im waiting to see the change of my next 20 rounds and the difference in my angio, ctscans etc. I will update once I see what my PT and OT notice difference wise
Teiry continues her update here: Update of hyperbaric therapy