It’s ALWAYS something, right?

Howdy, just joined this forum. Took a while to find it, actually.
I was an active 44 year old “surfer girl” in Cocoa Beach with a couple of TBI’s and chronic migraines already from being too gnarly in my past. Recently, I had noticed that I was becoming more off balance when I surfed, and my left foot was starting to turn on its’ side when I walked barefoot around the house. It was becoming painful, but I thought it was a bad bunion or something.
A couple of months of increasing foot pain and unsteadiness (which I had reported to my neurologist) went by, but the fatigue was getting worse as well. After a fun day at the beach before the COVID restrictions would close everything down, I was at home alone that night and walked to the bathroom.
It would be the last time I’d walk unassisted again.
While I was in the bathroom, I looked down and saw my left foot curl inwards, then I tried to move my left arm and realized I couldn’t. I had a tremendous sharp pain behind my right eye, and realized I was having a stroke. Of course, I had left my phone in the other room! It took me TWO HOURS of crawling on my belly to get to the other room to get to my phone to call 911.
It was a very painful next few months- not only did I have a massive bleed in my brain, I threw a DVT in my left leg when I crawled to get my phone because I hit my hip bone on the hard terrazzo floor, but I couldn’t feel it since that side was paralyzed. I wouldn’t wish that pain on anyone. Every nerve was on fire, plus all my blood vessels were backed up. Yikes.
Anywho, this was during the start of the COVID restrictions, so none of my friends were allowed to see me, and the hospital treated me horribly, assuming I had “done” something to bring the stroke on myself.
Fast forward a few very painful months while the blood cleared, and they finally did an MRI, MRA, but it wasn’t until they did a cerebral angiogram that they found I had a very small DAVF that bled profusely near the top of my brain, but that I also had two more small AVM’s located deeper in my brain in other locations that had not ruptured yet. Because of the size and location of these lesions, I was told surgery would be very tricky for any neurosurgeon.
After going through that much pain, and now being left with a chronic clot in my leg, I’m opting to take my chances and NOT have surgery, since GKR can’t be done, and coiling would be too tricky.
It’s coming up on a year since the stroke, and I still have spasticity in my left foot, but I regained most of my movement on my left side otherwise. I still require a walker or a cane to walk (along with multiple braces) since my left leg will give out without notice. I’ve had Botox injections, but they’re not really helpful so far. Still going strong with physical therapy too, which has been invaluable, but painful. No more surfing for me in this life I guess, but I got a good 20+ years in, so that’s a lot of tasty waves.
Soooo…like I say all the time, “It’s ALWAYS something…”

7 Likes

Wow!

I’m sorry you find yourself here but “Wow!” well done for fighting and getting to the phone! I love your attitude – it’s amazing!

It sounds like you’ve had a dreadful experience altogether but not all hospitals are like that. I would rather hope that you might swap notes with some of the other folk in the SE USA and maybe find a doc who is a lot more sympathetic to helping you with any of the residual issues. You’re definitely not alone. I do think I’ve seen others in FL that have had an unhelpful time.

Welcome! And love your fighting!

Richard

3 Likes

Thanks for the welcome!
Yeah, I noticed that there were others in Florida on here who seemed to have some problems too- my doctors kind of threw up their hands at this one. It took some prodding to even get them to find a solution, so I was happy that they even found the cause. At times, I felt like I was going to have to enroll in med school just to diagnose myself. Yikes.
Looking forward to chatting with others on this Forum!

4 Likes

Oh my goodness!! That sounds like a wild roller coaster, and not the good kind! But we are glad you are still here!!! Recovery is a long process and everyone here is so supportive!

Wishing you well on your continued recovery! :slightly_smiling_face::pray:t5:

4 Likes

Thanks so much!

1 Like

Hi!! Welcome!! I wanted to recommend CBD maybe it’ll help a bunch spasticity wise like it did with me. Ultimately it is upto you. But I wanted to suggest it since you’ve had a bumpy ride and that’s not fair. So a light at the end of the tunnel little fix :heart: Hope recovery comes quite smoother for you from now on forward!!

3 Likes

@Tater Welcome to the group so glad you found the site I am so sorry you went through so much. Having a massive stroke sucks big time I have been there myself.
I had rare stroke at 43 pre avm called a CVST due to 5 blood clots then went into a coma and then woke up paralyzed on my left side and brain damaged and couldnt talk etc
Then about 6 months later I told the head of stroke who is my dr that I was having some new symptoms and he said no way could I have another rare thing and they found the DAVF.
I did regain most of my movement but I still a lot of brain and body pain.
I know its been about a year for you but dont give up hope and keep up with the PT- Not sure if you have ever tried PT with tens/EMS unit. It really helps my stroke leg. Drs told me since my stroke impacted my thalamus area I have centralized pain syndrome. I do get botox shots in my head and I do Marijuana gummies and ketamine infusions for pain
Hugs Angela

1 Like

Thanks!
I used to vape cannabis sometimes for migraines, but I wasn’t a fan of the side effects. I’ll have to look into CBD as a possible milder alternative. The spasticity has made it impossible for me to get back to some normalcy since it throws me off balance constantly. This has been the hardest during PT especially, since I want to regain my strength.

Angela, thank you so much for your story! Blood clots are super painful- that’s unreal that you had so many at ONE TIME. I’ve had 2 DVT’s, and that pain is unbearable. DVF’s seem to have their own special unbelievable flavor of pain as well, it seems.
I’m so sorry you have had one rare event after another…I can relate- we need to start a “Series of Unfortunate Events in Life” Club! :joy::joy::joy:

1 Like

Hi @Tater Today is my 10 year anniversary of getting out of the hospital from my CVST. It was the worst pain and when I was in my coma I did want to die and could hear what was going on around me.
I knew my brain was swollen and was wondering why they hadnt open it to relieve the pressure-
It definitely seems like we are all in the rare club- if its rare its going to be us.
Before Marijuana was legal for everyone here in California my marijuana dr just by chance is also a also neuro who specializes in the Basal gangila part of the brain one of the areas that was impacted in my stroke. I asked her why she was doing this and not making the big bucks at the hospitals this was back in 2015- 4 years after trying a bunch of opiates that just made me sick - I am allergic to many meds-she said cause opiates dont work. I asked her what I should take and she said I would just have to try a bunch of stuff to see what works for me. I dont like feeling high it seems I am a lightweight so the gummies , topicals and teas are all helpful without making me feel high. Even my 70 year mom preferred them after her spine surgery. After being on them for just one year my brain showed no signs of my two strokes. My dentist said she thought it was the marijuana that helped my brain heal. I still have pain but it has helped.
My Stanford pain doctor also thinks taking a muscle relaxer at night is important too, Right now we switch between flexirl and tizanidine. I spoke to her today and she is suggesting a new one but is double checking it doesnt interact badly with my other meds so once I have it I will update it here-I did try just topical cbd which funny was more expensive then marijuana topicals - I do find with THC helps more with pain-
hugs Angela

2 Likes

Angela, thank you for sharing your story- I can’t imagine being in a coma :flushed: especially when you can hear everything and can’t respond…!
My anxiety and pain has been through the roof, so I’m going to give the gummies a try- I really hate taking strong meds like opioids, since the side effects end up being just as bad as the pain itself. I just want to minimize the spasticity and have manageable pain so maybe I could build some muscle back possibly. I know surfing’s permanently out, but it would be nice to go in the ocean and try to kick a shark :joy::+1:

1 Like

@tater I love the ocean too. I have always wanted to learn to surf but growing up in SF was too afraid of the great whites to try it. But love to go to Maui and enjoy the warm ocean. I am not sure if its all the weather changes or just all the crazy stuff going on in the world but I have heard many people stating the same about pain and anxiety - I was just telling my pain dr as well. I always start out with half of the recommended dose at first with the gummies etc. I am sure you know but Indica helps for sleep . It definitely helps with inflammation and my drs also have me taking celebrex .
Yes being in a coma and hearing everyone was a trip my husband had the news most of the time which the big earthquake in Japan had happened and they were talking about radiation issues and we were supposed to be in Japan at that time but had cancelled so I thought we must of gone and I had radiation issues and was dying from that - mainly from the news I was hearing and that I also heard that my roommate in the hospital had bladder cancer that had spread and they were waiting for his sister to come back to tell him he was terminal.
I did alot of pilates for my PT at Stanford with the EMS/tens machine on to wake up my muscles on my stroke side. I never thought I would be able to swim or play tennis again . I can do it just not for the duration I used to be able to do. I am thinking positive thoughts for you to get some relief and to get back in the ocean and try to a kick a shark safely :slight_smile:
Hugs
Angela

2 Likes

I don’t remember much about my 21st birthday party. I celebrated it in the National Rehabilatation Hospital in Dun Laoghaire – just four months after suffering a brain haemorrhage which changed himys life.
Now 44, I am from Rathfarnham in Dublin, was a third-year chemical engineering student with a bright future ahead of me when I suffered this devastating blow. “People thought I was going places and so did I”. Academically gifted, I worked hard and was a keen golfer and rugby player.
A former student at St Mary’s College in Rathmines, I won a Leinster Schools Cup Winner’s Medal in fourth year when I was thrilled to play the final in Lansdowne Road. “It was unbelievable. We won it on a replay,”.
At the time it would hardly have seemed possible that within a few years Ian would not be able to walk or talk. He got the impressive Leaving Certificate he and his family probably expected, and with 550 points for UCD, sailed through the first few years of his course.
I was in bed asleep when he had the brain haemorrhage, just two days before he was due to sit the third-year exam. He has no memory of it. “The next year or two didn’t happen for me,” he says.

After four months in hospital he was transferred to the National Rehabilitation Hospital. Two things stood out for him there – the “phenomenal” progress the staff helped him achieve, and the state of the building itself. “At that time it was like something out of the Crimean War,” he says. “It’s a place that encourages you to get better and not to give up hope, when life can seem at its lowest, so I wished it was more uplifting.”
But while he may have felt that his surroundings were bleak, this did not hold him back. “I went into rehab in a wheelchair, unable to do anything for myself and hardly able to say a few words,” he explains. He had also lost the use of his right arm and hand but by the time he left Dun Laoghaire, he could do many things such as dress himself and tie his shoe laces, with just one hand. He was also able to walk a few steps while speech therapy was really successful.
It is a source of sorrow for Ian that he never got back to college but he no longer needs a wheelchair. He has a job with Allied Irish Banks. He says his family has been his rock – his parents Liam and Mary bought him an apartment.
He is optimistic about the future. “At last I see myself becoming independent and self-sufficient. I look forward to the future with hope and confidence.”
Reaching Out
Last month, much to the delight of his family and friends, Ian walked the entire 10k Spar Great Ireland Run, raising over €2250 for the Acquired Brain Injury (ABI) Ireland. He says he did the walk to draw attention to the work of the charity and to highlight the Facebook page he set up to reach out to other people in a similar situation.
“Anyone who has had an ABI can come on and chat and meet people who have had and are having similar experiences, he says. “My social life is not what it used to be. It’s difficult to meet people who see beyond my disabilities. If they knew that I did a skydive in New Zealand a few years ago, they wouldn’t believe me.”
Ian says that people meeting him for the first time sometimes judge him on how he speaks, or don’t see beyond the spasm in his right hand. “My old friends are the best friends as they know the real me.” He says he sometimes gets stuck for words. “My flow of speech is often interrupted. I can think it but I can’t say it and this can be very embarrassing,” he explains.
“People can judge wrongly. It’s true what they say, “never judge a book by its cover.” It’s particularly frustrating when he meets a girl he likes. “Sometimes by the time I get around to saying it, she’s gone and again, I’m judged wrongly. It’s not exactly good for the morale. It’s not the way things were one time.”
Confidence Boost
One thing that he was told when he was leaving hospital was that he would never run a marathon. But training for the Great Ireland Run and doing something to help Acquired Brain Injury Ireland has boosted his confidence. “It was a massive achievement for me to walk 10km. I go to the gym two or three times a week and do a bit of walking as well. It may not have been a marathon but it sure felt like one to me!”

3 Likes