LONG: Ruptured PICA (belated 1st anniversary) story

Good morning to all my beautiful BA people!

I apologize for the delay in connecting with all of you (it is now 1+ years), but I am incredibly grateful (and gosh darn lucky - strike that - “miraculous”) to be with you all now!

Miracle #1 was that I did not experience the worst headache of my life. Instead my left leg did not respond to commands (“walk”) which is how my whole world started to change.

I called 9-1-1 and arranged for someone to let the paramedics in the door. By the time the paramedics arrived, I was no longer aware/cognizant of what was happening, and wouldn’t regain cognizance for several days (partly due to a medically-induced coma). Miracle #2 that that phone call happened.

Miracle #3 is my fabulous neuro team in Philadelphia. Their hard work was only just beginning (read on)!

I am the proud owner of a coil for my 2 mm x 1.3 mm PICA annie. Seriously, who has the talent and skill to work with such a small space?!?! I don’t; sewing is not a strong talent of mine. :wink: Miracle #4 for my neuroradiologist and his team for their talent and skills.

Fast forward a few months, and clearly I was better - but also not. Sure enough, I developed hydrocephalus, so I made great impressions of the Leaning Tower of Pisa when sitting or standing. ;). I have grown to appreciate how amazing our brains are, and how they control everything - even things we do not think about (well, I didn’t!): balance, memory, etc. Miracle #5 to my neurosurgeon and his team who - again - stepped in to help and installed my VP shunt.

Can we talk about VP shunts and how amazing they are?!? Who figured this out? Who developed them? Who improved them? Who would be drawn to do this kind of work? (Again, not my forte.) In literally just a few days, my family noticed a tremendous difference, and at Thanksgiving 2023, my sister-in-law gasped at the table and said your speech is back to normal. Miracle #6 (and maybe #7 - just for kicks!).

Flash forward a few months! Although I started driving and being more normal - short story is I was backsliding. I started to have some sporadic balance, etc. issues again, and not act/do things I said I would. That was my warning sign, but it was sporadic enough that I didn’t believe it/process it!

So, after many heads got together and discussed it behind my back, I went back to the hospital, where the doctors eventually concluded I had bacterial meningitis. :rofl: Out comes the VP shunt, and I was hooked up to an EV shunt for 2 weeks while I was on mega antibiotics. In went the new VP shunt, which - anecdotally - my family claims is even better than the first one, as I am more like my old self (but I respect that none of us can be after what we are all going through)! Miracles #7 and #8 to my neurosurgery team AGAIN - just because they deserve extra points. :grin:

I am now back home, and finishing up this chapter of PT, etc.

At my anniversary date, I started to tack on “survivor” to my name. I also realized that after all I have been through, I have not truly begun to process emotionally what has happened. I shed no tears until my anniversary weekend, so I appreciate that I need to work on a different type of healing now, hence why I wanted to reach out to all of you.

A second chance at life is a gift, and I am grateful to be with all of you!

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What a year+! And what a tremendous story. Welcome, so wonderful to have you here. Stories like yours remind me how much the brain and body can endure and recover from. You give us all hope.

I’m so glad so much worked in your favor to keep you here with your family and friends. It is my sincere wish for you that this next year and those ahead will be as peaceful and quiet as the last year+ was high drama and tension filled.

Thank you so much for sharing your experience with us. May you continue to feel stronger each day!

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Happy belated survival day! We like to throw a party for everyone who’s supported us through the year, it helps. Some people come and new people take their place. Some remain and our steadfast in their support. It’s healing to cry, no doubt about that. But I find for me, it’s more healing to laugh. And hugs, hugs increase endorphins so hug the ones you love!

@Judi and @Moltroub (and all the others) for the well wishes and warm welcome!

I am grateful to have made so much progress, but I know there is more healing to happen. Emotional, clearly, needs some attention. :grin: I have no idea as to whether it is scientifically helpful, but I recently learned about a type of art therapy, neurographica, and plan to try it out soon to help process my experiences (what could it hurt?). I suspect I was drawn to it since all “neuro” words catch my attention these days, but if anyone else has had experience with it, I would be curious to learn the pros/cons.

Like some of you (in reading prior postings), I need to do a better job in managing my spoons. Just this past weekend, I thought I was managing it well, but ended up pushing myself much too far. As such, it has been days for me to get back close to balance again. (I still have to figure out to pay attention to the signs, much less what those signs actually are for me!) I still choose to remain grateful though.

@Moltroub - Yes! Laughter is my favorite prescription as well! I actually spent my anniversary weekend looking up BA related items (preferably silly) on the Internet. I found a thank you card for my neurosurgeon and neuroradiologist, and am wearing a silly t-shirt in honor of my neurosurgeon. Still on the hunt for one honoring my neuroradiologist’s contributions, but I have a few months before I see him again.

Hoping you all have a beautiful day.

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You could try one of my dad’s cartoons…

You sound like you’re doing brilliantly, to be honest: recognising how much is not quite right and doing something about it is a very good position to be in. I am sure that you’ll get much better.

Oh, and I’m also convinced by the benefits of a bit of art. Go for it!

Very best wishes,

Richard

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Richard -

@Richard: Your Dad was a genius! :laughing:

Thank you for the laugh - it was a gift at this moment, and much needed and appreciated.

Besides “neuro” in the name, the biggest appeal is of neurographica (as I understand) is that it can be done by those who have no artistic talent (raises hand). Although if for some reason I am discovered as being a genius, I state here & now that proceeds will go to a cure for aneurysms! But, appreciate that is not likely to happen. :wink:

Thanks for the well wishes!

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Art for Stress Reduction from a Non-Artist This is a good start from a member, there may be more in our group topics

Don’t forget music is very healing as well!

@Moltroub

Thank you for the suggestions! I apologize, I should have thought to have looked for advice in prior postings … forgive me, I had a brain injury! :rofl:

I do not know as much about music for healing, so that’s another great topic to explore. Via searching, of course.

I appreciate the advice.

It’s all good! My excuse is I’ve got brain damage, but I usually ask people “what’s your excuse?” Can’t ask you that you lucky person! :joy:

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@Moltroub

Ha! Love that!! (And thanks for the laugh to start off the day. :rofl: )

A little bit of a slow start this a.m. - neurographica evidently helped me to relax last night. Thanks again for the encouragement! :+1:

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FinWhale Fan,

Congratulations on your healing and insight. What you describe is familiar, I’m in my 12th year post SAH, I had coiling, a shunt, after many infections. I don’t have memories til the first year after I was discharged and home. It is amazing what we can adapt to.

The first few years I saw lots of progress. Reading, support groups and routines helped …… then Covid seemed to bring a paralysis of progress and rapid change in support and helpers. It seems isolation is not healthy even if we are happy introverts.:wink::smiling_face:.

Wishing you much hope, luck and help and support. Counting your blessings, being aware of positive and showing gratitude to others seems to help, others say this a lot, sounds like Sunday School lessons. Anyway…wishing you well, be aware of hurts and ask for help, defend your rights. Best wishes!!

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Hi @Kdyd,

Thank you so much for sharing your story, although I am sorry if it brought flashbacks for you.

You helped me to confirm that I did not have a unique experience, and affirmed my hypothesis that sometimes things just happen (infections) - and that is o.k.! Speaking of Sunday School lessons, it is how we respond to challenges, right? :grin:

I laughed! I can completely agree with your statement that happy introverts actually do need people too. :smiley: I learned that earlier this year when I realized how much my former work colleagues were a part of my life (I had been with the company a LONG time), and here I was in this new world without people who were part of my daily life. So, lesson learned, I need to develop a different social system. It is all good!

BTW, I love your kitten picture. Kind of looks very similar to my young man, who isn’t quite so young anymore. :smile:

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Hi @FinWhaleFan,

Thanks for your kind response. I was amazed after retiring because of limits from SAH, I missed seeing folks who I only knew only from casual daily encounters but did not really know them, I thought I was more social but knew I could not cope with uncontrolled groups.

i would soon find ‘dread’ with zoom groups. It was first interesting to be in connection after Covid isolation but attention seekers seemed to take control if there was no skilled facilitator. It was a social psychologists field day, so much to study!:wink:.

Anyway, I hope you find ways to remain healthy and happily connected. Best wishes!

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