Category Archives: brain saga

posts i made on other sites documenting my brain surgery saga that i’ve copy/pasted and back-dated here + any new updates

four and a half months out

just a quick update to say all is going well. i had my last speech therapy appointment feb. 18th and don’t have any more doctor’s appointments until march 18th when i see dr. ballay, the ENT, again.

i continue to work half days dog walking with four clients, and just this last week reintroduced dog sitting to the repertoire. i’ve been staying with the world’s most lovely 10 year old husky named luna, and i’m in love with her! she is the sweetest and best dog, though has been exhausting me with four more walks a day in addition to my usual four. so my daily average of between 8-10,000 steps has gone up to around 15-17,000 steps a day!

the rollercoaster of weather changes has my body a little out of whack though. i’ve had some random vertigo outta nowhere that comes and goes in the course of a day; nothing so severe that i can’t function but enough to make me feel slightly “off.” and sleeping overnight in a different bed, regardless of how comfortable it is, always affects my sleep. so as this week of dogsitting winds down, i’m feeling myself pretty drained and exhausted. hopefully the weekend will recharge me.

so i guess no more health updates until the next doctor’s appointment. i’m doing ok, trying to remember to do my PT and ST exercises on my own regularly, still doing weekly neurosculpting mediations with emily, and trying to eat more fruits and vegetables by making weekly purchases from the farmers market. i hardly go to the grocery store anymore though i do still eat out more than i should, especially when i’m staying outside my home. but for the most part i think i’m doing a pretty good job of self care and i continue to be so grateful to have had the resources and support to take this recuperation at my own pace.

brain talk

this might take me a while, but i’m gonna copy/paste all my meal train updates from my brain surgery saga here and back date them so i have a record of all that not on meal train. and then i can post future updates here.

community is everything flower design

3 Month Checkups

Yesterday I had speech therapy for yet another VitalStim (electrode) session. My therapist has a new student, a young woman who is delightful and makes me laugh while I’m doing my silly vocal exercises. It’s nice to have the third person to lighten things up. They both said they were hearing improvement in the sounds coming out of my throat, so that’s good!

After ST, I went directly to Dr. Ballay the ENT. I think when we set this date for a follow-up he envisioned I would have completed more ST and VitalStim than I have – it took FOREVER for his order for more speech therapy and VitalStim to go through, and then my therapist canceled on me several times over the past month, so I think yesterday’s session was only #6. But Ballay said he could tell a difference between last time he saw me and now, in terms of my voice and breathing, and he asked me a lot of questions. I told him I thought the VitalStim was working but I just needed more of it, and that I thought my swallowing was getting better, slowly. He decided not to scope me and instead we set another follow-up appointment for March 18th, when I should be done with the current ST order which goes through the end of February. THEN he will scope me and we will see where things are with my vocal cords and my swallowing, and if I feel like I want a procedure to fix things or want to just keep waiting to see if it fixes itself. It was a very quick visit.

Today I went back across the river to West Jeff for my 3 month MRI to check for regrowth of the tumor that was removed. As I have already bitched on Facebook, they poked me FOUR times trying to find a vein to put the contrast dye in! And they waited to do it until after the first 20 minutes of no-contrast MRI had already happened. (Every other MRI I’ve ever had, they put the IV in before you get in the tube, and then just press a button when they want to deliver the contrast. I guess they aren’t as high-tech over there at West Jeff as they are at the Touro imaging place or at LSU.) Also, there was no music this time. Just earplugs. And the padding in the head cradle they put you in and tell you not to move was all cracked and dented, so at some point in the time I was in there, the back of my head started hurting where it contacted that padding. And I couldn’t move!!! But I made it through all 30+ minutes without them having to do any of it over again and it didn’t disorient me as much as the last one I remember over at Touro.

The biggest advantage to doing the MRI at West Jeff is that when I was done, I went right upstairs to Dr. Culicchia’s office and he already had the MRI on his computer and he was able to read it for me. No waiting for a radiologist’s report. (That will still come later but I already know what it will say.) Dr. Culicchia said there was NO regrowth at the surgical site, which is excellent news! I’ve been really anxious and sleeping poorly the last week or so anticipating this MRI, so I’m hoping I can rest better now for a while. He also looked at the second tumor, comparing the last two scans to today, and said it appears stable, looked exactly the same, which is also excellent news! He seemed really happy to see me doing so well and he remarked how much better my voice sounded.

I mentioned my eyes to him, that they are better though there is still some slight double vision that gets worse when I’m tired, underslept, etc. And he looked at my eyes and said he’d forgotten I had that deficit, because they didn’t seem as inwardly pointed as they had been before, they looked pretty normal now. (My right eye had noticeably drifted towards my nose post-surgery, so this is great to hear, that it has corrected itself.)

With all of my remaining deficits, he said to keep giving it time. He wants to see me in six months, which would be the end of July, for another MRI and check-up. If things remain good, with no regrowth and no change of the 2nd tumor, and my deficits continue to get better, we’ll probably go to a yearly MRI at that point. Which is pretty much as good as it gets in my position. So all of this was amazingly good news!!!

So no more doctor’s appointments for a while, and only 2x/week speech therapy on Tuesday-Thursday through the end of February. (Well except Mardi Gras, so we’ll probably move that one to LundiGras.) I’m so relieved. Now I just need for my energy to get back to something close to normal. I know, patience.

But all things considered, I am so grateful to be doing so well and to have been afforded the luxury of time to heal by all of you, my amazing community! I will never stop thanking you all for all you’ve done to get me through this. Thank you! I am one lucky woman.

3 Months +

Hi everyone. I know it’s been a while since I’ve updated so I thought I’d get you caught up.

Tuesday this week made 14 weeks, which is definitely more than 3 months, post-surgery! This is an important milestone. I am doing well overall and managing to work my half-day schedule walking dogs. (I am sometimes still very exhausted by my 4 dog walks and 10-11K steps/day, but I am doing it.)

Eyes: My vision has definitely improved. The double vision is much better than it was even a month ago. I still notice it some days, or some times of day, but it’s not stopping me from doing anything. I think my brain has just adjusted to it being the new normal. The last time I drove at night I was very aware that I had perfectly focused vision and no problems at all, which was wild! It can be hit or miss still and there will probably still be times when I will choose not to drive when my eyes are “acting up.” Also, I still get dry eye, mostly the right one, really badly sometimes, but drops help. At the end of my days or when I’m really tired, I get the dry eye and my right eyelid can still get really droopy. But overall, I’d say there’s been improvement and I’m hopeful that will continue over time. I haven’t seen an eye doctor yet but it will be time to do so soon.

Swallowing: It’s hard to assess, but I think I’ve made some small improvement. I’ve had 5 speech therapy sessions now with the VitalStim electrode treatment. It’s still so weird, every time! But today they had me eat a Clif Bar after I was done w/my exercises, as they like for me to get in as many swallows as I can when I’m hooked up to the device. And I really noticed, with the assist of the device stimulating my throat muscles, that I could swallow more completely, get a bite down with only one good swallow. It was amazing! I’m not there yet without the device, still usually needing 2 swallows to get food down, sometimes more, but the fact that I could feel that when hooked up to the device means the therapy is working. I definitely feel like eating has gotten easier, less laborious. I have 2 more sessions scheduled next week; I’m not sure when my ST order expires. But hopefully I can get in the 8-9 sessions she originally told me it would take before I saw much improvement.

Voice: Last week I had 2 people I hadn’t spoken to in a while tell me, completely unprompted, that they thought my voice was sounding much better. Some days I do feel like it’s starting to sound much more like myself. But sometimes I still feel like I’m talking in falsetto! It’s hit or miss, and definitely dependent on the time of day and how tired I am. Today in speech therapy I did however hit some low notes on some of the vocal exercises that I haven’t been able to hit before, and I can tell my range is getting a little wider and stronger. So I do think ST has been helping. I find myself now doing my vocal exercises while walking dogs – I’m sure others on the street around me think I’m some kind of crazy person! But it definitely helps to “warm up” my vocal cords, doing the exercises.

Next week will be a busy one for me. ST on Tuesday/Thursday. Follow-up appointment with Dr. Ballay the ENT on Tuesday after ST for him to re-assess my vocal cords. And then on Wednesday, I have my 3-month follow-up MRI to check to see if my tumor is growing back. Right after the MRI, which will be at West Jeff, I’ll take it upstairs to Dr. Culicchia to look at it and for a quick 3-month check up. So I guess by the end of next week I’ll have more to report!

Other than all this, I think this week I’ve learned that I really need to be getting more rest. I don’t really take naps anymore because I’ve been so busy in the afternoons, there’s no time. And this week, with the inauguration, I’ve had a couple of late nights with not enough sleep. I have suffered at work the following day both times, barely able to make it through the 4 walks. So I am recommitting to going to bed early and trying my best to get enough rest.

OK, I think that’s all I’ve got for you tonight. (No good pics to share, so here’s me walking dogs.)

12 Weeks!

This past Tuesday made 12 weeks since surgery. Not sure if we calculate the 3 month mark by how many weeks or by the day of the month – my surgery was on the 13th so maybe I have to wait until then to say 3 months? Either way, it’s close.

This was my first week of being back to my pre-surgery schedule of 4 daily dog walks. (Before the pandemic, it was more like 8-10 walks/day, but many of my clients have been working from home and/or can no longer afford to pay me to come, so since I resumed working in May post lockdown, it’s been 4-5 daily.) So, dog walking until about 12:30pm each day, then on Tues-Thurs, I went directly across the river for back to back hour-long PT/ST sessions.

The electrode therapy on my throat is getting easier to tolerate, but so far I’m not seeing any improvement. My therapist told me it might take 8-9 sessions before I noticed it helping, so I guess I’ll just stay hopeful. The day after my first treatment, I actually thought it was maybe making my vocal cord situation worse as my voice was much softer and higher than it had been, but we’ve decided it was maybe just that the electrode therapy tired my vocal muscles out. It’s really hard to say since I’m now getting the treatment 2x/week – not sure if my voice has gone back to what it was before the treatment or not. I guess we’ll see what happens over the course of this month.

Monday will be my final PT session. I’ll have two ST appointments next week and then we might go to 3x/week after that. PT these last few weeks has mostly been doing leg strengthening via various weight machines, and really focusing hard on the weak areas of my eyesight. (Looking left and/or down is much more in focus than looking right or up.) I’m having mostly good days now, with the eyes, though Wednesday was pretty challenging for who knows what reason. It’s definitely better overall than what it had been for the first two months post-surgery, but I wouldn’t say it’s yet back to where I was before surgery. But I can function, and when I’m at home I hardly notice it being a problem. I mostly notice it when I’m driving but it’s not ever bad enough to make me not drive. So I guess that is an overall improvement, for sure.

Though I am managing to do all these things, I am really exhausted by it all. When I get home in the afternoons – especially on the PT/ST days – I’m really just done. Not good for anything except watching mindless TV and/or staring at the internet. I know I’m still recuperating, and I need rest. And I am doing that. But it’s still frustrating. Well enough to work and get through these long days of PT/ST in the afternoons, but not well enough to do much else. Sigh. But this is precisely why I’m not going to resume taking petsitting clients right now, because I feel like I’m at my limit at the moment, energy-wise, and I don’t want to overdo it. I will reassess in February after I am done with ST and have gone for follow-ups with Dr. Culicchia and Dr. Ballay.

But hey, I’ve hit 10,000 steps 3 days in a row now that I’m back to 4 dog walks a day! Woohoo! Which is a good thing since it is now Carnival season and the king cake is flowing. I’ve managed to keep those 10 pounds I lost in the hospital off all this time, so I’m glad to have the activity to hopefully counteract the amount of king cake I know I’ll be eating for the next month or so.

OK, I think that’s all I’ve got for now. Thanks for reading y’all!

selfie with electrodes on my neck

Happy New Year!

I’m a little overdue for an update, so I thought I’d start my new year out doing just that.

This past Tuesday made 11 weeks post-op and I’m fast approaching my 3 month mark. Things have for the most part been going well and I continue to improve day by day. I have been walking two dog clients these past few weeks, and this next week I take the rest of my pre-surgery schedule back for a total of 4 daily dog walks. We’ll see how I manage that in addition to continuing 2x/week PT and the addition of 2x/week speech therapy. It feels like a lot but there’s no way to build back my endurance without pushing it a little, so I’m gonna try and see how it goes. My undying gratitude to Jen Sharp who has been walking all my dogs all this time since October and keeping my human clients happy until I could get back to them. It’s a huge gift to have a job/business to return to after an almost 3 month absence. I won’t likely be adding any new dogs or any pet sitting to the mix for a while until I’m certain I can handle what I’ve got, so please hit Jen up (or ask me to connect you) if you locals have petsitting or dog walking needs.

PT is winding down. I’m still scheduled through January 11th, so a few more sessions, but I’ll be “graduating” soon! This past week I advanced to using the weight machines, instead of the leg exercises w/ankle weights I’d been doing. (I still do the exercises at home every day.) I think my balance is back to normal and my legs and core are in pretty good shape. We still spend about half my sessions doing the eye exercises, which have been getting a tiny bit easier to do. My ST thinks my eyes have improved a lot in the time I’ve been seeing her, and I will say that I’ve had about a week of “good eye days” now. My vision isn’t perfect on those days, it’s just not so blurry that I notice it a lot and I don’t feel impeded by it. So that is good!

I still haven’t figured out an ophthalmologist to go see. If anyone local has a good reference, lemme know. I do think I’m gonna need a new prescription but I’d rather see an actual medical doctor since my nerves are involved. My current eye doctor is just an optometrist and I frankly don’t think he got my last prescription right, so I need to see someone new.

The big news is that I started back to speech therapy. My ENT finally put the order through for the VitalStim therapy, so we did that for the first time yesterday. The attached pic is me all hooked up with electrodes all over my neck – not a sexy photo, for sure, but wanted to share what it looks like. The electrodes are attached to a little machine that controls the intensity. The electricity pulses up and down slowly, and it took a minute to figure out that sweet spot where it wasn’t so intense that it was super uncomfortable but was intense enough that it feels like it’s reaching the right muscles to affect them. IT IS THE WEIRDEST FEELING IN THE WORLD, especially on one’s neck/throat! It took some getting used to but after a few minutes, I did. And then we just had our usual session, with me doing my vocal exercises plus some new ones, intermittently sipping from a water bottle so I could swallow as many times as possible while hooked up. Can’t say that I see any difference so far but I’m told after a few sessions I should start seeing some improvement in my swallowing ability, and it might even help my vocal fold paralysis some. (Not guaranteed but could be a delightful side effect.) So crossing fingers. I have back to back PT and ST 2x/week til the 11th when PT is over, and then will go to 3x/week on the ST through January. And then at some point, they will have me do another swallow study to see if this therapy has indeed helped. (I go back to Dr. Ballay, the ENT, on the 26th of this month for a follow-up.)

What else? Oh, I have driven at night a few times now, successfully, and yesterday I got caught in a storm while driving over the CCC bridge on my way to PT/ST. But it was fine! So that is progress! Driving is still a little tricky sometimes, depending on how my eyes are doing, but I’ve pretty much adapted to using tricks and cheats to get me through safely. It’s really great feeling independent again. (I probably still won’t like driving at night anytime soon, though.)

I have a few overdue thanks to folks for food they’ve made me. Anita delivered me the most delicious homemade spanakopita the weekend before Christmas; I ate some and froze the rest and have been periodically enjoying some since. (I heated some up for breakfast this morning! So good!) My neighbor Rhonda has now twice made me Crawfish Monica, the second time being last night for my New Year’s Eve dinner! So delicious and sweet of her to do! And Audra has kept me supplied with the most amazing soups in multiple deliveries; her butternut squash (or was it acorn squash?) soup is to die for! I really am so very grateful for everyone’s kindness and generosity. Though I am certainly well enough now to feed myself, those who know me well know that cooking is not my forté and if I won the lottery my very first indulgence would be to hire a personal chef so I never had to think about what or how to feed myself again. So I am always and particularly grateful for the gift of food. (This is not me asking for any more food or monetary donations, just being grateful for those who have provided me with such.)

Speaking of which… I don’t know what to do with this Mealtrain site. When I first decided to do my updates here, it seemed logical and I was trying to cut down on having multiple sites to keep up with. We – my friends who have helped administer this site – collectively decided to pay for the premium service, though I don’t even remember anymore what that entails. But now that I no longer need meals, donations or even rides, it seems silly to keep paying for this site and using it for updates. Do y’all even still want updates somewhere other than my regular social media? Should I find another site to continue updates? Or should I just keep using this one? Not sure what to do now that my health is approaching something closer to “normal” and there’s less to report on the regular. (Which is in no way to say I won’t still be dealing with my recovery for the next many months, and well, my neurosurgeon and I haven’t even started discussing my SECOND meningioma and what to do about it. But the frequency with which I actually have enough to share that constitutes an “update” is definitely lessening.) Please let me know your thoughts.

So there ya have it. My New Year’s update. I’m glad we are done with 2020. There was a lot of awful to go around, for most everyone. But I am trying to remain focused on all the positive things that happened last year and all that I learned through the pandemic and my brain surgery journey. I remain grateful to every single one of you who is reading this, for whatever ways you helped me, cared for me, loved me through 2020. I hope you can feel the love and gratitude I am sending back out to you.

Happy New Year, everyone!