Good days, bad days

[trekhard]

For some reason, fatigue seems to be the #1 issue that goes hand in hand with brain surgery! (not an actual fact, but based on my own experience and what others say here).

It definitely will get better. Have him do brain game books (it really helps!). He will need a lot more rest up front, then once he starts back to work he probably won’t want to work as long days for a while.

I am 2.5 years post surgery (but not coiling) and while I am able to full on work-out really hard, I still feel that I can’t work-work crazy hours anymore. My body hits a wall much earlier.

[HHG]

thank you for taking the time to reply. Yes, the body really knows when it want’s to rest. I think it is learning to adjust to the new normal, and not to freak out about every strange twinge or small pain going on in the head. I think the mental fatigue is now kicking in as well. We will get there. Thankfully this support group is there for us. All the best to you.

[BrianS]

I just thought I should echo previous posters. It is a marathon, not a sprint. When I got home from the hospital, I was trying to do everything I could to put this behind me. In retrospect, what I should have done was take my time. I wanted people to know I was alright, but in the end, because the process takes so long, people just wondered why and then I felt that pressure too.

Be patient. Good days and bad days are the new normal. Low energy is not uncommon. I am thankful for the days that I feel like its the old days. But that only happens once in a blue moon. Naps help, but I try not to do that too often as it screws up my night sleep.

I was once told during my therapy that my brain now works five times harder to do the same thing that I was doing before. Therefore, it stands to reason that I am going to get tired faster. I think of it like my cell phone battery. When my phone was new, the battery was great. After a year or so, it seems like the battery doesn’t charge as well and it peters out quicker. Now, my battery never full charges, so you just have to figure out ways to preserve battery life. If I know I have a big thing at night, I have an easy day. If I have morning work that is demanding, then I try to schedule an easier evening. Life just takes more thought and planning. Its less flying by the seat of your pants.
Best of luck!

[RichardB]

H,
Keep the good work going it will get better, I’m almost seven years out and I’m still tired. I do have issues of being dizzy but it passes
Quickly. I’ve been lucky considering they said I should be gone or a veg, I’m working full time
And feeling pretty good I still have memory issues and Blindspot but grateful that I can drive.
Rich

[Sarah_D]

I can’t stress enough - have him REST REST REST lol. Sometimes the best you can do in a day is eat and shower, and other times you can do a walk or some chores. Believe me when I say this though, resting is the #1 healer! The more he can rest, the quicker he’ll get to his new normal, which may be back to where he was before, or it may be truly a new plateau. I had a large/giant (2.3cm) vertebral/basilar aneurysm that didn’t rupture, but it did need coils/PED stents, with a second surgery for more stents about 8 months after the first major one. I had no idea that just those non-invasive surgeries could cause so much recovery!! I had headaches for years (this happened in 2012), but rarely get them now (piercing, pulsing, stabbing, throbbing pains right where the aneurysm is located, upon standing up too fast or moving around much). Fatigue plagued me up until I realized I was iron deficient, just two years ago, but that didn’t help enough taking iron supplements and now I’m taking something from a naturopathic doctor that helps my adrenal system, as it seems to be shot. No idea if any of those are related to my annie, but I was perfectly healthy before it. In the very beginning of recovery I had some aphasia - I couldn’t find the right words (I could picture the “thing” in my mind but I couldn’t verbalize it), and occasionally still do but I am pretty good at talking myself around until I get it out. The worst part is probably telling oneself that this was an actual brain surgery, not just some minor procedure, and getting those around us to understand that too, despite the fact there’s not much in the way of scars to show for it. When people don’t look sick or hurting, it’s hard to understand that the mental game is just as difficult as a broken arm or knee replacement or similar. Those things take a lot of time to heal, but there’s a visual cue to see it all and with the brain it isn’t so obvious. Maybe journaling will help to see the progress he makes, whether you write about it or he does or maybe even both. At any rate, thank God he’s home, and I pray for the best outcome!

[HHG]

thank you Rich,
I really appreciate all the feedback and advise. It’s been a couple of good days, we take that any day! All the best to you. Heidi

[HHG]

Dear Sarah,
Thank you for taking the time to respond. Reading your story has given me hope for the future. My husband’s aneurysm is also a basilar one. He also presented with continuing headaches (mostly above his right eye) and was sent for a scan straight away. He had the procedure 2 days later. His aneurysm had not ruptured, but the doctors believe that there have been a small leak. He has had two coiling procedures, and a number of cat scans, angiograms and MRIs. All of this has quite literally pulled the rug out from under him. It all happened so fast, and he spent many nights in the hospital and the ICU.
He’ll have a follow up MRI this coming Monday. Fingers crossed that it will all be ok, and that he can relax a bit. This all has been emotionally taxing as well.
I’ll make sure that he takes his breaks and rests. Your advise is much appreciated. All the best, Heidi

[HHG]

Will do!

[suzyq32]

I have seen you mention several times about drinking water and eating protein. Do you have a certain amount you dear daily and a specific eating plan. Also, I know you have had your treatment at WFBH in Winston Salem as you have shared in the past. Who is your neurologist in WS? I also had my repair in WS and am wondering what neurologist is following you? Thanks so much!

[Moltroub]

My Neurosurgeon is Dr. Stacey Wolfe. When I first met her it was Dr. Stacey Quintero-Wolfe. I love her, she is a great match for my unique sense of humor which is hard to find. She would get a little bossy in the beginning, but she has the right roflol.

I don’t travel all the way to WFBH for Neurology. I was seeing one in Catawba County, Dr Robert Yapundich who had an excellent team. He and his partners sold out to Novant and I had troubles getting in to see him when needed. I talked to my PCP and she suggested Atrium Health in Lincoln County. I saw one once and then that one moved to a different location and now I see Dr. Romanowski who is also a good match for me. Dr. Romanowski is not only smart as a whip, he’s as honest as the day is long. A perfect match!

My diet is/was 90 grams of protein a day. I had to drink 3 bottles of Gatorade (The $1.00 size) each day and drink as much water. This is after any anesthesia procedure now. I usually drink 4-6 big Tervis cups of water per day and still try to get in around 40-60 grams of protein.

[suzyq32]

Thank you for your information. This is very helpful! I am still being seen in WS through the Novant team there…Love them all! I love your comments on all these posts! Thanks again!

[Melissa_C]

There will be more and more good days as time goes by!

[Moltroub]

Thanks so much suzyq32, it means a lot to me! I think it’s fantastic when we have a team of medical professionals we trust. Isn’t it amazing how the big medical groups are taking over the rural medical groups? I understand it on the financial level and I don’t blame them with the cost of operating a business. I have certainly learned that a Doctor’s Office Manager is worth their weight in gold!

[suzyq32]

I feel like I have been in so many medical facilities this year that I can sniff out the good ones as soon as I enter! I live in rural Davidson County just south of WS and our small town practices have been taken over by Novant or WF…Our local hospital is now a WFBH hospital! Grateful to have our medical folks though!

[Moltroub]

Mmm Lexington ‘que, Yadkin Wines…what more could a person ask for! Next time you’re in W/S try Finnegan’s Wake. There was a lady from England who always checked me in for my MRI’s. She said they were the only ones that made good fish and chips! They have outside seating it’s just a couple miles from WFBH, across the street from SweetTaters which is also good. For something reasonably priced and really good food, try Goody’s (I think that’s the name). They serve breakfast all day and baked potatoes I also treat myself to some loose tea at Angelina’s. There’s an Indian restaurant that is next to it. Dr. Artee (like Artee’s party) was running Neuro ICU last time I was coiled and she highly recommended it. I’d never had Indian food and I liked it a lot. We ordered way too much food. Good thing it wasn’t Summer yet

[Susan_Jane]

Hello
I am sorry to hear about your husband. I know it was a scary journey you both were on but you are on the other side now
It takes time to heal for the both of you. Your brain will tell your husband when it’s time to rest. It really does take time for the whole body to rest.
I remember when I woke up there was a letter from my brain telling me to rest.
The emotions we go thru can make any one tired. I’m sure in time life will get back to your normals. Luckily you have each to lean on and he was reasonably young. Time is on your side.take each day one more step further and you’ll be amazed how far he’s come in such a short time. I remember a old saying air is not meant to touch our brains. That’s why it’s so protected. Your husband will get there and you’ll see looking back how strong you both are. Strong community of support here. Lots of love and prayers.
Sue
I

[HHG]

Thank you Susan, much appreciated!

[Chestnutsmom]

Hi,
Glad he is recovering well. I had my anereusm clipped 6 weeks ago. A craniotomy was performed. I also get so frustrated that I get exhausted by 2pm. I’m taking iron, magnesium, and 2.5 amalodipene for blood pressure.
I really want to be my former self, and when I get so tired I get angry. My poor husband …
This forum helps so much. The fatigue seems to be common.
I am trying to be sure to eat protein every 3 hrs. And constantly drink water. It seems to be helping.
I have to have a coiling soon so it looks like I will be doing this a bit longer.
Hang in there. Your husband doesn’t want to be frustrated…it just happens. Things will get better for all of us.

[HHG]

Quick update. My husband had the MRI, and general follow up last week. We did meet with the doctor, who performed both endovascular procedures, last Thursday.
Things are looking stable (!!!), and the doctor is happy with what he saw on the MRI. Due to the complexity of the aneurysm, my husband will be closely watched. The next MRI will be in 3 months time. We are happy with that, and we might might just take a deep breath and relax a little bit. Back to driving, exercising, working as long as my husband feels up to it.
My husband has had more good days than bad ones. The occasional bad night due to anxiety and an underlying uneasy feeling. No headaches, or other physical symptoms thankfully. This is truly the worst type of roller coaster ride!
Anyway, let’s hope for a continued positive recovery journey. Thanking you all for your support. Heidi

[Moltroub]

What great news Heidi! I’m doing a Happy Dance for both of you. Thank you so much for the update.