When does the energy come back?

[Kmanstof]

Hi there everyone!
I shared my story in another post pre-op and now I want to share how it’s been 2 months post surgery. The following are sadly mostly things that happened to me post surgery and some things I’m dealing with now, but overall I want you all to know that surgery was a success and I’m incredibly grateful to have it done and feel very very positive about the future. I’ve overcome so so much and will keep overcoming!!

Surgery was a tremendous success my surgeon says! For a 2.5 mm aneurysm, I was on the fence having surgery, but I’m sure glad I did. When she went in, she found that my aneurysm was actually lifting up my optic nerve, so I eventually would have gone blind in my right eye regardless if I had surgery or not. Due to that, they had to maneuver around the nerve and cut bone near it in order to get to the aneurysm. I am now partially blind in my right eye…very unlikely it will come back. I will know after 6 months if it is permanent or not.

From the arterial line being removed, I ended up having 3 blood clots in my right arm and had nerve damage in my right hand, thumb/forefinger. I am not even joking you…the pain in my arm was HORRIFIC. The pain in my head was nothing compared to my arm.

That first week I was in the hospital and I kept saying my arm hurt, but they said it should go away. After being home for 2 days I was in so much pain that my mom took me to the ER. My arms were so swollen from alany IVs they couldn’t get a new IV in…they poked me probably 10 times before they could get it to work and refused to give me pain medication until the IV was in and the doctor had seen me. I have never been in so much pain in my life. It felt like every part of me was on fire. Eventually though they gave me a nice dose of delotted which took some of the pain away, but sadly not all. They found I had a blood clot and since I was just a week out of surgery they could not give me blood thinners so just sent me home telling me to use a heating pad on my arm.

Sadly two days later I was back in the ER with even worse pain. They found a second blood clot. It was horrible, but the doctor in the ER was in touch with my neurosurgeon and she said no blood thinners, so he was able to find a vascular surgeon who took on my case. I continued to see her in her office for bi weekly scans for the next two weeks. Managed the pain with Tylenol. She found the 3rd blood clot during on of the visits.

Luckily, since those first two weeks, the blood clots have cleared for the most part completely on their own! YES!! Pain is gone except some discomfort in my elbow sometimes. One blood clot remains, but it is opening, soore blood flow can go through.

I have been active since the beginning, starting with little walks around my living room, to walking in the driveway, to eventually walking in the neighborhood. I was walking .75 miles by the second week. Since then I have been building up slowly. I have gotten to 3.5 miles as the furthest I’ve gone! I also started at the gym with my trainer again just in the last two weeks. We are just working with bands on focusing on movement, not weight. It’s amazing to be active, I’ve found it helps SO much.

Some days are amazing and I have so much energy and then some days are so exhausting I can hardly move. Then there are days like today where I mentally force myself to do SOMETHING, but then give myself rest for the rest of the day. It’s crazy how up and down it is. I find that social interaction is great in short bouts, but if I do too much, I tire faster and it takes me longer to recover in the following days.

My neurosurgeon says I’m doing amazingly well, but I am feeling like my down days should be getting better. For instance, I had a friend visit for a long weekend this past weekend and we spent time in the car and seeing her family and our friends. She was here for 4 days. On Monday I couldn’t leave either my bed or the couch. I couldn’t do anything. Tuesday was barely better. Wednesday and Thursday I made myself leave the house and today is a bit better, but not by a lot. I’m concerned that what seems like “normal” activity is causing me so much exhaustion. I think my energy will be good this weekend concodering how I feel today, but those “down” days are rough.

How long does it take to have normal energy levels again? I know everyones recovery is different and I’m trying to give myself grace. It’s just hard when mentally I want to be more active and do things without worrying about pushing it too far.

Also, has anyone else experienced jaw pain and unable to open their mouths all the way? I knew going in that since they were going to cut the muscle to my jaw that goes through my forehead it would be sore and I wouldn’t be able to chew for a while, but I still have pain and can’t open my mouth wide after 2 months. Is this normal? Surgeon said it is…sigh, just want to be able to eat without making a mess again

(Sorry for the novel! )

[ModSupport]

Hey Kate,
Well at least the surgery is done, that’s the plus. The pain, ohh, that’s just something else. I thought I knew pain, but neurosurgery has taken my understanding to a whole new level. One I wouldn’t wish on anybody.

That question of ‘how long’, as I’ve said to many members, 'That’s a how long is a piece of string? type question. There are just too many variables. For your jaw pain/muscle pain 6-8weeks is often given as a guess-timation and for the muscle to heal, that’s about right. Now, for the nerves to settle and heal, that can take a bit longer and for some a LOT longer.

My recovery from a craniotomy was far from a straight line of progression. I had good days and bad days and I was on a bit of a seesaw of symptoms for months. Just when I thought ‘Ha, I got this thing beat. I can manage all of this…’ it would up and bash me into submission. I had to learn to read my own signs, read my own body. It would tell me ‘Laydown or I’ll put you down’, if I didn’t listen my symptoms would get worse and worse.

As for your energy levels and exhaustion, there is a theory known as ‘Spoon Theory’ here’s a link https://en.wikipedia.org/wiki/Spoon_theory

It may help explain ‘exhaustion management’ a bit better. In real basic terms spoons are equivalent to energy 'I have 10 spoons for the day, I use 5 spoons just getting up, showering and having breakfast. That leaves me only 5 spoons for the rest of the day and I haven’t even left the house yet.

In my humble opinion (and I’m not a Dr) that looks like it’s healed up really well. Neurosurgery is an assault on the whole body, not just the head and although the recovery can be slowly, slowly, look at it this way, at least your not going backwards or stuck making no progression. I think you need to be congratulating yourself for being this far along, not berating yourself for not being further along in your recovery. The slower you take your recover, the better the long term outcome. I tried to force my recovery, doing myself a greater injury, requiring further neurosurgery. My Advice: Don’t do that. I had to learn to be patient with myself and I hated it.

When you get hit by that exhaustion, acknowledge it, recognise it and learn to manage around it. If that means taking a break, do it. If that means a change in activity, do it. If that means a dark silent room/space, then do it. If that means medication, take it. You learn to do what you need to do to best manage for you. Other’s may have another opinion, but you have to manage this for you. Not them.

@Kmanstof

(Sorry for the novel! )

You obviously haven’t seen many of my posts. There are some epic tales in there So don’t be too worried about your ‘novel’. You’re doing fine.

Merl from the Modsupport Team

[Kmanstof]

Thank you so much for your response and advice. Hearing it from someone else really helps!

I’ve been thinking about extending my FMLA by a few weeks. I’m always that person who pushes through the pain and tries to say it’s not a big deal. I don’t want to do that with this and I don’t want to let my guilt over what I “should” do influence me when I know it might be the best thing for me on the long run. Your words help ease some of that guilt and help me realize that each day I truly do need to listen to my body and do what’s best for it. I’d love to hear more of your journey. If you don’t mind me asking, why did you need a second surgery?

[Moltroub]

Wow Kate! Your incision looks like it’s healing really well and for you to be walking 3.5 miles this soon is incredible, good for you! The blood clots sound painful and that sucks. Glad to read they’re dissolving, that’s a relief.

I’ve not had a craniotomy so can’t speak on that. I do concur with everything Merl has said, he’s pretty smart in those departments, and very experienced. What I can share is you absolutely need to listen to your body. When you first get it’s knock on the door that your getting tired, acknowledge it and rest a bit, hydrate, eat protein. This isn’t the time to push through the pain. When I tried that which was my habit pre rupture and often I fall back into it, it just makes everything worse. We do much, much better when we learn to listen to what our body needs and not ignore it. It’s kind of like when we get a dry mouth, we naturally get something to drink, we know that sign.

For me, I know I’ve over done it when I suddenly feel exhausted as I’ve ignored the tired bit or confusion starts to set in. First thing I do is drink water and get some protein. I can hydrate and get the protein from a container of a protein drink but I still drink water with it. Find the kind you like, my preference for the last few months has been the chocolate flavored Boost in the plastic container. Seems it shakes up better than the protein drink I used for a few years that would gross me out when I looked inside the cardboard.

Since you’re already thinking you need to use a bit more FMLA, I think that’s a sign your body is trying to tell you something. I’d listen to it and not ignore it. We’ve had some members who are able to work out returning part time to rebuild their strength and maybe that’s something you can also do when your body is ready.

Never apologize for how much you write! As you can tell by now Merl and myself write a lot as do others sometimes. You have questions or concerns you need answered, you want to share your journey and that’s all fine. In fact, better than fine, it’s how we learn here. So write away my young friend!

[ModSupport]

OHH THAT GUILT…OMG… THE WEIGHT OF IT CAN BE MASSIVE
And yes, that’s all in capitals for a reason. I had (and some days still have) a battle with the guilts something terrible and I haven’t been able to get back to work for almost 10yrs. I tried to gauge my recovery by the medicos (6-8weeks, then I measured it against other patients (they could recover, why can’t I?). As I say I pushed my recovery, to recover ‘quicker’ HINT: You can’t recover quicker than your own body allows. I tried but there was always a price to pay, usually in pain and exhaustion.

I know for me I ‘can’ push myself to get a task done BUT if I push myself today, Ive got to be prepared to be laid up in a dark, silent room for possibly the next day or 2. I’ve learnt it easier to break a task up into steps. Start step 1, complete it, then check ‘Am I OK?’ if so I start the next step. I’ve learnt I need to be satisfied with the steps I have completed today, rather then looking at the task as a whole task (which I may not have fully done). I find it helps with accepting that I’ve done what was within my ability on that day. And if I can accept that, it’s been a good day.

Look we all have good days and bad days, but when it comes to self assessment you need to be looking at the bad days. Returning to a normal routine/environment ie work, adds stresses. If you add work stress to a bad day ask yourself ‘Could I cope/manage?’ If the honest answer is ‘No’, then that guilt is a waste of energy. You MUST look after you and only you will know in yourself, the honest answer. This is a time to be kind to yourself. Take the time your body needs and not just the time your mind expects. Believe me you’ll be thankful you do.

Merl from the Modsupport Team

[KrysG]

You should be patting yourself on the shoulders and being proud that you are even PLANNING to go back to work so soon. Be patient with yourself when you have down days and embrace the up days. If your employer will let you phase in, work with them. If you keep them informed, the return should be good. A few years ago I had a couple of team members with different health concerns. My agreement with them was to be at the office when they felt up to it and could be productive; inform me when they needed to be home. I also worked with them to let them do some work from home. Sometimes they could not work during the day, but were able (and desired) and awake at night, so I let them take work home and they worked on their schedule. Not all companies or type of work allow for this, but if you stay true to yourself and upfront with your boss, the return to work can hopefully be a smooth transition.