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.

[lynnH]

Thank you for sharing. I just found out I have a 6 mm ICA aneurysm. It showed up on an MRI taken for something else. I am getting a MRA tomorrow to find out more. I am new to all of this. Is there a reason you had surgery instead of a non surgical coil?

[Moltroub]

Morning Lynn! I think you’re asking Kate as this is her topic and your question seems to be directed straight for her. If you want someone in a topic to reply, the easiest way to get their attention is to hit the reply with their specific post, otherwise you could do @Kmanstof in this case….you just start with the “@“ sign and the list of members who are in the thread pop up. They get an email that alerts them you have responded How’s that for simple?

[Kmanstof]

Thanks @Moltroub !!

@lynnH welcome to the community!! As unfortunate the circumstances are, I hope you find some comfort in knowing you have a support group and a place you can ask any questions you want or need to. I have spent hours just reading through topics and other people’s stories to try and understand my own journey more.

I went with the surgery instead of coil because of where my aneurysm was located, the shape of my aneurysm and also due to my age.

As my surgeon explained it, coils, although good, wouldn’t have have worked as well for me because of the shape. I had a broad neck aneurysm, meaning the base was wider than it was long. If a could had been placed it most likely would have fallen out. Due to this, they would have also required me to have a stent put in as well, which would have meant I would need to be in blood thinners for the rest of my life. For being so young, they did not want me to go through this. Also, coils aren’t guaranteed to last a lifetime. They should, but if they are there for decades, there’s a greater chance of needing follow up surgery’s.

I ultimately decided on surgery because of my age. 33 is young to have an aneurysm and with decades left on my life (hopefully), there was greater risk…would it grow in the future? Could it rupture during pregnancy? (If I did get pregnant, I’d be putting myself and the baby at risk and it would be considered a high risk pregnancy.) I wouldn’t be able to lift weights the way I do (heavy lifting) and getting upset or anything else that might raise my blood pressure would always be a risk. Right now I have the LEAST amount of risk I would have for the rest of my life. Plus, being younger, surgery and recovery would be easier to cope with.

I saw 6 doctors, 3 neurosurgeons and 3 intravascular surgeons. Half said so the surgery and half said don’t do the surgery. All the intravascular surgeons agreed treating my aneurysm would be possible, but not the best option.

Ultimately, the decision should be based on your conversations with your surgeon. If you have enough time and you don’t need surgery immediately, get second opinions, understand risks for each type of surgery and what will treat your specific aneurysm better. Understand the shape and location and don’t be scared to ask more questions about those items. Some doctors focus on it and others do not. Then after you’ve gathered all the information, sit with it and listen to what your gut tells you. Also, make sure your surgeon is compassionate to your needs - it just makes the whole process easier and less daunting.

Good luck and I hope this helps you in making your decision!!! I’d love to hear your story if you want to share. I spent months full of anxiety and debating what to do and being on here and sharing those anxieties helped. I hope you find some peace during the journey and know we’re all rooting for you!!

[lynnH]

Thank you so much for sharing this with me. I am 72 years old and also have been highly active teaching fitness and having a martial art school.
About 6 years ago I developed multiple lesions on my right check. After 2 biopsies tons of confused doctors and 16 laser treatments they thought it could be a vascular malformation. I had an MRI which showed no vascular issues but a 6mm ICA aneurysm on May 1st.

I am going today for an MRA to find out more. It really helped to hear your journey. I want to get a few opinions as you did. I tend to be uncomfortable asking questions and talking to several doctors. The situation with my face caused doctors to refer me to other doctors. This will be my choice to get other doctors opinions.
I am glad you are comfortable with your choice to get surgery. Hope you are able to achieve all your dreams. Coming from one who is in her last chapter…I am grateful I achieved most of mine.
Kind Regards
Lynn

[lynnH]

Thank you so much I have no clue what I am doing yet.

[Moltroub]

You’ll learn, no worries!

Thank you so much @Kmanstof, you’re the best!

[Kmanstof]

Hi @lynnH ! How did the MRA go? When do you find out the results?

Thank you for sharing! I hope the process with the doctors goes well. I took a notepad with me and wrote down ally questions so I didn’t forget anything and it helps facilitate the conversation.

All the best!!

[constance]

Hi I had a craniotomy I had a rupture in 1998. It took a while to get my energy back. I was on dilantin and that was really slowing any progress. Once I got off that my energy level soared. I do still have days when I have low energy, but for the most part my energy level is good for most of the day. If I have an extremely busy day I do tire myself out. Be patient with yourself. Good Luck,

Connie

[laura1]

Hi! Your scar looks like it’s healing great!

As for energy levels, I wonder that, too. I had mine rupture less than 2 years ago when I was 22. I still feel really tired a lot and have sleep issues where I am constantly waking up in the night, too. I wish us both luck in getting back to normal energy levels!

[lynnH]

Hello Kmanstof
Turned out I have an 8 mm aneurysm. I had a coiling done July 6th at Harborview in Washington state. They were not sure if I would need a coil, a coil with a stent or needed craniotomy. The neck was small enough to put just a coil in. They use the groin entry because my wrist did not work out. I am very petite.
The surgery went well. I am having issues with my recovery. I had a lot of anxiety going into the surgery. I was told so many different things through the process I got confused. The size changed, how serious it was changed. When additional imaging painted a clear picture my primary put in a referral for urgent surgery. The referrals went to the wrong places so I had to call many times and go through a lot of stress finding the correct referral number. Anxiety set in.
When the proper referral was found they got me in right away.
I have ADHD so I have struggled with panic attacks all my life. I have never had anxiety before and found it is very different and so much worse than short lived panic attacks.
I am almost a month out and am still dealing with anxiety. I have strange sensations in my body including traveling numbness. I don’t know if that is from the coiliing or from my anxiety. I go for imaging August 4th and hope it shows the healing is going well. If so I hope my anxiety level goes down. I hope these feelings were not due to issues with the coiling.
I am not understanding why my body feels like it gets unplugged when I don’t sit down often. I can go on a mile walk then have to come home and rest for a bit to go out and do my second mile. I can’t go very fast either. It takes me twice as long to walk a mile. I have to sit down after doing about 30 minutes of light house work. After resting I get up and finish. The first week I just walked inside, the second week I walked very slowly outside due to the headaches. The third week I was able to walk faster with no headache I have not progressed this week in fact regressed who knows why.
I thought an unruptured coiling had an easy recovery. Maybe it is for many people, I hope it is but mine has been very confusing.
I did get a great PTSD therapist who taught me about mindfullness. She has me put a mint in my mouth, fully focus on an object while also focusing on hearing a sound and focus on touching something. Using all your senses brings you back in the moment. It has helped me a lot.
So many words on a page lol. Being around people who have never been through this is tough they expect me to be my bubbly crazy little self and I am not that yet.

[SeeJ]

Hello, take the time you need. I’m eight years post surgery (have a clip) and there are still days I just have to rest. I’m not in pain but just have no energy left. I use those days to catch up my reading, return phone calls, watch tv, or just hang out. I’ve also tried taking up drawing and different crafts. It’s fun and goes alright.

I was off work twelve weeks after surgery then returned to three hours a day then adding a couple more hours each week until I built back up to full days. I worked another six years after surgery before retiring. I still try to stay very busy.

You will get there! I golf weekly most weeks, sometimes it’s just too hot. One of my side effects is I no longer have the ability to perspire so I also do a lot of indoor activities where the climate is controlled. I think you are doing great with your exercise! I still sometimes still have balance issues especially when tired. I just use a cane or hold on to whoever I am with and keep going.

Trust your instincts and visit this site when you need to find someone who understands. It’s been very helpful. Take care!

[Kmanstof]

@lynnH I’m so glad to hear the surgery went well!!

The tiredness is very normal and you should feel really good that you were able to do more than one walk in a day…or even a mile in a day!! It took me about 4 weeks before I could walk a full mile. Also it’s a great sign that your headaches are going away!!

Just remember…you had brain surgery! Even though it was introvascular, doesn’t make it anybless of a brain surgery! Give yourself grace a s time to heal. It sounds like you are doing everything right…staying active and working on your anxiety. I commend you for finding a therapist that is teaching you good skills. I feel like I need that!!

I’m sending you hugs!! You’ve done something super hard and it will take some time to feel normal again.

My surgery seems to have triggered something in my body…I feel so inflamed and all my joints hurt. I am going through so many doctors appointments to find the reason…I think it might be an autoimmune disorder. Keeping my fingers crossed I can find it and get treatment. I know the frustration you are feeling. This is so overwhelming, but still trying to listen to my body and be kind to myself.

All the best!!!

[constance]

It will happen. talk to your Doc about your meds. I take Keppra and I have more energy. Check your meds with your MD.

[DawnL]

In regards to your jaw pain absolutely I had a hard time opening my mouth is well the surgeon suggest I do mouth exercises open close open close open close do it every hour it’s been 6 months since my surgery and my jaw doesn’t hurt as bad. I just had an MRI done last week waiting for results today I know I don’t want another surgery this is been the hardest thing I’ve ever been thru, I understand your pain the lack of energy when I overdo it my head hurts so bad all I want to do is sleep. The day of my surgery back in February I said to God if I have a purpose I will make it through this if you’re ready for me that’s okay too well I’m still here so I still have a purpose not sure what that is yet but I’m sure he will let me know you take care and I totally understand what you’re going through.