I have made a HUGE improvement the past 2 weeks. The first 4 weeks were basically static in recovery with a couple ok days, then a day or 2 not so great. I am now off all medicines except aspirin which the doctor mandates. I have been exercising and ramping that up a little bit as well. I feel just about ready to start work again (I feel ready but i have a very active job walking dogs and don’t want to overdo it. )
My head still feels like it has a mud mask on and I still have a few weird pains every now and then but they aren’t bad.
I am still not clear on how much exercise is ok because the nurse said, “you can do everything except life heavy weights”, but the resident I talked to last week said I should only be doing light walking or stairs. ???
I am feeling pretty much normal except for small pains I can live with.
After a few years of my own health issues, I have a few good days after surgery hoping for this to be my last issue. Last weekend we had to take my husband to the ER. He was diagnosed with a brain demyelating disease (such as MS), but we don’t know what yet. If his symptoms had appeared a few weeks ago, I wouldn’t have been able to handle it emotionally.
My Neurologist and NeuroSurgeon mentioned to be that the minimum guidelines in returning back to work is 3 months after major brain surgery; however, as they mentioned, it really depends on each person’s recovery. In my case, I returned to work too early after my ruptured aneurym and realized how much much my new disabilities affected me. In hindsight, I would have taken more time off work. You had major brain surgery. I would start slow as the Resident mentions with very light exercise and gradually build your strength. Take notes how you feel. If your head still “feels like it has a mud mask and weird pains” means that you are still recovery. Light walking a for few blocks then gradually increase the duration. See how you feel. There are cognitive exercises that you can practice and see how you feel as well as how you handle yourself in high simulation environments like crowds, lights, and sound. Lastly, check to see if there are aneurym survivor (ruptured or unruptured) support groups in your area. If you sign up on Brain Aneurym/AVM Support Group by the Joe Niekro Foundation on FB, someone can give you a heads up if there is a support group in your area. You can hear other people’s stories. Hope the best for you.
Thank you that is very helpful.
I just passed 6 weeks (7 on Thursday in a few days) and have already planned to start walking dogs again next week. (I’m a pet sitter). I’m only going to have a few clients, but I hope I’m not going too fast. The doctor did not give me a timeline for going back to work.
I overdid it at the gym last week. I did my workout very slow and without much weight, but then I thought I just give a quick try and did a few jumps (speed skater where one acts like they are on ice). I only did that 2 rounds about 20 jumps, but my head started hurting a lot that night (not immediately) and I got a stabbing pain next to my eye that night too. Now my head feels like it did a few weeks ago. Also my neck is hurting/spasming more again. Did you get that?
I am flying to see my doctor this week so I hope he will give me more guidance. I haven’t had much guidance from them so I appreciate the info.
In my experience with survivors in my group, each of us have different deficits depending on the location of the aneurym. My ruptured occurred by the brainstem. Another fellow survivor had rupture near same location. We have similar issues with our senses but not exactly. This survivor has issues with taste, balance, irregular eye movements. I have issues with balance, hearing, irregular eye movements. In my survivor group, there are some who complain of migraines and short term memory after a ruptured or non ruptured aneurym in the occipital area. When you visit your physician, ask the office your complete medical records (CT, MRI, angiogram and NeuroSurgeon notes). It is something good to have. In my case, as I developed neurological deficits, it was helpful as I had to see numerous specialists to get diagnosis and treatment. Based on your blog, you sounds like you are still in recovery as you are still having migraines and your head feels in mud. So, give yourself time to recover and take it slow. BTW, if you have neck spasms, do not get chiropractic adjustment. I have 2 friends who suffered brain stem stroke from a dissected neck artery after an adjustment. My aneurym ruptured 3 days after an adjustment. I used to get neck spasm but it was from the aneurysm ironically. After it ruptured, it went away.
Good luck to you.
I saw the resident last week and brought up my memory issue. He said, if you continue to have it in 3-6 months, let us know. so I didn’t get any info. It is a little concerning as my annie was on the side of my brain, the area controlling movement. my memory seems to be getting worse and worse. I even took 2 pills one after the other last night (one was for my husband), and can’t remember basic things like which of my shoulders is hurting.
I’m only 3 weeks post surgery on an I ruptured MCA. My main issue is fatigue. Max steps daily at this stage is around 4000 which is really low for me. However It has been Christmas, new year, and i have had people around most days. So i think having too much conversations to follow etc is tiring me out more.
How much were others doing at this stage. I understand everyone’s different depending on so many factors. It’s just curiosity and a very rough guideline. I don’t see my surgeon again and the team for another 3 weeks.
We are very happy to hear that you have made a significant improvement, Clare!
I am so sorry to hear about your husband. How are you feeling about his diagnosis? Any further updates?
Fatigue seems to be the biggest effect we are left with and will go away over time. I am year out and this is still an issue for me when I am stressed out.
From research on the forum, our doctors give us all different recovery timelines. My surgeon told me this: 2 weeks, just start to feel better. 4 weeks: start to see big improvement. 6 weeks: full release for activity. I knew from others on this forum that was a very aggressive timeline.
My actual timeline: Up to day 14: very light walking would make me hot, nauseous, my head would feel pressure. Day 14: big setback, rushed to hospital (possible leak after surgery, doctors disagree). Through 2 months, light walks, stayed home in robe just recovering. Started back to gym around 2 months out. Would feel pressure on head with exertion, but this faded away over the months. Went hiking multiple times. Had to turn around on first hike 7 months post-surgery as I got light-headed and was at high altitude, remote area. Over the course of the past year I increased my exertion level very slowly, and that worked well. I am now 1 year post-surgery and am working out very hard. Doing tabatas, heavy weights. Fatigue is still an issue when I am stressed out. If I am under stress, I just feel like I don’t have energy and sort of feel “old” (I’m 43). My regular doctor said it takes the body 2-3 years to recover from a major surgery like this. PS, my regular doctor was great at making a medicine schedule for me, as my surgeons office wasn’t so clear about that.
I would say, don’t rush recovery. Many people on here went back to work early, then left work altogether. I still haven’t told all of my clients I’m back to work and that is working out well for me.
Thanks for checking in. It turns out the reading of the MRI was wrong for my husband. An MRI specialist said he was suffering from “migraine variants” and showed us a picture of plagues on an MS-brain. His plagues were definitely different, and not MS. So good news!!! It is just so weird my husband and i have the exact same symptoms, mine from brain surgery, his from ???
Thanks for your reply. Today is 24 days out from surgery. There is part of me that wants to do more and so I swept and mopped my floor this morning as my sister went out food shopping. I napped on the avo and have done very little since and today have some pain at the insision stronger then the dull pain I’ve been feeling. My muscles ache in my legs and I feel like I run a marathon. Lol! So lesson learnt. Don’t do so much. Did you ever do too much and find later you wish you hadn’t. ?
I’m 45 and have 2 adult children. My daughter lives with her partner and son, my son is 23 and has Autism.
My family have been over protective and I’ve only spent little of 24 hrs alone since the operation.
Though I fully appreciate their help having people here daily is really frustrating for me. I’d rather be able to slowly do bits and just rest when I want, eat when I want and watch tv or listen to music when I want.
But like this I feel a bit restricted to their timetable which doesn’t suit a recovering brain which wants something one minute and then in overloaded the next.
How long did you have family/ friends support. How did you deal with it?
It’s good to hear a more realistic time frame as the surgeon was saying I’d be back at work by 6 weeks but I certainly don’t see that at this point.
Especially after today.
Wow it’s been a tough journey for you and I’m glad to hear the good news for your husbands diagnosis. You need all the good new you can get.
We all do.
Prayers and thoughts to you.
I’m an A personality, so I tend to overdo things. So my family was constantly reminding me not to overdo it. This is the one time in life I didn’t (except for a couple of times). I was scared to go back to the hospital, so I really really took things slowly. Started with just walking around downtown a little. Sitting down in stores.
I think even mopping at week 3 would have been hard.
My mom and dad stayed for 2 weeks, then my dad flew home and my mom was here for about 4 weeks I think. Generally I just did what I wanted which was mostly just rest. I didn’t want to even read or watch tv, it was mostly just “getting through it” lying on the couch, getting ready in the afternoon, going out for a walk. So I was on my schedule which helped a lot. My husband had our dog (who was a puppy still) so he focused on her a lot. I told my husband’s family not to come over as I didn’t feel like I could just be sitting around, not showered, and in my robe with them.
Good luck, you sound like you are doing amazingly!!!
Ok, looking back at my Facebook, I see I had started to work out hard again at 4 months, and was getting pains on the side of my head (where skull was cut) and side of my face. Also rather than working out 4-5x/week, I have been working out every other day, or every third day, if that helps give you an idea of recovery time. So I think I was pretty normal by 4 months except for still wanting to sleep in late.
Thankfully i had mine clipped as an unruptured Annie, so didn’t have the extra issues to contend with. I am grateful to have been fortunate to have discovered it prior though the journey of knowing and waiting was difficult.
My family have been super supportive and so have my adult children. The mopping the other day was totally way to much and wont be doing that until i feel ready. I had pain near my Insision yesterday after having only mild pain for a week. So i knew i had done too much.
But i have been able to stand and cook small meals (twice) and went for a short walk up my street today which felt like an accomplishment. However do have a bit more of a headache no where near my Insision this afternoon. It’s so weird how the pain can travel anywhere n your head really. It’s so hard not to worry every time i get a strange sensation or pain. my faith in God has helped me tremendously . How did you get through all the different sensation and learning not to worry so much over them?
Thanks for letting me know that it was roughly 4 months before you went back to normal. The dr told me 6 weeks and ill be back at work, but im 3.5 weeks after surgery and 1.2 km walk made me rest for an hr. I just dont see it.
Plus my family has had some big personal issues that has been very stressful during this past week. I have had to put boundaries up and only want general information as anything to emotional brings pain to the insision immediately. Did you experience that?
That’s so lucky, me too (unruptured). I had about 4 months of research time before surgery because I was planning on delaying surgery as long as possible (I don’t trust doctors and was afraid I would wake paralyzed). Then I talked to the surgeon and he said, “no you shouldn’t wait, it can cause a stroke without even rupturing due to the size and location”. I hadn’t realized that was a possibility!! My single biggest stress was giving my clients a timeline of when I’d be back. Basically every single person on here said that the doctors don’t have a good understanding of how long it really takes us to recover. And I can see that. They don’t follow up to see if we are having pains, how things are going, etc… Anyhow, my doctors were just so confident in the “you are good to go at 6 weeks”, I even asked if I could do handstands and they said yes. The only thing I couldn’t do is hit my head. Also, I did write down all of my questions about pains I was having and asked them and they said the face pains are “referral pains”. So I just go with that. RE: Stress. So my body definitely feels stress now. What I mean is, before, I could be stressed, and then once the event passed, all was good. Now, stress makes me really tired. I saw a pain specialist therapist before surgery (I have nerve pains condition), and she literally gave me a prescription to avoid stress. She told me that I don’t even have to feel bad about trying to avoid news (I want to be an informed member of society, right!). I am just now starting to turn on the news on some days. But the fact is, it’s like a truck hit our body, and rewired our neurological systems temporarily. Our body just can’t handle stress right after such big trauma. So I am passing on my therapist prescription to you. You are allowed to avoid stress and not feel bad about it. Hope this helps!! ps, stress signals are in the same part of your brain as pain, so if you are under chronic stress, eventually it can lead to pain.
(((( big hug)))) thankyou so much. You actually just brought tears to my eyes… ((( happy tears)))
I will take your prescption to avoid stress, GLADLY!!!
Phew what a sigh of relief that is. Amazing isn’t it. I just want to recover well and go back to work ( I am actually a counsellor) my new job when i recover will be withfamilies with disabilities. -
My 23 yr old son has Autism, he is high functioning. I have a total new understanding of sensory isssues and memory issues that he struggles with on a daily basis and though i have always tried to limit stress around him, my family has never been that good at respecting that. But golly gosh will they be after this, as i now understand so much more.
Thankyou for your support. Means a lot. No one around me really understands me at the moment except this community.
Thanks Trekhard for inspiring my artwork.
Oh wow, that’s amazing!!!
May I share this on my FB?
Yes but let me post up a signed copy. It would just keep me owning it.
Glad you liked it. Ill post up later today the signed version.