Hi all,
Forgive me, this is my first post and I’m not totally sure this is the right location to place it.
I am a 29 year old female and experienced a ruptured brain aneurysm/SAH in November of 2022— I spent 17 days in the hospital on vasospasm watch after endovascular coiling and was then released. Thankfully, though recovery has and continues to be anything but linear, all in all I am feeling okay. The thought of connecting with others like me is thrilling as I’ve come to realize we are quite a small group.
What I’m wondering is if other people experience aches and pains, dull and sharp, particularly on the side where their coiling is? My aneurysm was right carotid— often pain will be behind my right eye, neck on the right side, right ear, etc. It can be manageable or downright irritating. I also experience pressure behind my nose at times, almost like sinus pressure but so…different. Hard to explain.
I have been told I’m still early on in my healing and that many would just be getting out of the hospital, so pain is to be expected. This is something I try to keep in mind.
One last thing. I am scheduled to have a flow diverter stent placed soon as my aneurysm has a wide neck. Any advice or stories on this if someone else has had a stent placed after a ruptured aneurysm would be so appreciated.
Thank you all in advance— I’m amazed at the resilience and strength of aneurysm/SAH survivors!
You did perfectly Karly, good job! I was privileged with the Doctors and Nurses and all the others that worked diligently to keep me alive for a 26 day stay in what I call “spa therapy - I didn’t even have to wipe my own…”. I guess I liked being poked with the needles and making the ultrasound and radiology folks work harder as I had vasospasms for 21 of those days. When I was released and sent home, I looked like someone took a baseball bat and had at it from the neck to my knees. Fortunately, they couldn’t go past the top of the knees because I had those doohickeys that fill up with air and release so I wouldn’t get blood clots. I forget what they’re called, someone here will know, I’m sure. I loved them, some folks despise them…The back of my body was good, probably because they had me laying on it . But weird pains and migraines were a norm for me until I finally learned to hydrate, eat protein and rest when needed. That was after a bunch of different meds the Neurologist tried, none of which my body liked.
For pains in the neck, sinus areas, try either a warm wash cloth or cool wash cloth. I had a lot of rules when I was released that to this date I have to follow, don’t blow your nose hard, my favorite - don’t sneeze too hard:crazy_face:, don’t strain when having a bowel movement. The ones I had to post on the refrigerator because we kept forgetting - migraine, stiff neck, nausea/vomiting go straight to Emergency Department. Hydrate, protein, rest, hydrate some more and repeat for headaches and odd feelings haven’t changed since I ruptured in November 2013. So know your rules…
My little bugger is apparently as tenacious and persistent, maybe obstinate as I am. It took four attempts to coral it, the last with a stent. When I had the NeuroForm Atlas Stent installed by Dr. Quintero-Wolfe, it was as different as night and day for me.
I think you’re way ahead of where I was back then, that’s really fantastic! Welcome!
@karly
Welcome to the group that no one would like to be a member of.
I’m a ruptured aneurysm survivor myself and I also had vasospasm that was resolved. I spent 12 days in the ICU. It ruptured on October 20, 2020 so I have recently celebrated my two year survival. I got a stent and additional coils six months after the rupture. You can read about my journey in my profile.
I was lucky to not having any headaches after the rupture, I remember that I was recommended to take Tylenol for a while. I was just very sensitive to bright light and sounds. But it didn’t last for long. I am also experiencing some sinus problems on my right side, the aneurysm was on my right internal carotid artery. As far as I know, my sinuses looks ok on my MRI so I don’t know if the aneurysm is the cause of that problem.
My humble opinion is if the doctors recommend a stent, do it. I actually think that this is a standard thing, they stop the bleeding with coils and then secure it with a stent. A stent cannot be used during the bleed as it requires a dual anti platelet medication prior to the surgery. I still remember the shock for my husband and me when we were told that I needed a second procedure as they couldn’t fully treat the broad neck aneurysm when it ruptured. I asked a lot of questions and when the neurosurgeon looked me in the eyes and said,” it’s a weak spot, and I cannot guarantee that it will not rupture again, and if it does, you will not survive”…………………
We went home, devastated, but I came to the conclusion that for me and my family, it was the best thing to do. So I faced my fears and went for the stent.
Long story short. Everything went fine and I am almost back to my normal self. It took me about one year to feel like I used to do. The emotional recovery was the longest.Every strange sensation in my body made me think “is this it?” I understand it was a part of my lingering PTSD .
My neurosurgeon told me at my two year follow up that everything looks good, the aneurysm is occluded and no longer a part of the main circulation, then he said; “I would like you to go out and live your life and celebrate the fact that you are alive. Welcome back in two years.”
That’s a success story.
You are still so early in your recovery so you will continue to improve and I believe that your youth is your superpower. I was lucky to recover and I am much older than you are, I could be your mother.
This group is so helpful for us, you will find a lot of stories from members with the same problem.
Good luck with everything and come back and chat with us when you need us.
Thanks so much for responding and sharing a bit of your journey. What a remarkable thing to endure 4 coilings. I hope you are well now!
Thank you for the advice. I’ve been paying attention to protein and fluid intake, and also watching calories to an extent as I’m not moving near as much as I was pre-rupture. It’s amazing how much eating well, particularly protein, can make a difference.
Recovery has been so interesting in that each day is truly something different. I’ve had days where I feel completely normal and others where I can hardly move from the couch. Thank goodness for this support system!
Thanks for sharing your experience— it is SO lovely to read of others who have been through this same thing. It sounds like your aneurysm was similar to mine, right carotid. My symptoms have been mild thus far and are almost entirely focused on the right side of my head/neck.
My doctors have also mentioned my youth being a huge component in my recovery. My neurosurgeon told me your state when arriving at the hospital can be a huge indicator in how things will go— somehow, when I arrived at the hospital after rupture, I was coherent, talking, even joking with the hospital staff while in tremendous pain and unable to turn my head at all.
Thank you for sharing your stent experience as well. It is such a relief to hear it was a success! Mine is scheduled for next week, and while I am a little nervous, I am ready. If all goes well, I will be off blood thinners by June, just in time to celebrate my first wedding anniversary with my husband!
@karly
This is what this forum is all about. We share our experience and listen to the healthcare professionals. I’m sure you will be fine, when it’s done it will be a huge relief. That’s correct that the healthcare professionals uses a scale to predict the outcome of the bleed. “ The Hunt-Hess Scale is a graded scale used to predict the rate of mortality based solely on the clinical features seen in a patient presenting with an aneurysmal subarachnoid hemorrhage.” Hunt-Hess Scale • LITFL • Medical Eponym Library
The other scale is called Fisher scale and it classifies the appearance of subarachnoid hemorrhage on CT. scan:fisher_scale [Operative Neurosurgery]
I was a Hunt and Hess 2, Fisher 4 and I’m still here, living my life.
You can search for more stories about stents in this forum, many of us have them. @Moltroub has some good advice to share before your procedure, perhaps she can post this for you . Like get your home in order, stock up on groceries, cook meals and put in your freezer, pay bills and other important things. Eat and hydrate. Take your time to rest and heal and don’t rush back into the world too soon after the surgery. If you need to take a nap, do it. I was also nervous about the surgery, but I kept thinking that this is what the neurosurgeon does for a living, removing blood clots, stopping brain bleeds and putting in stents. They know what they are doing.
What a wonderful feeling to celebrate your anniversary knowing that you are ok.
Best of luck to you.
Please let us know how it goes.
Yes ma’am, I call it getting my house and House in order, which means doing any housework/yard work I can handle so everything is covered when I get home and make sure I’m asking my Higher Power to watch over my Neurosurgeon and her team, etc… The only thing I could add @karly to what @oct20 listed is to make sure your will is updated. Many people don’t think of having a will, some think it’s not necessary, I know one couple who refuse to have a will made out and they have two children, I’m sure there are others out there.
For me and BH, a will was necessary. We had an elder attorney look over the old mirrored wills and apparently it was all wrong. On procedure #3 it was expected I would have a craniotomy. Having one was a very high risk for me in my neurosurgeon’s opinion and because of the location/type (left internal carotid bifurcation/multilobed) she wasn’t feeling comfortable about a complete success. Because of the members here, I knew what to expect and had my hair cut shorter so it wouldn’t look odd😂. We were en route to the hospital and right before we got to the turn off, the attorney called and said her paralegal had it at the Clerk of Court’s and it was stamped! We were covered! It was a great relief to me.
I don’t remember my Hunt and Hess score but the ED told BH I was alert and talking wouldn’t open my eyes. I don’t remember the ED and BH was ignored when telling the staff I talk in my sleep. I could have full coherent coherent conversations and not remember them😂. I had a Fischer Level III which is probably the culprit for my 21 days of vasospasms and a lot of brain damage. But here I am!
I hydrate a lot before a procedure and I have to remember to tell the RN that I have a lot of scar tissue so they know what to expect when they put the IV in. Sometimes they have to use the machine to find the right spot and usually use a butterfly. The before we do something special - usually a nice dinner. If BH gets off early the day before, we walk around Old Salem or a nice park and talk.
Your first anniversary! How wonderful and exciting! Congratulation! Be careful about eating the cake you may have saved from the wedding…
@karly
The neuro fatigue is real. If you do too much one day, you will pay for it the next day. You will gradually get better, but it takes a long time, longer than you might think. It’s not a common cold we are recovering from…….
I’m sure you will be better, listen to your body, when it tells you to rest and take a nap, just do it.
Welcome! We could be twins based on what you said about your aneurysm. Mine was different in that it was a blood blister aneurysm. I have three stents holding him back right now (I find it more amusing to give him the personality of some villain from one of the books I read being held back by some wall and gates).
As for your aches and pains, you hit it right down the baseline. I still have them here, only two months ahead of you with my rupture and healing process. Right now the new game we play is what is going to trigger a migraine. The sensitivities to light and sound have evolved overtime. It is going to be cliche but you have to be patient with this thing… your brain is a miracle worker but a complicated miracle worker and has a lot of work to do to get you back into fighting shape.
My little guy- named Stanley… from Will and Grace, you done ever really get to see him but he shapes Karen’s behavior, does bad things and goes to jail… etc… Tried to have some fun with it…
My eyes and ears get “tired” for lack of a better word, by the end of the day and I am unable to be around people or watch TV. I am working on balancing the right kind of glasses and ear plugs to improve my endurance. I used to be a social butterfly and now I am like my gramps getting in bed at 7:30 to try and read and enjoy the quiet and dark.
Most important thing is that we are all ALIVE. The rest is just part of You2.0 and the journey to be happy and have a new equilibrium.
I am home with a nasty migraine today, so I am going to get off the computer now but I could not help responding to someone fresh, like me, learning. I hope you continue to heal. LISTEN TO THE DOCTORS.
Jon, you nearly left me speechless when reading you appropriately named your aneurysm Stan. Not only could we be twins with our aneurysm journeys thus far, but I’m on season 4 of Will & Grace at this very moment! Stan has just gone to prison, Grace has just broken up with Nathan…wow. What a weird coincidence.
Thank you so much for responding. I agree, while this is an incredibly unfortunate thing to be recovering from, it is amazing to connect with someone who’s just as new to all of this as I am.
After reading your profile, I have to ask— it seems as if you were quite active before your rupture. Have you been able to resume any form of exercise since? I have managed one walk outdoors since my rupture. Seriously…just one. This is the most frustrating part for me as I am so used to walking my dog, pilates, weightlifting, etc. Curious as to how you’re coping! It’s been a learning experience personally to not equate “progress” with activity and instead begin equating it to healing.
It’s wonderful that you’re alive and getting better each day. I’m thrilled to have made your acquaintance. I have a stent procedure scheduled for next week— then I believe we really will be twins! Ha.
Slow and steady. I had a hard time walking for a while for a combination of reasons… lots of meds, fatigue, light and sound… anxiety about another rupture. At first I was, and I suspect you will be, on some high doses of blood pressure meds and blood thinners… that made standing its own adventure. I am still on many of them until my stents and Stan is fully secure. My particular brew of aneurysm is very fragile and the artery wall basically split as opposed to ballooning first… something to that effect.
I was very active… not jumping out of planes extreme… but for a 230lb wrestler looking guy, I loved to run, did functional fitness and HIIT, swim… adventure races. My friends here in DC joked about me being a rhino with good endurance. (Rhinos are just full figured unicorns… there is the Karen coming out). For now, just approaching 4 months after my rupture I am really still low key in terms of activity. I walk A LOT. I am on the treadmill walking, at inclines sometime. I have gotten brave enough to do some leisure rowing on the machine and some body weight exercises. Honestly I am 1/10 what I used to be, body lost a lot of muscle and my meds are hard to fight through. Just taking this slow, enjoying cooking and eating right and shaping myself with what I can do…
So funny that you are watching W&G! I love it, part of the normal rotation with my Golden Girls and Star Trek-when I can watch tv. The migraines get a vote lately.
always remember, we are alive! Im happy we connect!
It’s great to hear that you’re slowly able to get back into some activity Jon. You’ve left me hopeful that maybe I’ll be ready for some more consistent walking and body movement soon!
I do hope your migraines improve. I’ve been having some crazy ice pick headaches, I think they’re called. The most bizarre side effects ever have occurred after this rupture. Pain in ways and in parts of the head I never even knew one could experience!
Dont rush for anything, your body will heal… I am not far ahead of you and I am just getting to some of these things, and i have found pushing the envelope means a day of sleeping or unable to function. I am also very hopeful, everyday I am excited to be up -even if its just to lay in bed with another migraine or wait for another doctor appointment. Getting better is a holistic process, its not just closing the hole in my head … its the whole system of systems getting better.
The migraines are somewhat my fault and somewhat something I need to learn to live with… light and sounds are things that I took for granted at concerts or just watching TV and now it s conscious effort to make sure I am prepared.
Your headaches will subside, mine have really started to ease up on me. The meds help too… but I am hoping that I can get off this handful of morning and evening pills and onto something more herbal etc… I can tell when I am more than an hour from taking my meds as normal.
Oh! Something my doctors have been big on is routine, I have a pretty set in stone morning procedure with the animals that I live with (uff who is in charge really?). I have found that my body knowing when I will take the meds and my mind knowing the procedures for our day really helps. When we are out of sync or when the plans fall apart, especially if I am tired, man does it take mental and spiritual willpower to haul myself along and control my emotions. Never thought I would be younger than my son… sometimes my moods make me feel like I am 5 years old.
Welcome to the survivor’s club! I hope you’re getting lots of rest and some additional assistance from family & friends as you continue to heal.
You’ve had trauma to your brain, so those aches and odd pains will no doubt continue for some time. It takes time for the brain to heal and for all of those connections to reconnect. Perfectly normal, but PLEASE speak to your doctors if it gets any worse. Don’t rely on message boards and chats…we’ve been through it, but everyone is different.
Fatigue will also be very prevalent as others have said. Bending over was always a biggie for me. I learned to use my leg to catch the door of the dishwasher and also flip it bit back up with my leg to close it. Also had to kneel on the floor to empty out the dryer after doing laundry. You’ll lean how to adapt as you continue to heal. It will take awhile and it can get frustrating. REST and listen to your body and head. You’ll feel better if you listen, rest, and then start again.
If you’re able to read a lot, I started a blog when I had my rupture back in 2006 where I had 16 coils. And that one aneurysm continued to be a problem child. Just this past April I had a flow diverter deployed because the neck of my Annie was also wide and more blood was getting in to it. But I’m still here…as are many, many others who know what you’re going through. If you’re interested in reading my blog you’ll need to search for Heidis Brain Blog and go to The Day It Happened. The BAF wouldn’t let me post the link.…to go to the NEXT post, scroll down, and click the NEXT link.
It sounds to me that you’re doing very well. Don’t be too hard on yourself if you get tired easily and need to ask for some help to do certain things. It will get better!
I wish you continued healing and to share you story…it will help others who are also newly diagnosed or ruptured. Keep on living!
Welcome to the group Karly!!!
To answer your question yes I did experience some pain for about 6 months after coiling and stenting. I don’t know if it all in my head and I was freaking myself out more than I should’ve been. I made multiple ER visits that first year and they reassured me all is ok. I am 6 years post and my doctor said I graduated from angiograms and now only require MRA’s . I rarely ever get headaches anymore. We are survivors!!!
Welcome. Wish we were meeting somewhere else but you are in the company of a wonderful and helpful group. I ruptured and was in ICU for 4 weeks then sent to my first, of many, physical therapy sessions. I have pains that just seem unexplainable. I think the rupture caused me to listen to my body aches and pains more. I had no warning signs, at all, before the rupture. Today was a really bad day for some reason. My whole body was sore and hurt. I’m up almost 2 hours past my bedtime. Not sure what’s going on but tomorrow is another day and I will probably be back on track. Hope you start feeling better. I didn’t know a thing from the time the thunder roared until a month later. My other doctors all tell me that’s a blessing and I believe every one of them. I hope you have a quick recovery and feel better soon.
Thanks so much for sharing your blog, Heidi! What an experience you’ve been through. Your blog is a wonderful resource for others.
Fortunately, I’m getting a tremendous amount of help from family and my sweet husband— this has all been quite the whirlwind for everyone and I’m thankful to not be going through it alone.
My neurosurgeon has heard of every ache and pain I experience in detail at this point! Lol. I think this is such a great place to just have reassurance that you aren’t alone (for those pains that are on the lower level of the 1-10 scale)
Hi! That is wonderful to hear your headaches have subsided. I feel less and less alone in this each time I hear a new person’s story. I can relate to the overthinking of each pain and have already had my second ER visit (aside from the first one, which was rupture) all for them to tell me every scan is clear and the coils are doing what they should.
I am scheduled for a flow diversion stent this week to close off my coiled aneurysm’s wide neck. It’s nice to hear success stories! I so appreciate your reply and am glad you are well.
I sure hope you feel better soon. As new to this as I am, it is so hard to have those “hard” days after having many good days.
That is the perfect way to describe them— pains that feel unexplainable. I keep telling my loved ones that since my rupture, I’ve had pain in ways and in places of the head and neck that I didn’t even know was possible! Like you, I did not have any signs before my rupture either. It is amazing to me how our bodies can betray us and then heal us; albeit very, very slowly.
. But weird pains and migraines were a norm for me until I finally learned to hydrate, eat protein and rest when needed. That was after a bunch of different meds the Neurologist tried, none of which my body liked.
, don’t strain when having a bowel movement. The ones I had to post on the refrigerator because we kept forgetting - migraine, stiff neck, nausea/vomiting go straight to Emergency Department. Hydrate, protein, rest, hydrate some more and repeat for headaches and odd feelings haven’t changed since I ruptured in November 2013. So know your rules…