Hello, i joined this group after searching for success stories. I am 25 yr old and i have been diagnosed with cerebral aneurysm, i have so many of them on both left and right but more aggressive on my right side right next to the optic nerve. I haven’t set the date for my surgeries but its coming up sometime in April. I am wondering if i can hear from who have gone thru this procedure and share with me their encouraging stories. This is the only platform i’ve found for something like this.
My name is Rachel and my mom had a ruptured aneurysm and had to go through a clipping process. You’re very lucky that have been diagnosed before rupturing that’s for sure. She had her surgery in May, but did not wake up fully until August before the bleeding from her rupture. She got home in November and is now doing therapy 3 days a week for 3 hrs a day and she is absolutely killing it! She is 48 yrs old, so since you’re 25 that’s in your benefit for sure. Since you have 8 aneurysms how many clippings will they have to do? Also, how reputable is the hospital you will be having the surgery at?
Hi Rachel, Thank you for your story. Im so so happy to hear about your mum’s progress that is so encouraging. I am so ill informed on how this surgery happens how it will affect me how many clippings, all these are things i dont have answers to. I also havent scheduled my surgery. The hospital is really reputable it is one of the very best in Dallas Texas and its a learning/teaching hospital too so that gives me so much hope. I am so grateful to have found this page it has so much information
I had posted this in May 8th 2016
I had 2 unruptured Annies, ACOM and A1. (Right side) I’ve had my share of surgeries and survived breast cancer with chemo and radiation, but this was different. Just different.
I went in for surgery 12/10/215 and came home the evening of 12/11. I really don’t know why my stay was so short but my sister and husband were there to take care of me and according to my husband I wasn’t staying. I pretty much slept the first week. Because they cut from the middle of my forehead to the base of my ear to include cutting through the nerves and muscles, the worst part for me was the pain in my teeth. I was later given Gabapentin which calmed things down.
12/26 I flew to Florida at the encouragement of my surgeon. I had booked my flight months in advance. I pushed myself to try to keep the depression away but it bit me in the butt anyway. It is not uncommon after surgery. Most important is to recognize it and talk to your doctor.
Here is my list of experiences and what I helped me.
Jaw Pain - chewing gum and Gabapentin
Teeth Pain - Gabapentin
Itchy scalp - Tar Shampoo
Metal taste - Zinc lozenges
Exhaustion - Sleep, sleep and more sleep
Short term Memory issues - write it down
I went back to work after 6 weeks. It was and still is exhausting at times but getting better everyday. Now I go into the office 2-3 days/week and work from home the other days. I don’t do a lot of lifting so I would definitely discuss with your doctor. As for driving, my neurosurgeon said once I was off the pain meds.
Hope this helps.
They will have you up and walking the same or next day. I was a bit out of it and can’t remember exactly which day it was.
I had clipping surgery on my ruptured aneurysm in December of 2016. Earlier in the year my aneurysm ruptured and I was in the NeuroICU for 3 weeks. The had initially repaired my aneurysm via coiling, but decided to do the clipping surgery a few months later.
I was 32 at the time of surgery and I am happy to report that it went very well! I was in the Neuro ICU the first night after surgery and spent one more night in the regular neuro unit. I went home the next morning which was about 48 hours after I arrived at the hospital. I had no problems walking, talking, or taking care of myself. Though I did have help at home from my significant other.
The most noticeable pain I had was my jaw. My incision was from my ear up to the center part on my forehead so the muscles were cut through. I had head pain (not headaches) of course, but the pain killers took care of that pretty well. The incision area was very itchy… and whenever I was awake I usually had an ice pack on my head which really helped. I took a couple ice packs home with me from the hospital and later ended up buying a longer lasting one to use (something I would recommend getting ahead of time). It was winter when I had my surgery and I actually used to go sit outside in the freezing weather because it felt nice on my scar. I took short walks pretty soon after surgery as well. They felt good, but I usually passed out after getting back home.
I was very tired… sleeping 10 - 12 hours a night and usually taking a nap mid day. About a month after surgery I took my first bath (showers only before that), and suffered a seizure when I got out of the water. I had 4 seizures on the way to the hospital where they cleared me (seizures are common after brain surgery and my neuro suspected the temperature change likely set it off). I had been on Keppra for 2 weeks after surgery, and I was put back on it once I suffered the seizure. I took it for another month or so and was able to stop.
About 8 weeks after surgery I took a cross country flight to visit some family. No problems there. I was out of work for a total of 10 weeks. When I returned to work I started with half days for two weeks then went to full time. I could have returned sooner, but my employer was super lenient and wanted me to take as much time off as I needed. I still slept long nights, usually 10 hours minimum. Only recently, 1.5 years later, have I started to sleep a more regular 8 hours without naps.
I do feel lucky for how well everything has gone for me. I have no mental or physical disabilities as a result. In fact I exercise now more than I ever have before… I am working my way towards becoming the healthiest I have ever been!
Thank you for sharing. Did you say seizures? WOW i havent seen that anywhere. Thats so scary. You were lucky to have 10 weeks off to recover, unfortunately i dont have that luxury. I am having 2 brain surgeries, and hope to recover in 4 weeks. I need all the prayers i can get. Its so good to hear things have stabilized and normalized for you. All the best
I have never heard of 8 aneurysms discovered all at once! What a brave woman you must be! You have probably done your homework in order to feel confident with your surgery team. Most of all, please let us know when the date comes and so we may pray for your intensively. My son went fasting for two days before and on my surgery date. I thank God for an undeserving mother’s gift from her son!
You are very young. That is the greatest weapon (gift) you will have for the surgery. Remember that! Be positive and more positive! (let your doctors deal with the negatives… they are trained for them.)
Things to prepare for the surgery:
- A little stuff animal (they’ll tag it side by side). I brought in my minature Golden retriever stuff animal. Nurses gave it my med ID sticker.
- Totally yield to your dearest helper next to your bed. For me, my sister is the 24 on-call nurse. She knows when/how/what/why of the ‘look in my eyes’.
- Ask doctors if you may bring your normal remedies - constipation, vitamins, etc.
- Exercise, exercise, and more exercise… to speed up the circulations of your blood. I took the advice from a brave woman who went through the same thing.
- (long?) Ice packs, depending on the shape/length of your incisions. I found out that a hooded thin dawn jacket helped to stage my ice pack in place. Otherwise, it’ll shift off the location.
- Get soft/hard/mixture of pillows. It might take you many trials to find the ‘best’ spot for a good night of sleep.
- I use a handheld bidet (bought from Amazon) to clean myself while staying in a hotel after the surgery. I have to travel all the way to Arizona for my craniotomy. Since I don’t have any access to a bidet, I have to use a portable one. It’s easy to install and uninstall. It’s a lifesaver!
- I ate puree after the surgery until my jaw pain was manageable. (My incision was on the left-hand side cutting my jaw muscle all the way down to my left ear.) Doctors said not to ‘exercise’ the muscles right after the surgery. When it hurt, go ease on it. Don’t try to strengthen it up by chewing large bites. It won’t speed up the healing. On the contrary, it will make the healing worse. No pain - good healing. Pain - no good.
- Rest… rest… and rest… even though you are required to work soon after. You still need to listen to your young body’s message. Your energy might be drained instantly. Prepare for that ‘zero’ gauge mentally. Your co-workers might support you better if you inform them ahead of time. I.e., you might be thinking you are ok, but the next second your brain will tell you that your reserved energy is drained to zero.
- Best luck to you. We’ll pray for you. Stay strong with all of your support group. We love you.
I had a clipping near my temple which caused my eye to look to the right. The doctor said they could try to fix it but it would involve surgery on both eyes. I said no thank you
Hi Skatwooki, I am 3 months out from surgery and doing great, working out like normal. I do still have a tight neck and some pain on my head where I believe the plates/ screws hold the skull back together.
I made some videos and posted on youtube a few weeks ago:
I didn’t remember all of my side effects and things I went through but it will show you how I’m back to normal after surgery.
Sincerely, Clare Mix (43 year old)
Hi! It’s so scary to here the diagnosis! They found mine on 11/2/17 and I freaked. I immediately went off work on FMLA as I became non-functional with anxiety. I have a very high stress job and at 61 my PCP keeps telling me it’s time to retire.
I had my surgery on January 24, 2018 and had a completely successful clipping of the Annie. I don’t remember the first two days in the hospital, but was sent home before I could swallow. I was told it’s normal and would feel better in a week. Two days after coming home, clear fluid began to POUR from my left nostril. The surgeon’s medical assistant diagnosed me with a cold over the phone and never passed the information along. I am 9+ weeks post surgery. My job laid me off two weeks after surgery. (Kind of them) My surgeon office has ignored my calls since 4 weeks after surgery whenThe PA told me it was a leak and it will fix itself. She never documented the encounter. (I had my daughter with me luckily) I have lost 20 pounds and still cannot eat solid food due to swelling in my throat, and have to crush my medications and put them in applesauce. My PCP finally called the surgeon who did “squeeze me in”, finally, last Tuesday. He diagnosed a persistent cerebral spinal fluid leak. Now, more testing. BUT I no longer have confidence in my surgeon, (and loath his staff) and will not even call them anymore as they don’t call me back anyway. He still has not requested preauthorization for the Pledget test to confirm. MOST IMPORTANT, IF YOUR DOCTOR DOESN’T COMMUNICATE, CHANGE SURGEONS!! You have to trust them!!! I live in a small town and without major expense of travel, I’m stuck. I also still have difficulty with my hearing in my left ear, fainting, numbness in my left hand, nausea and vomiting and horrible positional headaches. My life is NOT Okay, major depression has set in and I have regretted allowing this “incredible” neurosurgeon to cut me open. This is NOT your normal recovery, it is just my recovery. Once the test is completed, I will decide where to go from there. I will keep you in my prayers, just be sure your surgeon is willing to answer ALL of your questions with more than one word answers!!
You are absolutely right in what you recommend. I’ll keep you in my prayers for a full recovery. We were fortunate in that my wife had very good doctors who gave us thorough explanations, were proactive, and did not release her until everything was as it should be. I wish the same for you.
I HAD MY SURGERY!!! ( st least the first one ) and it went well here is the list of side effects;
- My left arm doesn’t work quite as well but I do believe they said something about temporary paralysis
- MY JAW HURTS like heck!!! I can’t yawn with so much pain I can’t really eat a burger
For now that’s about it. I want to continue reading everyone input
Also pray for me my second surgery is this week!!
hiiiiiiii oh im so glad to hear from you!!! and im so happy your surgery went well! im really in awe of your strenghts and i will keep thinking of you and sending you good thoughts! your second surgery will go good aswell, i believe in you! i also had mine btw, but i coiled it! also went well and im back home recovering… mainly im tired and have a head ache. it comes and goes now so at least i had some headache breaks i wish you all the best, stay in touch and let us know and i wish you a great recovery!! (also for your left arm!)
all the best, olivia
I also had a complication from surgery that developed about 2 weeks after I got home. I had traveled out of state for surgery. I live in CO and flew to Barrow’s in Phx for a “top doctor”. I developed meningeal irritation (blood leaked and got into my csf and irritated my meninges, I could barely walk). I went to my local emergency room and was transferred by ambulance an hour to our state’s neurosurgeon (not many in CO). We never heard back from our surgeon. I was diagnosed and released, the local surgeon said he couldn’t treat me because he was not my surgeon. I was released without treatment (steroids). We could not get Barrows to call us back. We left lots of messages. Everyday I lost the ability to walk more and more (luckily it wasn’t permanent). After 10 desperate days, I finally tried the portal (computer account). I GOT A CALL BACK. The doctor said he could not prescribe meds out of state. It made no sense as they tout treating people from all over the nation. A few days later, I talked to a secretary (calling in desperation) and she said they DO prescribe out of state. I tell ya, how can resident surgeons not know that? So I finally received my steroid and got better. Everytime after that, I used the portal to communicate and have received a call back within a couple of days. I also let them know that I didn’t receive call backs and maybe their messages weren’t being passed along.
I want you to know that you WILL get better. you are still in the early healing stages!!! I couldn’t hear out of one ear for a while and that is all better now. I also pain down one arm and that is gone. I would recommend going into your pcp and having her try to help you. My local doctor was great at setting up a pain medication plan as I didn’t understand how to best take my meds. PCPs work with cancer patients so they know good combos and time combos. Also send a clear consise message to your surgeon through the portal. That way it is tracked.
Thank you Claire! It has been a long and difficult almost 3 months. I finally got a Pledget Cisternogram done and it shows no current leak. Since the radiologist said he only reads one or two, at most, each year, I decided to send the test results to another specialist for a second opinion. Meanwhile, I talked with the ENT who placed the pledgets and he wants to do a barium swallow test as food and medication still get stuck in my throat. My PCP sent me to a neurologist who was concerned that when I had the LP for the cisternogram, they didn’t do pressure testing or test my fluids. Also was concerned I haven’t had a follow-up angiogram. Due to the severe headaches and fog brain, I am not allowed to drive for 30 days. I get lost in my hometown! So, I returned to my surgeons office and the PA was pleasant, and agreed that all of those tests should be done - covered her butt. BUT as of now, no follow—up appointments with them are scheduled, and no word on testing. I told the PA to contact the Neurologist to coordinate care. I also have a complex case manager from my insurance company following up on all of this. The Neurologist put me on Dexamethasone, it has helped some, but the headaches are a 9/10 by evening. Also, now I have severe Central sleep apnea to top it all off - I stop breathing 271 times a night on bi-pap. Coincidence? Who knows, but the surgeons PA was quick to dismiss it. She doesn’t “think” the surgeon was that close to the brain stem, even though the scar shows he was.
Again, thank you for sharing your experience. It gives me some hope. I too, have extreme difficulty taking my medications as I forget, even with an alarm on my phone. I am truly brain fogged!!
Couldn’t help but wondering if you have been ignored by Barrow’s residents? Oddly, I am experiencing the same attitude as well. It’s disappointing. I don’t have many complications, my only concern is the high altitude traveling/airplanes, high mountain traveling, etc. No one called me back anymore. Yet, I was encouraged to call them WHENEVER I have problems regarding the surgery.
Sorry for late reply, just saw this. Phone calls were never returned! I finally found that if I used my Barrow portal (online) account to send a message, my calls were always returned within 24 hours, or by Monday after a weekend. There is also an on-call doctor line and the receptionist will patch you through if they think it’s important (I had a reaction to my meds so he called me back in about 20 minutes). My dad found this # and I don’t have it anymore. Use the portal!! My guess is you will be ok for high altitutude/flights. I was cleared both before and after surgery for that.
PS, I wonder if the staff don’t pass the messages on from phone calls.
Two of my most recent calls were sent to voice mails. Those were never answered. I sort of giving up because I have questions on the possibilities of fluid leak since my left ear did have ‘water’ coming out twice in the past half year. The first time I wasn’t sure if it’s from the shower. But the second time was strange. It came out the next day (or two) after I took the shower. I had never seen that much water coming out. Then, I didn’t have any excessive headache (just the normal headache), therefore, I thought better to report this to my surgeon in case there might be a leak which I needed to take care of it. No return calls from the residents this time. I will write to them on the portal from now on. Maybe the website people/managers are better in forwarding the messages I think. It’s a mercy if they do return my calls. And, I don’t think my complications are serious (hopefully?) compared to yours. Maybe that was part of the reason they didn’t call me back? I really respect Dr. Lawton. He is the only reason why I chose Barrow for treatment. Otherwise, I’d go to UCSF for the surgery. Somehow, the ICU and the staffs were not on the same page as Dr. Lawton. I do with he can change things around.
I completely agree. I will try to figure out private messaging and private message you.