Brain Aneurysm Support Community

Ruptured Giant Brain Aneurysm - One year later

Hello. Glad to have found this group and would like to see if others experience the same issues I now have. I am 52 years old and approaching my one year “I’m alive” anniversary on October 22nd. I had a medically termed giant aneurysm rupture of the MCA artery which caused a bad hemorrhage and two strokes. I had no advance warning. Just a horrible headache and pain shooting up the back of my neck that came on very suddenly. I was taken to ER where I lost consciousness and stopped breathing. They intubated me because I wasn’t breathing on my own and did a CT scan of my brain. They saw that I had a ruptured aneurysm and bad bleed. The hospital didn’t have the necessary facility or doctors to treat me so I was to UC Davis. I had surgical clipping the following morning. A doctor told my family at first that I likely wouldn’t live and if I did I might not walk or talk or even know my family. Thankfully that didn’t happen and I’m happy to be alive. However, after one year I have not been able to return to work. I have a lot of short term memory problems, trouble with concentration and get very tired and emotional very easily. Have any of you had the same issues a year later and been unable to return to your job? Most people see me and physically I look okay, so they don’t realize that I’m not the same. I might forget a conversation I had with them by tomorrow.

Hi Kimvf,

I am also recommend finding a monthly support group of aneurysm and AVM survivors. The issues that you described are very common among survivors. So, it would be great to hear their coping strategies and that you are not alone. We have a monthly Aneurysm support group at UCSF (the first Thu of the month). There may be a support group UC Davis/Sacramento area. We have survivors from Sacramento who have attended. It is very helpful meeting fellow survivors in person.

Being a survivor is a mixed bag. I am grateful everyday that I survived and it could have been so much worse (my ruptured occurred by the brain stem). But I look completely fine on the outside and I am disabled in the inside (hearing loss/balance/vision). I am sure that you have the same feelings and issues. Hang in there. Lots of hills and valley but you will persevere

Thank you so much for the response. The trouble I’m having now is that I still have significant memory, concentration problems and issues with fatigue. My previous job was very fast paced, required a lot of multi-tasking and had a lot of responsibility as I was in a management position in a large company. I don’t feel I’m able to return to it. My state disability will end at the end of October. There is a long term disability plan provided by my employers where if sometime in the future if my issues improve, I might be able to take a lesser job within the same company. But after a year the company needs to fill my previous job. My neurosurgeon said he’s not qualified to determine if I can or can not return to my previous job. He said he’s trained to fix aneurysms and that’s what he did. My primary doctor does not seem interested in helping with the paperwork and when I first told him what had happened to me, he asked “who told you you had a stroke?” I have since provided him the records to show that I did, but if I ask him questions about whether or not certain things could have been caused by the stroke, he tells me to ask my neurosurgeon. Does anyone have any suggestions about what I should do? I don’t want to go back to my previous job and be set up to fail. I have two years until I can officially retire from it and draw my pension. But not sure what would happen if I tried to go back to work and then was terminated if I can’t perform my job duties. I had neuropsychological testing 3 months after the aneurysm which showed some impairment with memory, new learning, etc. I will be having another neuropsychological evaluation soon. Has anyone had this experience or have any suggestions?

Kimvf,

I understand your personal challenges very well as I experienced similar obstacles dealing with short term disability and reentry back to the work world. Like you, I managed large teams in Silicon Valley. After my rupture, I went back after 3 months. My manager was able to help me file for short term disability while I was hospitalized. After returning to work, my disabilities became apparent with multiple episodes of vertigo, hearing issues (tinnitus), and double vision. By the end, I could not even walk up the stairs because my balance worsen. I had to go back on short term disability. I am very familiar with the run around. While trying to file for my second disability, my Primary Care physician did not feel qualified to sign off, the Specialist that I was seeing treating chronic vertigo told me that it is not the policy of her office to sign off, and my Neuro-Surgeon (whom I respect) felt too removed from the diagnosis and treatment by the Specialist. I turned to the Neurologist assigned to the hospital as he was able to review both my hospital notes as well as notes from the Specialist. He signed off on my medical leave. Who was the Neurologist who treated you in the hospital? He would be in the position to review your MRI, and evidence of stroke. In my case, he signed off on both of my short term disabilities. I did not seek long term disability as my balance issues improved with some improvement to vertigo. Who signed off on the first short term disability?

Recovery is a long term process. Some folks improve immediately while others is a life long process. I recommend the following: request the complete records from the hospital including Neuro-Surgeon notes (it will tell the thickness of SAH, area impacted), MRI and CT scans (it would tell if you had infarct or not). You will need to coordinate between the Neuropsychologist and physician who signed off on your short term disability in order to get long term disability. (To set expectations, long term disability approval is much more stringent to short term disability.

You also need to strategize about subsequent procedural follow ups. Luckily, I had Cobra and had all tests completed (angiogram, audiograms, MRI) before Cobra ran out. Without insurance, angiograms are extremely expensive. Consult with your NeuroSurgeon on any follow up procedures.

By the way, by giant, how big was the aneurysm? In my case, it was a fusiform aneurysm 8mm x 10mm x 4mm. The bleed was relatively small at 2ml;however, it bleed into the 4th ventricle so it is considered Fisher 4.

Thank you so much for responding. I’m not aware of a regular neurologist seeing me in the hospital. I only know of the neurosurgeon and members of his team but I remember very little about it. The neurosurgeon said the term giant meant that the aneurysm was larger than an inch and a quarter and that it was a bad bleed. I’m not sure of the grading or thickness. It was the right middle cerebral artery. My last CT scan in March also noted encephalomalacia in the area of the bleed which the neurosurgeon said was the part of my brain that died after the bleed. The neurosurgeons office handled my disability paperwork for one year and that year is up the end of October. He said my primary doctor should handle going forward. I can see all of my test results and CT scan reports online regarding the ruptured aneurysm and subsequent bleed/stroke, but can’t see the doctors notes so it’s a good idea to request all of my records. I will do that. I went to see my primary doctor today to tell him what the neurosurgeon said about ongoing paperwork. My primary doctor said he is not qualified to say if I can do my job or not. He will not assist with any disability paperwork. Furthermore, I told him that I still had the memory and concentration issues, but if he couldn’t fill out disability paperwork, was there any way then that he could go ahead and release me back to work on a trial basis, to see if I can do the job or not even though I don’t believe I can. He said no, he will not release me back to work on a trial basis either. So here I sit. I don’t have a doctor that will say I cannot return to work OR one that will say I can return on a trial basis. I don’t know what to do. My husband is calling my employers leave management people to see if they have a doctor they can send me to that will make some kind of recommendation. Waiting to be scheduled for more neuropsychological testing so it is current. Thanks so much for your insight, it really helps to talk to someone who has been there.

Your aneurysm was definitely Giant. The surgeon’s notes which you can request from the hospital should include everything from the duration of the operation, the size, location and thickness of the bleed which grades the severity of SAH. It is unfortunate but Primary Care Physicians shy away from brain related issues. I assume that your Neurosurgeon’s office expected that PCP should be able to handle the disability paper work. Unfortunately, it did not happen. I would speak with NeuroSurgeon’s office that PCP will not support you and that you need an option to resolve this impasse. I personally believe that you best option is getting a referral from your Neurosurgeon’s office for a great Neurologist to address your cognitive/memory issues and willing to address your long term disability claims. It would be helpful if the Neurologist is closely tied to your Neurosurgeon’s office. He can answer questions whether area of brain where infarct is detected can lead to cognitive/memory issues.

After the short term disability ends, you are released to go back to work. But, in CA law, in the first 3 or 6 months, your position is protected. But, after that period, your position is not protected. My company contracted to a 3rd party company that handled my disability. I truly understand your frustration and stress. I went through the same disability approval nightmare which is difficult when you are disabled.

I will send you a private message if you are interested.

I went online and was able to request any and all records from UC Davis. Thanks so much for suggesting that. The records I can see online are not all of them. I told my neurosurgeon that my primary doctor was not willing to deal with disability issues because he says he’s not qualified. When I visited my primary doctor today he said the neurosurgeon should have handled it and that based on my last neuropsychological testing he would not even say that I could return to work on a trial basis. I asked him to refer me to a neurologist. I mentioned to my neurosurgeon that maybe I should see a neurologist and he said they are hard to get in to see in the time I have left on leave. My primary referred me to a neurologist but said their waiting list is months long. My company is also contracted with a 3rd party company to handle company medical leave matters. My husband is going to call them tomorrow to see what they suggest I do. My job is protected until my company leave ends in late October. From there, if I am able to go to a company doctor or some other doctor that will agree that I should be on my companies long term disability, my previous job will be filled with someone else, but if I get better and they find a position that I can do, then I might have that option down the road. So it’s either go back to work…which I can’t do because neither of my doctors will release me, or hope I can get on long term disability. Are you back to work full time now? If so…that’s great. I do miss working. Just don’t think I can really do the job now. Thanks so much for your help. It helps me a lot to know where to turn.