Patient & Caregiver Resources
PATIENTS/SURVIVORS
What To Expect After Treatment
Immediate issues and recovery time will vary depending on if your brain aneurysm ruptured or not prior to treatment. These are some of the most common:
Clipping
(Open brain surgery – Performed in an operating room)
- Incision site: It is common for pain and swelling to occur at the incision site. Numbness extending beyond the site is also common. Depending on the location of the incision site, some discoloration around the eyes (black eyes) can occur. Ice packs placed on areas of discomfort can help ease pain. Sleeping on your side may also be uncomfortable for some time and may cause new swelling. Try sleeping with an additional pillow to keep your head elevated.
- Jaw pain: Due to muscle manipulation during surgery, you may experience jaw pain when opening your mouth or chewing. This pain should decrease over time. Practicing gradual exercises and using Ice packs placed on the jaw can help.
- Headache: Even if your brain aneurysm has not ruptured, it is common for head pain to linger after a craniotomy. Pain should decrease over time.
- Itching Along Stitches: Areas around the stitches can cause itching.
- Constipation: The most common cause of constipation is narcotic medications which are used for pain management. Ask your doctor about transitioning to over the counter or non-narcotic pain options. Not all over the counter pain medications are indicated for aneurysm patients, so be sure to get your doctor’s approval. Stool softeners, proper hydration, activity, and healthy diet can also improve or eliminate constipation.
- Lower back pain (if ruptured): If your brain aneurysm ruptured, the blood may collect in your spinal fluid causing irritation of the nerves and pain in the back and down the back of the leg. This should decrease over time as you move more. Lower back pain may also be related to other conditions so always communicate with your doctor if you experience back pain.
- Fatigue: This is the most common problem in recovery for both ruptured and unruptured brain aneurysms. It is very important to listen to your body and rest when it tells you to rest. Your brain and body have been through a traumatic experience and your brain and skull need time to heal and for the thousands of neuro connections to relink. Ease back into activities following your doctor’s guidance.
Coiling/Flow Diverter/Pipeline
(Endovascular – Performed in radiology)
- Groin discomfort at site: There may be pain and discomfort at the puncture site. This is normal and should reduce in a few days. If there is an increase in pain, discoloration, or swelling, contact your doctor.
- Headache: Even if your brain aneurysm has not ruptured, you may experience head pain after an endovascular treatment. Pain should decrease over time.
- Fatigue: This is the most common problem in recovery for both ruptured and unruptured brain aneurysms. It is very important to listen to your body and rest when it tells you to rest. Your brain and body have been through a traumatic experience and your brain needs time to heal and for the thousands of neuro connections to relink. Ease back into activities following your doctor’s guidance.
- Lower back pain (if ruptured): If your brain aneurysm ruptured, the blood may will collect in your spinal fluid causing irritation of the nerves and pain in the back and down the back of the leg. This should decrease over time as you move more. Lower back pain may also be related to other conditions so always communicate with your doctor if you experience back pain.
Things I Wish Someone Had Told Me During My Brain Aneurysm Recovery
Clipping
Coiling/Stent
CAREGIVERS
Depending on the level of severity of your loved ones experiences and if it’s a ruptured brain aneurysm or not, some of their lingering issues after treatment may not be this extreme, but it’s important to know and understand what they may be experiencing.
- Your loved one is frustrated and scared. Please be patient.
- You may need to be more available to assist with simple, daily activities, such as driving them places (medical appointments, errands).
- If they are experiencing memory issues, you may need to be the one responsible for setting up reminders and scheduling appointments on a daily basis for a time.
- Patients may feel too proud or embarrassed to ask for help. You should DO and not wait for them to ask for help. Be aware that their physical capabilities may not be back to normal yet, and fatigue may keep them from doing more.
- Look for signs they may wish to harm themselves and seek help.
- You may have to make physical changes to living arrangements to accommodate possible physical disabilities.
- They may be out of work for a period of time
"Over time, patience allows life to fall in place as we get used to the new me."
Caregivers and Family Members also need support
Our monthly support group is not just for survivors. If you have a loved one you’re caring for or have lost a loved one to a brain aneurysm, we encourage you to join us.
Mental Health Services
Please don’t suffer in silence. If you or your loved one are struggling, there are many wonderful resources available both in Maine and nationally. The following resources have been highlighted at one or more of our Maine Brain Aneurysms Support Group meetings.
Liz Korabek-Emerson – Mindfullness teacher
Dr. Howard Kunin, PSYD – Neurobehavioral Services of New England
Dr. Mark Kiefner, PHD – Neuropsychologist
Dr. Gretchen Schoenfield, PHD – Clinical Neuropsychologist
Rehabilitation Services
Kate Beever, MA, MT-BC – Neurologic Music Therapy
Dr. Stephanie Chan, MD – Physical Medicine & Rehabilitation, Neuromuscular Medicine
Dr. Syed Kazmi, MD – Physical Medicine & Rehabilitation
Brina Kelly – Occupational Therapist
Laura Lorenz – PhotoVoice
Dr. Heather McClelland, PHD – Maine Neurobehavioral Services
Rehab Without Walls – Neuro rehabilitation
Dr. Thomas Savadove, MD – Physical Medicine & Rehabilitation, Neuromuscular Medicine
Neurosurgeons/Neuro Interventional Radiologists
Dr. Robert Ecker, MD – Neurosurgery Specialist in Maine
Dr. Paul Muscat, MD – Neurology
Dr. Matthew Sanborn, MD – Neurosurgeon in Maine
Dr. Susan Williams, MD – Neuroradiologist in Maine
Survivor Stories
Tom Broussard – Stroke survivor
Jason Crigler – Musician and brain hemorrhage survivor. Video
Heidi McCausland – Brain aneurysm survivor. Brain aneurysm blog.
Gia Patel – Brain aneurysm survivor. Beyond a Headache Video
Additional Resources
Aphasia Center of Maine – Helping people grow
Brain Injury Association – Maine Chapter
211 Maine|Service Directory & Assistance Programs – Maine
Making Headway Podcast – A podcast FOR brain injury survivors BY brain injury survivors
Michael Goulet Foundation – Love Your Brain
Honoring Survivors & Those Lost
Join us at our annual KAT-Walk & Karo-5k in Portland, Maine where our Honor Wall provides a place to honor survivors and those lost to brain aneurysms.
Disclaimer
The Maine Brain Aneurysm Awareness Committee (MBAAC) does not provide medical advice and does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific tests, products, procedures, treatments, services, opinions, health care providers or other information that may be contained on or available through this website or our social media.
NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY SEEKING MEDICAL TREATMENT BECAUSE OF SOMETHING YOU HAVE READ ON OR ACCESSED THROUGH THIS WEBSITE.
MBAAC’s website and social media contains information that is intended to educate patients and their caregivers about brain aneurysms. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. It is crucial that care and treatment decisions related to vascular malformations of the brain and any other medical condition be made in consultation with a doctor or other qualified medical professional. Articles that MBAAC utilize are not vetted by any medical professionals associated with MBAAC. We use our discretion to choose topics that may be of interest to members of our community.