Brain Aneurysm Global Insight

As I had mentioned before, recovery following treatment of a ruptured brain aneurysm is a lifetime process. Based on my own experience, I think the recovery process mimics the stages of grief in the Kubler-Ross Grief Cycle .

1. Denial

From the moment I regained my consciousness while in the ICU unit and had to face the facts, I went right into denial. This could not be happening to me, I thought. I convinced myself that it was only a dream and I would soon wake up from it. The last thing that I remembered was going to bed in our house in Kampala on a Friday night and I was feeling alright. How could I have woken up on a Wednesday morning in a Hospital bed in South Africa? Then when the physiotherapy tried to help me initially with ambulation, I thought that I did not need her help but the reality was different.

2. Anger

This stage lasted for quite some time and I must admit that I haven’t fully recovered from it. I have spent a lot of days questioning myself and God for why it had to be me. 5 months prior to that I was back in the US to have my second child when I ended up having her at 35weeks due to elevated blood pressure. I witnessed God’s miracle during that childbirth. We proved to science that God rules over everything.

When we returned to Uganda, we had just stabilized ourselves and ready to make the very best of our stay when things turned upside down overnight. I was angry for not having a chance to say goodbye to our staff and friends. I wanted to find out who did this to me and why. I was angry that because of me, my husband’s job, my son’s school, and our staff’s jobs had been impacted forever.

3. Bargaining

I slowly transitioned into the bargaining stage. I started to avoid talking to people and just begged God to take me instead. I was blaming myself for having turned my family’s life into a completely different direction. This feeling became more intense when I heard my son talk about all the things that he missed while in Kampala especially his school, the chickens, and the staff. My husband wasn’t so thrilled about his new position and traffic in Dallas either.

However, I could not imagine my children living without a mother. They were too young and needed me. So, I started to bargain with God just to give me enough time to raise my children to an age where they would be independent. I knew my husband needed me as well.

4. Depression

This stage was brief for me. My children, my husband, and my family members had given me a good reason to live. Their love and care renewed my hope for the future. I had refused to have my other aneurysm that is still intact to be monitored, but I decided to keep up with it.

5. Acceptance

Finally, I learnt to accept that God chose me for a reason and I decided to start looking at my life in a completely different angle. I had to move on. I had to find things that make me happy and do them. I started living by a check box rather than spend an eternity in the planning face. I spend more time in the implementation phase now because I want to check all of my boxes. Above all, I have learnt to rely not only on my own understanding but from the Almighty God who is responsible for all of us and whose powers surpasses all human comprehension.

https://www.cbsnews.com/news/brain-trauma-suffered-by-u-s-diplomats-abroad-could-be-work-of-hostile-foreign-government-60-minutes/

Philippians 4:6-7 New International Version (NIV)
 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Recovery time following brain aneurysm treatment varies from person to person based on several factors such as age, overall health condition prior to the aneurysm, the severity of the aneurysm, type of treatment that was used, any other health changes that occurred following the aneurysm and the emotional and social support that one receives. Of course, there is more to be added to the list. From a personal standpoint, I think recovery is a lifetime process. I had to deal with so many changes such as physical, social and emotional, memory, challenges with returning to work and continuing education. When you hear people say that “I had to learn how to walk” it is very true. I went through that process. I never thought that 1 week of being bedridden could take away my ability to walk independently but …I guess I was wrong. I took it one day at a time as I learnt how to walk and be able to perform other activities of daily living on my own with the help and dedication of the physiotherapist. My healthcare team was amazed by the rate at which I was recovering as I moved from ICU to High Care then regular ward. The long road to recovery was expected to take between 2-6weeks of hospital stay and additional 4weeks to 6months of a combination of rehab and at-home recovery. However, I ended up staying in the hospital for about 2 weeks, did in-home physiotherapy for 2 weeks and I completed the rest of the recovery on my own and with the support of my family. Well, part of the reason why I was able to go through the process faster was due to my active lifestyle prior to the aneurysm. That is why I would encourage people to maintain a healthy exercise routine. I have always done Zumba and I continue to do it. Recently, I added tai chi just because it helps to improve my memory sharpness and reduce the headaches.

Recovery is a continuing process for me. I have had to make changes with my lifestyle that benefits my overall health. In order to help reduce stress-related headaches and anxiety, I have had to cut off or reduce communication with some people including friends and family. Some people just luck the ability to be compassionate and sympathetic. These kind of people try to find ways to put the blame on you (…yes, I know, they exist) for suffering a sickness that you had no control over. Every conversation you have with them, leaves you with anxiety or a headache. Oh well, if I want to live a long life and be there for my family, I have to focus on myself and do what benefits me. Basically, it is about learning to let go and not allowing yourself to be a victim of every circumstance in your life.

Other things that I have had to do is trying to stay in the loop by educating myself on brain aneurysm and being involved in any kind of group, project or activity that keeps me talking about the condition. It is my wish to do more on spreading the awareness.

To stay positive and feel like I’m living my life to the fullest, I have had to change the approach on how I achieve my goals. I do not spend too much time in the thinking/planning process, I spend most of the time in the implementing process. In other words, I go by a check list.

Below is an article from the Brain Aneurysm Foundation that I found to be very informative on the recovery process following a brain aneurysm treatment. I hope you like it too. To make it more interesting, I will break it into 2 segments. The next segment will be included in my next article.

From Brain Aneurysm Foundation…

https://bafound.org/recovery/

Undergoing treatment for a brain aneurysm is a major life event that continues long after discharge from the hospital. Survivors face the potential for physical, emotional, and cognitive changes that can be minor or significant, short-term or long-lasting.

Recovery for patients who suffered a ruptured aneurysm tends to be longer and more difficult than it is for patients whose aneurysm did not rupture. Older people and those with chronic medical problems may also recover more slowly than younger, healthier individuals. Some patients may require rehabilitation. Others are able to care for themselves after a short period of recovery. As these examples demonstrate, each individual and situation is unique and recovery times will vary.

One of the most frequently asked questions by brain aneurysm survivors is, “How long until I get better?” Unfortunately, there is no way to predict how long it will take to improve, or even how much improvement will occur.

There will be a better chance for recovery if the survivor and the family maintain hope, even when facing a long recovery process. Rehabilitation pioneer George Prigatano, PhD, points out, “If the brain is alive, it can learn.” Remind yourself often of this: the brain can learn new skills for a lifetime.

Patients recovering from aneurysm treatment experience many changes and challenges. This section of the website will provide you and your caregivers with information about many of the most common changes, with suggestions for how to deal with them.

Click here to listen to a webinar on brain aneurysms and the recovery process in “The Care of Cerebral Aneurysms: What the patient needs to know for improved recovery” presented by Dr. Aaron Cohen-Gadol.

Physical Changes

After Your Treatment
You can expect some changes in the first few days and weeks following your treatment. Which of these you experience and how long they last depends on a number of factors, including whether your aneurysm had ruptured prior to treatment and the type of treatment (open or endovascularWithin the blood vessels/vascular system.) you had.

After Open Surgery
Issues after open surgery (clippingThe surgical method for treating an aneurysm. The surgeon exposes the aneurysm with a craniotomy and places a metal clip across the base of the aneurysm so that blood cannot enter it.) may include:

Incision Pain/Numbness
The pain usually occurs at the incision site. It may take several weeks for the incision to heal. After this time, you may experience brief episodes of sharp pain in the incision area as the nerves grow back. This is not cause for concern. The pain will go away with time. The incision area can also feel numb; this may or may not get better with time. It may be uncomfortable to sleep on the side with the incision, but it is safe to do so.

Hearing Loss
You may notice muffled hearing in the ear on the same side as the incision. This is due to fluid accumulation and will get better with time. However, it may take several weeks to notice improvement.

Jaw Pain
Jaw pain may occur when you open your mouth to eat or brush your teeth. This is due to manipulation of the muscles during surgery. The pain will improve over time. You may be able to speed up your recovery by opening and closing your mouth (about 10 times) at least four to five times a day, gradually increasing how wide you open it. Let your surgeon know if the pain persists after six weeks; in this case, physical therapy may be advised.

Clicking Noise in Head
This commonly occurs when you position your head in different ways. While alarming, there is no need to be concerned. This is the bone healing and a normal part of the recovery process. The clicking goes away after several weeks.

Seizures
Seizures may occur at the time of aneurysm rupture or sometimes as a result of surgery on certain parts of the brain. Your neurosurgeon may put you on an anti-seizure medication in the hospital. In certain cases your doctor will have you continue this medicine after you go home. If there are no further seizures, the medicine is usually continued for only a short time. If you are on anti-seizure medicine, it is important that you take the medicine as prescribed.

After Endovascular Treatment
Issues after endovascular treatment (also called embolizationA technique performed by a neuroradiologist or a neurosurgeon in the treatment of brain aneurysms or brain AVMs. As an extension of an angiogram, a catheter is passed up into the arteries inside the brain into the arteries supplying blood flow to the AVM or inside an aneurysm. The blood vessel or aneurysm is then blocked off from the inside with either glue, metal coils or other substances. This is often performed as a prelude to surgery in brain AVMs, but occasionally may be curative without additional therapy.) may include:

Groin Pain
There may be bruising and discomfort where the catheterA flexible tube for insertion into a vessel, body cavity, or duct; used for an angiogram of the brain arteries and in the endovascular treatment of brain aneurysms to provide access to the aneurysm site. was inserted in the groin. You should avoid strenuous activity and hot baths for one week after treatment. A hematoma (hard large blood clot) can develop at the site. Should this happen, or if there is increased pain or swelling in the area, contact the doctor who performed the procedure.

Hair Loss
Radiation or the contrast dye used during the procedure can occasionally result in hair loss. This usually only affects a small area and is temporary — the hair will grow back. Keep in mind that stress and medicines can also cause temporary hair loss.

Longer-Term Changes

Fatigue
Fatigue is the most common problem in the recovery process. You may feel tired all the time and have no energy or “get up and go.” Normal everyday activities, even simple ones such as taking a shower, may wear you out. You may take more naps, only to find that you have trouble sleeping at night.

This is normal. Keep in mind your body has been through a lot and needs rest before it can function well again. As time goes on, gradually increase your activities and the amount of time you spend doing them. It can take months before your activity level returns to where it was before your treatment. Try not to get discouraged, and take it one day at a time.

If you frequently have trouble sleeping, talk with your healthcare provider. Sometimes the short-term use of a sleeping medication may be helpful.

Also, have your family limit your visitors. Visitors mean well but can wear you out. If they want to help, suggest they prepare a meal or do shopping for you.

Diminished Sense of Smell and/or Taste
Survivors often report changes in their ability to taste and/or smell. If the aneurysm ruptured, smell and taste deficits can be caused by blood that irritates the nerves that control these senses. If the aneurysm did not rupture, smell and taste deficits can occur if the aneurysm compresses the surrounding nerves. Unfortunately, these deficits may not get better with time.

Headaches
Many patients experience headaches. Headaches are usually more of a problem for those whose aneurysm ruptured. The headaches can vary in intensity from day to day, and last for several weeks or longer. Please note that some aneurysm patients have a long history of headaches. These headaches will not be cured by treatment of the aneurysm, as they are not related. The headaches may seem to go away for a while but unfortunately usually return.

Headaches can be frightening, particularly if you had an aneurysm rupture. Keep in mind that the likelihood that a treated aneurysm will rupture is almost zero. Headaches due to aneurysm rupture are not only severe, but sudden. Call 911 in the rare case that a severe and sudden headache occurs.

In general, prescription pain medications may be needed for the first couple of weeks after your treatment. You should switch to over-the-counter pain medications, such as Tylenol, as soon as possible. If headaches are not eased by pain medications — or if the headaches continue even after several weeks — notify your doctor.

Vision Problems
Some people have specific problems with vision due to the location of the aneurysm. Others have problems with focusing or blurry vision as a result of subarachnoid hemorrhage. Problems with focus and blurred vision are common and tend to improve over time. If vision problems do not improve, contact your doctor. Consultation with a neuro-ophthalmologist might be helpful.

Low Back Pain
Some people experience low back pain and/or shooting pain down the back of the leg. If the aneurysm ruptured, your back pain may be caused by blood in your spinal fluid that is irritating the nerves. This will get better with time. Low back pain can also be due to lying in bed for many days and lack of activity. This type of back pain usually gets better as you increase your activity level, but may require physical therapy. Gentle stretching or a heating pad may help relieve the pain. Notify your healthcare provider if low back pain persists.

Constipation
Constipation is common and may be due to inactivity and/or a diet low in fiber or fluids. The major cause of constipation after aneurysm treatment is the use of narcotic medications. Constipation usually improves with increased activity and decreased use of pain medications. Stool softeners like Colace can be helpful, as are mild laxatives such as Metamucil. Avoid straining when having a bowel movement.

Slowed Reaction Times
In most people, reaction time is slower during recovery for at least some period of time. It is not safe to drive under these circumstances. Follow your doctor’s advice as to when you can resume driving. If you have memory/cognition, visual, or certain other physical problems, you should not attempt to drive. The Department of Motor Vehicles provides testing to determine whether/when you can return to driving.

Social and Emotional Changes

Some patients may experience some or all of the following social-emotional changes.

Loss of Emotional Control/Confusion
Most survivors experience temporary loss of control over emotions. This can manifest itself in anger, frustration, and lashing out at yourself and others. You may find that you get tearful for no reason at all. Confusion about what is happening to you is also common, so do not be reluctant to talk about it. These symptoms will get better with time. If it becomes too difficult to deal with, seek counseling.

Self-Esteem/Relationships
You may have changes in your self-esteem and self-confidence as a result of new physical and mental limitations. It is important to talk to your family, doctor, and therapist about how you feel and how to adjust to the “new” you.

You are not any less capable of leading a normal life. It is just going to require adjusting and giving yourself time to heal. You may notice changes in relationships with family and friends, so it is important to discuss your feelings with them. Many times these changes are temporary and as you recover, your relationships often return to normal.

Isolation
You may feel different, or isolated, as a result of the aneurysm treatment. But you are not alone. Attend Brain Aneurysm Support Group meetings or connect with others on the Brain Aneurysm Foundation’s online support community.

Depression and Anxiety
Depression and anxiety are very common among survivors, whether you suffered a ruptured aneurysm or were treated for an unruptured aneurysm. These may be caused by the aneurysm itself and also by the many life changes that may occur as a result of the aneurysm. But there is no need to suffer in silence.

Depression is not simply a passing blue mood or a sudden feeling of sadness that goes away as quickly as it came. It is an illness that affects your body, mood, and thoughts. Depression impacts your appetite and sleep, how you feel about yourself and others, and how you think about life. Treatment, which usually consists of a combination of medication and talk therapy, can help you deal with depression and feel better.

If you experience some of these symptoms below, it is important that you openly share your concerns and feelings with someone close to you, as well as a healthcare professional who understands your condition, such as a neuropsychiatrist or neuropsychologist, licensed psychologist, psychiatric nurse, licensed social worker, or counselor.

• Feelings of sadness on a daily basis; crying more than usual
• Guilt and regret about past events and current problems
• Anger, irritability
• Disturbing, morbid, or suicidal thoughts
• Lethargy/no motivation
• Loss of interest or pleasure in activities, including sex
• Altered appetite: weight loss or gain
• Disturbed sleep (early-morning awakening, disturbing dreams)