Friday, April 12, 2024

Life After Acoustic Neuroma Surgery

Acoustic Neuroma Survivor Resumes Life After Gamma Knife Stereotactic Radiosurgery

Life after an acoustic neuroma | Ohio State Medical Center

I woke up one morning and noticed I was having trouble hearing in my left ear. I also had a loud ringing in that ear. I made an appointment with a local ENT, who performed an MRI.

Thats how I was diagnosed with acoustic neuroma, a benign tumor in my left ear. Once this skull base tumor was discovered in April 2019, I decided to call MD Anderson to set up an appointment. My sister-in-law works at MD Anderson, and I knew that if I was going to tackle this aggressively, I needed the best team available.

I was quickly seen by neuro-otologist Dr. Paul Gidley and neurosurgeon Dr. Franco DeMonte, both of whom specialize in acoustic neuroma. They did an amazing job of explaining my options, what to expect and how to move forward. We first decided to watch and wait for six months. However, since the tumor continued to grow, after three months my care team decided it was time for surgery.

I had multiple visits with my doctors to go through how the surgery would work. I am a visual person, so they walked through each MRI with me to make sure I knew what they were going to do.

The benefits of Gamma Knife® surgery

On Sept. 24, 2019, Drs. Gidley and DeMonte performed the surgery. They discovered the tumor would be impossible to remove without excessively increasing my risk for hearing and facial paralysis.

My Gamma Knife radiosurgery

Life after my Gamma Knife radiosurgery

During Acoustic Neuroma Surgery

The kind of procedure we perform will be largely dependent on the type of tumor, its location and size, and your age and overall health. Our team of medical specialists, including a neurosurgeon, a neurotologist , and an anesthesiologist will work together to remove the acoustic neuroma. It is our mission to decrease your symptoms and improve your quality of life with minimal long-term impact to you.

Your doctors will choose an open surgery treatment approach known as a craniotomy.

What You Can Do

  • Write down any symptoms you’re experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
  • Make a list of all medications, vitamins or supplements that you’re taking.
  • Ask a family member or friend to join you, if possible. Sometimes it can be difficult to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
  • Write down questions to ask your doctor.

Preparing a list of questions will help you make the most of your time with your doctor. For acoustic neuroma, some basic questions to ask your doctor include:

  • What is likely causing my symptoms?
  • Are there any other possible causes for my symptoms?
  • What kinds of tests do I need?
  • What treatment options are available?
  • Which one do you recommend for me?
  • What is the likelihood of side effects from each treatment option?
  • What happens if I do nothing?
  • Are there any brochures or other printed material that I can take home with me? What websites do you recommend visiting?

In addition to the questions that you’ve prepared to ask your doctor, don’t hesitate to ask questions during your appointment.

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Preparing Mentally And Physically For Surgery

Craig had chosen his path, but he was still nervous about complications from surgery. The surgery for acoustic neuroma comes very close to the facial nerve. If that nerve is even partially injured, appearance can be altered or use of the facial muscles can be limited.

It was an unsettling time, he says. I joined a lot of Facebook groups of people who were presented with a similar situation to mine.

Craig also learned that the operation could affect his balance. He hired a personal trainer who would hopefully speed up the recovery process and get him back on his feet.

Symptoms Following Acoustic Neuroma Surgery

Pin on health

It is common to experience symptoms following surgery or radiation treatment. Most of the stronger, acute symptoms will reduce within the first few days following surgery. If the symptoms continue beyond this initial recovery period, then rehabilitation is required to further improve your symptoms.

The following are the most common symptoms following vestibular schwannoma radiation or surgery.

  • One-sided facial numbness, difficulty speaking and chewing
  • Intermittent swelling around the incision site
  • Numbness at the incision that can last for months

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Balance Issues Or Vertigo

Since the tumour usually arises from the vestibular nerve , unsteadiness or balance problems may be one of the earlier symptoms of the tumour’s growth. It is also very common for acoustic neuroma patients to experience balance issues before and after treatment. Some individuals experience vertigo and nausea which can be mild to severe, and may be noticeable only during certain activities, impacting their ability to work or drive. Balance retraining exercises can help.

The issues can be short term or long term, especially if the balance nerve has been compromised and needs time to heal. If the nerve became severed during surgery, the undamaged balance nerve on the other side of the head will eventually compensate for the damaged one. Vestibular therapy by a specifically trained physiotherapist can be effective for many individuals.

What Is Suboccipital Acoustic Neuroma Surgery

A craniotomy is any bony opening cut into the skull. The section of skull, called a bone flap, is removed to access the brain underneath. After the tumor is removed, the bone flap is placed back in its original position and secured with plates and screws.

An acoustic neuroma may be surgically removed by one of three different craniotomies: suboccipital, translabyrinthine, or middle fossa. The choice of a particular craniotomy depends on the tumor size, tumor position, and hearing status. The suboccipital craniotomy involves removing a portion of the occipital bone behind the ear to remove the tumor .

Figure 1.

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What Is Recovery Like From Brain Surgery

There are a few risks that come with surgery, including the possibility of facial paralysis and hearing loss, NORD says. Patients may also have headaches, eye problems, the inability to close their eyelid on the affected side, and double vision.

Recovery from the surgery varies by patient and the size of the tumor, says Garni Barkhoudarian, MD, a neurosurgeon at the John Wayne Cancer Institute and the Pacific Neuroscience Institute at Providence Saint Johns Health Center in Santa Monica, Calif. Usually, a patient will be in the hospital for a few nights and then we ask them to take it easy for two to three weeks, Dr. Barkhoudarian says. In most cases, patients will be back at work in four weeks after surgery, Dr. Lee says.

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While a patient is recovering, they may have dizziness and headaches but they usually get better after a few days, Dr. Barkhoudarian says.

Patients are encouraged to be up and moving during this time, Dr. Lee says. We want them to be active and definitely dont want them to be just sitting or lying in bed, he says.

Once a person has recovered, theyre usually monitored for a few years afterward with MRIs, Dr. Barkhoudarian says. If some of the tumor was left behind , a patient will need to be monitored for life.

In general, people can do really well after having this surgery and go back to their normal lives. Recovery can be very, very good, Dr. Lee says.

Can The Surgeon Preserve My Hearing

Accoustic Neuroma – 5 days after surgery!!!

Your surgeon monitors your hearing during surgery to increase the chances of hearing preservation.

People with large tumors that have seriously affected hearing have a lower chance of preserved hearing. About 50% of people who have small to medium tumors and good hearing before surgery will hear in that ear after surgery.

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What Should I Ask My Doctor

If you have an acoustic neuroma, consider asking your healthcare provider:

  • Do I need treatment for the acoustic neuroma?
  • What outcome can I expect if I have surgery?
  • What complications am I at risk for from treatment?
  • What is the chance Ill have hearing in my ear?
  • How likely is it that the acoustic neuroma will come back?
  • Am I higher risk for other types of tumors?
  • What are the risks and benefits of acoustic neuroma surgery?
  • Will I need rehabilitation after surgery?

A note from Cleveland Clinic

Acoustic neuromas are slow-growing, benign tumors that can cause hearing loss in one ear, dizziness and balance problems. Treatment options include observation , focused radiation therapy and surgery. Surgeons work carefully to preserve facial nerve function and hearing when possible. Rehabilitation after surgery can help you restore your balance, and hearing devices can help with hearing loss.

Treatments For Acoustic Neuromas

There are several different treatment options for an acoustic neuroma, depending on the size and position of your tumour, how fast it’s growing and your general health.

The main options are:

  • monitoring the tumour small tumours often just need to be monitored with regular MRI scans, and the treatments below are generally only recommended if scans show it’s getting bigger
  • brain surgery surgery to remove the tumour through a cut in the skull may be carried out under general anaesthetic if it’s large or getting bigger
  • stereotactic radiosurgery small tumours, or any pieces of a larger tumour that remain after surgery, may be treated with a precise beam of radiation to stop them getting any bigger

All these options carry some risks. For example, surgery and radiosurgery can sometimes cause facial numbness or an inability to move part of your face .

Speak to your specialist about the best option for you and what the benefits and risks are.

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What You Can Expect From Your Doctor

Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:

  • When did you first begin experiencing symptoms?
  • Have your symptoms been continuous or occasional?
  • How severe are your symptoms?
  • Do you have any family members with an acoustic neuroma?
  • At its current level, do you feel the hearing in the affected ear is useful to you in any way? For example, can you use that ear on the telephone, or does that ear help you tell where sound is coming from?
  • Do you have regular headaches currently or have you had them in the past?

©2022 Mayo Foundation for Medical Education and Research . All rights reserved.

The 100000 Genomes Project

Acoustic Neuroma brain tumors and Fatigue

If your doctor thinks there could be a genetic cause for your acoustic neuroma, you may be invited to take part in the 100,000 Genomes Project.

Your DNA will be studied to find out more about the cause of your condition.

The aim is to create a new personalised medicine service for the NHS. This should transform the way people are cared for.

Page last reviewed: 19 February 2019 Next review due: 19 February 2022

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What Happens Before Surgery

You will have an office visit with a neurosurgeon, otologic surgeon, and an audiologist before surgery. An audiologist will perform a hearing test and a presurgical assessment of cranial nerve function. During the office visit, the surgeon will explain the procedure, its risks and benefits, and answer any questions. Next, you will sign consent forms and complete paperwork to inform the surgeon about your medical history . Discuss all medications you are taking with your healthcare provider. Presurgical tests may need to be done several days before surgery. Consult your primary care physician about stopping certain medications and ensure you are cleared for surgery.

Continue taking the medications your surgeon recommends. Stop taking all non-steroidal anti-inflammatory medicines and blood thinners 7 days before surgery. Stop using nicotine and drinking alcohol 1 week before and 2 weeks after surgery to avoid bleeding and healing problems.

You may be asked to wash your skin and hair with Hibiclens or Dial soap before surgery. It kills bacteria and reduces surgical site infections.

Morning of surgery

Patients are admitted to the hospital the morning of surgery. The nurse will explain the preoperative process and discuss any questions you may have. An anesthesiologist will talk with you to explain the effects of anesthesia and its risks.

Outlook For Acoustic Neuromas

Large acoustic neuromas can be serious because they can sometimes cause a life-threatening build-up of fluid in the brain .

But it’s rare for them to reach this stage. Many grow very slowly or not at all, and those that grow more quickly can be treated before they become too big.

Even with treatment, symptoms such as hearing loss and tinnitus can persist and affect your ability to work, communicate and drive.

These problems may need additional treatment.

Read more about treating hearing loss and treating tinnitus.

An acoustic neuroma can occasionally return after treatment. This is thought to happen to around 1 in every 20 people who have had surgical removal.

You’ll probably continue having regular MRI scans after any treatment to check if the tumour is growing again or coming back.

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Can Acoustic Neuromas Be Prevented

You cannot prevent acoustic neuromas from developing. But you can reduce your risk of complications by paying attention to how you feel and function. If you notice any symptoms such as hearing loss, dizziness or ringing in your ears, dont dismiss your concerns.

Talk to your healthcare provider who can perform a full diagnosis and get to the bottom of your symptoms. The earlier an acoustic neuroma is detected, the better the chances for full tumor removal and hearing preservation.

What Are The Results

How long does recovery take after acoustic neuroma surgery?

Outcomes of surgery depend on the size and adherence of the tumor, the use of cranial nerve monitoring, and the skill of the surgical team. Removing the tumor will usually restore balance, facial function and sensation, eyelid function, and tear production. Hearing loss is usually permanent because the tumor is wrapped around the eighth cranial nerve .

The medical literature reports vary, but overall, facial movement is preserved in 90% and useful hearing is preserved in 20 to 50% of patients . Delayed hearing loss may occur after surgery in 30 to 50% of patients who had useful hearing immediately after surgery. Partial-removal techniques have higher rates of hearing and facial function preservation however, a recent long-term study revealed that subtotal resection had a three-fold higher rate of tumor regrowth and no long-term impact on facial nerve function or hearing . Tumor recurrence is less than 5% after total surgical removal.

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The Impact Of Depression In Health

Depression correlated inversely with both SF-36 and GBI, determined dissatisfaction, improved significantly after surgery and was the measure that had the largest impact on HRQoL. Importantly, the decreased HRQoL was paralleled by an unexpectedly high proportion of depressive patients in our study population already before surgery . This finding may reassure pervious notions that demanded support for these patients from a psychologist or psychiatrist . The level of distress is not necessarily associated with the extend of functional deficits , since depression can make coping with a symptom much more difficult and may explain some of the discrepancy between symptoms of impairment and the perceived handicap . Because new symptoms resulting from surgery will always be a source of disappointment for these patients , we might consider providing professional help even before surgery to improve the conditions for optimal postoperative recovery and functional restoration.

What Are The Symptoms Of An Acoustic Neuroma

There actually isnt a standard way that symptoms develop with an acoustic neuroma, NORD says. However, someone might initially have hearing loss that gets progressively worse in one earthat happens in about 90 percent of people with this tumor. Other symptoms include ringing in the ear , and issues with dizziness or balance.

In her initial Instagram post revealing her tumor on April 3, Stafford wrote: Within the last year, I began to notice things that I thought was just me getting older.. I would show my girls how to do a front roll or twirl in ballet class and immediately feel dizzy & off balance… Things that I had been doing my entire life were now, all of a sudden, difficult.

The symptoms happen from the tumor pressing against the eighth cranial nerve, disrupting its ability to send nerve signals to the brain, NORD says. However, if someone has a small tumor, they may not have any symptoms at all.

In some cases, an acoustic neuroma can become large enough to press against nearby cranial nerves. That can cause facial weakness or paralysis, facial numbness or tingling, and issues swallowing.

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Retrospective Evaluation Of The Benefit From Surgery

In contrast to the findings of the prospective HRQoL assessments in our study, patients reported predominantly a deterioration, when asked for a retrospective evaluation of the benefit from surgery via the GBI in accordance with the results of a recent study that examined QoL on average 7.7 years after VS resection . This may have different, mutually non-exclusive explanations. The GBI correlated with the self-reported facial nerve paresis and hearing loss and may therefore have captured different aspects of HRQoL that were missed by the SF-36. These generic questionnaires have also previously been shown to examine subtly different areas of function . Furthermore, these GBI findings relatively early after surgery may have reflected the initial postoperative decline reported in earlier work , before recovering again in the course of the following years .

Moreover, many patients feelin retrospectinsufficiently informed by the medical staff, which may reflect ineffective informed consent, unmet communication and information needs and/or patients memory distortions in the process of informed consent. More specifically, patients are likely to forget exact information that they have been told, even if understood at the time . Even if patients could remember exact information, they are likely to base decisions on independent gist representations. Clear communication of risks is a necessary precondition for accurate patient perceptions, but seems often not sufficient .

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