Huge Tumor

[Denise]

Ronan,
Sorry to hear about your father, I hope he is well, and that you and your family members are well also.  This is a good site to come to it was very helpful to me after my surgery and during my recovery. 

Take Care, and good luck!
Denise

[Jim Scott]

Hi, Ronan:

I apologize for somehow missing this thread when it was first posted, back in March.  However, let me add my belated welcome and also what I trust will be a few words of encouragement based on my experience.   

I was 63 years of age and in otherwise good health when my large AN (4.5 cm) was initially discovered via an MRI scan.  At the time, I was suffering with long-term unilateral hearing loss, dizziness, fatigue and loss of taste and appetite.  The excellent neurosurgeon I consulted advised 'debulking' the tumor, basically hollowing it out via microsurgery and cutting off it's blood supply, then after a three month 'rest period', having me undergo very specifically targeted radiation ('FSR') to destroy the remainder of the AN.  I agreed.  Nerve monitoring was employed during the surgery (3 weeks later) and I came out of the surgery with no nerve damage but a smaller acoustic neuroma.  Three months later, my neurosurgeon and a radiation oncologist, working together as a team, 'plotted' my radiation for the maximum effect with minimum side-effects.  Over the following five weeks, the daily (20 minute) radiation treatments I underwent were boring but effective and free of side effects.  Now, almost two years past my surgery, I'm pretty well recovered.  Life goes on at age 65. 

I assume that your father has had his AN surgery by now, so I can only hope that it was successful in every way.  The mortality rate for AN surgery is infinitesimal and shouldn't really be a concern.  Recovery from surgery can be rapid or lengthly, depending on a variety of factors, including the surgeons skill and experience with this kind of microsurgery as well as the patients health.   I hope your father's recovery is the former (rapid) and that this forum can be of some help to you both.

Again, the delay in my response to your original post was due to an oversight.  I apologize and sincerely hope that all is well with you and your father at this point.  Please let us know what the situation is today and how your father is doing.

Thanks, 

Jim

[Dana]

Hi,
As others have said, we are sorry to hear of your dad's diagnosis, but we're glad you found this support group.  Even though we're not there in Singapore with you, the internet allows us this truly wonderful group of sympathetic and researching ANers!

Both my mother and my husband had brain surgeries after age 65, my mother to clip aneurysms, my husband to remove a large benign brain tumor on the medula.  My best advice is probably unnecessary, but I will repeat it anyway:  Be AVID patient advocates for your dad.  Be at the hospital ALOT.  The more you're there, the more the staff does good work.  I don't say this cynically -- medical staff usually treat all patients well,  BUT it's just human nature that the more you're there, the more attention they pay to your dad's needs, and the more you can monitor what's going on. 

The other piece of advice is to try to create as healing an environment for your dad as possible when he's in the hospital.  By this I mean, make sure he gets normal sleep cycles, lights out or curtains shut.  The older we are, the more difficult it is for the body to recover.  All the help the body can get is best. 

You might have to be persistent.  I was always kind and courteous, but very persistent when I wanted something to happen.  I encourage you to be the same.

The only other little comment I add is to make sure you and your dad are aware that the radiation required after the tumor is debulked in NOT the radiation that is used for many other growths.  That is, it's NOT generalized and does not make your body feel sick.  It's either a one-day (GammaKnife) or a several-single-day (CyberKnife) procedure that is not that hard on the body.  I just wanted to make sure you were aware of that, so you know that after he's recovered from the microsurgery, he does NOT have to look forward to any discomfort.

Take care and let us know how things progress -- and please let your dad know that we're all thinking of him.
Dana

[Ronan]

Hi

Thank you everyone for your kind words and support. My dad went through the operation last Wednesday and it took 13 hours. Most of the tumor was removed. There were no complications during the operation. He regained conciousness the next day after sedation was stopped. For two days, he was awake and able to response to commands, such as close his fist, or raise his hands. We all though he was going to be alright.

On Saturday, he became unresponsive. A CT scan was done immediately and swelling was found to be worse than anticipated. More drugs were administered. On Sunday morning, the doctor decided to go ahead with a second operation to make the hole larger and to remove a small part of his cerebellium. The doctor assured us that the removal will not effect him, other than his balance. The decision was made and he went through another 5 hours of operation. The doctors came out saying that the operation was a success.

He was sedated until Monday because the surgeon wanted him to heal. A CT scan on Monday reviewed that the swelling has gone down a little. He was expected to wake up soon. On Wednesday, the doctors became worried because he was not showing any signs of regaining conciousness. On Wednesday night, he was sent for an MRI to determine the cause. This morning (Thursday) when we went back to the hospital, the doctor told us that the MRI did not show that there were any abnormalities (eg stroke or bleeding)  and the swelling has gone down a lot (though there was still swelling). The doctor just could not explain to us why he was not getting out of his unconciousness and he thinks the swelling is not the cause of his unconciouness. My dad had his thyroid totally removed in 2000. The doctor suspected that it might have something to do with that and will be getting the specialist to come and see him. He also said there is a chance it might be his sodium level.

The ICU doctor (not my dad's surgeon) told us separately that his brain stem could have been damaged during the operation and that he might not get out of it forever. I really do not know what to believe. It really hurts to have the doctor tell us in such a straight and uncaring manner (like if it happens, it happens).

We went into my dad's room and started shouting out for him to response. After a while, he was able to half open his eyes and was able to slightly move his mouth (he is still on the ventilator, though he is breathing on his own). The nurse also told us that she did notice that there were slight movements in his hands and legs. We have been going into his room and yelling at him since Tuesday, and so far we are getting only slight responses. We noticed that his heart beat and blood pressure does go up everytime we are shouting at him.

I am really at a lost. I had encouraged him to go through the operation and have gotten a really good and experience doctor to do the operation. He is one of the leading brain suregons in this region and have an excellent track record. It really pains me to see him in such a condition and my whole family have been really stretched to our limits emotionally.

I apologise to everyone out there wanting to read a successful AN story.

Ronan

[sgerrard]

Ronan,

I am very sorry to hear about your father. It sounds like he came through the first operation fairly well for two days, and then something else developed. It must be very difficult for you, I can't really imagine what it is like for you and your family.

What the ICU doctor said seems callous to me, and doesn't really mean much - almost anything is possible, so you can't put much stock in an off hand statement like that. I think ICU staff just see so many serious cases, they don't realize what they are saying sometimes.

I can only suggest that you stick with him and keep shouting, even a little bit of response must be helpful. Don't give up hope, he may overcome whatever it is that has happened. And don't be hard on yourself, you were right to encourage him to have the operation, a tumor of that size is a very serious matter.

Try to find the strength to see this thing through, there is always hope. I am sending you and your father all the best wishes I can.

Steve

[ppearl214]

Ronan, I send many many healing huggles and wishes for wellness. I'm sorry to hear your dad is enduring this and ask that you pls keep us updated. Please remember to take care of yourself as well ...... you need to be well and strong for your dad.

Prayers and wishes,
Phyl

[Tamara]

Ronan,
 
  I went to a course once in helping those in a coma.  They suggested the following:
  In order to rouse your dad, try to involve all the senses, not just hearing.  Touch his face and hands in different ways - light, firm, deep pressure, rub his arms with a towel, put smelling salts and other strong scents under his nose.  Shine a flashlight at his eyes - even with the eyelids closed, he will see the light.  Move it around.  Shouting at him is fine, but then vary it with his favorite music played loudly, or in his good ear.  At the course, they even suggested an air horn, but I don't know if you want to go that far.

Best wishes
Tamara

[HeadCase2]

Ronan,
  I sorry to hear about your dad's difficult recovery.  The first week post op is the most diffilcut for all AN surgery patients, particulaly for larger ANs.  I'm sending good thoughts your way in hopes of continuing recovery.
Regards,
  Rob 

[Brendalu]

Ronan,
I am so sorry all of this is happening to your Dad, you and your family.  My thoughts and prayers are with you all.  Please keep us posted.  I know that music, touch and voices helped my cousin come out of a fourteen day coma. 
Brenda

[Jeff]

Ronan,
I am sorry that this happened to your father. I will pray that he comes back fully. I want to share that I had a similar thing happen to me last year when I had surgery. Briefly, my brain began swelling as soon as they opened me up. The surgeon had to remove part of my cerebellum so that he could remove the tumor and close me up safely. I can share that I did not regain consciousness for approximately two weeks. And, when I did regain consciousness, the process was very slow. I describe it as slowly coming out of a fog. But, a year later, I have largely regained my cognitive abilities and have made great strides physically.
I am very fortunate to have supportive family and friends. Your father is fortunate to have a child like you. Your concern and compassion are obvious. My wife has shared with me the things that she went through during my difficulties. I know that this is difficult for you. I am sorry for that. I will be praying for you and your father.
Best wishes,
Jeff   

[Ronan]

Hi

Thank you everyone for your kind words. We just came back from the hospital and they told us that the MRI reviewed he suffered a stroke in the brain stem. I think that is perhaps the worst place to suffer a stroke. They told us it takes time to find out how bad it is and to sit tight and hope things are not as bad as it seems from the MRI. There is some swelling in the part and only time will tell.

We tried to wake him by shouting at him, and it seemed to work a little. When we asked him to show us some signs that he is there, he actually managed to lift his left fist up by more than 2 inches in a controlled and slow manner. At first we thought it was just a reflex. But when we asked him to do it again, he repeated the process a few times in a very slow but steady manner. I am hoping that is a sign of improvement. The doctors told us that is a good sign and to keep our fingers crossed.

Thank you once again for all your prayers. They really mean a lot to myself and my family.

Ronan

[4cm in Pacific Northwest]

Ronan,


BIG cyber Hug to you!

Daisy Head Mazy (aka “4)

[leapyrtwins]

Ronan -

I'm so sorry to hear about your dad's complications, but it's good to hear that the doctors have some idea of what might have caused them.  It sounds like he is a fighter and is making progress.   

Please keep us updated on his condition.  You, your dad, and the rest of your family are in my thoughts and prayers.

Be strong,

Jan 

[Brendalu]

Ronan,
I'll keep my good thoughts and prayers coming.  It sounds like your Dad is a fighter and is making progress.  Just make sure you and your family takes care of yourselves, too.
Hugs,
Brenda

[Jim Scott]

Ronan:

I was dismayed to read of your father's brainstem stroke, which is relatively rare but, obviously, can occur. 

That your father is responding to voices and could move his arm when asked, even if only slightly, is definitely encouraging. 

Rest assured, your father, you and your family will be in my prayers and I'm certain those of many others.  Try to remain positive.  When you can, and only when it's convenient, please know that we'll be grateful for an update on your father's condition.  Thanks - and stay strong.

Jim