ANA Discussion Forum
General Category => Inquiries => Topic started by: Ronan on March 18, 2008, 09:08:46 pm
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Hi
Finding this site is a great, great help. My dad was diagnosed with AN two Saturdays ago. It was a huge one, 5cmm. His operation was scheduled for next Wednesday. The doctors say they will be taking only a part of the tumor out as taking the whole thing out will be too risky. Is this a normal procedure? He has been suffering from hearing loss for the 20+ years (and no other symptoms) and lack of knowledge on this illness is the main cause of the delay in diagnose. My dad is 65.
My whole family is worried sick. We have gone through the whole range of crying, feeling lost and just not knowing what to expect. We are really, really afraid.
Ronan
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Ronan -
5 cm is certainly very big, but our own "Satman" had an AN that was 8 cm - the largest I've ever heard of.
Anyway, yes, it is standard procedure nowadays when removing large ANs to do surgery, leave some of the tumor, and then do radiation on what is left. The theory is that it cuts down on surgical side-effects. There are several members of this forum who had both surgery and radiation.
Don't be afraid, but make sure that your dad is being treated by docs who have a lot of experience in treating ANs - this is vital ! Where is he having the surgery? and who are his docs? Maybe someone here has used them and can give you some feedback.
For some idea of what your dad can expect, try to read some of the posts on this forum - there is a lot of information here that will be helpful to you and your family.
Best of luck to all of you,
Jan
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Hi Ronan~
So sorry to hear about your dad - I am sure that you are all really scared. How is HE feeling? AN surgery can be a tough road, but it is something that can be overcome (w/ a lot of love & patience!). I will be keeping you all in my prayers. Please feel free to send me a PM if I can be of any help to you. If you (or your family) would like to check out my blog, the address is below -- my AN surgery was 12 years ago -- you can see what my life is like now!
Peace to you,
K
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Thanks for the reply. Thanks for the encouragement.
I do not reside in the US, but we have got the best surgeon we can find that specializes in brain surgery over here. My dad is also terrified, though he tries to put up a brave front. Yesterday, he spoke about his worries about dying on the operating table, which shocked us all. We try to spend every moment of time we have with him, telling him about all the success stories we have read over on this forum. We have also scheduled some appointments for him after the surgery in an attempt to make him know we expect him to keep them. But other than that, he is just resting a lot.
Ronan
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Hi Ronan,
Best wishes to your dad and your family. Fortunately the chances of the worst happening are very small, so there is every reason to be optimistic on that score. 5 cm is on the big side, so there will some recovery time needed, and there will probably be some side effects. I'm betting he will be around to complain about them, though.
We are all rooting for your dad, so hang in there, together you can make it through this.
Steve
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Hi Ronan and welcome (to you and your dad). I'm sorry you (your dad) is/are joining our ranks but... thrilled you found us. Not sure where outside the States you are located.... we have many that participate here from all over the world and hoping they can help guide you, from a local level......
As noted, to "debulk" the tumor, then radiate the residual, seems to somewhat be a new standard for larger AN's. Many factors go into this decision of treatment as I know dr's will do this to help save nerves (ie: facial, hearing, etc) and from what I read (I have also met some, face to face, that have had this type of protocol done), seems to work great. It sounds like the dr's are doing what they can to help your dad's situation to the full extreme and I send my best wishes to your dad (and you) during this time. Please keep us updated on how the surgery goes.... know we are all here to help and cheer you all on!
Hang tough.... sending wishes for wellness to your Dad.... and again, welcome.
Phyl
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All of us who have had surgery can relate to how nerve wracking the waiting is. There is so much fear of the unknown. After surgery at least you know what you are dealing with.
Let him talk his fears out even if it makes you nervous. I think most of us had the fear of that very small possibilty of dying during surgery. It's ok to admit to him that you are nervous too. Right now he just needs to know how he feels is being taken seriously and it's ok to feel what ever way he is feeling.
Afterwards he may have some off balance feel and that will improve with time. I tried to do too much afterwards to prove to myself that I will be normal again and one just has to not push themselves too much too fast as it does improve.
This surgery, even if just part of the tumor is removed, can be a long one so don't let that scare you also. Surgery day is very hard on ones family.
I wish you all well, Cheryl R
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Ronan,
Sorry to hear about your dad's AN diagnosis. It is not unusual for AN to go undiagnosed or misdiagnosed for a long time. I first had sudden hearing loss 25 years before a proper diagnosis.
As leapyrtwins mentioned, having very experienced AN surgeons can be vital to the best outcome. I don't know where you're located, but I know of one Skull Base surgery expert that travels internationally to perfom AN surgey, Dr. Takanori Fukushima, see http://www.carolinaneuroscience.com/
Best of luck with your familie's AN journey.
Regards,
Rob
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Just to add how sad I was to read your post. My thoughts are with you all.
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Ronan,
Good for you to advocate for your father and to get on-line! :) Welcome.
RE:
"The doctors say they will be taking only a part of the tumor out as taking the whole thing out will be too risky. Is this a normal procedure? "
What your father’s surgeons are advocating is de-bulking of the tumor. This involves removing the bulk of the tumor and leaving residual behind… and watching it via MRI to see if it shrivels up, disappears, or re-grows. If there is re-growth- it can later be treated with Radiosurgery (Gamma knife etc.) This de-bulking approach also has a higher chance of preserving the facial nerve. Because the tumor is big I advise that you and your Dad prepare for the reality that he could have some issues- post surgery. I initially had balance issues- 6 months later I am now fine there. I woke up with complete Bells Palsy. Almost at 7 months now - I have 60 % facial movement back but I developed synkinesis (this happens in ‘some’ cases). I think it is advisable to leave residual tumor as to not damage the facial nerve (I had 99% tumor removed and now I am thinking they should have left more tumor behind to preserve the facial nerve to which my tumor had completely incased). It sounds to me that your father’s surgeon is advocating the right thing. It is important to be realistically aware that the bigger the tumor the bigger the chance of residual effects- (post surgery). However know that the mortality rate for this surgery is VERY LOW- as technology has improved the treatment process tenfold (over this past decade.)
Here is some info from the Canadian group
http://www.anac.ca/endocs/Finding%20Qualified%20Medical%20Professionals%20-%20May%2020.pdf
And from our ANA site here
http://www.anausa.org/questions_for_physicians.html
It is imperative that you chose a well qualified and experienced "neurotologist and neurosurgeon team" to do this surgery. Also ask what sort of follow up care they offer (physiotherapy etc)
I highly recommend getting these booklets
https://secure.baxinternet.com/~anausa/for_sale.html
The Canadian group also has some booklets available
http://www.anac.ca/links.html
I wish I had bought these and read these before my surgery.
Again- know that the outcome of AN surgery is very different with each patient. There are people with tumors smaller than mine who have had long term lingering effects from surgery yet there are others with bigger tumors (than mine) that sailed through this with minimal post op complications. My only complaint now, with my surgery outcome, is the synkinesis that came as the facial nerve branches grew back and attached to the wrong muscles. I think that if your Dad’s physician is suggesting only removing part of the tumor this is good -as this will increase the chances of facial nerve preservation.
With a large tumor chances are - it will be a long surgery. I recommend that your father does a blood draw and donates his own blood... a couple weeks before his surgery- in case a blood transfusion is needed (as was my case)
Try to encourage your Dad to get on line and join us. This group was key in my successful recovery- and they are still supporting me as I cope with getting physiotherapy for the face (remember your Dad may not even have this issue- each patient is totally different).
Please remind you Dad that the mortality rate for this sort of surgery is VERY LOW now-a-days… Nevertheless for some of us it has been a life changing event and it is advisable to prepare yourselves with knowledge and information.
Here is a good link that explains treatment
http://www.umm.edu/otolaryngology/acoustic_neuromas.htm
Here are a few text book pages that explain this- if you are up to reading a medical text book
http://books.google.com/books?id=4NPQ8Mqt-QUC&pg=PA356&lpg=PA356&dq=debulking+large+acoustic+neuroma+tumor&source=web&ots=nahN6Rjc2b&sig=wspU-LOAxgaX527uqPPmm64e-sE&hl=en#PPA356,M1
Here is an on-line medical dictionary
http://medical-dictionary.thefreedictionary.com/
(to help you de-code their Greek-Latin language :D)
If the surgeons are suggesting “multiple surgeries� I would be concerned- mainly because of your father’s age. I had a surgeon who wanted to space my treatment into 3 separate surgeries and I declined being that I had already has a one major non AN relate surgery -that year. (This may have worked for a younger patient but I was not game or up for it.) Basically you need to ask lots of questions of the surgeons -as to what surgical approach (translab or retrosigmoid) they are planning and how many successive surgeries are they planning to do to remove and/or de-bulk the tumor (not including radio surgery if there is re-growth).
Gee I hope I have not overwhelmed you. Send me a private post particularly if you have more questions about the 2 surgical approaches – retrosigmoid vs translab.
RE
"I do not reside in the US"
Remember that our forum is global and all are welcome. We have writers from all over the globe.
Which country are you in?
4
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Take care to educate and calm yourselves so that you can give your Dad the best positive support. There are lots of testimonies here to encourage you. Remember that folks don't die on the table from surgeries today. The AN is a space occupying mass made of benign cells. Your Dad will recover in time.
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Thank you everyone for making a foreigner feel so welcomed. Thank you for all the links you have provided. They are a great help.
I live in Singapore and there is honestly not much anyone can read up on over here. Everything seems so flat and robotic over here. Unlike over in the US, we do not have any support groups (or at least I have not found any) here where we can find someone to talk to. I am now determined to set up something over here after my dad's operation so that patients and family members can find someone to talk to. It is one thing to talk to doctors and nurses, I think it is more important to talk to people who have actually been through the journey to fully understand the pain and anguish.
I will keep everyone updated on his progress. I look forward to the day when I can tell everyone that he has recovered. Thank you very much once again.
Ronan
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ronan, I am from singapore too!! the knowledge and experiences in this forum is excellent, so you came to the right place. i will contact you offline.
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Ronan,
You know House Ear Institute takes many international patients. Chocolate truffle actually had a team I too very seriously considered- particularly if I had gone the translab surgical approach.
Anyway food for thought if your dad wants to work with the most experienced neurotologist surgeon in the world :
Aka Grandpa Brackmann
http://www.houseearclinic.com/BrackmannDE_CV.htm
&
http://www.hei.org/news/bios/brackmann.htm
(Don’t let his age fool you! I met him and he is still sharp as a tack. He has all sorts of neuro-science awards from the British and Canadian Medical Boards. He is quite a remarkable man.)
Just a wild medical travel idea…
::)
4
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Ronan,
I am keeping you all in my thoughts and prayers. Read about the ninety plus year old woman who is a 25 year alumnus of the AN factor! She should put your mind to rest about your Dad. Have you been told how they will deal with the rest of the tumor they are leaving behind? I am so sorry that your Dad is having to go through this as well as the rest of the family.
Hugs and happy thoughts,
Brenda
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Ronan,
BIG cyber Hug to you!
Daisy Head Mazy (aka “4)
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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
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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
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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
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Ronan, I know its been a few days, but wanted you to know I'm thinking of your dad (and you and the family) and hoping all is getting better. Sending prayers and wishes.
Phyl
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Hi
Thank you very much for all the care and support everyone has shown. I am deeply touched.
Some good news, finally. My dad has regained consciousness, though his conscious level is still not perfect. He sometimes still go unresponsive for a while. For some strange reasons, he seems to be most awake at night and sleeps the most in the afternoon. He has managed to move his left arm, up to his elbow level. His grip is quite strong. His is able to follow simple instructions, such as clutch fist, show 2 fingers, three fingers, etc. His right hand is till very weak, though we notice some movement. He is able to move his head and blink his eyes and can answer simple questions we post to him.
The doctors did a tracheostomy, to wean him off the ventilator. He is mostly breathing on his own, but the doctors want it there just in case. Last night, he tried to pull off the tube after we went home and was scolded by the nurse. We see these as good signs, because he seems to be more alert and aware of his surrounding. Today, he managed to move his left leg, though just by a little. The physiotherapist has already visited him and is stretching his muscles out a little.
We have been talking to him a lot and he seemed to understand what we were telling him.
I will keep everyone updated on his progress. Thank you once again.
Ronan
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Ronan - thank goodness your father has woken up. I have been praying for him.
Mary
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Ronan~
At last, some good news. I hope it only gets better and better...
Your father, you, & your family are in my prayers!
K
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Ronan,
Prayers and continued good thoughts coming your way. Wonderful news, I'm sure your Dad will continue steady, good progress.
Brenda
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Ronan -
thanks for the update. I'm glad to see your dad is making progress. Small things will eventually lead to big things - remind him to have patience.
Keeping you and your family in my thoughts and prayers,
Jan
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Ronan,
Great news! While progress seems painfully slow, healing occurs none the less. Your father's situation reminds me of what I went through. And, while pulling out tubes is not great, I do see it as a sign of progress. I am told that I was very quick at pulling my tubes out. I eventually had to be restrained. Even then, I somehow managed to move my head close enough to my hand so that I could pull my tubes while restrained! And, movement is great! I am told that at one point, I was unable to move the left side of my body. Strength and control gradually returned. Now, I move at will, lacking only fine coordination (for example, typing is difficult). At any rate, I will continue to pray for you and your father.
Take care,
Jeff
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Ronan,
Quoting You
“He is able to move his head and blink his eyes…�
If he is able to blink BOTH eyes this is amazing. It means that his facial nerve is still functioning. Many of us did not wake up with this as one eye was paralyzed by the Bell’s palsy from the trauma of surgery. Count this as a plus and success.
RE Quoting You
“For some strange reasons, he seems to be most awake at night and sleeps the most in the afternoon�
The brain stem controls bodily functions- sleep included. This "may" be why your Dad’s time clock is backward. Hopefully as the swelling goes down the brainstem will readjust. My sleep pattern prior to surgery was all over the place- I have more normalcy now that my brain stem is straight (the tumor pushed it into an “s� shape i.e. now it is gone the brain stem is not so affected)
I have one piece of advice to pass along – being that I too had swelling post surgery. If they have your father on Acetazolamide (sold under the trade name Diamox)
http://en.wikipedia.org/wiki/Acetazolamide
… And the time comes for him to come off of it- be sure to NOT have him stop abruptly but wean off the drug slowly. I speak from personal experience here. I had an Oregon doctor abruptly stop mine (even when I told him this contradicted what I was told to do when being discharged from the hospital ) and I swelled up like a puffer fish and had regression in my balance, facial nerve etc… and a CSF leak.
MORE HUGS
Daisy Head Mazy (aka “4)
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Ronan:
I appreciate the update on your father's condition, as does everyone here that is following his progress after his brainstem stroke.
Your father sounds about as impatient as I would be in his situation. Pulling out tubes is ill-advised but understandable, out of frustration on his part. Patience is not so easy for some folks but of course, this will be a journey that requires patience on his part, yours and others involved in his recuperation. I trust your father will continue to improve as the days go by. Many folks are praying for him and for you. I'm one of them.
May this pass and may your dad be well again soon.
Jim
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Hi Ronan,
Wonderful news, I'm glad to hear your father is back. Pulling tubes is an excellent indication of recovery, whatever the doctors and nurses may have to say about it. He is a person again!
The next step is to get him off the ventilator, so he is fully self sustaining. He is almost there, and that is the main thing - get all the body machinery working again. It sounds to me like he is regaining more mental awareness with every passing day as well. It really is very good progress.
Enjoy the peace and quiet while you can, soon he will be grumpy and complaining about every little thing. :)
Best wishes for continued progress,
Steve
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Ronan,
Though I haven't posted to this thread before, I've been following it and am so very glad to hear that your father has woken up! Thanks so much for keeping us posted, and very best wishes for his continued recovery!
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Ronan,
How is your father doing?
Jeff
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Hi
My dad contracted a super strong bacterial infection in his blood last week and is currently being treated with one of those super strong antibiotics. They seemed to be working, since he has stopped developing a fever and seemed quite like his old self. The doctors are sending his blood for regular culture and the results from the first test seemed quite encouraging. We are keeping our fingers crossed. Because of the infection, his doctor has put off inserting a permanent shunt for him until he has recovered from the infection. He still has a drainage tube sticking out of his head, which needs to be replace every two weeks in the operating theater. We were told that with the external VT tube, they are able to adjust the fluid pressure in his brain accordingly before deciding which type of shunt is suitable for him. He is still on a feeding tube, drip and trachea, though they are weaning him off the trachea soon, as his breathing is improving.
One thing we noticed since Saturday last week is that after some encouragement and a lot of effort on his part, he is able to move his right hand and fingers slightly. This is the first time we are seeing that and are very happy. His conscious level seemed to be improving, he was awake for most part of yesterday and can quite easily be awaken from his sleep. His grip on his left hand has become quite strong and he always tug at this blanket and bed sheet. We noticed two days ago that his hand and leg muscles on his left side began twitching and it would go on for a while before it stops. We informed the doctor and nurses about it and they all said it was nothing that we need to be worried about. They seem to see that as a good sign.
His progress is painfully slow. His doctor has told us not to "expect him to jump out of the bed tomorrow", which we fully understand. He told us that it will take months for his condition to improve slowly and that he is confident that he will recover in time. He believes it is the little factors that is affecting him recovery process, such as nutrient, electrolyte levels in his blood, sodium level, sugar level etc, so they are monitoring these factors very closely.
Thank you for all the concern everyone has shown.
Ronan
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Hi Ronan,
Thank you so much for updating us on your father's condition. I'm sure it can't be easy for you, and it sounds like you will need a lot of patience during the slow recovery process ahead. I'm glad to hear that the hospital is able to respond effectively to a development like the bacterial infection.
To me, since I am not watching him every day, it sounds like he has made some good progress. His improved breathing, longer periods of being awake, and active movement on the left side are all good signs.
Stay strong and take care of yourself as you stand by his side. Patience is always the watch word on this forum, and I think you need a double dose. Have faith; you will see results in the end.
Steve
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Ronan~
So sorry about the infection but glad they seem to be monitoring & responding to it. Know that prayers are still coming your way for your father, your whole family and the doctors attending to him.
Peace,
K
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Ronan -
thank you so much for thinking of us and updating us on your father's condition.
It sounds like he's making progress little by little. Sometimes recovery is slow, but he'll get there.
Stay strong. Best wishes,
Jan
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Ronan:
We appreciate you making the effort to update us on your father's condition.
It seems obvious that your father is a fighter and is struggling to come back from the brainstem stroke. I believe he will but as you are well aware, it will be in small increments. Sometimes recovery from such a medical crisis seems to move at a glacial pace, but apparently you're seeing small but steady improvements, even with the infection that was able to be treated effectively. Your father's courage and determination with your support and love will certainly go a long way in helping him recover. Prayers are being said for your father (and for you, Ronan). Many folks you've never met care about this situation and the people involved. Please try to update us when you can find the time. However, we all understand that first and foremost, your attention is on your father, as it should be. We wish you well and I'm confident that, in time, this will work out for the best.
Jim
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hi Ronan
I had just read about your fathers surgery. It sounds like you have a very close family your father is very lucky. I will be praying for him and your family that the rest of his recovery is a smooth one.
Sam
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I'm sorry this has been such a long, hard haul for your father and you and your family, Ronan. It's so unfortunate that the infection developed, but I'm glad that he seems to be responding to the antibiotics and that he continues to improve from the stroke, though I can only imagine how hard it must be to bear with the necessarily slow pace of his recovery. I agree with Sam that he is very lucky to have you standing by him!
Your father will be in my thoughts... Hang in there!
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Hi
A lot has happened since my last update. My dad was making fantastic progress until 2 Sundays ago. He had his shunt inserted and his conscious level was very good. He was able to response to all our questions, either by nodding or shaking his head or using his hands. He was doing so well that the trache was removed and for the first time in 2 months he spoke. We could hear some words and one night he said goodnight.
All that came crashing down 2 Sundays ago. We visited him on Sunday morning and discovered he had a dislocated shoulder and a huge (7 inch diameter) hematoma on his right chest. The doctor came in and set his shoulder on spot without even doing an x-ray. He seemed a lot more comfortable after that, but his screams during the procedure was horrible. The doctor initially said that the hematoma was due to the dislocated shoulder. An x-ray was done only later at noon.
Later on, in the evening, a trainee nurse went in to do suctioning (to clear his lungs). We were told to wait outside the room. After a while, the nurse came running out, shouting "Staff nurse, patient is vomiting". Instead of rushing to his aid,the staff nurse in charge of my dad said "I am serving dinner". The trainee nurse rush in again, and a while later ran out again to shout for help. This time, a nurse went in. Within a short moment, the nurse came out and shouted for more help. It was only then the staff nurse in charge of my dad went in. She immediately called for the doc to come. By this time, a lot of the vomit has flooded his lungs and he was having difficulties breathing. The doc immediately asked for a new trache set to be prepared and he immediately reinserted the trache set. He was immedaitely rushed into the Intensive Care Unit. They spent a lot of time in there trying to suck as much of the vomit from his lungs. A CT scan later reviewed his right lung was very cloudy.
In the next few days, he developed a few more antibiotic resistant bacteria in his lungs. He is now on many more medication and stronger antibiotics.
We were very upset and angry with the hospital. We have asked for a full explanation and put it to the doctors and nurses that they are the once who put him there, they better do all they can to get him out of it. They have admitted responsibility for the afternoon incident, but have yet to justify the dislocated shoulder and hematoma.
He is doing slightly better this two days, but he is still very weak from all the drugs and infection. His hematoma is still huge and they are monitoring it very carefully now. I will keep everyone updated on his progress.
Ronan
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About all I can say is Wow.
The dislocated shoulder is a real mystery, I don't see how that could happen. ???
Is your dad still conscious during this? It sounds like he made good progress in recovering his mental state; hopefully that has not gone away. The whole afternoon incident is really distressing, I don't know what to think or say about that hospital.
I hope your dad manages to battle the infection and recover from that as well. He has been through enough now.
All the best, Ronan. You have been very strong through all of this; try to keep it up.
Steve
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Ronan -
it's good to hear from you. However, what started out as a very positive post ended up being very disconcerting.
I find it highly disturbing and very confusing that your father was doing so well and then took a turn for the worse. Did the doctors give you any reason for your father's sudden dislocated shoulder and huge hematoma? Is it even possible for someone to just develop those?
As for the lung incident with the nurse, I am speechless :o
You and your family have every right to be angry and upset. Is there some kind of disciplinary board at the hospital that you can talk to about this issue? While it's a good thing that the doctors and nurses have admitted responsibility for the incident, it somehow just doesn't seem like enough.
I am so sorry for all that your father - and you and your family - have gone through. I will keep all of you in my prayers.
Please do keep us updated.
Jan
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The doctors had initiated blamed the hematoma on the dislocated shoulder, and blamed the dislocated shoulder on a sudden severe fits. However, after we asked for answers, they got a Orthopedic specialist to come see the fracture. He was able to confirm that the hematoma was not caused by the dislocated shoulder.
While they are still unable to explain the dislocated shoulder, the new theory they are going by now for the hametoma is that while doing the shunt, the location of the shunt is very close to a major artery on the chest. Over time (one week to be exact, since the shunting operation), the rubbing of the shunt with the artery caused the artery to burst. Blood leaked from the burst artery at a very fast speed and at a certain level, the huge hametoma exert enough force on the artery to stop it from bleeding. As the hametoma has not gone down significantly yet (after almost 2 weeks), they have to "wait and see". They are not ruling out surgery if the hematoma doesn't go down.
The doctor has, however, indicated that it is highly unlikely that he would suffer a major fit attack, dislocate a shoulder and have a huge hematoma, all on the same night. He did not have any major fit attack before this incident.
We have complaint to the nurse clinician (head nurse) and the doctors of the ward and have long talks with them and they did mention that they will impose some disciplinary action on those involved. We chose not to pursue the incident anymore, at least not at this time. Instead we set them the more difficult and important task of making sure my dad is well taken care of and that they make sure they do everything they can to get him well. They have since been extra attentive to him.
Steve, I think he was conscious throughout the whole ordeal. I can't bear to imagine when his shoulder was dislocated and how many time they have turned him the night not knowing he had a dislocated shoulder. He looked really miserable when we visited him in the morning. The saddest part of the whole incident is that we were the ones (and not the nurses on duty) who discovered the hematoma which ultimately led to the doc telling us he had a dislocation.
He was unresponsive for two days this week, when the infections set in. His mental state seemed unaffected, but we do not really know at this point as he is still very weak.
Ronan
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Ronan~
Oh My Goodness! Y'all have been thru the ringer - I am so sorry about this new development. All I can say is that I will pray...for everyone involved, but mainly for your father's healing.
K
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ronan--
I'm so sorry to hear about what your father has been through recently. How absolutely horrible! I really hope the hematoma goes down without surgery being required, and also that some explanation for the coincidence of the seizure, dislocated shoulder and hematoma emerges so that any further developments like this can be avoided.
Thank goodness the hospital is being extra attentive to your father now, though of course their earlier lapse was disgraceful. You, your father, and your family will be in my thoughts for peace and continued healing...
Carrie
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Ronan,
My heart goes out to you and your family. I will put your family, especially your father, in my prayers tonight.
Hugs.
Daisy-Head Mayzie
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Hi
Just to update everyone. After months and months of perseverance and tons of hard work, my dad is now finally able to walk with a walking frame. He has been undergoing intensive rehabilitation for the past 2 months (and still going on). The improvement is amazing. He went into rehab with muscles feeling like jelly. Now, he actually has real hard muscles in his legs and hands. He still has a lot of rehabilitation to do, but we are very happy with his progress. The only major problem we have now is that he still cannot eat (tube feeding now). His swallow is still quite weak, though improving and it seems one of the muscles controlling food entering his throat is not opening well. He is undergoing speech and swallowing therapy everyday and it seems to be helping. We have an appointment with an ENT specialist this Friday and they are considering botoxing the affected muscle and hope it will help.
Thank you very much for all the love and prayers everyone has showed us.
Ronan
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Hi ronan, i have been following your story , am so happy your dad is doing well all your prayers are getting answered, send him my love xxx
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Oh my goodness, Ronan, you have updated again! I thought about you a while ago, and frankly I was afraid to ask what had happened.
I am delighted that your dad is up and about. My dad has been using a walking frame as well, he is recovering from a hip replacement surgery. Your dad has a longer road ahead, but it sounds like he is making great progress. The ability of the mind and body to recover from this kind of trauma is truly amazing. I hope they are able to find some way to get the swallowing muscle to work.
I hope you are holding up as well, this must have been a very stressful time for you. Please remember to take care of yourself through all this. It is a little bit early, but I am going to wish you and your dad a happy new year now. There are better days ahead. :)
Steve
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Yeah, Ronan!!! ;D
Glad to hear your dad is doing so well.
Thanks for returning and updating us. I think I speak for many when I say, we really appreciate it.
Please give your dad our best.
Jan
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thanks so much for the update and it seemed you dad is on the RIGHT track for recovery!!
do keep us posted, we are keeping you and your dad in our thoughts - hang in there and be strong!
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This IS good news. :)
The brain is very plastic and can make recovery. I found botox to be very helpful... as it gave the non firing muscles a chance to catch up.
Hang in there and keep moving forward. Your Dad is lucky to have someone like you!
DHM
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I had a 5cm x 5cm. They had to leave some of it in after debulking it.
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Thank you everyone.
Ronan
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Ronan,
Can you give us an update on your dad?
DHM