ANA Discussion Forum
Archive => Archives => Topic started by: karen52 on June 09, 2005, 12:17:53 am
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Mid march my sister fainted at wk.. She was taken to the hospital, a 29 hour surgery was performed the next morning. She found out today what the name of the tumor was. Kind of surgical proceedure, I don't know yet.
I told her that I would find out as much info as I could about AN and types of assistance for her. She is still very weak and sick and is a nursing home at present.
Kathie is in Tampa/Clearwater and I'm in the Atlanta area so I feel stressed and out of control. She is a single mom who is in need of lots of info and assistance. I will do whatever I can from here.
Because she is not sleeping well at all, I keep my calls between 6 and 7 pm. Most nights that works. The other night she sounded awful! I let her rest last night and tonight she said that the last few days she has been down in the dumps.. upset and very sick at her stomach, and the headaches were worse. She mentioned that they were going to check her spinal fluid. After having read your posts, I understand that CFS may be the problem.
Information is food for the soul.... knowing what to expect... how, when, where and why.
Any info "ya'll" can contribute would be a God send.
JUst for potential necessary backround, Kathie was in the hospital for 6 weeks, the last 2 weeks of her stay she had pneumonia She went to rehab for 2 or 3 weeks and is now in a nursing home. If all went well, they expected that she would go home in a couple of weeks, but now with the current symptoms, (CFS?) don't know the ETD.
Once again, please offer any thoughts, feelings, ideas, med info... because we know not a lot. Prior to today, not knowing what kind of tumor, I was researching them ALL AND looking for corelations between breast, kidney and brain malignancies (siblings) . I need to narrow my search, and ya'll are the UNFORTUNATE EXPERTS. From the bottom of my heart, I thank you in advance.
Karen
mera30120@hotmail.com
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Hi Karen,
I'm not clear--Did your sister indeed have an acoustic neuroma --it sounds like it and what type of surgery was performed. 26 hours seems quite long unless something went drastically wrong. It seems most doctors would have opted for a translabyrinthian approach with the size and placement of the tumor (though I'm not a doctor myself--but from what I've read, that seems the norm).
CSF is a common post-operative complication and in most instances, the doctors determine where the leak is coming from and plug it back up.
You may want to ask the surgeons, what type of surgery your sister underwent and why did it take so long. Were there complications during the surgery, etc. and then, possibly seek alternative medical care if you don't like the answers.
Best of luck to you and all of God's blessings.
Rebecca
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Hi Karen
I'm not sure how you came up with the name of your post: "4cm. cerebellopointe angle w/ acoustic neuroma", not having a clue as to the type tumor. 6% of brain surgeries are for acoustic neuromas.
Pretty lengthy operation!! I've heard of a couple AN surgeries taking that long and were usually accompanied by deafness, facial paralysis, and yes, CSF leak which can cause severe headaches.
Seems she is in the right place. Can she still hear and is their any facial involvement, unable to close eye, swallowing problems, drooling, etc?
Please stay as strong as you can for her. This could take a few, ( approvimately 3 ), months to get home again. One day at a time with set back days between...
Russ
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I found info on "cerebellopointine angle w/ acoustic nueronoma. I found it under point angle acoustic neuronoma. I don't have my notes in front of me , but I believe that I read about "the" 4 types of AN's. As well I read about various approaches to AN surgery and CF leaks.
Yes to all. Hearing loss, Coughing, some cognition probs, nausia, rounded sholders, headaches, feeding tube (still), shoortness of breath, left side facial paralysis, balance (uses a walker and wheelchair). On 17 meds a day. I don't know if that is 17 various meds or in total.
Ins for nursing home ran out Wednesday so Thursday she was sent home. No one willing to stay with her, no home health in place when she got home. Anyway the evening that she got home, a smelly brown fluid ran from her ear. Unable to reach her doctor, she waited. The next morning she awoke with the same. Tried the Dr. again to no avail so she got someone to take her to the hospital. This a.m. she has surgery.
Without getting into all the garbage, I'll just say that there is a sister between us, who because of proximity, all info has to go through her- she insured that while Kathie was still in surgery.
Kathie and I have discussed that she is going to send to me a noteirzed statement authorizing access of info. Needless to say she has been unable to get to the notery. And she has no fight in her. Understandably, her energy is used to endure the 2+ months of constant debilitating nausia, headache in addition to the other symptoms that I mentioned.
The fact is there is no one there to answer her questions or to ask questions for her or to insure that she call her doctor. How do they know when to even call him with no information being provided. I can't do this over the phone!
She is working in the dark as to what is norm now or what . She told me that her nausia and headaches were worse. A day or two later that she was felling a huge negative emotional change, I told her to call her doctor that it might be a CFL and it is not uncommon post op. We went into that discussion. Earlier on, she didn't know that headaches were common etc. etc., we went into that. She was relieved to know that it wasn't necessairily an indicator of another big event.
She asks her "white tower" attitude dr a question and he is offended and gives an explination like your nerves in there are all jumbled up that is why. She can't deal with that, she has to have an understanding of what and why, yet is too sick to fight with him.
Tonight when she got to her room I called her. She was crying to the depths of her being. She said that the doctor was going to perhaps take skin from her stomach to cover the leak, but that he didn't know what he was going to find when he got in there and cleaned up in there. It was not explained to her that he was more than likely referring to which proceedure he was going to need to use.
My purpose in going into all of this is let you and others know how needed and valued your input would be. I am trying to inform myself but I feel so inept. Also there is no income and a family to survive. There is so much to be done. She is not to the point of considering comming up here to live with me, though the offer has been made. So here we are!
Why brown fluid?? Doesn't sound normal? Dried blood? 2 + months post op? What the BLANK is that about!? This doctor is about to drive me wild! Or maybe I'm being paranoid. Come on 29 hours and your supposed to not question it or anything since! But the son of a gun (I'm trying to behave!) is getting by with it! Ya got to have one heck of an ego to do brain surgery but this goes beyond?!
OK OK
but please assist with info. For what it's worth, Kathie is in Clearwater Fla. and is back in Morton Plant Hospital. Any good DRs. to keep for future ref?
Thanks ever so much, karen
mera30120@hotmail.com
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Karen - I'm in S.W. Florida too and when I did research on having surgery for my neuroma, University of Florida at Gainesville kept coming up with great reviews for docs that treat these brainstem tumors. I'm still on a "wait and watch" basis. Clearwater is so close to Tampa, there must be some good docs there. I know I wouldn't give up my M.D.'s in the Fort Myers area.
Sheryl
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up date on kathiie
In ICU post op for the leak repaire thiis A..M.
STABLE
took skin from her leg
thant's all I know as of yet
karen52
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I guess what I don't understand....okay, let me ask this question...what symptoms did she have prior to fainting that day which led her into surgery??
This all sounds more than AN......who has her children during all of this?? I personally haven't heard of them taking skin from the leg for an AN......they take body fat. What did they use the skin for? the rounded shoulders....that is another thing I haven't heard before....when did that begin? I am asking because this I hadn't heard that either.
How did she find the doc who initially operated on her? Did she go immediately into surgery after fainting? What tests did they give her to end up with a 29 hour surgery? How did they diagnose her and how big an AN?
This site has shown me that no one AN is typical....they are as different as the people here.
As far as her doc not answering any questions....how about the staff and getting another doc....did the hospital pick him and what is his specialty?
Just curious..
jan
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2 years prior to fainting her symptoms began in this order:
morning headaches...bad ones, she began at times to get them also at other periods of the day also
eyes got new prescription)
hearing 6 mo, after onset of headaches)
eyes had a big change after 6 months from last prescription)
****s bigger this happened about a year and a few months from onset of headaches (fsh was checked and was w/in limits)
weight gain ( not huge, in a 6 mo. perriod--15 lb
spacial perception, clumsy (perhaps it was not a balance issue) weeks before fainting
emotional changes, irriatable, confused a week before fainting
4 cm
I asked the ICU nurse last night, Kathie had just come up from recovery, if they had taken skin from her stomach. She said no that they had taken something from her leg but didn't know much yet.
My first thought was that they grafted an artery intro her head...I was confused...I thought that because of the brown fluid...that perhaps the artery in her brain was weak and worse that it ruptured during surgery!
She drove to the GP after fainting! From there she was in ICU awaiting surgery the next morning. During that surgery I questioned the OR nurse about the unusual surgery time. What she told me was, tumor was in the very back of the head and that it was tentical like and wrapped around everything back there. DR. was haviong to peal it away from everything. She also indicated that the surgery had to be done because the tumor was cutting of ____ to the brain and had already done a lot of damage.
I am about to call the hospital again. Let's see what they tell me. Wish me LUCK!!!!
karen52
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The ICU nurse said that they had taken fluid from her spine and DID use body FAT from her LEG to patch the leak. Maybe she has lost too much weight for the arm?????
She said that Kathie is better today than yesterday, that she was in better spirits today and the condition is improving. She, however, said that Kathie was in "still" guarded" condition.. Said she isn't critical but that she they have to be very careful, said the poor thing has been through a lot. Said she cant move around because of stress on the patch. She indicated that any movement also causes Kathies nausia to worsen. I took it that she might have been dry heaviiig throughout the night. Anyway, just that her naussia is very awful, any talking, moving anything makes it worse.
The kids have been a great concern for me also. The other sister wont stay with them, but does check on them and take them to and from the hospital. She takes one girl at a time to spend the night with her a few times a week. The boy doesn't want to go. The x husband stays at Kathies a couple of nights a week. I have offered to take one/all but they want to stay near mom. I know that the kids need a "home" and stability. It's just a mess in every way! But Kathie is alive and she has not lost her personality or the capacity to communicate the same way she always has.
I don't know that the GP got her the Dr. or if the hospital did. It was all so quick that I'd think that the hospital did? Why even she was taken to that particular hospital either, I don't know.
TENTICLE like, does that indicate more than? Aren't AN's defined in shape, or not always?
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FIRST OF ALL, EXCUSE THE CAPITAL LETTERS AS MY KEYBOARD IS STUCK FOR THE MOMENT..........
I QUESTION THE DIAGNOSIS OF AN ACOUSTIC NEUROMA WITH YOUR SISTER. AN'S DO NOT HAVE TENACLES. THEY DO NOT INVADE THE BRAIN AND CUT OFF BLOOD SUPPLY.
THE SYMPTOMOLOGY USUSALLY DOESN'T INCLUDE VISUAL PROBLEMS, WEIGHT LOSS OR WEIGHT GAIN, SHORTNESS OF BREATH, STOOPED SHOULDERS. THIS IS MORE INDICATIVE OF AN ACTUAL BRAIM TUMOR THAT INVADES THE BRAIN.
WITH AN'S...THEY TAKE FAT FROM THE ADDOMEN...NOT THE LEG. THEY DON'T USE SKIN TO COVER THE AREA BUT BODY FAT....THERE IS USUALLY PLENTY OF SKIN FROM THE SCALP TO CLOSE UP THE INCISION....EVEN IF THERE IS A CSF LEAK. THEY CAN TAKE NERVE GRAFTS FROM THE LEG.
THEY ARE USUALLY VERY CAREFUL IN THE ICU WITH CONTROLLING DRY HEAVING...EITHER IV MEDS OR SUPPOSITORIES IF A PATIENT CAN'T TAKE ANYTHING BY MOUTH.
YOUR SISTER SOUNDS MORE LIKE A TUMOR IN THE BRAIN INSTEAD OF A TUMOR FROM A NERVE....NEUROMA.HOW OLD ARE HER KIDS??
SOUNDS LIKE YOU HAVE YOUR HANDS FULL
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On Kathies 1st post op appt. I had her ask what is was. So the title of my post is exactally how she gave it to me
Our sister, Kristie had Wilms (born w/ kidney cancer) subsequent breast cancer (and demise age 30) . Their mother (we are 1/2 sisters but has never made a difference to us) had breast cancer. Maternal uncle had an esophageal squamous cell carcinoma (43 yr)
ould come back.
Perhaps the nurse just expressed it that way? Schwann cells affect the lineing of the nerves? I thought that perhaps those things just kept building up and building up on all kinds of nerves. Somehow the diagnosis didn't settle with me either. When she said an AN, I thought...couldn't be, but OK? I pretty much stopped the mountainess search engine exploration then because what was difficult to assimilate became impossible for me to assimilate.
Every day I am filled with unanswered questions. How can I help her if I don't know myself! I don't want to fill her with lies. I wouldn't say flat out that your gonna die either don't get me wrong
But just imagine if after going to the doctor with your symptoms your doctor said that you had a brain tumor, and then went into your brain for 29 hours. Your given a term for your tumor and are left in the dark for almost 3 months now, hospital 6 weeks, rehab then nursing home. He didn't even tell her about the possibility of a leak..what to look for. When I spoke with her the night before the surgery, she thought that he was going to find something else. She was crying like a baby...my babies, my babies...I don't want to die> Did I lie to her? I explained that I was pretty sure that he ment type of proceedure to patch it If I hadn't warned her about the possibility she really would have been freaked. She asks me to look things up, like why and how long nausia, headache? Will she be able to care for her kids. What the
Perhaps the doctor felt that the truth would be more damageing to her health than the truth.
Her son is 17 a Sr. next year, and her twin girls are just now 15. ( I have twin boys, I'm glad that we share that) They aren't small kids.. I had just turned 17 when my dad died; it is a bad picnic!
The X has to be threatened by the state for his 60.00 a month child support (self employed-lies about his $) so he's nobody she has trust in. The sister in town is who she is and Kathie and I understand that so that is out of the question. I am here in N Georgia and the kids don't know me very well . I have extended my invitation to Kathie for the kids to come here at any time. She and I talked about how we take for granted our lives. As soon as she got home and wass strong enough she was (is) gping to get a legal document stating that she wants me to take care of the kids if anything happened to her when the X got sick of them. I said that I figured he'd have his fill w/in 3 mo., she said not even.
But here we are with everything up in the air.
Incase you don't see from my other posts the sister who also lives in Clearwater is not fond of me So when Kathie can't speak for herself (surgery, ICU the doctor) , I'm left in the cold. Kathie has just been too sick to take care of it all.
I have just got to get down there. My kids, mom and I live on 26,000 a year.and we rent! My moms SS is taken up with meds and home health. My twins work to pay for most of their car, insurance and cell phones. I don't have a charge card because my divorce left me with his business tax obligation, but I got my kids. I say all that so you know that if I could go I would
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Regarding taking skin from the leg to stop a cfl: I'm not a medical person, but this was my experience with that. In 1987 I had to go back to remove a regrowth of my left side AN. The neurosurgeon made a "patch" to prevent a leak. I cannot remember the name of the tissue, but he took from my thigh a piece of tissue which covers the muscle (you know, like that film over a piece of chicken thigh muscle).
It worked; I had no leak.
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I had my AN removed 1 year ago. The morning I went in to the hospital to have it done the docters had me sighn for a fat graph. I was surprised and scared. But they took fat from my left side of my belly. I had a drain in it for 2 weeks. And you know what... IT HURT!!!. The fat was then put in my head where they opened it. I just wish while they were in there they took all the fat.lol I think now that they found the leak your sister will continue to get better. These acoustic neuromas grow for so many years before they are detected and by the time they find them so much damage has been done. I my self have had complications. It takes a long time to heal and remember your sister had so many problems, now she is on the right road. But I do have to say if a docter does not call back or answer questions that are asked it is NEVER too late to switch docters. Youyouiself can go on a web sit Best Dr.in your state and find one.Good Luck and God Bless. Keep us updated..Goldineye
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Karen52,
First off...bless you for all that you are doing for your sister. In these times we really find who we can count on, and we also find who the "paper tigers" are as well. The doctor that your sister has sure sounds like he needs a refresher course in bedside manner. It may help to do a bit of research on her doctor...here's a site that you can find some info on him. Just find your state and click on the link: http://www.massmedboard.org/links/medical_boards.shtm#V
Keep supporting your sister, no matter what other family static is there, you're trying to help her and that's all that counts. We'll be here for you.
Gary
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question. do these types of tumors ever cause the artery to weaken to the point of serious long term concern. I just don't know why there would have been blood in her head 3 mo. post op.
Also, the fluids were from the point of insision not her ear. I got the ear info from one of of her kids. I spoke with the sister with whom I have had resistance. I figured if she wanted to talk with me great, but I wanted her to contact House Ear for info. She told me thatshe would talk to Kathie about it, but now Kathie not she was calling the shots.
Kay is the one who said insision point not ear. Also, the night Kathie wasfirst russhed to the hospital, her kids said that she was in ICU with a 2 1/2 " tumor. When I spoke with Kay the other night, she was it was a 2 1/2" tumor. When Kathie told me what the doctor said she had had, cerebellopointine angle w/ acoustic nueronoma, she said a 4 something. Her tongue and mouth were more messed up then, and she kept having to repeat herself. She said 4 something.
Looking a AN's I figured that it had to be cm. Perhaps it was stage 4, compression of ventrical(s) artery, and brain stem. I'm sure that it was 4th degree but 2 1/2"?
I intend to push like a kind but crazed woman.. I told Kay that a downstairs accomodation might be wise with that was told that she can rest going up and down the steps.. Perhaps, but knowing Kathie, she will steamroll herself.
Kathie should be out of ICU today. I'm going to see first about a notery from the hospital and get a release of info. From there perhaps a limited pwrr of attorney so that I can do some footwork for her.
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the doctor patched the leak 2 days ago using tissue from the leg somewhere, and at that time, inserted a tube that drains from her lower spin. Tonight the dr. said that he may have to go back now and put in a shunt. She asked why he didn't do it during the surgury>. He said that her ventricles were too streatched. What would that have to do with her question? Any ides from ya'll on that? .
Kathie said that the tumor was 2 1/2 inches- extending down to the neck/skull joining. What was the "4", the degree, or stage or perhaps 4cm wide and 2 1/2" long, she doesn't know?
Kathie also related tonight that the doctor said that it had been there about 2 years. My question it causing pressure for that long or did it begin its' growth 2 years ago? Im enclined to think pressure, but the cell pathology might have concluded that it was a fast grower? That too, I would think, would indicate another concern.
How much sense does this all make based on what you understand. I know that we are not doctors; we are just folks sharing experiences.
I'll soon, hopefully, obtain the med reports, and will be able to ask fewer questions.?
Thanks for being there, karen52
mera30120@hotmail.com
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Karen52,
This sounds so much more than an Acoustic Neuroma (Vestibular Schwannoma). I would suggest that you also visit this Yahoo group: http://health.groups.yahoo.com/group/brain_tumor/
Here is a discription of this site: "This is an open forum support eGroup for persons affected by "Brain Tumors." This support eGroup has been established for patients, family members, medical professionals and rare disease researchers interested in sharing information and/or support for affected persons."
Maybe they can help to shed some light on your sisters tumor.
Gary
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sounds like it to me too!
I know this sounds crazy as all get out, but Kathie sticks by the info I got the night before her surgery, and that is that it was 2". Until I read it or hear it from the doctor himself, it's up for grabs with me, but this has been quite an incrediable hourney for a plain AN.
Kat has been home for about 1 1/2 weeks now, but may have to go back in for a shunt. IWhat are the downsides to a shunt?
Would it have been too incrediable to have the shunt placed at the same time the patch was done? Since the patch though, she has felt, for the first time post op, human. So, I believe that she probably had a cfs all along.
Thanks for the sight info.
By the by, my hearing has been going for awhile now. I thought to cover one ear and then the other to see if when I spoke perhaps I could tell any difference. There is like base only in the left ear and seemingly like high notes-no base in the right ear. Guess I'm kinda paranoid, but eventually, I'll let ya know. As I stated earlier, as of this past April or may, I have no insurance
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A couple of quick hearing checks (what I do myself), is to do simple things....rub your fingers together softly (the same in front of each ear). Use a tuning fork (I play the guitar), and see if you can hear it after striking it about 6" from your ear. When using the phone dial the same number using each ear and see if it sounds the same. But, if you have concerns...you may want to go for a hearing test just to put yourself at ease...
Gary