ANA Discussion Forum
Archive => Archives => Topic started by: Vincent87 on December 25, 2005, 10:39:19 am
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...what the doctors DON'T tell you. Mom had gamma knife for an AN that was no bigger than 2.5cm in May. She went through rehab (edema from treatment in August), is in a nursing home, and now on Wednesday she's to have a shunt implanted for hydrocephalus. (I didn't even know of the word, hydrocephalus, until a nurse mentioned it a day before she had an MRI in November.) She hasn't walked in weeks-she's only 69-and she can't sit up in bed without assistance. This is hell on earth. She's lost at least 40 pounds. The nausea and vertigo are debilitating-and even that doesn't cover it. I measure her food and drink intake by ounces and teaspoons. Zofran (4mg.) seems to help with the dry heaves. I don't know who to believe anymore...not her GK surgeon since I'm still waiting for his return call from THREE weeks ago. It's not a good way to spend Christmas Day. I only hope that this new surgery doesn't do more damage.
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Here's a little info about hydrocephalus for you:
Hydrocephalus can occur after either surgery or radiosurgery, due to post-treatment swelling of the tumor site. It is more likely if the tumor is close to (or touching) the brain stem, where CSF flows through a narrow area.
http://www.anarchive.org/hydrocephalus.htm
Any time I've read of a patient with hydrocephalus, the shunt operation alleviates the symptoms almost immediately. Your mother should start doing much better after Wednesday. I wish you and your mother the best! :)
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Hey Jamie:
Much thanks for directing me to another page on this website. And the well wishes. Her neurosurgeon made no promises-that the shunt would probably only alleviate the nausea. Well, Mom today ate about 1.5 cups of pasta fagioli, had some baked ham, some peach shortcake. (She's back at the rehab hospital as of last Friday. She was at the same hospital in September/October. They're miracle workers there. Sadly though she's still dealing with the vertigo. Can you imagine-almost five months of vertigo? But today at least she was able to sit up on her own, something she hasn't been able to do in about two months; previously a six month old baby was more steady than Mom was. And speaking of websites...only, sadly, after the fact...the Acoustic Neuroma Society in Seattle...almost ONE THIRD of gamma knife patients end up disabled. They have some startling stats on that website which I've never come across on this one. I truly believed I asked my mom's gamma knife doctor all the right questions...but...how can I say this-omission of information. And from searching other gamma knife websites-it's the same BS. If the patient experiences some swelling, it's treated "with a mild steroid." There's nothing mild about Decadron. Thanks for reading. Healthy 2006 to you!
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Hi Vicent87,
I'm very glad to hear your mom's doing better. Based on your previous posts I know she has had a very difficult time post treatment. In reading your post I was surprised with the quote from the Seattle Acoustic Neuroma Group ( SANG), which is an excellent reference web site, discussing "almost one third of gamma knife patients end up disabled". That didn't ring right with me so I tried to find it on the web site and located it under the view point of treatments section
http://www.anseattle.org/viewsontreatment.html
It's a very well written section which identifies the extreme viewpoints and disinformation that AN patients need to navigate through by proponents of any treatment options. The context of the quote they referenced was made by a facility practicing FSR and trying to "sell" people not to have GK whith a blatantly false statement. Very Ironic that one radiosurgery center would try to diss another protocol with such an untrue statement, but hey, there's a lot of wierd stuff out there.
The actual section with the quote you mentioned is:
What are the most extreme viewpoints you may hear?
* The worst view of microsurgery: microsurgeons willing to risk injury to protect incomes and dominance in AN medical services, playing on fears of radiation; patients unwilling to accept better ways of dealing with AN, and compelled to make all patients suffer surgery
* The worst view of radiosurgery: radiosurgeons willing to inflate success rates to promote business and pay for expensive equipment, playing on fears of surgery; patients unwilling to deal with short term pain for long term benefit, and compelled to promote treatments without long track records
* Giving the worst views of other options and the best views of your own option -- the contrast creates an inappropriate contrast that in effect manipulates patients by playing on their fears and hopes (for example, there is one website for fractionated stereotactic radiation (FSR) which does this: in its risks of treatments section, its only statement about gamma knife (GK) is that 31% of GK patients could not longer work (false information), 2) the only discussion of surgery associates it with death, such a rare occurrence in contrast to the close to 100% of persons who do not die (lack of balance), and 3) claims 100% success rates for FSR with no complications or bad outcomes (more false information). The FSR website in question maintained these misleading fictions at least up through December 2000, as of our last check. The moral: don't fall for hype from anyone.
Such views are counter-productive and vacant of foundation. For any negative portrayal, a similar one can be crafted to oppose it. We affirm the good intentions and professionalism of all involved in the fight against AN and other diseases, and we believe that each patient's choice deserves to be fully supported. We believe there is absolutely no merit to the types of extreme characterizations above, and we mention them only because you are liable to encounter them in one form or another in your quest for knowledge on AN.
I just wanted to make sure no one actually took the statement at face value without understanding it's full context.
I also wanted to copy the next sections as they also make some excellent points in how patients need to discern the information they hear from physcians. My own personal view continues to be that people should seek out neurosurgeons that do AN's with both open surgery and radiosurgery as in most cases that eliminates some of the other factors listed below
Mark
From the viewpoints section of SANG
Here are some key points to keep in mind.
Doctors have an understandable preference for their own approaches:
* radiation oncologists generally favor radiation
* neurosurgeons generally favor surgery
* there is nothing sinister about this; it makes a lot of sense that doctors understand and have the most current knowledge of their own fields and tend to favor them; would we be surprised that a naturopath favors herbal medicine or an acupuncturist favors acupuncture? of course not -- what would be surprising is to find a naturopath who favors radiation, or a radiation oncologist who thinks that surgery is really the best way to go
Microsurgeons and radiosurgeons tend to have an out-of-date understanding of each other's fields:
* surgical doctors tend to cite statistics from radiation that go back a decade or two
* radiation doctors tend to cite statistics from surgery that go back a decade or two
* there is nothing malicious about this -- a good assessment on AN treatment rests on long-term follow up, so naturally the current long-term follow up looks at patients treated in recent decades; therefore it is understandable that each field's perception of the other may lag considerably -- it takes the passage of time for newer techniques to be fully evaluated and published
* the modern state of both radiosurgery and microsurgery compared to a decade or two ago is like comparing CDs to cassettes
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Hey Mark...Here's the bottom line...my mom is disabled. (She's in rehab now but will never get back to the person she was in May.) Prior to the gamma knife she was working six days a week, cooking and cleaning and living independently. She will never return home. She will be in a nursing home for the rest of her life. Yes, ask a surgeon for his or her opinion-it'll always be "cut." Our anger is that we asked all the questions...side effects, success rate for patients over the age of 65 etc. and the GK was painted as this miracle device. This forum, which is a good thing, is tremendously sad because we're all in this together. It's frustrating. If you ask me, we're all victims of a bait and switch scam. Or as my mom says, she's a "guinea pig." That wasn't on her To Do List.
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Hi Vincent
I'm sorry to hear your mother is still having a difficult time, who told you she would never be able to return home? Your mother is a little more than six months out, no? Most tumors shrink after some time, I wonder why they would have such a bleak outlook. Anyways, I don't think Mark meant to trivialize your mother's suffering, he was just pointing out that you may have read the 1/3 of gamma patients becoming disabled info incorrectly. That's not the case, however since your mother is having difficulty, to you it may seem 100% of gamma patients have difficult treatment, that's understandable. If her doctor made any gaurantees, that doctor is very dishonest. No treatment is guaranteed, for any medical condition. Even a simple tonsilectomy can go horribly wrong, but it's not common. I truly hope whomever gave you such a dim outlook for your mother is wrong, and she starts feeling better soon. Never say never. :)
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Hi Vincent
I have been reading your letters for a while now and have been hoping that your mom would start to feel better
soon .Her case following GK has been about the worst outcome that I have read about on any AN site since
my diagnosis in 2004 when I started my research into treatments . In my case acting on all the information that I
could find here in UK I decided to have GK for my 2.2 Cm AN in April 05. If I had thought that 31% of all persons having GK
would not be able to work again I would not have gone ahead with the treatment . My information was that the
treatment had a 97% success rate in either stopping the growth of shrinking the tumour. So far so good I have been
very lucky not to have any balance problems before or after GK nor have I had any bad headaches . there was a short
spell of neuralgia like headpain for which I was prescribed anti inflammatory painkillers which luckily worked and I also had
an MRI scan just to be sure which showed that there has not been any growth at all since my very first scan in 2004.
I have kept in touch with many other people here in UK who have had GK and not one has had any real bad side
effects . In worst cases it simply has not worked and they had to have surgery instead .In the end we can just make a decision based on the information that we can get from the professionals and various other sources like this site and remember that nothing is 100% guaranteed .
This of course is no comfort to you or anyone who finds that they are in the 3 % who have severe problems after GK.
It is early days yet for both your mom as well as for myself . I symphatise with you both and cannot imagine what you are
going through it must be like your worst nightmare . I sincerely hope that there is some hope for the future and that your moms condition alltough severe is just temporary and that in small stages she can return to her life as it was before GK .
Best regards Kat
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Hey Jamie and Kat:
Much thanks for the good thoughts. And I've a new word to add to my vocabulary-mastoiditis. Yeah, we were told that it could take up to 2 years to kill off the damn tumor, but the deafness (she wasn't before), the loss of balance (she was quite the steady senior)-all caught us quite by surprise. The gamma knife surgeon-quite respected and very well published-said that all of this would be temporary. Hey Doc, why don't you spend a day in my mom's bed. When I asked him about Decadron pyschosis he said he wasn't familiar with the drug's side effects. Hmmm. You prescribe a drug you don't even know...but in the same breath he mentioned that the weekend my mom was hospitalized so too was a younger patient at the local mental hospital. We-my mom and I-are in this tunnel...I can only describe it as...it's like one of those automated car washes. And the only time you see clear sky is when some 16 year old starts wiping down the car with a towel. We're stuck in the middle with the soap and the big brushes and no light. Also on Friday...the shunt needs to be reprogrammed. (I'm hoping it's only that and not additional surgery. Shunts only work about 50% of the time.) Mom can barely pull herself up in bed, she's not eating again. My new best friend is the Hydrocephalus Association. We don't have big money where Mom can have intensive therapy. (Daily OT and PT runs about $1500/day.) We're working class. We gotta play by Medicare's rules. I've become quite the bear on that front too. I've taken a leave from [attending] college. I've read that bad beginnings make for good endings. I don't know anymore. Perhaps our family should have flown over The Pond for a GK surgeon with better aim. I sincerely wish every member of this forum a heathy and happy 2006!
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Hi There. I'm so sorry to hear about your mom's struggles.
If this condition lasts for a significant time longer than couldn't they operate to take out the tumor? If ever there was a time to operate on an unsucessful radiation treatment then I think this is it! It would surely save your mom months or even years of problems.
just a thought.
Eve
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Hey Eve: Much thanks for putting on your thinking cap but ALL of my mom's woes originate from the gamma knife. The mastoiditis is from the gamma knife. The edema is from the gamma knife. The hydrocephalus is from the gamma knife. Very bad day today. She's stressed to the max and what isn't helping matters is the "family meeting" tomorrow at the rehab hospital and what her next step after rehab is-another nursing home. On the shunt front...she'll be seen next week by the neurosurgeon. Call me crazy but I want the doctor to do it and not hos assistant. No medical professional really gives a damn about my mom and in terms of neurosurgery...it's the equivalent of hernia surgery. (He actually said that.) It's not like it's a craniotomy. We ALL know there's a whole lot more glory and prestige in those. And this guy is supposed to be number one in the state.
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Vincent,
Our thoughts are with you and your mother and only hope that some improvements start to occur. There must be so much anger - why me?, hurt, distrust, depression etc rampaging through your family at present. All we can do is offer support and an e-shoulder for you to vent your frustrations and anger out to. i would agree that in this case, your mother should not be the training vehicle and she deserves only the best of medical attention.
I hope things do improve and if there is a glimmer of posiotiveness anywhere, grab it and use it as much as possible.
Larry
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Vincent,
I so sorry to hear you Mother is still not doing well. I am a 63 year old active woman. I raise horses, work 10 hours a day plus. Please do not under estimate your Mother. We are stronger than you think. I have reasearched surgery, GK and CK. Opted for CK. I am only a couple of weeks out and doing ok. Who know what the ultimate out come will be?
I truly understand the doctor thing. I had Dr. God who said I had a full life didn't I? I should not fear surgery if I was right with God. (did he mean the real God or himself?).
Next Dr. Ego who scared me so badly about radiation that I knew it could never be for me.
Then the radiation oncologist who said it was my decision. Surgery CK GK all were availabel to me. No promises, no suger coating.
Finally the neurosurgeon who does it both ways. No promises with either. I was told most all forms of treatment turn out reasonably well. On some occasions they go the other way. Any surgery or any treatment can.
Vincent, my husband's cousin had surgery for a midsized AN that is just as big a flop as your Mother's radiation. One surgery for the AN and 5 more opening the head and tummy to stop a spinal fluid leaks. Facial paralysis from repeated sugeries over a two year period. Eye sewn shut, surgery on the eye, memory loss, taste gone, walks with a cane and lost his ability to work. This has been a 4 year ordeal with him. He is not happy with the results. However, his life is not over. He is fishing, raising cattle, doing a little traveling. Not the life he planned. Just a life the he is adjusting to. This is not the expected out come and it should not have turned out this way.
Give your Mother a hug and some very loving encouraging words. Tell her we are all pulling for her and praying for her.
Believe me I am very bitter about some of the medical treatment I received. I was raised in the era where you did not question the doctors judgement. I ask all of the questions and even left a copy for the doctor to answer for me. None were ever answered. The next doctor answered a few.
The question was ask about surgery. Have you looked into that? There is a lady that posts on another site. I think she is Mona Lisa with another spellilng. I am sure some of the other posters keep track of her. She is very wiling to answer questions. She had hydro after fsr. Surgery a few months ago. Her story is a very touching one.
Be kind to yourself. The role of caregiver is a hard, hard role in life.
Sandy
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Larry and Sandy:
Thank you so much for your time and kind thoughts. Mom sends you both big hugs in return. In the meantime we learned at 4:00pm on Friday that she's heading to another nursing home by Tuesday of next week. Don't even get me going about ineffective social workers. They actually would have preferred her out on Saturday. Today I spent visiting 7 nursing homes (that offer rehab); five tomorrow. On Wednesday she's to have a shuntogram-radioactive contrast injected into the shunt and over a five hour period she's popped in for x-rays. Follow-up with the neurosurgeon on Friday. She's having second thoughts only because she doesn't have symptoms of shunt failure (i.e. vomiting, headaches, delusions). In the meantime her neurologist has her on Methylprednisol for five days. The neuro called me on Thursday and told me he's not really that hopeful (about this steroid and everything in general, but that he considers himself a "pretty good diagnostician") and gave his blessing for a second opinion. #$%^&%! I'm meeting with another neurologist on Monday; I've all of Mom's MRIs and CT scans, reports, op notes. The neuro shyly admitted that perhaps Mom does have radiation necrosis. Next step is going to an even bigger city for what will be a fourth opinion.
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So Mom's shuntogram's results are in and it appears to be working...but she, mentally (some confusion) and physically (really not eating all that much) is like when she was diagnosed with acute hydrocephalus. The neurosurgeon says according to her MRI from late December that there's no hydrocephalus (even though the report says she does-the radiologist neglected to mention in his report that a shunt was visible so we don't know who to believe anymore). Mom now also has a hernia (abdomen) from the shunt surgery. It's like the size of a lime and protruding a few inches out. She has a follow up visit with the neurosurgeon in three months. So in other words he considers the shunt surgery a success. Well my sisters and I don't. We're driving up to a big city next week for a consult with a radiation specialist. Mom's still dealing with vertigo, in another nursing home...it's so heartbreaking what she's willing to tolerate in fact what EVERYONE in the last chapter (of life) has to tolerate...a loss of privacy, living with strangers, cold toast, portion control (even when you're on the house diet). What she has lost since August (edema from the gamma knife) she will never regain.
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Dear Vincent
I wish you good luck on your quest to get more information and help for your mom next week . Your Mom is very lucky to have such a devoted son doing battle on her behalf. You are a hero ! I know from personal exeprience what it is like
to see a loved one change from an intelligent and capable person to a 77year old baby due to a stroke and having to go to a nursing home ,but that is another story . I hope and pray that things will improve for your mum but in the meanwhile do give her a hug from me as well .
Best Regards Kat
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Kat:
Thanks for the kind words. I just got home from the nursing home. That's a whole other conversation...about alternatives. Mom had a good day today...her PT used the word "progress," but then she came crashing down when she learned she has a good size cataract-the result from the Decadron used to treat the edema from the GK. It's exhausting being the cheerleader especially since I've always been the glass is half empty kinda guy. I tell her about my exchanges in this forum and she (and it's sick) takes comfort in knowing that she's not the only one out there who has suffered. She sends you a big hug right back.
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Hi Vincent
Good to hear that your moms condition is a little bit better if you do not take into consideration the cataract ! I am wondering how Decadron ever got past the trials and just how many people are having severe side effects .I can only
assume that it must be a lifesaver for some people where no other treatment is available . I know what you mean about
being a person for whom the class is half empty I am the same but luckily my husbands class is always half full so we balance
each other out . Try to take care of yourself now since it is exhausting mentally and physically to be the carer and cheerleader it is important to have some "you time" once in a while . I will be going on a holiday soon but I will
check these pages weekly just to see how everyone is getting on .
Best regards to you and your mom
Kat
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Hey Kat:
Just got home from The Other Home...it's strange to come back to the home that I grew up and for it to be so quiet. And I miss the smells-of Mom's pasta fagiola, her gravy (tomato sauce) simmering...and she does as well. Sometimes she'll rattle off a shopping list; it's one way I guess to ease her mind, to take her out of a nursing home where, as the social worker said today, she IS NOT one of them/the residents.
Safe travels. I hope your holiday involves blue skies and lots of good hearty food.
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HI Vincent
Just a last note before I fly across the pond to Florida . We have a small sailboat there which we bought before my AN
diagnosis with plans to sail slowly to the West Indies and maybe back to UK all a few months at the time over a couple of years . We have had to alter our plans a bit since sailing east is deservedly called the "Thorny path "with all prevailing winds
and currents against you and because of any possibility of my balance being affected after GK that plan just was not on .We then decided to have a short cruise to the Bahamas and then up the ICW to the Chesapeake Bay to store the boat there and wait till my next MRI before any long ocean crossings . Anyway the hurricane situation in Florida is getting worse and our insurance premiums and exesses are going through the roof. I feel fine but thought that it would be irresponsible of me to go ahead regardless and maybe feel all wobbly on and ocean passage weeks away from land . I am looking forward to the cruise and specially the ICW sailing in sheltered waters and hope to do a lot of sightseeing on the way .
I really hope that you will one day return to your moms home cooking and all that you have been through will seem like a
bad dream . The social worker was right your mom does not belong there ! How ever difficult it may seem you both must
think of it as temporary and try to keep your spirits up which I know must be easier said than done .
Hugs to you both
Kat