MRI Galore

• By ShenValley
• Reply 3423107
• October 1, 2012 at 10:00 pm
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Hi Inrd,
OHHHHHH heck yes! You absolutely must keep track of appts, MRIs, paperwork, meds, etc.
YOU are your best advocate; don't entrust that to anyone at the doctor's offices.
Heck, we had an appt set months down the road. We waited as though that date had a bulls eye on it! Then, a week before the appointment I got a call from the office asking why we hadn't shown up.....W-H-A-T?!?!?!?!!!! Oh, yeah, they changed the date of the appointment and FORGOT TO TELL ME!!!
During our appt last week (the one that finally, after 5 months, gave us our diagnosis....) we were told they were going to do some in-patient testing on my husband's heart and eyes. So far, we haven't heard ANYTHING. I will give it another week and start squeaking the wheel! Do you want to bet it's another administrative hose-up?????
I hope you are keeping track of all your paperwork, too. Follow the tips from the ATBA and make sure you keep it organized in a binder. Go out and buy 3-hole-punched sheets that hold CDs; keep those in your binder, too. Make a habit of getting any MRI or CT scan BEFORE you leave from the appointment; put it in your binder!!!
My husband made the CARDINAL mistake of leaving our documentation (paper & CDs) with a doc for a 2nd opinion. It took FOREVER to get it all back even when we gave them our FedEx number!!! LEARN FROM OUR MISTAKE.....NEVER, EVER, EVER do it! If they really want it, they can have someone make copies on the spot.
I don't think I've ever held a job that would allow this kind of nonsense to take place. But these offices seem to have it down pat.....
:-)

• By 7monthsoutwife
• Reply 3423606
• October 2, 2012 at 5:24 am
• Report post

Yes, noone called us or checked whether we did the first follow up mri post craniotomy. 7 mnths later we are just getting the results,long story there, and we almost gave up tryoing to get the appointment made. It took a month of runarounds swotching doctors, referrals going back and forth across state lines, us driving to places we ddint need to drive for the mris when we coulod get them locally, confusoin about who has what system to read the mris and transfer them and wheher so and so can read them electronically or whehter we have to get disk made an don and on..And these are the people that got ticked when we didnt lay my husband on thet table the following day of the biopsy finding tumou reven though we knew it would cause him to lose The use of hand and possibly leg, no biggy.. Once it the tumour that is ) is out, they arent worried about gettng sued at last that is the sense we got, especially from reading the "progress notes". Anyone done that? Its quite hilarious actually. The radiologist finding are very scientifc, using works such as incidcative of and associated with, making judgements when tey can and underatandin grey arers inconclusive things and definite things. They seem honest nd straightforward. Th dottor or neruosurgeons progress notes on the other hadn however, refer to the caretaker and not able to be trusted to make correct , "timely( i.e. tomorrow, in his mind) when the radiologist looked at the mri a few days before surgery aonth later (had trouble getting second aopinion becasue this guy wouldnt even tell us where to go for that, red flag there but we had no choice, rural area) , nothing had changed a bit since he was diagnose (but that was still bad, beacsue yes it was bad) and none of the new dymptoms my husband had were because by the imaginary "growth of the tumour" that the neruosurgeon ranted about as he paced up and donw the hall mad ;that we changed the surgery appointment again( ice storm coming, sno tires must be put on th prevent death since I havent fnished th advanced diretive, roads CLOSED from my house to furgery hospital one hour away, duahgter has to come its her dad hello, maybe I might beed to actually get there to be with my husband for brain surgery but nooooooo our kidding right. They literally expected to just have nursi ie nurse whelel him over there all by himself and get his head cut open, and operatied on. Unbelievable.The radiologist explained whcih things porbably caue which new sumptoms and it all m ade sence, it was NOT BECASUE THE tumour had grown (although we duh, realized they do, ewhich is why my husband was actually laying in that hosptal bed preparing for surgery becaue duh, we decided to get surgery instead of the herbal potion he was imagining this wife gining her husband. Im laughing now but it was not at all funny. So, in a hurry to operate, not in a hurry to follow up. In fact it was our home health nurse upon return home at tour local community hospital who was the only one that nagged us about follow-ups and she even understood., also our rehab doctor from the hospital did ask whether we had the mri, becaue he doesnt want people readmitted, his job is to REHABILITAE, not READMIT.t. But not to jusge any surgeion,they are the guys saves lots of lives including car accident vistims so I shouldnt judge so maybe thats why they cant figure out what the bilg deal is about brain surgery, plus theyr doing it remote control, its not THEIR right arm JOB CAREER and ability to actually MOVE THE wheelchair. Sorry, still hurts,and my hsuband never got over the diegnosis much faster than gtting over the attitide problems towards the both of us. its just that so much of it is illogical. Anyway our home health nurse at t least told us.whichh ones were most important instead of just going down the list,
. Again I smell lawsuit porevntion. If somthing happend, they can say I told them to do it now and wifey says no, or somting ridicuous. LIke I really wat a 4 centimeter grafefruit to remain in my hisbands head, but no your not taking it out tomorrow, my mom even got set up several weeks forward to prepare for hip surgery, bit complicated preperations making sure all setails set up including d transportation and support and whos helping her.( which obvioulsly makes a diference in the recovery if you read anything about brain tumpurs as well as their conditoin going into surgery very much influencing survival rate. They pretended it was emergency surgery when no, Id say pretty important surgery, whith the option of not having it at all if youi were in your late 70s or something. But no, put him on the table now.was the doctors attitude In my opinion, its all up to us, I agree with the poster.. But yes bue responsible. As I have said, we should lobby though, for a system like the veterinarian has (rabies shots,anyone?, parvo, fido is due!) IF they can do it, so can these guys, no excuses, Im sure there are less receptionistst there. Anyway, meanwhile, yes schedule your own, keep meticuous paperwork and keep track of all the cell phone calls to prove youve been getting the runaround. FInd a synpathetic receptionsist (ours is the friendly g.p.,ewho may not know brain tumours very well but he sure weill writea referral asap whenver we ask, becasue he knows we woldnt ask for one unless we really needed it,Another words he gets that we just spent two months in the hospital recovering from brain surgery and why in the world would we want another speech referral or mri or anything unless we really needed it badly. The rest of the schedulers, verys slow, very confused about who we are, when were coming and why like you said. The phone is my constant companion and some receptionists really hate the sound of my voice, but thats becasue the medical system is very slow to learn that we are consumers, unless theyve actually had this happen to them. A good receptionists or nurse (if you can actually get her on the phone, understands this is "health care" not doctor god servvant do what he says care. No offense doc, you did fabulous in surgery. We did fill out a very comprhensive survey they sent us at the neurosicence center and believ me we had to attach pages, many people we met in the hallways had similar experiences, and we all agreed to get it on paper so the head of the placce could work to imporve it for the next person. Thats how changes can be made in a positive way, I certainly hope so for the next Joe or Jill.

• By briggs
• Reply 3424014 · In reply to 3423606 by 7monthsoutwife
• October 2, 2012 at 9:03 am
• Report post

I have to call the doctor every three months,and have him schedule the appointment. I thought I was the only one who did this. The bill from the doctor I do not have to schedule. Kathy, Toms wife

• By ShenValley
• Reply 3424229 · In reply to 3424014 by briggs
• October 2, 2012 at 10:05 am
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Oh, Kathy, touche!
We had such a bad experience at Johns Hopkins (yep, the same one that is rated #1 for neurology & neurosurgery) when we tried to get a 2nd opinion. They REQUIRE all info upfront. We got there early and the doc was 2+ hours LATE.....AND HAD NOT DONE HIS HOMEWORK....he hadn't read anything, didn't know who we saw, didn't know where we had been, hadn't looked at any of the tests, results, CTs or MRIs. (Ooops, that was probably my fault. I probably should have called him the night before and checked to make sure he did his homework.....the way I need to with my 8-year-old).
But they didn't blink an eye while presenting the $675 bill for that 2nd opinion!!!!!!!

• By Andreas (Inactive)
• Reply 3427946
• October 3, 2012 at 1:15 pm
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Well girls welcome to the American Health care system and the life of GBM! If you don't learn to keep EVERY piece of paper and EVERY file where you can find it immediately you will always be a day late and a dollar short. As a care giver you have to learn to do it all. You are the doctor, watching every symptom and gageing the effect of the drugs, you learn to read MRI scans and CT scans, you know the results of all blood work because if something is off and THEY miss it your loved one pays a high price, you are the receptiorist booking appointments and following thru on paperwork, You are the finance person fighting it out for every dime the insurance company said they were going to pay but doesnt' you are the file clerk trying to keep all the records, perscriptions and billss in order, you are the pharacist, trying to get the medications correct on a daily basis and making sure they get taken at the right time. you are the cook, your the bottle washer, you are the phycical therapist, you are the psychologist, you are the cheerleader, you are the taxi driver fighting traffic to get to apponitments lugging the wheel chair because there's no one to help you life it into the car. You get copies of EVERY medical record you can and you file them correctly because they could help in an emergency. You get the finances straight at the bank, you get power of attourney, You get living wills in order, becasue if you don't you WILL the pay the price.
You will do it al!!!!!!!!!!l and if you don't that person looking across from you or laying in the hospital bed losing their life is the one who will pay first. You will be exhausted, overwhelmed, half crazy but you must be vigilant at all times because if you don't care the medical system certainly isn't going to. They get their money up front whether you live of die. When you're dead and gone they will have 5 more standing in line behind you. This is the hardest thing you will ever do this i can garuntee and when it's finally over you will still be doing it-- only your house will be empty but the bills will keep coming. Always watch! And never assume anyone is going to just "help you" ot that "they will get it right" Fatal mistake people. Wish you all the best, Ty

• By lvcyn
• Reply 3430320
• October 4, 2012 at 10:52 am
• Report post

How powerful ! You are correct, myself personally I don't have my things in order. Now following surgery I don't recall due to damage from the almighty knife... How could ever guess and digest our future? I will try to gather my life, where I can and how I can. I thank our higher power AKA my GOD for this moment that I'm given more time on this planet.

• By Andreas (Inactive)
• Reply 3431775
• October 4, 2012 at 7:36 pm
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Ivcyn time is a very precarious thing so get as much in order as you can. Do a little bit each day and get someone to help you. Ty

• By 7monthsoutwife
• Reply 3432519
• October 5, 2012 at 3:21 am
• Report post

Andreas, ou are so right about this. It is hard but necessary and I dont know how d) DONT canyone who doesnt have a sppuse could do all this alone. Yo hae summed up my exact ciurrent job description to a tee and I almost laughted today when the local librairian who sees me and knkows my husband is "recomvering" from Brain surgery asked whether I was out and about to see the lates event at the library. Laughing because they just cant imageine. I saied no thats a great program but its 4;30 and I have 5 other critical appointemets and calls in the next hours, but haey glad you guys do that program. You know it. The papers yes, this week the choices were, follow up on the seizure med appintment where he also discussed the mri that we havent got the nerugosurgeion to read yet, or B? get the referral for the reevaluaton for an upnpaid speech appoitment since the insurance ran out for the yuear now that he catn talk anymore again , or c) cancael ot again since its in a different direction farthr away wihichmeans I cant get that 30minute walk to keep alive here, orD) DONT cancel that rescheduled appt. with the free consult lawyer that was nice enouigh to squeee in the will planning, power of attorney session even though we had just seperated from work alreayd he heard brain tumour and will and thought oh year lets go be nice to them. So, yes, Andread your right we picked D and its the right thing to do like you know. I will sleep better the guy ran us though all the what ifs that I lose sleep over. Yes thery medical syatem,are nice but yes they absolutely have no vested intereste in what me (person withou power of attorney yet, was supposed to do in January, been kind of busy like lya know) has to say BAout whtehr my husband can cactually talk or undrestand anything,etc. etc. Last experience with this the eveil doctor form Germany " inform me husband hae serious condition" and had seven coial workers in the room to inform me. (we were on our way to the esecond opinion at ohsu so yeah I kind of l ike, knew this fact already ) t hey did not listen to a word I said and only listened to his groans which they assumed wer from the tumour they ewer so righlty terrified of not realizing it was becasue he just had 3 grandmals in a day and was dopoed up and oculdnt talk)fSO, we jiust repriorirze from very critical to hypercritical to critical to kind of critical occasionally important back to critical until every t and line is dotted ad signed. Its exhausting bu;t necessary. I also do not have a backup, it is me and will be me in the end. The lawyer cofirmed all my fears and onlu elleviated a few concerns about my daghter and where she goes in the what if I die hit by a truck scenario and hes gone ect. Other than that, all this stuff is so critical. Many times during the hospital stahy if I ven kust missed a beat (like didint get there in time when he was borderline or someting, the whelel jus tstarted falling off. Talk bout pressre. The only thing Ive foun d is that I try to stop for 10 to 20 minutes per day and just close my eyes to see what im forgetting that was incoming. You know theres more icmoing, even after they die, I can only imagine it just continues. That and I protect my sleep and a littel bit of exercise so I can make good decisions.CLinto said that Monica bad decision thing was beacuse he didnt get enough sleep on a regular basis. Well for you and me, we can and couldnt afford to make anhy ba d decisions , theres moree at stake than a marriage to Hillary.So. Tomorrow, its get the form, the exact one he recommeded, get that doen and notarized so I can deal with hospital a and b, then by next week the rest of the advaned directibe for th other state (our local haspital has a different one and its not valid at the other one he goes to becuase its acrsos stare lies, we live near the border, that kind of thing.) THings like hyou seay. people find out on the fluy in ery ba bad circumstances. So as my husband loses his speech and is getgtingwierder by the minute cognitiely im having him nod away to everythin g webe talked about and getting it all on the right papers. HTen the esate and will and guardianship stuff in that order and the seizure med p hone call to see if it was bad levels, reschedule the ot bacueseto a home eval is important to reevalutate if I CAN LEAVE him alone or not, big issue there. BUt what does it all matter. We are doing all these things and why becuase we loe them. THank for your support for confirming my job descripton. I ho pe you can dig deep and carry on ebvery day. Thank you for taking the time to help others despite your hardships. I feel that noone understand this burden. but how could they. I never gabe it a thought exept tfor aolfer spouses like my mom taking care of my parkinsongs dad at home for a year, soething hard, but normal and expencted,though not fu, he had a very ery full life and there was a beautiful celebration ( no hospice is not pretty , never waws never will be, not sure wy peple think so but maybe we just had a bad expeiecen there) so thanks Andreas. htruth is power no matter how painful. Better to prepare ourselves. .

• By Janacoco
• Reply 3432799
• October 5, 2012 at 8:22 am
• Report post

Everyone,
These horrible reports hit me like a brick in the face. When someone (or someone's loved one) is facing brain cancer, for Heaven's sake, they should not have to also face administrative oopsies or downright incompetence.

For whomever has within their reach the Sammons Cancer Center at the Baylor University Hospital, Dallas, Texas - I'd like to seriously encourage you to go there. Not only has my son received what I would call textbook perfect, absolutely professional, clockwork care, but I have an anecdote that proves these people have their act together.

My son's radiation onolcogist was recently on local TV announcing the establishment of a $105 million proton radiation facility in Dallas and we wanted to see if we could catch him for a second just to kid him about now being a TV rock star. Note that we had not seen this doctor since last December and he was not expecting us. As luck would have it, we caught him in the hallway. He did not ask how my son was doing - he didn't have to. He knew exactly what my son's condition was, had seen his latest MRIs, had been in contact with my son's chemo oncologist a couple of weeks earlier about my son's case. He knew it all. Let me tell you, I walked away deeply impressed with these very doctors, who are not only very competent in their own speciality, but have clearly have figured out how to team up against brain cancer. Little wonder that my son is doing so well against this terrible disease.

Not only would I step in front of a fleet of speeding buses for any one of my son's doctors, but I recommend that cancer center without any reservations to anyone who can get there.

• By ShenValley
• Reply 3433038 · In reply to 3432799 by Janacoco
• October 5, 2012 at 9:28 am
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Woo hoo, Janacoco!!
It is refreshing to hear of such a great facility. I'd be there tomorrow if we didn't live in Virginia!
We have found a true mixed bag.
Interestingly enough, if you have a heart issue, you see a cardiologist. Eyes = ophthalmologist. Weight = dietician.
But brain tumor is a multi-diciplinary team that always includes a neurosurgeon. Good cutters are not necessarily good diagnosticians. They are often in the driver's seat AS the diagnostician when sometimes they should just stick to cutting!
We had a team at UVA that included one of the finest neurosurgeons + endocrinologists in the world. It appears they misdiagnosed. That being said, we may use the neurosurgeon if we do surgery (don't want to cut off our nose to spite our face!).
The multi-diciplinary Tumor Board at Johns Hopkins had to over-ride the diagnosis of the Director of the Brain Tumor Center (a neurosurgeon) to get a correct diagnosis to us. SERIOUSLY?! And US News & World Report lists them as #1 for neurology & neurosurgery! Trust me, we saw TERRIBLE, disrespectful care happening there & my husband would have to be dragged back there for care.
The NIH team was johnny-on-the-spot in regard to diagnosis but, being a government-run facility, it takes FOREVER to get anything done. It takes WEEKS to schedule an appointment and when scheduled, it will be in a few months. It takes OVER A MONTH to get test results. Also, their docs & nurses are some of the BEST I've ever seen and their admin staff is some of the WORST!
Appears to be the norm & you have found a GEM! Good for you!!!!!

• By briggs
• Reply 3433225 · In reply to 3433038 by ShenValley
• October 5, 2012 at 10:28 am
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Our surgeon from John Hopkins was wonderful,got all the tumor,and saved my husbands life. We will always be thankful for his gift. We have to have our MRIs elsewhere, because of the distance. We still send the MRI to Baltimore to be checked,Our experience with John Hopkins has been outstanding. Kathy, Toms wife

• By ShenValley
• Reply 3433376 · In reply to 3433225 by briggs
• October 5, 2012 at 11:14 am
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Hi Kathy,
I'm glad you had a great experience at JH. Ours was sooo bad and very unexpected as we have used JH many times in the past with 5-star care. Additionally, our son has been following Ben Carson's career as he wants to be a neurosurgeon so it was disappointing on many levels!
Who was your surgeon?
Kelly

• By 7monthsoutwife
• Reply 3452062
• October 12, 2012 at 7:24 am
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These discrepenceis are recentlhy explained recentlyh veryh wellin consumers reports review of what the raintgs of hospitals actuallyh really means. Wait I mean the usa today acritcle abut the siffrent ratings of hospitals, including the oonsjmer reports ratigs vs the us news and wrold reports. Usa today does a fabulous ob of explaining why your getting all these mixed bags of results. And why my hospital where the brain tumour was removed for my husband kadlec MEdical center in Richland Wasington in the middle of a huge sprqling big city in the middle of the deset near a giant nuclear plant thas eing closed downtheh middle of nowhere that you giys have never heard of id ratied top 10 in the us (uses planetree best practices syetms) And thank you, whoeber just said t hat about neurosurgs vs. diagnosi. Sensed that so far, which is why we only let hin touch my husbands head with the scalpel and try to go to lots of other places for all the other stuff, inclding diagnosis. He believe he is the god of diagnosis and evryone knows (inclding the resto of the medical commnnity ) that he is NOT. but he will believe he is. But, its ture hthat actual diagnoss may not be always relevant beacuse two diagnoses can be similar and the treatment would probel be about the same such as our maybe its astrocyma 3 (the radioloist) its glabiostoma 4 (absolutely the nureosurgions said) Now that ists gone and come back the radiolist thinks thats an atrocyma and the neuro surgeow will just keep telling us hes going to die and it doesnt matter. Well thats gkind of true and man of the surgeries nd treatment plans ate ;the same een if the diagnosis is slightly different. we ahd to go ahead with getting it outm no matter what theywanted to call it. Its something in oyour brain pressing on things and that in itself is just like a bullet in there, casing all kinds of poeblems. Its interesting this focus ot thecancer itself. I see it as just STUSFF in the brain, itsa ll bad. And that arizona gabby lady had all the same problems as my hsband and it was a bullet not cancer, so really thes neruosurgiosn do there best, its the results of this brain thing that caseu all our woes along with this administrative mess. Id like to email all these comments to my realirves who dont understand why im so so busy just caretaking all day. No, im on the phone and wish i was scaretaking more. Well gott go make those calls. Take care. Do take the time to complain and fill ou those how we doing forms. It wiell help the next person it reallhy will. ERvthing we have today is porbably becuase somene fixed osmething or copmlained. before us, so stiep up and whine fomrall as well i suggest. It sure feels good to whine informally here though smiley face..

• By Ming59
• Reply 3456798 · In reply to 3424014 by briggs
• October 14, 2012 at 7:49 am
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Hi Everybody, please help with information, in may 25 2011 ,I had craniotomy .i still have remnant tumor of petroclival meningioma.
So far, MRI shows my tumor nt yet grow.right now, I still have half face weakness(bel palsy).
Yet my neuro surgeon push me for gamma knife ASAP. He suggested, gamma knife is the best treatment for my remnant tumor.
When I sought second opinion to oncologist, oncologist suggest fractionated radiotherapy is the safest way for treatment remnant tumor.

I was so confused, I want to seek opinion to John Hopkins hospital.anybody can help me with the information whose the good DR there
Please help with the information,since iam not living in USA.

Thanx for the help.

Mn59.

• By Andreas (Inactive)
• Reply 3457404
• October 14, 2012 at 12:15 pm
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Don't know John Hopkins but EXCELLENT Neuro oncologist at Northwestern Hospital in Chicago, Dr Jeff Raizer. Very nice, very helpful, VERY SMART That's all I have, Ty

• By Ming59
• Reply 3459040 · In reply to 3427946 by Andreas
• October 15, 2012 at 4:44 am
• Report post

Thanx lot for your info Andreas.

• By Firefighter1110
• Reply 3459390
• October 15, 2012 at 9:12 am
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It’s critical that you take charge of your own health care including scheduling MRI’s. One critical factor I overlooked was the ICD-9 code placed on the order for the MRI by your Dr. My Wife has an Epidermoid tumor (benign) and has gone through many MRI’s at the same facility since Oct. 2004. Two years ago her MRI ICD-9 code was 191.0 for a malignant brain neoplasm. This is how the Radiologist looked at it and even called it malignant in the final report. All of her previous MRI reports are called benign epidermoid. It should have been coded 225.0 for a benign neoplasm of the brain. We now read the order prior to the MRI to insure the code reads 225.0 and have also insisted the same Radiologist read the MRI. Try changing this once it goes through the system…that was difficult even when they make the mistake. Take charge of your own health!!

• By ShenValley
• Reply 3459514 · In reply to 3459390 by Firefighter1110
• October 15, 2012 at 9:59 am
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Hi Firefighter!
I'm curious about your wife's Epidermoid as my husband was recently diagnosed with a Dermoid; you are probably aware they are somewhat similar.
My husband's is inoperable (basically) and we are watching it for now. The docs have said if it shows some characteristics of a different tumor they may change the diagnosis.
Did they biopsy your wife's tumor or diagnose thru non-invasive testing?
Has her's grown?
Is there PROACTIVE treatment that works on these???
I'm so glad you posted. These tumors are a bit rare so finding someone in the same boat (or similar) has been difficult!
I look forward to your response.
Kelly