My Surgery was Cancelled at the 25th hour

General
1

Hi Family,

So on August 13th at 0800 I was supposed to have my Aneurysm coiled and stent placed. I was supposed to be at the hospital at 0600. At 0550 my cell phone rang. It was Dr Lucian Maidan. My wife answered first and he told her that he was going to have to cancel my surgery because he had three emergency patients that just came in. Then he said looking at my aneurysm he feared that he may cause a stroke during the procedure so he would like to hold off for 6-8 months and go from there. He then told her that he just now looked at my chart and made the decision then and there that he could possibly, actually a 5% chance he would cause a stroke during the procedure. I then took the phone and started talking to him he was mumbling backtracking and telling me that he wanted my aneurysm to grow much larger before he does anything about it. I am a 26 year veteran fire captain with most of that time as a paramedic saving peopleā€˜s lives with minimal equipment in an uncontrolled atmosphere on a daily basis. This doctor in a very controlled atmosphere that I never spoke with before my first angiogram Canceled my appointment because there was a 5% chance of a TIA stroke not a wide stroke but a dry stroke from the process. I know from my training that can be easily dealt with with thrombolytics and then I would be fine afterwards because I would be on medications like I am now. He told me he would call me on Monday he never did I tried to call his office and it was like trying to contact the president directly he has multiple layers of people that gotten away and made it to where I couldnā€™t even talk to his medical assistant until yesterday. My family history is one filled with sorrow my mom had an aneurysm rupture and it ruined her life yes this was quite sometime ago and things have changed but my family history is my family history. My wife just lost a family member to an Aneurysm.

On July 17 when I had my angiogram he wanted to do the full procedures in there after meeting him for the very first time in the pre-surgery room I never met with him over the computer face-to-face or anything but he wanted to do the entire procedure than in there without me being able to speak with my family first knowing weā€™re only doing the angiogram the day I was absolutely shocked he wanted to do the full procedure then in there on the 17th. How does one of the best surgeons in all of California go from never meeting me in the morning to do the full procedure 30 seconds after he talk to me without me being able to talk to my family about it first on the 17th and then on a planned surgical day to repair the aneurysm cancel 10 minutes before Iā€™m supposed to be at the hospital?

It is extremely frustrating to see a guy want to do the full surgery before heā€™s even seen what it looks like and then on the plan day back out. It is extremely frustrating to see a guy want to do the full surgery before heā€™s even seen what it looks like and then on the plan day back out. He never called me on Monday and he told me that he could refer me to someone else if Iā€™d like which is unbelievable and I am not as positive as I was before because now I have three different doctors arguing with each other telling me with an active aneurysm you canā€™t go to work you can go to work you canā€™t go to work you can go to work. I would never go to work under these circumstances as I could hurt myself my family or the general public if I were to have the worst thing happen.

Iā€™m still having a lot of memory loss from PRES and one Dr. thinks it could possibly be from them not flushing out the radioactive substance from the MRA. I really thought that after helping so many people after so many years that this was going to go very smoothly as it was but all it took was one in competent person to cancel something on the 25th hour to completely screw up everything thatā€™s happening with me. I have a family to support and I have a life to live I am not sure where to go or what to do but I do you know I will be calling the hospital administrator today because this was the most unprofessional thing Iā€™ve ever seen happened in my entire life in medical career thank God my wife was there to hear everything. Iā€™m sorry to rant but holy poo this is wrong.

Sorry for my behavior,

Rich

2

In my humble opinion you have nothing to be apologising for Captain.
Some medicos have a complete disconnect when it comes to the emotional rollercoaster the whole neurosurgical process can have. I understand that they need to have some separation to be able to undertake the procedure, but for us, the patients, that emotional disconnect is impossible. This is real and it is happening to us, not them. They deal with this sort of thing everyday, so changing what has been planned is not unusual, for them. But the psychological impact on us can be MASSIVE and I do question if the medicos have any clue how bad that can be. We all have lives to live, we put everything on hold to manage and deal with it all and they go ā€œOhh wellā€¦ā€ or ā€œLetā€™s wait and seeā€¦ā€ WHAT??? I have a timebomb in my head and their response is wait and see?? OMG!!! Sometimes I think these medicos need some education in human emotions and the impact of their decisions, it is not as simple as ā€˜Ohh wellā€¦ā€™, not at all.
I think itā€™s one of those things that we donā€™t know about until we have to live it and luckily, 99% of the population would have no clue and never will. But for those of us who do, it can be an absolute torment. So IMO you vent as much as you need and please, stop apologising for it.

Merl from the Moderator Support Team

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Thank you,

I guess Iā€™m pissed off because I pushed myself and all of my Firefighters HARD to be their best. I never quit on a citizen/patient in any situation and in a completely uncontrolled atmosphere on thousands of calls. I take pride in knowing I/WE treat every human being like they are family on every call. Either more resources (Medic units, air-ambulances) or to hold the hand of a scared man or woman. We do more in a random house or in a obliterated vehicle after a head on crash. I love my crew and we are a family. Above my office door is an abbreviation taken from the Wil Farrell movie ā€œSemi-Proā€ the quote is ā€œELEā€, everyone love everyone.

We have dropped off hundreds of pre-rupture or rupture patients. We knew time was everything and pushed hard to beat it. Same with TIAā€™s or wet strokes. In a completely uncontrollable atmosphere we stop at nothing to care for and promise to love everyone whom called 911. The feeling to fully be present and save a life or make a real difference is why I do what I do, itā€™s why I would die with a full heart for my Firefighters so they could continue to bravely and compassionately serve. I love my wife, our son and our amazing families, they are my foundation.

It crushed my family on August 13th when my pompous, unprofessional and obviously incompetent, not to mention an A$$hole cancelled my repair that he wanted to do on July 17th before he even met me or saw my Aneurysm with the scope. If it wasnā€™t for me saying ā€œIā€™m here for the first step exploratory, my family thinks Iā€™m here for a quick procedure ā€œ. The nurse agreed that his idea was a terrible idea without my family knowing. I was shocked then but even more so when he cancelled a week ago.

My mom had a 2mm Aneurysm at age 46. They told her to wait. A month later it burst at 3mm. She was a Nuro-ICU nurse and now she lives in a care home having 2-5 seizures a day.
Iā€™m 46 and my Aneurysm is 2mm, do the math as we share the same hereditary disease, PLD and a Aneurysm. I wonā€™t wait.

After I wrote this initial post I called my PCP and asked to be transferred to a different Surgeon. To my surprise I was contacted by the best Hospital in Northern California (UC Davis). They thought what happened was horrendous. God works in ways I will never question, he has kept me alive and safe and has provided peace and love when I needed it.

Iā€™m just a man. Iā€™m no different from anyone. My hope is that what I am experiencing will awaken the MDā€™s that have no idea how good they have it. Always in a cool, clean atmosphere filled with anything they need.

Iā€™d rather have a prepared, kind and generous Surgeon that is new than an elitist jackwagon that has ZERO bedside manner that could care less for their patients. When Iā€™m healed Iā€™m going to send a letter to MSJ CEO asking to have his prized Surgeon to work on my Engine Co. for 3 weeks, maybe, just maybe he will gain some humility, integrity and compassion.

I will be great, I will heal and I am grateful for you Merl and all of you, my family from the country. Be well, much love.

Rich

4

Hey Rich,

Some people may think Iā€™m being rude when I say this and if thatā€™s their perception thatā€™s fine by me BUT in my opinion, some medicos have the bedside manner of a house brick and thatā€™s being nice about it. As I say they need to have that emotional disconnect from the situation BUT they also need to have a touch of empathy and understanding for their patients and many donā€™t.

For many years I worked in a profession where a degree was preferable but supportive human interaction was a must. We had people with multiple degrees and had more ā€˜book knowledgeā€™ on every subject known, but their people skills were nil. No book can tell us how to deal with an irate client, I have to deal with it here and now to reduce the tension, reduce the stress and calm the situation. The name they give it now is ā€˜Managing Difficult Behavioursā€™ for us it was ā€˜just deal with itā€™. That doesnā€™t come from a book. University qualified medicos have their piece of paper and they have their knowledge, but they have never been on this side of the equation. If they had they may take a differing approach, if they truly knew the stresses involved they possibly wouldnā€™t be so dismissive. But something I have found is that you canā€™t tell people who think they know it all. I know this because Iā€™ve tried. In fact, I had a neuro tell me ā€˜Iā€™m the dr, Iā€™ve done years of study. So, I know. You? youā€™re just the patient, you wouldnā€™t knowā€¦ā€™, my wife was with me at the appointment which was probably a good thing cos I was ready to clamber over his desk and punch him in the nose, the arrogant sod. This occurred earlier on in my neuro journey and have since seen more dr/specialists/professors than I can count on my fingers (and toes) and have found that ā€˜know-it-allā€™ attitude is rather common in the medical arena. Because their knowledge is so refined they often have very little idea of the world outside of their expertise. If they were ever to be put in situation ā€˜Xā€™ which needs to be dealt with and managed ā€˜NOWā€™, not tomorrow, not next week. No planning, just manage it ā€˜NOWā€™, they couldnā€™t. Thatā€™s outside of their realm.
I could go on, but itā€™s probably better I donā€™t :roll_eyes: Lets just say I know what you mean.

At least itā€™s being looked at now, and thatā€™s about the best thing I can say. But I can assure you, you certainly are not the only one who has had this occur.

Merl from the Moderator Support Team

5

Hey Captain Rich! Iā€™m always appalled when professionals have a grandiose personality, Iā€™ve met several over the years. They can really do more damage than good IMHO. UC Davis is a really fine facility, you may also want to look at UCSF if youā€™re not satisfied with Davis. Iā€™m not sure if San Fran is as good as they used to be, I hope so.

If you donā€™t trust the neurosurgeon you have, itā€™s a really good sign you shouldnā€™t be under their care. With your medical experience, you know the language, you know the walls they put up to protect themselves and you have learned to get around all that. If I canā€™t get around a doctorā€™s emotional wall, I donā€™t need that doctor. Since I ruptured, itā€™s very easy to tell them point blank. My Neurosurgeon says I keep her humble lol. I wouldnā€™t have anyone else in my brainā€¦she gets me if you know what I mean.

Unlike you, I had never heard of a brain aneurysm before I ruptured. After the year I had promised Dr, Wolfe that I would wait to research, I saw most of the studies referring to the ISUIA, then after several months I found the international study on ruptured aneurysms which for some reason is not as popular as it challenges the ISUIA in Aneurysm size that can rupture. According to the unruptured study, your mother and I should have never ruptured. Obviously we both did. Iā€™m sorry your mom suffers so much after helping so many folks.

I have had to wait several times on a scheduled angiogram as Dr. Quintero-Wolfe dealt with emergencies, I never minded because I was once one of her emergencies. One time it was a five year old child, the first thing I asked when she came into the procedure room apologizing was if the child was okay. Happy to report he came through with flying colors! I have never to my knowledge been delayed more than an hour if that for a scheduled coiling. It makes little sense if youā€™ve been scheduled and he knows he has 3 emergencies. Donā€™t the facilities usually have doctors that cover emergencies while others are doing their rotation on scheduled procedures? Itā€™s how I think itā€™s usually done at Wake or at least it seems that way. Iā€™m fortunate enough that Dr, Wolfe is also a Pediatric Neurosurgeon. I would put me on the back burner for any child.

Iā€™m rambling, I apologize. We had quite the excitement yesterday when the power pole with the transformer almost came down on a school bus. Lost power for the best part of the day once they shut it off. Today I think itā€™s hilarious that the brain damaged person was the one to suggest the driver back up about 200-300ā€™ and turn around in the neighborā€™s driveway roflol. The driver did a superb job!

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hi. you might also check what type of aneurysm your mom has and you have? Saccular is easy to get ruptured than fusiform. Then also the location of aneurysm.

Wish you the best!

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Hi Captain - Iā€™m sorry to hear about what happened to your mum and your experience with your neurosurgeon. Iā€™ve heard them being called ā€˜a different breedā€™. They just think differently to the rest of us. Wonder if itā€™s because they have to switch off to do the job they have to do but that doesnā€™t mean they should be robots.
Hope you have the strength to stay positive.
I also have a 2mm aneurysm and my mum died from hers. My dad died from a ruptured AVM. Iā€™m a scaredy cat and opted for the ā€˜wait and seeā€™ option.
Where is your one located?

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I trusted the dr. And hospitalā€¦donā€™t do that. In 2005, I was diagnosed with a 6mm Annie. Blue shield dropped me the next month and finally I got insurance @$1600 + pills + copays=$2500/month. 10 months later they cut a whole in my head (60, self employed) and worked till the day before.i lived alone. Home in 1week. Donā€™t know how I got there but the pain was excruciating and 1 darvocet twice a day and steroids.When I finally became conscious I realized I couldnā€™t read, couldnā€™t dial a phone right,ā€¦I was never told that had a large stroke in the frontal lobe and lumbar regionā€¦executive brain function area.
Well, i thought this would be my life. My family wasnā€™t told and I didnā€™t get much respect or help.
Almost 2 years later my friendā€™s ex-husband,a neurologist, got the surgery report and follow up and told me ā€œthatā€™s some stroke you hadā€,
I never had 1 day of therapy and was on my own. I
Never had the follow up and this dr told the dr,hospital to do the necessary tests.
I had to do it all alone. After 12.5 years I actually got to talk the Drā€¦he knew I Would have a stroke heā€™d have to sacrifice the left artery. Iā€™m left handed. I never knew and never got an opportunity to get a 2nd opinion.
I-can pass for normal but every day itā€™s something that isnā€™t right.
Insurances did drop us and I miss me.
Have someone that can legally support you and knows how things work.For 12 years I have had no neurologist and if there is another aneurysm I donā€™t want to know.
I also fellā€¦cracked 2 leg bones,tore my meniscus and ACLā€¦took 2.5 months to get diagnosisā€¦too late.
This is a good hospitalā€¦ha,ha.