Doctor leaving Country 2 months after implanting SCS - Question about future care
 

Hello all,

Does anyone have experience with finding a new doctor to monitor their SCS after it was implanted by another physician? I feel duped. My SCS is working great as I go into my 6th day post op but, I just learned that my surgeon will be leaving the UW, Seattle and heading to Canada in September. I feel duped in that I was not given this crucial piece of information prior to receiving the implant and wonder if another physician will not be as eager to accept and continue care/monitoring since they were not the one who received $$ for placing it. I've read on this board that doctors receive some type of a bonus from the manufacturer for placing these and if that is true then I think it would make finding another doctor difficult.. so sad.

I thought another physician from the same practice would take over my care but, I then learned they are referring all patients to another hospital out side of our University. I am worried, angry and utterly frustrated as many of you can imagine. What irks me the most is that I consulted with 3 physicians and ultimately chose this particular doctor because of his expertise and the high regard another physician offered. I would have NEVER went with this doctor if this information would have been given to me. Ugh...

If anyone has any words of wisdom or has been through something similar please, please share.

Wishing everyone the best day possible!

Thanks in advance,
Tessa

ONE who is THERE
 

But then I digress. I was rather enjoying the care provided by my surgeon.....one and the same who fired me and all other patients who are Medicare patients in a move toward better profitability for his suburban Denver medical practice. I was exorcised. Angry. Fuming. Feeling abandoned, and I now figure.......FINE, gotta find someone who will care for me if this device dies. I feel your angst..... right now, presently, in a very real way Tessa.

The thing is, dox do make business decisions, and obviously your med practice made decisions which they felt compelled to pursue. Mine made his business decision. Thing is, regardless how his hands are skilled, being so cut off, I will never lend a recommendation to someone to make use of his practice again....... and a good many people do ask me.

Feeling for you Tessa, really feeling for you, :hug:

I find it very strange how the medical
doctors sellers whoever involved
but not the hospital way WRONG
WRONG WRONG
Doctors always have backup
In case of emergency

SOMEONE WHO CARES

Mark56,

I remember a while back reading this particular part of your story and thinking how horrible it was to treat you in that way. I remember thanking God at the time how thankful I am that my injuries and surgeries were not the result of a WC claim. My injuries are still the fault of another person's negligence but thankfully not WC. I feel blessed very blessed to have one of the best medical insurance plans for which I have been able to keep thanks to the kindness of my employer and COBRA.

However - this lack of patient concern and acceptance of $$ from the manufacturer knowing full well he would not be around to follow on in my care is IMO FRAUD!! As a patient it is my responsibility to be honest with my symptoms, pain levels, side effects, and benefits of treatments being offered as well as do my own due diligence prior to agreeing to any treatments being offered throughout the course of care. Why, Why didn't this doctor by his own integrity, morals or standard of care committed to my care in the same way?

The doctor new I was concerned about my long term care, I had addressed this on several occasions even bringing my husband in for a second consult visit to discuss my concerns. And HE hasn't even told me yet, I found out through his nurse just this Friday 5 days after he did my implant. It isn't even a private practice office he works with, it our major University Hospital in Seattle so I can't believe he/they didn't know anything of his plans just 5 days earlier.. so, so wrong. (thanks for letting me rant)

Medical Oath??? I think he forgot the basic principles of this somewhere along the line.

Mark56 - I will follow your lead in not recommending this doctor to anyone.. even across boarders. Thankfully the internet makes this possible no matter how far this uncaring doctor travels.

Again, thanks for allowing me to vent. I will now put my faith in God and trust that he will help steer me to a physician who will selflessly care for me and my SCS because that is why he/she became a care provider in the first place.

I pray that this uncaring doctor will change his ways and I forgive his lack of honor & integrity.

God bless you all,
Tessa

Zoo....I am in Seattle as well. What make/model is your SCS? My pain doc deals mainly (quite possibly only) with Boston Sci units. I believe she has a bit of a waiting list - as do most docs in Washington thanks to our 'wonderful' lawmakers, but it might be an option for you if you no not where else to go. PM me if you would like her info...

-Coral

my experience
 

Hi Tessa,
I am so sorry you have had this experience. I consider it unethical…it happened to me and it certainly did harm.
At six weeks post op I went in for my check up and was told my surgeon had left the office and one of the other docs in the practice would see me. I am in shock…the entire office is scattered as it had just happened that morning and the waiting room was full of SCS patients. I met the new doc…he listened intently…noted I was in extreme pain and wrote me another 30 days of Loritab. None of the office personal would talk to me about my surgeon.
Four weeks later I go in and the second doc who had taken my case has left the practice…I now get to see the third doctor who says I was misdiagnosed in the very beginning and wants to do another surgery…he writes another 30 days of Loritab and leaves…I am still in way too much pain…want this crap out of me and he says that is not an option.
Four weeks later my case has settled …my LOP is no longer in effect…I need more meds…this same office agrees to see me once more for $175.00. I get into the office…in the room and they tell me they need $300.00 before the doctor will walk in…I left with EVERY ONE of my records right there on the spot.…I beg the receptionist ….long story short she gives me a phone number to find my original surgeon. Now his office will not see me for under $300.00 so I had to go get a limited insurance policy…finally @ 8 months post op I have xrays and everything is scarred in wonderfully…I still have way too much pain…still today 18 months post op---I still feel it and it hurts.
When I was looking for a new doc I went to my rep and he gave me a list of docs that he worked with…perhaps a start for you.
Again…I am so sorry…it is abandonment and confusing and scary.
Johanna

Re: responsibility of doctor
 

Your doctor owes it to you to give you a good referral to the best doctor for follow up. This is part of the oath they take. He can't just dump you and expect you to know what to do. Ask for the referral and don't take no for an answer. I am sorry you are in this position. ginnie:grouphug:

Oh Johanna
 

I did not know of this feature of your story. I am so sorry to learn you had such a hardship. I pray the pain will lessen and the doc will treat.

HUGZZZZZZZZZZzzzzz :hug:

thanks Mark,
I was one hot mess...no family support other than my son who I moved in with me...into my studio apt....with 10 birds...I worked 40 hours a week as a deli clerk and slept and stayed in bed every minute I could. Once my case settled I was able to get internet again and then found all of you here...my life line!!
That is one reason I stay posting here,,,,you never know how you can touch a person and save a mind or a life or pass on Joy.
HB

Johanna -I'm so sorry you seem to be going through such a nightmare! Is this happening to you right now? What is LOP? I just can't believe the way you have been treated, just horrible. Is your pain from the SCS or the reason for it?

Thankfully my only issues with the SCS is some abnormal swelling/fluid but not that abnormal given my history so we are just watching that. I am off all meds except Gaba & Amitriptyline (low dose) and started using my recumbent bike at 6 days post op (with permission) to help cope with pain not covered by SCS. I do better at coping when I can switch things up and worse when I am stationary no matter what the position is.

My rep also gave me a name of a doctor that might be willing to take me on as a patient so, I will be calling tomorrow. I'd rather make sure I have a new one on board before my old one leaves!! It is frustrating for anyone to go through this - it wouldn't be so bad if it were a different type of surgery but, and implant like this that has a fairly high failure/complication rate it just seems like it would be better to have the original operating surgeon available for at least the first year.. IDK maybe I'm just being worried for nothing. Sigh.

Ginnie - thanks and yes, I hope that he will honor at least that.

Thanks for the kind words,
Tessa

pretty good now
 

tessa
LOP...letter of protection.....a letter from my lawyer gaurenteeing payment (with negotiation) at the time of settlement for an auto accident injury case.
that nightmare...
that was all last year...once I got back to my original surgeon...found out all in regard to the SCS etc was correct...now I just go for meds which is so ironic to me because that is why I was going to him anyway.

I am way better now although I suffer from the SCs and surgery for it...I ws NOT a candidate for it and was part of the kickback program I am sure. I am not happy with the surgeon on a lot of levels tho I am always chiper...he is one hell of a surgeon and in regard to the actual work he did...it is excellent. ..I have more surgery in the future...hips/knees...perhaps removal of the SCS..

my body on the other hand just still screams ...get it out..it works great...everything is in place...I recharge just fine....it just eels like a box in my spine and it hurts. I take more meds now from the pain of the SCS and surgery than I took for the original nerve injury.
I consider myself lucky after I read here...I landed on my feet (always do)..I was able to quit work until my disability came thru (at 4 months I might add).
I am grateful for my outcome...pleanty of time to rest and rehab and I get stronger every day.

Johanna
miracles are supposed to happen

Hi Johanna
 

Would you please send a miracle my way please.... I am in need of one today. ginnie:hug:

I believe in Miracles!!
 

LOP.. duh ;) I am surprised you settled before all treatment was finalized?? Was this by mistake or was that the suggestion of your lawyer? My injuries and need for the SCS were also the result of a motor vehicle accident but, even after 2.5 years I am still no where near ready to discuss settling. I'm sorry you were also in an accident and glad you "landed on your feet".. I feel fortunate to be doing as well as I am despite my injuries and further complications of surgeries.
You mentioned maybe hip surgery.. lol.. I am a hip surgery expert.. after having 6 (3 on each side) big operations on my hips/pelvis after my accident so, if you have any questions feel free to ask. If you don't mind me asking what is going on with your hips?

Regarding your SCS.. you mentioned you weren't a candidate?? Confused. Why did your doctor place it, if you weren't a good candidate for it; was that your decision or did you feel pressured? So sorry you are still having so much pain from the battery, that sounds awful. Sad that you are on meds due to the device rather than for pain that isn't covered by the said device. Where is your battery placed.. is it just in the wrong spot or do you think it is something else causing the pain? Mine is in my buttock, but according to my OS it is lower than usual because I had him measure where my backpack sits on my hips and wanted it to be placed where I wouldn't have any irritation incase it protruded and with the hopes that someday I could enjoy hiking again! I feel very lucky in that my incisions are healing well at just 1 week postop. I only wish the SCS gave me a bit more relief when I am walking.. it's great when I am sedentary but as I increase the SCS just can't keep up. Hopefully I will be able to find other ways to cope with the residual pain.. I hate hate hate taking meds!

You mentioned earlier that a doctor thought you were misdiagnosed - is there a better diagnosis now and if so, do you agree with it? If it is CRPS wouldn't more surgery be risky for you? I ask because I will need a total hip replacements possibly in under 5 years (but hopefully longer) and on the CRPS hip/thigh the thought of doing/not doing surgery scared the heck out of me..

Glad you got disability quickly. I was fortunate to have paid into my companies STD & LTD plans so mine was approved quickly. In fact I was even more blessed that they recently extended my LTD until I am 65 after the nerve injuries and subsequent CRPS II diagnosis. It is my goal to return to work but, if I can't I am thankful for that policy!!! One of the best purchases I had ever made...second only to saying YES to my husband :)

Wishing you a great day despite any challenges that come your way,
Tessa:hug:

lol.. me too me too!

Welllllllllll.....................
 

Ifn I was like......uh......Rrae, for instance, I would reach inta that lint filled pocket of her'n, and I would take a hand full of miracles and cast them in the air with prayers for each of ya!!! Yup..... I would.....

Maybe she will come along with that miracle pocket of hers and do just that!

Until then..... well, I uh..... :Scratch-Head: have prayers for ya, :smileypray:

Is that OK?? :hug: :grouphug: :circlelove:

Hi Mark
 

Real hard month. Many exta expenses there just isn't any money for. My home air conditioner and my car had some big bills. Got really depressed over it. xginnie:hug:

Praying a miracle comes your way
 

Gosh Ginnie I am sorry it seems to be raining on you right now. Been there so many times over the past year myself so I can totally sympathize with your situation. Praying our good Lord will provide in one way or another.

Have you maybe tried looking at your local college for a handyperson who might be able to do work you need a little cheaper? Also sometimes craigslist offers workers who are looking to trade services? Your local church also might have some way to help you? I'll keep thinking and praying a solution comes your way.

Hiccups... ugh sometimes they hurt!
Tessa

May Jesus Christ carry you when
You need a break from human
cruelties that are inflicted upon us
as they collect their monies
why oh why is this inhuman practice is
clearly a common practice that can be stopped
where are our protectors in this all


STOP THE ABUSE
IT IS COMING DIRECTLY FROM OUR
D O C T O R S and our C A R E T A K E R S

Ginnie,

Hang on that flannel shirt and me
I hear you clearly my Angel


Someone who cares

Hi Eva
 

Got the corner of the flannel shirt. Having a hard time. Too much to handle in such a short time. Thank you for your prayers. xxxginnie:hug:

MD chimes in
 

The doc should have let you know about impending relocation. That's lame.

As long as your SCS works, you really don't need a doc. Just a good rep to tweak things. Find someone of quality at an academic center. They generally are not wallet biopsying patients. They get a salary - you aren't prey.

In private practice, business decisions happen. Partly because health care reimbursement is perversely distorted. As an example, the best private insurance pays me 7x more than Medicaid. 3.5x Medicare. Medicaid loses money for most docs. Medicare getting worse. Tough decisions to make for some docs.

My 1st doc was a narcissist who gave a gr 8 trial but botched the perm. Found an excellent neurosurgeon at Stanford to revise. My scs isn't perfect, but it was done well. It cuts the pain down and has allowed me to do more. Work is easier.

Going to Costa Rica on Sunday! That will be a challenging vacation!

Best of luck. Stanford is far away, but I can say that Jaimie Henderson definitely cares about his patients.

Thanks MDinpain,

I would have more understood if the doctor was in private practice as you mentioned but, he was not. He is actually considered one of the top Neurosurgeons at the main university hospital in Washington State a 'teaching' hospital, where as I hope he is not 'teaching' this type of behavior to his interns.

Due to other medical conditions it would not be wise for me to not have a physician on board who is well versed in my complete history, and familiarity with the SCS device etc., or I would go happily on my way.

The good news is that I have a few appointments lined up this coming week and I am hopeful that one of them will work out.

Sorry your SCS isn't as good as it can be but, glad to hear it reduces your pain. Guess I should say I am grateful that my SCS is doing very well for me.. day 10 YIPPEE.

Wishing you a fun filled vacation!!

Take good care and thanks again,
Tessa

Candor...AND have a GR8 TRIP
 

Hey MD, thank you for sharing openly. That is SO valuable and deeply appreciated.

Now.....

HAVE A GREAT TRIP TO COSTA RICA..... that land of my California friends who seem to be "relocating" and building "vacation places" because it is so beautiful.

May it be terrific for you and family! :sunchair:

Glad that your scs kicks butt
 

Glad that your SCS rocks. Mine has allowed me to increase walking range up to 10 miles max - that seems to be my breaking point. Up from 5-6. Problem is i have generalized crps 2. Absolutely bizarre pattern. Affected both lower legs, both shoulders less, upper back less, and also a little in hands and face. So the scs can't cover everything. If i overdo, the other spots get worse. Hands scare me. Hopefully it doesn't get worse in my hands. Sometimes even with gr8 coverage, my body crashes like a jacked computer.

That would make work very hard. I love my job. Don't want to quit. Maybe nevro will be out there if i need em down the line for cervical implant.

Vacations are strange bc i look at the list of activities and think what should i do? What can i do? At least i am cleared to swim! yeah! Its been 3 months - i feel upper body less strong and that ....es me off! last time i flew (1 week ago) i had run 2 miles the previous day. That was a bad plan!!! Terrible travel day. Massive nervous system hangover. For cr, i will just walk 3 miles the day before and take it easy. Am looking forward to it. Afterlife can be debated, but you only live once!

Best of luck finding a new pain management doc. I doubt that your UW md meant to ditch you. He wasn't thinking. If your device becomes problematic, ask the device reps. They know who is good. That's how I found dr right.

Mark, btw- am now procuring long gun. Remington 700 tactical .308 with a 20" barrel. Bushnell sight. Bipod being selected. 500 rounds in the mail. Time to make some targets pay!!!

And
 

Tessa- Glad you actually have appts lined up with potential treating Dox. Hope and pray one, at the very least one, works out for you and will treat.

So glad on day 10 post implant you are feeling the groove such as we who have a good experience know so personally. I hope it keeps on keepin on with pain remediation!

MD- Sounds like you are near to the acquisition of target phase. Line up a range to use, a trainer with whom to work, ear protection [you will need it for sure on the device and caliber you describe], and focus well on that target [visualize it as PAIN] then breathe slowly and carefully squeeze off those rounds of letting it all go. 500.....sounds as though you have put together something of the ilk our Army son has done in days on the range. Amazed at the number of rounds they use.

A restful vacation to you!

Hey MD,

So glad to hear you are up to 10 miles!! That just makes me so frickn' happy! I've got my sites set on a 1/2 Marathon this Jan.

Sound like we have a similar symptoms and diagnosis. My CRPS II is in both legs with what the doctor calls "central expansion". My right hip/groin/thigh is where it began and it quickly mirrored in my left although not nearly as bad on the left. 3 nerve branches were badly damaged during a hip operation which is what triggered the CRPS II.

I hope at the end of your vacation you look at the lists and smile knowing you did more than you thought possible. Have so much fun.

Thank you so much for sharing your progress, I truly appreciate it!

Yep, central sensitization - add a spinal cord injury to that and you end up with me- a pretty functional freak!

Ginnie, sorry I'm late to read this thread. I sure hope you have been blessed by some miracles that everyone is praying for you!
I will join in hoping and praying for only good things to come your way!:hug:

Ginnie.....
 

:hug: (((((((HUG))))))) :hug:

Thinkin of you, prayin, and hoping things will look up soon.

Rae
:grouphug:

Hi Tessa....
 

So glad you are doing so well post-implant!

I'm sorry you got the shaft with this doc tho. That sucketh. I'm sure things will work out ok for you. Is your rep in good contact with you regarding any questions you may have about your unit?
Like MDinpain said, I've never really seen my surgeon since my implant either. Thankfully I haven't had any reason to see him again, and I pray this will be the case for you. The Reps can do your tweaks and it sounds like you have potential physician(s) lined up for consults. Perhaps one of them will be able to oversee any breakthrough pain or other issues you may have in the future.

Just to chew the fat a bit...... :rolleyes:
even in my rural area, I've seen some pretty 'odd' reasons for a doctor to have to leave abruptly perhaps because of a personal reason....aka, one had a mental breakdown due to problems on his homefront. Another had a DUI and had to go into forced rehab.
Nonetheless, you shouldn't have been left in the dust like that. A person of this profession should have staff to see to it that his patients are taken care of in one way or another.

Caring,
Rae
:grouphug:

Thank you for prayers
 

Thanks AzDi and Rrae, I appreciate the prayers very much. So much went wrong this month I couldn't see straight. Health was affected because of the stress. So it goes.... I am glad I have all of you in my corner. ginnie:)

Hi Rrae!!
 

:grouphug::grouphug::grouphug::grouphug::grouphug: :grouphug::grouphug:

You guys on this board are super terrific!!

Thanks Mark56..
 

Thank you, Thank you.. God is good found a fantastic doctor!!

Praying for you this week Mark56!!

well
 

well well well
how about that

"miracles are supposed to happen"
Marianne Williamson...Every Day Grace

Well How About That?!?!?!
 

Johanna has a really nice quote.... I especially like the first, second, and last words in a little different presentation.....

Miracles are!

Miracles happen!

Yeah..... SO, I am thrilled for ya Tessa!! A doc! Way cool! May you receive confidence inspiring, competent care with and through those good hands. Kinda reminds me of a portrait of Praying Hands an aunt of mine did decades ago and which to this day hang in the narthex of the church in which she was raised. Good hands. Prayerful hands..... hands, which a doctor friend told me are those priceless gifts to patients thus delivered beyond pain.

Appreciate your prayers regarding the upcoming test. Another miracle.... perhaps?

I could go for that......:smileypray:

Trust
 

I believe!!

Proverbs 3:5-6 Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.

Resting in the Lord in Faith
 

This is truly the miracle of my arrival upon this web forum and the happenings since then.

In all ways acknowledging Him, for therein lays my path.

Thank you, Tessa! :hug: and one for the room :grouphug:

Oh Hey MD!!
 

I realize I just took your thread off topic into an arena not part of you.

Please forgive me. :Doh:

lol.. no forgiveness needed I don't mind going 'off topic' for my brain does that all day long!!

Have a super fabulous day! I wish I could post a picture of what I just saw this morning that made me smile from ear to ear. I was sitting in the hot tub enjoying my coffee when 3 baby Elk with their cute little spots walked up with their mama's.. so precious!! Wish you all could have enjoyed that along with me!

Wow
 

Now that is beauteous.:)