Re: Rods out?!

[Guest guest]

 

I'm sorry you are in so much pain, and are frustrated, and not sure what to do next.

 

Given the time frame of your surgery, your rod system isn't Harrington Rods, sometimes doc's use the name as generic term, kinda like people saying Clorox, when they mean bleach.

 

What drove you to surgery in the first place, was it scoliosis, or an injury? Who did your surgery and where, and where are you located now?

 

Has it been suggested to you that you have Flatback? How many opinions have you gotten? They have no answers to why you are in so much pain? Where is the pain generating from? What level of your spine, and how does it feel, does it radiate into your legs, arms, etc?

 

Since nothing is working, and you haven't gotten any relief from the expanded treatment, I think it's time to put new eyes at the problem. In rare instantces some do get relief from hardware removal. If you do have Flatback, it's unlikely that hardware removal would give you the relief you look for, as you would have to have your lordosis restored, and fusion continued to the sacrum.

 

Given all you have been through, and all that has been done, and hasn't worked, my suggestion is to get to a doc skilled in post long fusion complications for a consult and some fresh eyes at the problem.

 

Please let us know where you are located, and we can give you some names to consult, we don't suggest docs for surgery, as that is your choice, but ones for consults, afterall this is your choice.

 

Pain is awful and draining, but know, there is always hope, sometimes it just takes getting the right eyes looking at the problem. All of us don't come out of surgery completely pain free, but it sounds as if you pain is not being controlled well, and you just need a fresh set of eyes at the problem.

 

Let us know where you are, and hopefully, you can get some answers.

 

Colorado Springs

On Mon, Aug 2, 2010 at 5:52 PM, stevelinkinhoker <stevelinkinhoker@...> wrote:

 

I had the H-rods put in 5 yrs. ago.I have had increased pain ever since. I am fused from T-11 to L-4 with the rods going from T-4 to L-4.I had the common incesion going down from the base of my neck to my belt line. Also had the bi-lateral incesion from my back incesion to my belly button.

My problem is....my pain has been ten fold since surgery. I have already been through nerve burning, injections, morphine pump and now stimulator. None have been very effective.My range of motion is nill as i cannot bend at all from the spine and can only bend from knees.

I fill like my only option at this time is to consider rod removal. All c-scans and x-rays show everything is all good with hardware although they had to open me back up a yr. after first surgery to tighten screws.I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.

At 41 yrs. old i do not honestly know what to do anymore. Need to get some feedback on rod removal and the results.Thanks,

[Guest guest]

Hi ...

If you have rods from T4-L4, you are almost certainly fused T4-L4. Rods will

almost always break if there is no fusion at even one level. From what you've

written, I'm guessing that you were fused in the front from T11-L4 and in the

back from T4-L4. Also, if you have screws, your rods aren't Harrington rods

(which were connected to the spine by either hooks or wires).

Removing the rods will not change your flexibility, and I'm betting it wouldn't

help your pain (since you're on such a heavy regiment of narcotics). You need

to find a good revision specialist.

Regards,

>

> I had the H-rods put in 5 yrs. ago.

> I have had increased pain ever since. I am fused from T-11 to L-4 with the

rods going from T-4 to L-4.

> I had the common incesion going down from the base of my neck to my belt line.

Also had the bi-lateral incesion from my back incesion to my belly button.

> My problem is....my pain has been ten fold since surgery. I have already been

through nerve burning, injections, morphine pump and now stimulator. None have

been very effective.

> My range of motion is nill as i cannot bend at all from the spine and can only

bend from knees.

> I fill like my only option at this time is to consider rod removal. All

c-scans and x-rays show everything is all good with hardware although they had

to open me back up a yr. after first surgery to tighten screws.

> I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.

> At 41 yrs. old i do not honestly know what to do anymore.

> Need to get some feedback on rod removal and the results.

> Thanks,

>

>

[Guest guest]

Hi -

I had revision surgery with the best doctor (according to the Scoliosis

Society) here in Ontario, Canada in 2007. I knew immediately that he didn't fix

my back and create a lordosis because I still leaned forward. As I got off the

narcotics I still had the pain I went into surgery with and I was depressed.

Someone on this site said that Dr. Bridwell in St. Louis would review your case

if you sent him all the info so that's what I did. He referred me to a young

doctor in Toronto and right away I was impressed with him. I had surgery in

April of this year and I'm so happy I did. I now stand straight, have a nice

lordosis and minimal pain. I guess what I want to say to you and don't give up.

The people on this site have great doctors to refer you to, most of them have

operated on someone on the site and have had good results. See someone that

does revisions on adults and that you have faith in. Good luck and I'm waiting

to hear how you do. Elaine

>

> I had the H-rods put in 5 yrs. ago.

> I have had increased pain ever since. I am fused from T-11 to L-4 with the

rods going from T-4 to L-4.

> I had the common incesion going down from the base of my neck to my belt line.

Also had the bi-lateral incesion from my back incesion to my belly button.

> My problem is....my pain has been ten fold since surgery. I have already been

through nerve burning, injections, morphine pump and now stimulator. None have

been very effective.

> My range of motion is nill as i cannot bend at all from the spine and can only

bend from knees.

> I fill like my only option at this time is to consider rod removal. All

c-scans and x-rays show everything is all good with hardware although they had

to open me back up a yr. after first surgery to tighten screws.

> I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.

> At 41 yrs. old i do not honestly know what to do anymore.

> Need to get some feedback on rod removal and the results.

> Thanks,

>

>

[Guest guest]

Sent from my iPhone

[Guest guest]

I'm in Toronto as well, but I'm still under 18 and go to Sick Kids Hospital. My

doctor is Dr. and he came from Toronto General and his main thing is

spinal surgery and he has done wonders for me and I am pretty sure he is still

with Toronto General.

> >

> > I had the H-rods put in 5 yrs. ago.

> > I have had increased pain ever since. I am fused from T-11 to L-4 with the

rods going from T-4 to L-4.

> > I had the common incesion going down from the base of my neck to my belt

line. Also had the bi-lateral incesion from my back incesion to my belly button.

> > My problem is....my pain has been ten fold since surgery. I have already

been through nerve burning, injections, morphine pump and now stimulator. None

have been very effective.

> > My range of motion is nill as i cannot bend at all from the spine and can

only bend from knees.

> > I fill like my only option at this time is to consider rod removal. All

c-scans and x-rays show everything is all good with hardware although they had

to open me back up a yr. after first surgery to tighten screws.

> > I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.

> > At 41 yrs. old i do not honestly know what to do anymore.

> > Need to get some feedback on rod removal and the results.

> > Thanks,

> >

> >

>

[Guest guest]

,

Thank you so much for the response.

Every doctor has said "Harrington Rods". I wonder now if this is not the case? But I guess in the big picture it doesn't really matter.

I am in Daytona Beach, FL. I had the surgery done in Orlando by a Doctor name Grady McBride. He scared me by telling me that that my scoliosis was so bad that if i didn't have surgery i would more than likely be in wheel chair by 50! Well going through what i have in the last 5 yrs. I now know that i should have taking my chances.

Attached is pic. of what he did to me.

I am just tired of being in pain. I also have 4 children ages 16 to 2 and a wonderful wife who are all tired of seeing me in pain.

I know my odds of having the rod removal are 50/50 on being helpfull but i am starting to think what do i have to lose.

Thanks for your help.

I had the H-rods put in 5 yrs. ago.I have had increased pain ever since. I am fused from T-11 to L-4 with the rods going from T-4 to L-4.I had the common incesion going down from the base of my neck to my belt line. Also had the bi-lateral incesion from my back incesion to my belly button.My problem is....my pain has been ten fold since surgery. I have already been through nerve burning, injections, morphine pump and now stimulator. None have been very effective.My range of motion is nill as i cannot bend at all from the spine and can only bend from knees.I fill like my only option at this time is to consider rod removal. All c-scans and x-rays show everything is all good with hardware although they had to open me back up a yr. after first surgery to tighten screws.I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.At 41 yrs. old i do not honestly know what to do anymore. Need to get some feedback

on rod removal and the results.Thanks,

1 of 1 Photo(s)

[Guest guest]

Hi ...

They're definitely not Harrington rods. The image is too small to see enough

detail to know exactly what they are, but they're in the category of what is

called universal implants. The rods change relatively little over time, but the

method of attaching hooks and screws vary a lot. They all use essentially the

same concept to reduce the curves and derotate the spine.

Regards,

> >

> > I had the H-rods put in 5 yrs. ago.

> > I have had increased pain ever since. I am fused from T-11 to L-4 with the

rods going from T-4 to L-4.

> > I had the common incesion going down from the base of my neck to my belt

line. Also had the bi-lateral incesion from my back incesion to my belly button.

> > My problem is....my pain has been ten fold since surgery. I have already

been through nerve burning, injections, morphine pump and now stimulator. None

have been very effective.

> > My range of motion is nill as i cannot bend at all from the spine and can

only bend from knees.

> > I fill like my only option at this time is to consider rod removal. All

c-scans and x-rays show everything is all good with hardware although they had

to open me back up a yr. after first surgery to tighten screws.

> > I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.

> > At 41 yrs. old i do not honestly know what to do anymore.

> > Need to get some feedback on rod removal and the results.

> > Thanks,

> >

> >

>

[Guest guest]

Hi Izarah -

I had surgery with Dr. , Toronto Western Hospital, 399 Bathurst

St., 3rd Wing, Room 1-442, Toronto, Ontario, M5T 2S8

416-603-5851. Also Hodgson, from the Toronto area, had surgery just after

myself and she also feels we found the best revision surgeon in Canada. She is

also a member of this site and I think you could talk to her through this site.

By the way, my first surgeon was Ford. He is older and doesn't have the

new techniques that have been developed in the U.S. Dr. trained under Dr.

Bridwell in St. Louis. Good Luck, Elaine

> >

> > I had the H-rods put in 5 yrs. ago.

> > I have had increased pain ever since. I am fused from T-11 to L-4 with the

rods going from T-4 to L-4.

> > I had the common incesion going down from the base of my neck to my belt

line. Also had the bi-lateral incesion from my back incesion to my belly button.

> > My problem is....my pain has been ten fold since surgery. I have already

been through nerve burning, injections, morphine pump and now stimulator. None

have been very effective.

> > My range of motion is nill as i cannot bend at all from the spine and can

only bend from knees.

> > I fill like my only option at this time is to consider rod removal. All

c-scans and x-rays show everything is all good with hardware although they had

to open me back up a yr. after first surgery to tighten screws.

> > I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.

> > At 41 yrs. old i do not honestly know what to do anymore.

> > Need to get some feedback on rod removal and the results.

> > Thanks,

> >

> >

>

[Guest guest]

Steve,

I am sorry I cant see your photo as you must have sent it as an attachment and

that will only be visible to members who get the group via email. If you would

like you can also create a file of photos and that way everyone could see what

you are talking about.

Still...the fact remains that regardless of what type of instrumentation you

have....its not working for you. I am just a patient and lay person like

yourself. I have no medical knowledge or training...just been learning for the

last years before and after my revision. I will say that generally I have never

seen where its the rod or rod removal that is the problem or the solution.

Improper placement, contouring , technique...yes....but after/if you are fused

then removing the rod changes nothing...unless there is an errant screw

impinging on a nerve. If not, then you have put yourself through another long

surgery for nothing and pain management should have been able to determine if it

was nerve in the first place.

I very much agree with that if you are not getting anywhere with your

current spine management and you are this disabled, then you really should seek

another opinion, and a very good one at that. After all, the definition of crazy

is doing the same thing over and again to the same result. Your current doctor

is never going to find fault with his technique so he will be unable to diagnose

you. You seem to be running into the " everything is fine so you must be crazy "

scenario. See if new eyes cant help, you owe that to yourself. Yes it will take

time and be a challenge....but this is probably not an emergency and you really

want to get this " right " so research all your options before you move ahead.

It makes complete sense to me that the feeling that if only the rods come out

you could stand up straighter and feel more balanced could be flatback. Also

wonder what kind of post op rehab you did?

Take Care, Cam

> > >

> > > I had the H-rods put in 5 yrs. ago.

> > > I have had increased pain ever since. I am fused from T-11 to L-4 with the

rods going from T-4 to L-4.

> > > I had the common incesion going down from the base of my neck to my belt

line. Also had the bi-lateral incesion from my back incesion to my belly button.

> > > My problem is....my pain has been ten fold since surgery. I have already

been through nerve burning, injections, morphine pump and now stimulator. None

have been very effective.

> > > My range of motion is nill as i cannot bend at all from the spine and can

only bend from knees.

> > > I fill like my only option at this time is to consider rod removal. All

c-scans and x-rays show everything is all good with hardware although they had

to open me back up a yr. after first surgery to tighten screws.

> > > I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.

> > > At 41 yrs. old i do not honestly know what to do anymore.

> > > Need to get some feedback on rod removal and the results.

> > > Thanks,

> > >

> > >

> >

>

[Guest guest]

Steve,

Well I can see that you are very much of the mind that the screws have to go,

but I would caution you to make sure you are getting the very best advice before

proceeding. Just because you have found someone willing to remove them does not

make that the correct course of action. A number of us, me included, were able

to have revision where the new lordosis is achieved and the old implants/rods

were essentially only modified and left in place. This was an easier revision

than for me and many others. Less blood loss, less disturbing of already

traumatized areas, less scar tissue formation. There is also so evidence that

even though a rod may not technically be required after fusion is solid, the

rods may add additionally structural stability and actually have a functional

role.

So... because a surgeon is willing to remove them....should he? You say he has a

good reputation...but with who? Complex spinal patients with long histories?

Does he customarily care for those with serious spinal deformities or is he a

spine surgeon who has a good rep because he does lots of one and two level

fusions when folks blow their discs out playing golf? Really a different skill

set you are looking for.

I hear how at the end of the rope you are. I know you must be willing to do

anything, but please consider that if you see someone like DrOBrien in Miami,

and he says rod removal is the way to go, and its confirmed...well then you can

go back to your local guy and do that if you choose. Alternatively, if someone

of DrOBrien thinks there is more going on perhaps you will actually find a

different avenue that gets you better results. After all, you cant keep having

successive surgeries without some risk of the surgeries and the resultant trauma

being problematic too.

Take Care, Cam

[Guest guest]

Cam...

I could see the image (at the bottom of the post), while viewed on the website.

--

> > > >

> > > > I had the H-rods put in 5 yrs. ago.

> > > > I have had increased pain ever since. I am fused from T-11 to L-4 with

the rods going from T-4 to L-4.

> > > > I had the common incesion going down from the base of my neck to my belt

line. Also had the bi-lateral incesion from my back incesion to my belly button.

> > > > My problem is....my pain has been ten fold since surgery. I have already

been through nerve burning, injections, morphine pump and now stimulator. None

have been very effective.

> > > > My range of motion is nill as i cannot bend at all from the spine and

can only bend from knees.

> > > > I fill like my only option at this time is to consider rod removal. All

c-scans and x-rays show everything is all good with hardware although they had

to open me back up a yr. after first surgery to tighten screws.

> > > > I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.

> > > > At 41 yrs. old i do not honestly know what to do anymore.

> > > > Need to get some feedback on rod removal and the results.

> > > > Thanks,

> > > >

> > > >

> > >

> >

>

[Guest guest]

Hi Steve,

I need to echo what Cam has said about the expertise of surgeons. It

is not enough to know they are highly recommended. You really must

know how much experience they have had performing surgery on adult

patients who already have a long fusion and how much of their practice

deals with adult deformities. Also, most patients, no mater how good

their surgeons, get more than one opinion before proceeding with

surgery. I have been part of this group for many years. I am a

patient just like you. I can assure you I have never heard a patient

say they wee sorry for seeking multiple opinions, no mater how much

pain they were in or how far they had to travel. It's so important

for you to get this next step right. The best way to do that is to

get opinion(s) from the top docs. As Cam said, if they agree with

your doc's plans, then you can always have the surgery with the doc

you know.

Good luck.

Bonnie

[Guest guest]

Ok Doctor O'Brien has moved to Texas.

Any other suggestions for Florida?

Thanks,

I had the H-rods put in 5 yrs. ago.I have had increased pain ever since. I am fused from T-11 to L-4 with the rods going from T-4 to L-4.I had the common incesion going down from the base of my neck to my belt line. Also had the bi-lateral incesion from my back incesion to my belly button.My problem is....my pain has been ten fold since surgery. I have already been through nerve burning, injections, morphine pump and now stimulator. None have been very effective.My range of motion is nill as i cannot bend at all from the spine and can only bend from knees.I fill like my only option at this time is to consider rod removal. All c-scans and x-rays show everything is all good with hardware although they had to open me back up a yr. after first surgery to tighten screws.I have been taken 30-45mg. morphine, 6 percocet and 4 soma orally daily.At 41 yrs. old i do not honestly know what to do anymore. Need to get some feedback

on rod removal and the results.Thanks,

[Guest guest]

To Maggie & Jeanne -

I definitely hear what your saying - I'm Canadian - in fact Maggie and I are

e-mail pals. Have all your questions ready on a sheet. If the surgeon is good

he'll have nothing to hide. If all else fails there is a good site with

evaluations by people that have had specific doctors as patients. It's

www.ratemds.com and I have found very good information there but I can't

guarantee that your doctor will be on it. It is for Canada as well as U.S.and

lots more countries around the world. Good Luck.

Elaine

PS: Maggie - Dr. also sees children at Sick Kids and does lots of

surgeries on them also. If you are impressed by him, ask him about your

daughter.

>

> To all the ladies and gents that have had this extensive surgery, can you

please

> tell me what information you had going into your surgery, what information you

> had post op and how you got it? How did you qualify your surgeon and those

> treating you?

> I am seeing one of " best " surgeons in Canada soon but I will also go to the

U.S.

> for the final opinion. I really would like to have one of the American

surgeons

> do my surgery because of all the stories of success I have read on here but I

am

> not sure I can get health canada to pay for it. But one step at a time.

>

> My appointments have been like this... surg. gets all your med. history faxed

to

> them. you bring your xrays, they go away and look at your xrays, they come

back

> in and do the typically spinal exam and evaluation. they leave again.. come

back

> in after reviewing your xrays and either send you away or tell your briefly

how

> they can help but never going into any real detail. that is it? The entire

> process and doc. evaluation is typically no more than 20 minutes... you wait

> longer than you are seen...

>

>

> any tips or words of advice.. greatly appreciated.

> Maggie.

>

>

>

>

>

>

> ________________________________

> From: Slinker <slinkers5@...>

>

> Sent: Thu, August 5, 2010 5:36:09 PM

> Subject: Re: [ ] Re: Rods out?!

>

>

> 

> Maggie,

>

> I can appreciate your frustration. But to be honest, we do have the same

> problem up here. Some doctors will give you the information you're asking

for

> and sometimes they'll give you patient references, but other's will not.

I've

> had doctor's give me " that look " when I ask what their experience is with a

> particular issue. I've had doctor's refuse to refer me to another, more

> experience, doctor simply because their ego is so big. Here in the U.S., if

> you have an HMO policy, you have to have your primary care doctor give you a

> referral to any other doctor/specialist or the insurance will not pay. Some

> are good about referrals, some are not. Even in the case of an emergency,

you

> have to call your primary care doctor to get a referral to the emergency

room.

> The only time this isn't required is if it is life or death. I have a PPO

> policy which allows me to go to any doctor I choose from within a " network "

of

> doctors. If I go out of the network, I pay more. But, I am in charge of

what

> doctors I see and I can go straight to a specialist without asking

> permission. Are you able to go see a different doctor for your daughter if

> this doctor isn't to your liking?

>

> Jeanne

>

>

> [ ] Re: Rods out?!

> >

> >

> >Hi Steve,

> >

> >I need to echo what Cam has said about the expertise of surgeons. It

> >is not enough to know they are highly recommended. You really must

> >know how much experience they have had performing surgery on adult

> >patients who already have a long fusion and how much of their practice

> >deals with adult deformities. Also, most patients, no mater how good

> >their surgeons, get more than one opinion before proceeding with

> >surgery. I have been part of this group for many years. I am a

> >patient just like you. I can assure you I have never heard a patient

> >say they wee sorry for seeking multiple opinions, no mater how much

> >pain they were in or how far they had to travel. It's so important

> >for you to get this next step right. The best way to do that is to

> >get opinion(s) from the top docs. As Cam said, if they agree with

> >your doc's plans, then you can always have the surgery with the doc

> >you know.

> >

> >Good luck.

> >

> >Bonnie

> >

>