Re: HARRINGTON ROD REMOVAL

[Guest guest]

Hi Bev,

I haven't read all of the comments on here about removal, but I can tell you my

personal experience. My rod was put in when I was 14 after 2 years of

monitoring to make sure my spine was done growing. Within a year of my surgery,

my spine grew, and the top part of the rod separated from the bracket. I had a

" bump " on my spine that I would hit on things (like car doors, etc.) all the

time. The pain from that was excruciating. Finally, when I was almost 17, the

doctor decided the rod needed to come out. When he went back in though, the rod

had fused to my spine so much that he was only able to saw off and remove the

middle part that had separated. I am 47 now, and my spine is curved almost as

badly today as it was before my first surgery. So, even though I have most of

the Harrington Rod still in place, it is not connected and does nothing.

However, I can bump into things today without waves of pain running up and down

my spine. It is a tough decision. I will pray for you. Take care. Amy

>

> Hi All

> My name is Bev and I live in the UK

> I wondered if I could ask some advice about Harrington Rod removal.

> I started experiencing problems in 2009 mainly below the fusion, but most

recently the pain above the fusion has been terrible.

> At 1st it felt like a pulling sensation where the rod ends above the fusion

(approx T3) but in the past two weeks I have had severe pain from around T3 area

up into my neck and across into my left shoulder.

> I have virtually agreed to have the Harrington rod removed (which Ive had

since 1984), but since reading posts on here I'm worried about what the effects

will be after removal, i.e not having the support of hardware.

> Is there anyone that could share with me there experiences of having their

rods removed, i.e those that haven;t had revision surgery at the same time.

>

> Kind regards

> Bev x

>

[Guest guest]

Bev,

I am also in the same boat as you. I just went through a unsuccessful revision surgery 5 months ago.My pain is isolated to area in my lower back.

The surgeons are agreeing on one thing.......the pain is caused by hardware.

I am fuse from t-4 to sacrum now and the pain has not left at all.

I take a lot of narcs just to get through the day and provide for my family.

So we have made the decision that in Sept. we will be having all the hardware removed. We are giving it that long just in case we start getting results from revision.

Doctors say as long as the fusion has taken (which in my case it has) then the hardware is not really needed.

I asked also about having the support from hardware and they said again that the fusion is more the enough.

Please let me know what you decide. I am at a lose now in my life and have to do something to try and end this nightmare.

I have had nerve burning, morphine pump, and now stimulator to relieve the pain and none worked for me.

Will keep you in my prayers.

SS

From: alyg429 <alynne429@...>Subject: [ ] Re: HARRINGTON ROD REMOVAL Date: Thursday, March 10, 2011, 6:29 PM

Hi Bev,I haven't read all of the comments on here about removal, but I can tell you my personal experience. My rod was put in when I was 14 after 2 years of monitoring to make sure my spine was done growing. Within a year of my surgery, my spine grew, and the top part of the rod separated from the bracket. I had a "bump" on my spine that I would hit on things (like car doors, etc.) all the time. The pain from that was excruciating. Finally, when I was almost 17, the doctor decided the rod needed to come out. When he went back in though, the rod had fused to my spine so much that he was only able to saw off and remove the middle part that had separated. I am 47 now, and my spine is curved almost as badly today as it was before my first surgery. So, even though I have most of the Harrington Rod still in place, it is not connected and does nothing. However, I can bump into things today without waves of pain running up and down my spine. It is a

tough decision. I will pray for you. Take care. Amy>> Hi All> My name is Bev and I live in the UK> I wondered if I could ask some advice about Harrington Rod removal.> I started experiencing problems in 2009 mainly below the fusion, but most recently the pain above the fusion has been terrible.> At 1st it felt like a pulling sensation where the rod ends above the fusion (approx T3) but in the past two weeks I have had severe pain from around T3 area up into my neck and across into my left shoulder.> I have virtually agreed to have the Harrington rod removed (which Ive had since 1984), but since reading posts on here I'm worried about what the effects

will be after removal, i.e not having the support of hardware. > Is there anyone that could share with me there experiences of having their rods removed, i.e those that haven;t had revision surgery at the same time.> > Kind regards > Bev x>

[Guest guest]

Hi Bev,

Welcome to the group.

I dont know that you are going to get the kind of thumbs up or down I sense you

are looking for with regard to rod removal...although I cant tell you the

numbers of folks who have come to this group with the same vintage surgery of

rods/implants starting off from the idea that it was the rod itself that was the

cause of their pain and dysfunction. I mean...that only seems logical on the

surface. And any number of members have also found orthopedic (non-specialized)

who will agree to remove the offensive rod. However...unless you have a

situation where the rod is broken or dislodged and is the somehow interacting

with soft tissue and nerves, I think you may be barking up the wrong tree. If

you have your rod removed, its true there is some evidence that you may loose

some of the structural support it offers...but also of concern might be the very

difficult and somewhat dangerous removal for no real benefit.

I believe I would ask some very specific questions of the doctor proposing the

surgery....I would ask if the rod or implants have disconnected from the fusion

mass. Or if he believes the fusion has cracked, or never fused anyway, toward

the top of your original fusion. I would ask him/her exactly why they want to

remove the rod, what the benefits are, and what the the status/health of all

your adjacent discs are. I would ask him what he expected the prognosis for me

was, or ask if he was just shooting in the dark, hoping this would help.

It is very common for those with long spinal fusions, even later versions of the

Harrington rod, to have accelerated disc degeneration, arthritis and/or

stenosis. Its because these unfused discs are working extra overtime. Its not

uncommon to develop flatback, which you know if you have read here a little. So

again, try to find out what the reason for the removal is, and if you can not

get a satisfactory answer...I, for one, would not proceed....whether you have

agreed or not....until I was positive it was in my best interests.

I know you have a completely different system of medicine in the UK but my

understanding is that you may have some ability to maneuver within it. I would

encourage you to determine who the most well regarded doctors are that you can

potentially have a consult with....and get a second opinion. If you go to the

Scoliosis Research Society website (www.srs.org) you should be able to find a

good listing of doctors who specialize in adult scoliosis/degenerating spine in

the UK. We have a long time member, Titch from outside London, and my

recollection is she is a patient of Webb at Queens, but I could research

that more for you if you like.

I should add, I am not a person with any medical training or knowledge...I am

just a patient like yourself who started out thinking something was wrong with

my rod....and then I walked " through the looking glass " and found that the rod

was just fine...it was everything else around it that had gone to h*@#!

Please feel free to ask more questions as your look around our site.

Take Care, Cam

[Guest guest]

Hi Bev,I've had my Harrington rods in since 1984 and I'm fused from T-3 to L-4 and I am currently waiting for revision surgery on the L-4 to L-5 region due to disk deterioration, bulging disks etc., 

I did some research and considered rod removal however no surgeon will touch me stating my fusion is so embedded into my spine that at this point removal is next to impossible without serious risks. It would take years for me to rebuild my back muscles to even support my spine without the rods and of course my spine will continue to curve. The curve has begun its progression again even with my rods in tact. (When I was 15 years old I snapped 2 of the hooks and the top of the rod separated from my spine in the T-3 area)  What I don't comprehend is my surgeon says that my spine shouldn't be curving because the Harrington rods are their to prevent it but the research I've done and the way my body is twisting I know for a fact my curve has progressed. 

I'm not sure what to tell you because it seems like you and I are stuck between a rock and a hard place. I too have major pain in my neck shoulders and upper back in general ( I get a hot spike of pain in between my shoulder blades on the left side) not to mention the lower back that keeps me from walking most days. Have you been able to do any physiotherapy or pain management?  I find yoga (meditative states) heat, massage can at least ease some of the pain.

Also what has your surgeon said about removing the rods... I'm surprised they are willing to do such an invasive procedure.All the best Bev,Toronto, Canada

[Guest guest]

Hi Bev = I had my Harrington installed in 1979. It broke 18 months later & had to be removed. My curve progressed but not to the original severity. I led a full life until 2007, when I had my first revision. ........................Kathy

From: Bev <bev.heron@...>Subject: [ ] HARRINGTON ROD REMOVAL Date: Thursday, March 10, 2011, 10:04 AM

Hi AllMy name is Bev and I live in the UKI wondered if I could ask some advice about Harrington Rod removal.I started experiencing problems in 2009 mainly below the fusion, but most recently the pain above the fusion has been terrible.At 1st it felt like a pulling sensation where the rod ends above the fusion (approx T3) but in the past two weeks I have had severe pain from around T3 area up into my neck and across into my left shoulder.I have virtually agreed to have the Harrington rod removed (which Ive had since 1984), but since reading posts on here I'm worried about what the effects will be after removal, i.e not having the support of hardware. Is there anyone that could share with me there experiences of having their rods removed, i.e those that haven;t had revision surgery at the same time.Kind regards Bev x

[Guest guest]

Hi All

Just wanted to thank you for all the replies that I received regarding

considering removing my Harrington Rod and wanted to let you know that I did

infact go ahead with the surgery on 25th March 2011 at RNOH Stanmore, London UK.

I am now nearly 4 weeks post surgery and am slowly recovering. My Rod was

attached only with a hook at T3 and L3 and no wires, so therefore I was told

that the removal was relatively straightforward.

It is too early still for me to tell whether removing the rod has made much

difference. As I originally stated, I was experiencing a 'disabling' pain which

seemed to go from the top of the rod, into my neck and across into my left

shoulder, making it difficult for me to straighten my neck or lift my left arm.

Since the removal I still have this problem, but it has not been as severe as

pre rod removal to date.

I'm glad I decided to have the surgery, as was so worried about the rod breaking

and also wanted the surgeon to open me up to have a look what was going on.

I'm due to go back and see my consultant in July, for a follow up and will share

the outcome with you.

Luv Bev xx

>

>

> From: Bev <bev.heron@...>

> Subject: [ ] HARRINGTON ROD REMOVAL

>

> Date: Thursday, March 10, 2011, 10:04 AM

>

>

>  

>

>

>

> Hi All

> My name is Bev and I live in the UK

> I wondered if I could ask some advice about Harrington Rod removal.

> I started experiencing problems in 2009 mainly below the fusion, but most

recently the pain above the fusion has been terrible.

> At 1st it felt like a pulling sensation where the rod ends above the fusion

(approx T3) but in the past two weeks I have had severe pain from around T3 area

up into my neck and across into my left shoulder.

> I have virtually agreed to have the Harrington rod removed (which Ive had

since 1984), but since reading posts on here I'm worried about what the effects

will be after removal, i.e not having the support of hardware.

> Is there anyone that could share with me there experiences of having their

rods removed, i.e those that haven;t had revision surgery at the same time.

>

> Kind regards

> Bev x

>