Re: spine shortening surgery (Chip)

[Guest guest]

Hello Chip

There is so much to happen, And i tolk alot with Marit about it.

For me personal, It 's a big issue and not only about the problems and pain

anymore. It's more, It's also about how patients get out of the bureaucratic

world

Of Hospital style that we have in the Netherlands.

In there eyes I am just a new patient. No thats not negatif thinking.

I am not in the spina team. but i am this in the eye of the medical staff.

Nothing is personal.

Marit just told you the same. The fact is that we know exactly what is going

After being 20 years up and going down. with pain.

I made them angry already . But my first appointment is a fact.

Don't cry if i explain you.

I need to go to a assitent MD and then for a second Co assist. MD

They gone to make a appointment with a neurologist.

this is sooner i espected 28th of November.

As you bin told by Marit, she had the same troubles.

Fact is that we got in the end exactly the same PhD.

But it will be witht a little luck take only 8th months till i get a

confirmation to go a

PhD. They read your letter and theystart all oover again.

I hate this. In fact the realy angry about me I talk about the PhD. Dr.Prof.

vanderTop

He is the men that must decide if a operation is possibly an option.

You know we driving him mad with solutions.

The PhD is the only one that will do this complete new way of Surgery.

He was on the base of the whole study but has as only one doubth about

the long term conditions of a patient.

So he want see first also the mistakes made in the world by this sort of

Spine Shortning.

In fact i give him the information about difficult conditions of some

patients but also your story.

You told in this forum and your conditions . I his eyes you just a medical

wonder.

Why:

The fact you nerves seem to heal. Thats the point of isseu.

I wrote with him about it alot about it And Marit got a medical research if

it is a possibly long term reason

to do it.

Happy:

Yes i am . Marit got a YES.

But the PhD told her also that he need to exam her every 3 months for

serveral years. Simply she is the first one.

That made her scared. And yes i understand.

For me it is much more difficult because they won't operate me.

But the fact is i got a backfall and they can only give me pain treathment .

But thats to heavy. And i need more and more each year.

Now i can only walk 100 feet.

Now i fight so bad against it, So it will be a fight first shortning the

medical paper business

Before i can official going to the medicall experts on this.

Yes it was i stratagic way to send Marit first. She got the most points to

get a change.

But she has young kids Chip and she is scared because nobody is positif.

The second PhD:

Now she need to talk soon with a orthopedic PhD.

He will deside when and tell Marit about the risks.

There will be always risks on every surgery Chip.

The point will there risks because tis operation is done.

As i did resaerch for 18 months now, The answer is no.

The risks are Spine infections, discovering Lipomas , Operation failure

caused by equipment and mabe the biggest issue is Spine fleud leaks.

Second risk group:

accidentical problem , Falling , scare tisseu pressure , Unknow infections.

Known problems, pain will fail to stop.:

Sacral damage: Limb and torrix damage.

So tell me Chip are the patient that come to a dockter with ther own

investigation Report.

Did you ?

Thats how we need to work in the Netherland right now.

The fact is our group is to small. And we need to pay 16000 Dollar and go to

the USA , Canada Russia Ukraine India Balkan ore China.

They have done the operation there with succes.

None wrote about problems. Only in case there was a death issue. One in USA

and one in China.

We can not know if there are more causes . I got the failures from a medical

paper.

None of the two case where death coz operation problem but after infections.

This can even happening when you cut you finger ore other surgery.

As you see , in Europe they just wait a other few years to much long term

outcome before they starts diong this on SB patients.

Every othopedic surgion can do it if he did spine correction , in case like

Scoliose ore Kyfoscoliose

Hope this helps how to explain my home work.

As last:

The biggest issue do nothing is. The medical law. And the risk of claimes.

no hospital take this rixk anymore after seen what happening in the USA.

This in fact is the most import matter to do not this operation.

We have like the most Asian, European and Canada a free medical help.

In the Netherlands and most european countries also Canada we pay health

insurance (Netherlands about $150 a month)

So it is payd by every dutch healthy ore not.

-----Oorspronkelijk bericht-----

From: Chip

Sent: Saturday, September 24, 2011 12:54 PM

To: tetheredspinalcord

Subject: Re: spine shortening surgery (Chip, i got good news)

Jan,

Sorry for now answering sooner. It's been a while since I checked in.

That's great news for Marit. She sent me an email the other day letting me

know.

Hopefully your doctor will agree to do the surgery for you as well.

Keep us updated.

Chip

Sent from my iPad

On Sep 6, 2011, at 11:30 AM, " Jan Willem Weijers "

wrote:

> Hello Chip,

>

> Today i got a appointment with my rehab doktor.

> And gues what, Marit (you know her allready) a dutch friend.

>

> She had the same with our neurosurgeon.

>

> He has a good orthopedic surgeon and they talked many times about it. He

> has

> done with success but never for a tetheredcord after having read your

> stories but he said that we have long been problems with bladder and

> kidney

> and that this is not just disappear because the already damaged. But he

> gives a chance of succeeding.

> So Marit got YES.

> She know i am put it on the forum.

>

> And now I, I, too, albeit with a lot of risk. Also advised to talk with

> him.

> But my doctor is revalalidatie not really sure. " when my back under the

> knife was " then I did not really know. I asked him the question against.

> Now

> what if you had too much pain. and the doctor can not treat the TC?

>

> He gave me the same, but told me if it goes wrong, you're in a wheelchair

> and I'd rather not see that happening.

> Eventually he gave me the same so I will hopefully have the second

> operation

> in which the Netherlands will.

> We went there both for after I had read your story.

> If half years after I have less pain now, I am more than satisfied. Of

> course I hope for better results.

> I will soon make an appointment.

> Marit will go after everything has been processed. sure to inform you

>

> -----Oorspronkelijk bericht-----

> From: Kellie

> Sent: Thursday, August 11, 2011 4:01 PM

> To: tetheredspinalcord

> Subject: Re: spine shortening surgery (vertebral osteotomy

> subtraction)

>

> Thank you for the info Chip.

>

>

>

>

> Subject: Re: spine shortening surgery (vertebral osteotomy

> subtraction)

> To: " tetheredspinalcord "

> <tetheredspinalcord >

> Date: Wednesday, August 10, 2011, 1:08 PM

>

> Sue,

> I don't walk with a cane or crutches. On good days you can't tell that I

> had the surgery at all.

> I believe I am the patient he is talking about and that there might have

> been some misunderstanding. For 20+ years I have had leg cramps that feel

> like charlie horses (with no muscle contractions). I am having an increase

> in the numbers of these, but am assuming it's med related. I'll have to

> contact him again to clarify. I had a CT in June and there is no issues

> with the rods and screws.

> My cord will always be tethered. The surgery wasn't in the area where my

> cord is tethered. I'm tethered at L3-4 and this surgery was from T10 to

> L2.

> Like I said, I do still have issues, but I still think it was well worth

> the

> pain and time to have had the surgery. I hope my misunderstanding with my

> doctor hasn't discouraged you or anyone else. For me, this was still the

> right thing to do.

> I will send you those papers back channel.

>

> Chip

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Wednesday, August 10, 2011 12:20 PM

> Subject: Re: spine shortening surgery (vertebral osteotomy

> subtraction)

>

> Hi Chip, Thank you for replying so quickly. And yes I would like to read

> those papers you have. Can you email the papers to me?

> I'm not bed ridden yet put have more pain than before and can't sit as

> long

> or walk (with crutches) as far as i used to. Also have bladder and bowel

> issues. I use a motorized wheelchair for distance, like in a grocery

> store.

> Do you use crutches or a cane at all?

> Dr. Chi told me that my scoliosis and tethering is worse, more involved,

> than the 3 tethered cord patients he has worked on (guess that includes

> you).

> I'm glad to hear that it helped you. My concern is that the patient he

> operated on 1 and half yrs. ago called him last month and is having

> symptoms

> again. But Dr. Chi couldn't tell me if the cord was retethered as the

> patient hasn't had an MRI yet.

> Thanks again Chip. I look forward to reading those papers.

> Sue

>

>

> >

> > Sue,

> > I had this surgery done in June 2010. Â Dr. Chi did the surgery. Â Like

> > you, it was my last resort. Â Thus far, it has done wonders for me. Â

> > Just before surgery, I was just about bed ridden and had to take a lot

> > of

> > pain meds just to get through the day. Â I still have some issues, but I

> > can get through the day without too much difficulties. Â

> > I was in the hospital for 8 days, and then in an inpatient rehab center

> > for 8 days. Â I was told to expect about 3 weeks of rehab, but things

> > when

> > very well for me.  Â

> > I have several papers about this type of surgery if you would like them,

> > just let me know.

> > Chip

> >

> >

> > ________________________________

> >

> > To: tetheredspinalcord

> > Sent: Wednesday, August 10, 2011 10:20 AM

> > Subject: spine shortening surgery (vertebral osteotomy

> > subtraction)

> >

> >

> > Â

> > Hello all,

> > It's been a long time since I posted here but have checked messages from

> > time to time.

> > My last detethering surgery was 9 years ago, it was my third surgery

> > since

> > 1987. Last year I started having symptoms again and this spring I

> > emailed

> > Dr. Proctor in Boston about them. He referred me to Dr. Chi in

> > Boston. I saw him Monday 8/8/11. I expected to hear about the

> > traditional

> > detethering surgery and the possibility that it could not be done this

> > time due to higher risk of damaging nerves, my age (57) and diabetes.

> > However, Dr. Chi told me about a new surgery for tethered cord, spine

> > shortening surgery.

> > I have to have an MRI to make sure there is nothing else going on but it

> > sounds like this surgery is my only option, other than just not having

> > surgery at all and getting worse as time goes on.

> > Has anyone had this surgery? or know someone who has had it? I searched

> > for info and found a few abstracts about it.

> > Dr Chi has done this surgery on 3 people with tethered cord and has done

> > this surgery on dozens of patients for other problems.

> > Any info would be greatly appreciated.

> > Sue McWha

> >

> >

> >

> >

> >