Re: Second Surgery for TCS a success, details as promised

[Guest guest]

BEFORE YOU READ LET ME CLEARLY STATE THIS IS MY STORY AND NOT

MEDICAL ADVICE! These decisions I made for myself, and I only

posted this because I have never seen a well documented account of

the second surgery process.

PLEASE DO NOT USE THIS AS A JUSTIFICATION TO HAVE SURGERY

YOURSELVES. I AM NOT A DOCTOR, USE IT AS A PRIMARY SOURCE AND AS

INFORMATION ONLY.

ABSOLUTELY NOT MEDICAL ADVICE!!!

>

> As some of you know I joined this group after TCS symptoms

appeared

> after a remission of symptoms following a surgery in August 2001.

>

> Firstly I want to bluntly state, this post is by no means meant to

> gloat or suggest that a second untethering procedure is a cure for

> TCS. I simply wish to clarify my symptoms and reasons for

choosing

> a second surgery and it is my hope that some of you may find close

> similarities between your situations' and mine and might use my

> story as a guide in either choose or not choose a second surgery.

I

> understand that Second Surgeries have not been detailed in close

> detail in this group and seem largely discouraged amongst most

> medical professionals; despite the fact that they more offer

> substantial improvements in the quality of life and function of

many

> TCSers. I plan on writing a more detailed article in the future

> with images. This will be much more brief.

> _______________________________

>

> In the beginning, I was an asymptomatic child. My TCS was largely

> undetected because the fatty dimple I had on my Sacrum was so

small

> and I was an athlete through most of my adolescence.

>

> My pediatrician noticed that I had scoliosis at age 11 and I was

> followed by an Orthropedist for it through my teens, but it never

> progressed past 15% curvature and 10% is within the norm. So my

> symptoms were minimal.

>

> Fast-forward from 11-17, when I went to footlockers my right foot

> seemed to be a half-size smaller than my left and had a much

higher

> arch. It was the arch that was decreasing the size of the foot,

and

> I developed hammertoes on this foot as well. I soon developed

some

> orthropedic pains in my foot...and tendon issues. Nothing in the

> left and no nerve pain.

>

> ***The Crucial year, spring 2000, Shortly after the winter season

in

> New York I had some coldness and numbness in my right foot. At

> first I thought that I had sprained something and tried to wait it

> out but after a month I noticed the sensation did not go away. I

> also developed some draging of the leg. Got scared and so an

> Orthropedist. He was alwarmed and noticed that my right calf was

> noticeably smaller than my left. This coupled with high-arch on

one

> foot and numbness lead him to refer me to a neurologist. The

> neurologist linked the symptoms and refered me to Dr. McCormick at

> Colombia Presbysterian hospital in NY and MRI was done and TCS was

> found. Had a transitional lipoma mostly bulked on the right and

> covering T-11 to the end of cord.

>

> McCormick described TCS to me and said surgery could be done. He

> also mentioned a 1% risk of pyralysis and a 10% risk of

substantial

> worsening of sensation, motor function, bladder and bowel

symptoms.

> Plus the chance of retethering. He said surgery was an option but

> it didn't seem like he was selling the option well. He also said

> that I could stay the way I was when I entered his office for the

> rest of my life(this was very stupid advice). I thought hey I

could

> live like this for the rest of my life and put surgery off.

>

> Bad decision, I waited a year before seeing DR. McCormick before

> deciding to have surgery and during this time I rapidly lost

almost

> full sensation knee down on my right leg, developed sciatica and

> extreme back pain. I didn't want to stop college in the middle of

> an academic semester so I waited till the summer.

>

> When Dr. McCormick saw me again he seemed alarmed and said we

should

> definitely have surgery. I inevitable chose Dr. Jallo over him

(who

> was at Beth Israel in 2001) because Dr. Jallo could find and

earlier

> surgical date which would allow me to start my senior year on time

> so I could graduate.

>

> The first surgery was a partial success. On the one had my back

> pain went away. On the other hand I had lost more function in my

> right leg; still I had no nerve pain. In hindsight it was the

right

> decision. I wouldn't go back to Jallo though because I dislike

his

> bedside manner, he is hard to get in touch with, and was very bad

at

> informing me about my post-operative symptoms.

>

> I was bouncing back over a year and a half and graduated from

> Columbia University and the Jewish Theological Seminary. Got a

job

> as a paralegal in NYC and was extremely active. I felt no

> limitations and mentaly overcame my actual disability. This was

> fairly easy considering I had no pain of any sort.

>

> One day in March 2003 I felt burning in my left leg and foot. I

> knew something was wrong. I was informed about retethering and I

> was scared. I also never experienced any symptoms in my left leg

> and since I relied on that more normal leg for support. I

couldn't

> tolerate the idea of loosing that one as I had the right.

>

> Contacted Jallo he said he doubted I retetherd and that pain

wasn't

> a classic symptom of it(WRONG!). I contacted several surgeons

over

> a period of months and was broken to tears. I found that some of

> the surgeons were willing to consider that I had retethered but

> thought the risks were to high of operating. I also found several

> surgeons who played dumb like Dr. Jallo going the, you already had

> surgery your cured! This is something else that may go away on its

> own. I was suddenly being funneled into this untreatable patient

> category and slowly was realizing that the pain would be forever.

>

> The pain had spread over the months burning every leg down all

> hours, I left my job as a paralegal to find effective pain control

> meds and techniques. This period lasted 6 months and I made some

> substantial gains in pain control but nothing that brought me

close

> to normal.

>

> The nature of the pain that I had:

> Started as burning in left foot intermittently throughout the

day.

> New symptoms appeared as weeks went by, ranging from painful numby

> patches, stabbing feelings of glass shearing my thighs and calfs,

> diffuse full numbness. Pain spread bilaterialy including sadle

> area, below the navel, and all other areas waste down. Moreover,

> pain became chronic as in every minute of the day without any

moment

> of relief. Final pain symptom was hypersensitivity to certain

touch

> sensations; ie. the rubbing of denim jeans on my legs facilitating

> numbness and burning in my legs where rubbing occured. Sexual

> intercorse cause my penis to burn go numb and go limp(Alright no

> joke and you can take a break to laugh here. This absolutely

sucked

> and made sex unpleasant and as a 23 year old man with a high

libido

> this was totaly unacceptable).

>

> Realizations at this time:

> meds like Neurontin, Nortryptaline, and Tramadol are extremely

> helpful. No single one of these medications on its own seems to

be

> effective in pain control even at higher doses. Low doses of all

> three medications provided the most substantial relief but never

> 100% relief. I should have been on meds as soon as my pain

appeared

> instead of stubbornly trying to manage without the help.

> Hypersentivity to touch went away after prolonged use of meds

(thank

> god sex was good again). The medical cocktail I was on took weeks

> to integrate in my body before the most substantial gains were

made.

> Carrying around a bag of pills all the time sucks. Being afraid

> that your Dr. forgot to renew a prescription sucks. In short

> relying on popping pills as a crouch is a handicap in itself, it

> sucks and it becomes a debilitation of its own, which only

> reaffirmed in my mind how abnormal I was. Still it is stronger to

> get help and than function than to despair.

>

> Issues worsened and I kept doing research. I made an appointment

> with Dr. Wissoff(chief neurosurgeon of NYU medical

> facility) to get his opinion. This was largely by chance and

> because I was relocating all of my medical care to NYU medical

> centers. Wissoff said that my symptoms were classic retethering

> symptoms but the amount of relief that could be gained from

surgery

> was unpredictable. He also mentioned that there was again the

risk

> of worsening and suggested that I see Dr. McClone in Chicago and

Dr.

> in Boston for their opinions and to report back to

> him. He gave me a letter to take with me.

>

> Dr. McClone said that he believed I should have surgery because

the

> symptoms indicated retethering and he was worried about further

> deterioration. He thought that there was a 70-80% chance of

abating

> pain. Dr. was more pessimistic and largely believed

> in continuing with medications. In all honesty I may have

followed

> this approach if I was already established. But, as a 23 year

old

> with the prospect of taking medicines forever and the desire to go

> to law school and have children. I thought the risk had to be

taken

> because there was a chance at a normal life. I returned to Dr.

> Wissoff and we made the date. October 19th 2004. just last week.

>

> **One thing that all surgeons were afraid of was the chance of

> arachnoitodis. Both TCS and Arachnoidoitis involve the cord

> tethering to scar tissue, but Arachnoidoitis is a condition where

> scar tissue constantly grow around the whole diameter of the dura;

> whereas TCS involves just local scarring at the original point of

> surgery. Arach would only be diagnoseable by seeing the contents

of

> the spinal canal and even in the tethering is removed it will

> reoccur and worsen as a result of surgery within months.

>

> Fact: TCS surgery rarely causes arachnoitodis, but there is a

chance

> that it will result from a TCS operation.

>

> I was scared as hell going into the surgery but was well

informed.

> TO my surprise when I woke up afterward, I noticed that I was no

> worse off than I when I went in. This to me meant surgery was a

> success.

>

> Dr. Wissoff meet with me in recovery with a smile on his face. We

> briefly talked he said he believed the procedure was successful.

> the scar tissue was easily identified as were the nerves.

> Interestingly, he noted that Dr. Jallo put in a plastic barrier

> between the surgical site and the nerves to block the formation of

> scar tissue. What happened was the scar tissue used the plastic

as

> a ramp to grow directly toward the nerves. This just goes to show

> you that membranes, barriers, and etc. don't eliminate the chance

of

> retethering. Dr. Wissoff said he gave up on plastics long ago and

> said that all the plastic did was limit the space my spinal canal

> had for fluids, nerves, and scar tissue. He said he increased the

> size of the spinal canal with the bovine membrane by 20-30% so

> everything could live together in peace.

>

> It wasn't immeadiately apparent if the pain went away, I think I

am

> making gradual gains daily but surgery itself causes temporary

nerve

> pains. So I will keep reporting over the weeks to let you all

> know. One thing that is awesome is that all that garbage has been

> removed from by spinal canal and no new negative changes so I

count

> everything I gain from here as a blessing and don't expect to

worsen.

> Post-operative pain is still a bitch.

>

> Facts about me that may have made me a good candidate for this

> second surgery.

> 1. Still young 23, age complicates the gains of these procedures.

> 2. lived with new symptoms for 8.5 months so the chance of a

> reversal and remission of symptoms was high(the sooner you act the

> better the chance of remission...surgeons don't like to tell you

> this though, but Dr. McClone said this is why children have

greater

> success than many adults. When they get these pains they are

> operated on within weeks; whereas we wait months to years).

> 3. I wasn't desparate and didn't consider surgery as a cure. I

was

> mentaly prepared for the chance of loss of new function and other

> discouraging results, but I took the gamble.

>

> G-d bless you all for your support. I will continue to be active

> and continue to report back to you guys. I will also compile a

> better article in the future.

>

> Conclusion:

>

> Second surgeries for TCS are a very real and possible option for

> those with new symptoms.

[Guest guest]

Thak you SO SO SO SO much!! That was a thoughtful and very well-written, well,

essay. It was really good to hear your story presented almost like a case

history. I majored in Biology in school and have had medical asperations, so I

treat medical conditions a bit clinically (especially my son's, maybe a coping

mechanism?). However, you wrote with sincere emotion which I also appreciate.

For me, your email helped me make my mind up about Sam's surgery. At 22 months

he has worse symptoms than you did as a teen. I don't want his feet and legs to

grow even more disparate. He would never forgive me if his sexuality were to be

affected because I was too afraid for him, and I, to go through the surgery. If

you found out at 23 that your parents declined surgery out of fear would you be

angry?

Thanks so much, your story has been very important to me. Congratulations on a

successful second surgery. I hope after everything settles that you have even

more relief.

Sincerely,

Stacey, mom to Sam (22 mos., pre-op)

[Guest guest]

I hadn't read this when I replied to your original email: PLEASE DO NOT USE THIS

AS A JUSTIFICATION TO HAVE SURGERY

YOURSELVES.

You see, in trying to figure out whether or not to proceed with Sam's surgery, I

have been wondering what would happen if I didn't. He still hasn't had one

surgery, and I have been on the fence. Just wanted you to know, you helped me

see into Sam's future.

Stacey

[Guest guest]

I appreciate that you found the story helpful and although I dealt

with my symptoms at twenty many other members, unfortunately, dealt

with things in forties and fifties.

It is important to know that although we all share tcs, it manifests

itself quite different from person to person. My understanding is

that most surgeons really advocate surgery for children because most

deterioration occurs as a result of growth. After growth is finish

deterioration does not seem to rapidly progress because the spinal

cord is no longer being stretched through growth spirts.

> I hadn't read this when I replied to your original email: PLEASE

DO NOT USE THIS AS A JUSTIFICATION TO HAVE SURGERY

> YOURSELVES.

>

> You see, in trying to figure out whether or not to proceed with

Sam's surgery, I have been wondering what would happen if I didn't.

He still hasn't had one surgery, and I have been on the fence. Just

wanted you to know, you helped me see into Sam's future.

>

> Stacey