Adults with TC surgery-Any stories? ( pro or con-I have to decide soon )

[Guest guest]

Hi ,

I was diagnosed with Lipomeningocele ten years ago when I was 36. In the eight

years that followed I had five untetherings. Before the first one I didn't

experience any pain really - only slight pain in my calf that I never would have

even considered having surgery for and never interrupted my life.

The surgery was to halt neuro decline from the tether, bladder dysfunction,

muscle wasting in my legs, etc. This first surgery did halt the muscle wasting,

but I lost all bladder function and had to start self-cathing shortly after the

surgery and the pain I woke up with from the surgery never left me.

The remaining surgeries were for neuro decline that just wouldn't coming - but

also mainly to try to get rid of the increasing, debilitating pain. None of the

four successive surgeries stopped the pain for more than about a month. The

pain was always there after the surgeries, but in my opinion, because I was

recuping from surgery and not moving about much, the pain seemed like it

declined slightly, but as soon I was up and about on my feet again, the pain

returned and new areas of pain and decline always started.

I need to also add that before most of these surgeries I had either fallen on

ice or in one case, was involved in a very bad car accident. These incidents

all made neuro decline come about quickly and brought more pain also.

I've been told by many, many neurosurgeons that to reoperate for the main

purpose of pain relief is not productive. It will usually not alleviate pain,

although will at times halt neurological decline and if you're lucky, reverse

some decline.

I stopped having untetherings, even though offered to me, because of my past

experience with them. My neurosurgeon was great and did everything surgically

right. It was just my body - and as I always say, the nature of the beast of

tethered cord.

Since my decision to no longer even contemplate having another untethering

unless I lost or was losing the use of my legs, I have concentrated on managing

the symptoms. I've been very lucky in that I finally found a way to manage the

pain and even if this doesn't last forever, I'm one happy person to not have

that back pain anymore. I could not tolerate the side-effects of Neurontin

orally, but intrathecally - it's doing an amazing job with no side-effects. I

still take anti-spasm meds for spasticity and spasms and break-through meds for

activity related pain, but to wake without that all-encompassing back pain is

amazing.

I also questioned how many times I could be operated on - was I limited in the

number of times I could be untethered and by having repeated surgeries, was I

running out of my surgical options for later in life. I've been told, no, I can

have as many as needed. But, as they (nsgs) say that, they also point out that

due to my body's unusual ability to produce a great amount of scar tissue, that

because my back has been opened/closed numerous times, it's like " hamburg " back

there. Very opposite views in my opinion and very contradictory.

You have a syrinx though and that makes this decision not only out of my area of

experience, but also a much more complex decision. It was my understanding that

syrinxes can be corrected. If that's the case, have you considered just having

the syrinx " fixed " and leave the tether alone for now to see if the syrinx is

the culprit of any neuro/pain issues you are experiencing?

I also should add, my last untethering: because I have " hamburg " for a lower

back, they are no longer able to seal the surgery site as well as it should be

and I had a spinal fluid leak, to the outside of me, for a bit more than 57 days

and had to lay flat in my bed at home for those 57 days trying to get it to

stop. I had to beg my doctor to reoperate to try to find the leak and correct.

I was fortunate, he did reoperate, found the leak and corrected it. But, those

fifty something days were hell.

I now have a pain pump as I've mentioned previously. And while I can't tell you

what I would do in your shoes, I can tell you what I have decided and it sounds

like we have similar medical histories with pain and untetherings. I have made

the decision, as stated above, that until I lose the ability to walk (and even

then to be honest, not sure if I would), I will not even consider an

untethering.

I have made a conscience decision to treat the symptoms I have as aggressively

as humanly possible. Again though - I'm very fortunate, up until I joined this

Medtronic/Neurontin pain pump study, my pain was uncontrolled even though on

many, many, many controlled drugs and anti-spasms. I do believe there is a fix

for pain and you just have to be diligent and consider all possible avenues even

when previous attempts have failed or seemingly similar drugs have failed. Pain

is horrible to live with and I know that it always got to the point where I

didn't care if I woke from surgery with the loss of use of my legs - I wanted

that chance of getting rid of the pain. I woke from my third surgery unable to

move or use my right leg - it came back a few days later, but I didn't care - I

had a " chance " at alleviating my pain. That was all I concentrated on.

I am going to start having botox injections in my lower legs again for the

control of the spasticity also. While these are very painful to have done, it

does a fantastic job at alleviating the spasticity.

With the advances they are making in pain mgt. I have no doubt that very soon

there will be something for everyone. The clinic I go to is now studying some

kind of synthetic snail toxin - the actual snail toxin was terrible during the

first phase, but the synthetic version I guess is helping many people. My

dollars are on people getting help with pain by joining pain studies and finding

the right ones for the type of pain you have. It takes years and years for

these drugs to be approved by the FDA and in the meantime, we're waiting for

them, but join a study and you have instant access to them. If one doesn't

help, you move on to the next study.

I'm sure I'm not helping you make this very personal decision. However, if push

came to shove and I had a to give advise to you it would be this: Find out how

much decline/pain the specialists feel the syrinx is causing and if they feel

they could fix just that. Find any and all pain clinic studies in your area,

make detailed lists of questions to assure you join the one that fits you best,

and try that before attempting another untethering for pain control. Try

another drug in your pump ... do any and all before another untethering " just "

for pain control. If one study trial doesn't help, hop in the next bed and join

the next one.

I'm reading a book, " Blink. " Basically (and I'm sure everyone has heard of this

book by now) it states that the decisions we make in that one second where we

unconconciously think of the decision, is the right decision as often as when we

deliberate a question or decision and make it on gathered information that takes

time and effort. I look at this book's message this way, our gut tells us the

right answer almost always 100% of the time, when we listen.

So, what is your gut telling you?

Kathy

Adults with TC surgery-Any stories? ( pro or con-I have to

decide soon )

I have posted twice about having to decide if I am going to have TC

surgery for my TC at T7-9 from 2 spinal cord tumor/syrnix

surgeries. I have received one response from someone whose final

surgery-her third did not go well but, she said she wouldn't change

it. What has everyone else done or was it to the point where there

was no options??? I have to decide by early next week. I am seeing

my Neurosurgeon for the third time. I am racking my brain with all

the options/possiblities/results pro/con.

Surgery- untether the cord, bowel/bladder may get better/ current

severe pain may get better. BUT, it may just form more scar tissue

and re-tether, each surgery has caused more deficits in my body and

increased my pain. I already have a pain pump and take probably 8

oral meds. I keep coming out from surgery still able to walk and

function alittle but, how many times can you operate in/around

something the size of your pinky?

No surgery- No rehab-Yeah, no hospitals, no more waking up and

hoping my toes move. But, the current bowel and bladder issues will

just get worse with time to where I have no function ( currently not

able to use bowels most of time and bladder is to the point where I

cathetherize 75% of the time. Will the scarring just get worse and

what does that mean long term?

My surgeon says he is 60% sure but, likes to be 90% sure. Dr. Jallo

at 's Hopkins said he was 50/50 when I sent him my MRI disk. My

other Dr.'s are all unsure if I should do it so, the weight of the

world in on me and my wife.

What would you do? What have you done those of you who had to make

a similar choice. What were/are you long term results. Any and I

mean ANY help would be greatly appreciated.

Thanks,