Loss of Sensation UPDATE Post 12 and Post 17

[KatWrangler]

Background - We know her spinal cord is re-tethered.


So two weeks ago we had our first session of this electro stimulation thing to Gabrielle's right leg. She felt it, session went great.

Last week we were all sick and I cancelled the appointment.

Fast forward to this afternoon. The PT had problems with the first machine she used. So then she decided to try another one. She kept increasing the voltage and Gabrielle didn't even move. Thinking something was wrong with the machine she hooked it up to herself, it worked fine. The she put the electrodes on my arm, I felt it.

So needless to say it looks like she has loss of sensation to a degree on this leg that has happened within the last two weeks.

The PT was going to leave a message for the NS and the Ortho (this is all at a Children's hospital). I plan on calling both the NS and the Ortho today myself.

Suggestions? Thoughts?

[KatWrangler]

Ortho just called. They talked with the PT and have left a call in for the NS.

[sbgrace]

I'm not experienced enough to give any relevant thoughts but that makes me want to cry.

Why no surgery "now"?

[theretohere]

Originally Posted by sbgrace

I'm not experienced enough to give any relevant thoughts but that makes me want to cry.

Why no surgery "now"?

I agree- is addressing the tether right now out of the question?

[KatWrangler]

The Neuro wants to see her. But he wants her to get the Urodynamics first. So on the 21st (next Thursday) she will have Urodynamics, see the Urologist then we go over to the Neurosurgeon's office. Depending on that and his exam will determine our next step. I am thinking it will probably be an MRI.

The tethered cord and to have or to wait on the surgery is complicated and depends on the Neurosurgeon and how aggresive they are. The more surgerys she has the more scar tissue, which would increase her chance of a tether doing more damage. Its a catch 22.

For example her right leg was fine prior to January 2009. But in the middle of January I noticed her foot curving. So they put her in a hinged DAFO and her Neurosurgeon ordered an MRI to check her syrnix.

We did the MRI in March and the syrnix was fine. So that Neuro gave us the option of wait and see or go ahead with the surgery. Since she had just had a de-tethering the February before, we just couldn't put her thru another surgery so soon. The damage to the foot was done.

It is so confusing. Most Neuro's wait for bladder and bowel changes. Or like Feb 2008 she was falling, was refusing to take the stairs up or down, complaining of pain. But bladder and bowel seemed the same. We opted for the surgery. When the Neuro came out of surgery (he is a highly respected Neurosurgeon at Primary Children's) came out he said, I am so glad you decided on the surgery now. She was tightly re-tethered.

So in that instance, our instinct was right. The time was right for the surgery.

It is a tough tough call to make. Very complicated. They can actually cause more nerve damage just by doing the surgery.

[sbgrace]

That makes sense and oh how difficult. I hope the decision is clear for you and the neuro one way or the other.

[KatWrangler]

Clear as mud.

I will let you know what we find out next week.

[KatWrangler]

Tomorrow are the appointments. Crossing fingers........

[sbgrace]

Wishing you good luck tomorrow.

[theretohere]

Wow, mama, I had no idea- hope the appointments clear it a little!

[KatWrangler]

Thank you! I will let you know what we find out.

[KatWrangler]

Update

She had the Urodynamics Study yesterday. Bladder pressure is great. Bladder looks great. Pressure was at 16. So no real bladder changes.

The Uro did say let's work on getting her continent by increasing her Ditropan and frequency of cathing. Now we will cath every 3 hours instead of 4.

Then we went to the Neurosurgeon. Since her bladder is looking really good, he doesn't want to de-tether her right now. His concern is just by doing the surgery he could do more damage. Now, she does have deterioration in her right leg. But again, there isn't enough going on with her right now to warrant surgery.

He was going to go talk with the Orthopedic Surgeon and discuss our options and call me today. I don't know what the options are. Different Therapy? Different Brace? Surgery? Tendon transfer surgery has been mentioned at our first appointment.

I am a jumble of emotions. I want her fixed and her leg not to get worse. I get what the NS is say, I really do.

[sbgrace]

How incredibly hard. Did he say how long to wait? Is it a situation where if you see faster changes in the leg they'll do it or they are waiting for something else instead?

[LaurieG]

I'm sorry Anne. Gosh, that's hard to hear. Hopefully there will be a treatment to help preserve or return sensation to her leg. Keeping my fingers for that.

Great news from the Uro though!

[KatWrangler]

Rachelle,

He didn't really say. She has to have more deterioration overall. Like falling alot, pain in her back, refusing to walk. But they just don't want to mess with her back with her bladder doing so well. She still can't pee on her own, but she doesn't dribble. Something a third de-tethering could cause. The more surgeries the more scar tissue forms.

He didn't call us yesterday so I don't know any more.

[workjw]

Just saw this thread. Sorry you guys haven't been able to get any more concrete answers. Glad to hear that the bladder testing went well, and I hope you get some encouraging news from the doctor.

[KatWrangler]

The office called. The NS is out of town this week. He will call us next week.

eta - Removed my irked smiley. I am wondering if the NS is on his way to Haiti. I heard a big group of Docs left from here and will be there a week. Since he is Ped NS I am sure he is needed badly down there.

So I will wait patiently.

[theretohere]

Originally Posted by KatWrangler

The office called. The NS is out of town this week. He will call us next week.

eta - Removed my irked smiley. I am wondering if the NS is on his way to Haiti. I heard a big group of Docs left from here and will be there a week. Since he is Ped NS I am sure he is needed badly down there.

So I will wait patiently.

mama- I wish you had more answers!