Re: Re: Neuromuscular Specialist

[Guest guest]

Have you had a brain MRI to rule out chiari malformation, and also an MRI of

your entire spine to rule out a syrinx? There is a higher incidence of chiari

malformation in those with neural tube defects.

Dee

To: tetheredspinalcord

From: stvtm@...

Date: Tue, 1 Feb 2011 20:19:42 +0000

Subject: Re: Neuromuscular Specialist

,

I am so sorry to hear you are having problems. Did they do anything in the ER

that helped? Have you had a post op MRI to see if there is any problem with scar

tissue forming? I have alot of problems with spasms of psoas and hip flexors

which can make standing difficult, I assumed this was due to TC as I could not

find any other reason. Besides Baclophen I have yet to find relief, but I have

not had surgery yet.

How did your reflexes test in the ER? (increased,decreased, absent, etc?) Did

you have EMGs and was MS ruled out prior to surgery? I only ask because I was

told MS is a differential for symptoms of TC and that was the first thing I

wanted to know if I had. I was told no, but not sure how they definitely know

for sure without having a spinal tap. What does Dr. Frim think, could it be post

op nerves still trying to settle?

I really hope things start getting better.

>

> Hi, has anyone seen a neuromuscular specialist?

> I ended up in the ER last Friday because I was not able to stand on my right

leg. Had major pain and spasms.. and numbness.

> Anyway I am trying to get it to DR. Kourosh Rezania @ Uni of Chicago. They are

pretty reluctant to see me, I am asking Dr. Frim to e-mail them.

> Is there any other disorder that can be associated with TCS that could be

causing this?I also have arm, finger and toe numbness...

> Doing all the PT, massage etc... nothing is helping.. knots and everything

else still there

> Thanks

>

>

>

>

>

[Guest guest]

Yes, so sorry you are having more troubles . I hope you are able to get in

to see the specialist. I was tested for MS by my neurologist because of my

hyperactive reflexes (clonus at the ankles) and some other wierdness I had going

on. He says that I do have plaques in the brain but they are " normal " plaques so

I guess it is just the spinal cord damage from when the cord was tethered. I

dont know , many neurosurgeons say that unless the tether is high it does

not cause upper extremity symptoms but I dont buy it. Best to be checked for

other stuff though. Many Blessings,

Subject: Re: Neuromuscular Specialist

To: tetheredspinalcord

Date: Tuesday, February 1, 2011, 2:19 PM

 

,

I am so sorry to hear you are having problems. Did they do anything in the ER

that helped? Have you had a post op MRI to see if there is any problem with scar

tissue forming? I have alot of problems with spasms of psoas and hip flexors

which can make standing difficult, I assumed this was due to TC as I could not

find any other reason. Besides Baclophen I have yet to find relief, but I have

not had surgery yet.

How did your reflexes test in the ER? (increased,decreased, absent, etc?) Did

you have EMGs and was MS ruled out prior to surgery? I only ask because I was

told MS is a differential for symptoms of TC and that was the first thing I

wanted to know if I had. I was told no, but not sure how they definitely know

for sure without having a spinal tap. What does Dr. Frim think, could it be post

op nerves still trying to settle?

I really hope things start getting better.

>

> Hi, has anyone seen a neuromuscular specialist?

> I ended up in the ER last Friday because I was not able to stand on my right

leg. Had major pain and spasms.. and numbness.

> Anyway I am trying to get it to DR. Kourosh Rezania @ Uni of Chicago. They

are pretty reluctant to see me, I am asking Dr. Frim to e-mail them.

> Is there any other disorder that can be associated with TCS that could be

causing this?I also have arm, finger and toe numbness...

> Doing all the PT, massage etc... nothing is helping.. knots and everything

else still there

> Thanks

>

>

>

>

>

[Guest guest]

Thanks!

Well the ER really did nothing because I asked them not to. I have an MRI

scheduled for the 18th so why do all the testing in that type of setting?

I was given Valium, 5mg which knocks me out!

, as I type my fingers are numb  but it usually spreads to arms, if

I cross my legs for 1 minute (I have timed!) my whole leg will be numb.

Doc Frim and my PT people think it's a good idea to go see someone. I really

have just the surgeon and a pain doc.  But I wonder TC does come with different

disorders for some people. Maybe something else is going on? How am I getting

30+ knots daily? They get so bad I can't feel my legs. 

Subject: Re: Neuromuscular Specialist

To: tetheredspinalcord

Date: Tuesday, February 1, 2011, 2:19 PM

 

,

I am so sorry to hear you are having problems. Did they do anything in the ER

that helped? Have you had a post op MRI to see if there is any problem with scar

tissue forming? I have alot of problems with spasms of psoas and hip flexors

which can make standing difficult, I assumed this was due to TC as I could not

find any other reason. Besides Baclophen I have yet to find relief, but I have

not had surgery yet.

How did your reflexes test in the ER? (increased,decreased, absent, etc?) Did

you have EMGs and was MS ruled out prior to surgery? I only ask because I was

told MS is a differential for symptoms of TC and that was the first thing I

wanted to know if I had. I was told no, but not sure how they definitely know

for sure without having a spinal tap. What does Dr. Frim think, could it be post

op nerves still trying to settle?

I really hope things start getting better.

>

> Hi, has anyone seen a neuromuscular specialist?

> I ended up in the ER last Friday because I was not able to stand on my right

leg. Had major pain and spasms.. and numbness.

> Anyway I am trying to get it to DR. Kourosh Rezania @ Uni of Chicago. They

are pretty reluctant to see me, I am asking Dr. Frim to e-mail them.

> Is there any other disorder that can be associated with TCS that could be

causing this?I also have arm, finger and toe numbness...

> Doing all the PT, massage etc... nothing is helping.. knots and everything

else still there

> Thanks

>

>

>

>

>