Re: TSC questions & concerns

[Guest guest]

Hi Donna -

As you have already found out, most doctors are not familiar with tethered cord

syndrome, or do not fully understand the seriousness of it. I am shocked though

that your neurologist thinks tc is no big deal. TC can cause all of your

symptoms and you really need to see a neurosurgeon as others have mentioned, but

make sure that neurosurgeon is experienced with TC. Do you have a written copy

of your MRI report? If so, what are the exact words that describe it on the

MRI?

Regarding the headaches, as several have mentioned, when you do see a

neurosurgeon make sure they screen you for chiari malformation as well (MRI of

brain). Or ask your neurologist to order an brain MRI. Not all people with TC

have chiari but there is a definite correlation so you need to be screened for

that since you have headaches.

I suffer from chronic headaches and was hoping my TC surgery last year would

make a difference -- unfortunately it didn't for me. But surgery has helped

others. Am now looking into other treatments, am seeing an integrative medical

specialist and have just been diagnosed with heavy metal toxicity and am hoping

treatment makes a difference for me (I also have lots of other strange

symptoms). My MRI did not show any evidence of chiari. Headaches can be caused

by so many factors but it is important to rule out any serious neurological

problems that could be causing them, such as TC, chiari, etc. Suprised you

neurologist has not ordered a brian MRI or CT to rule out anything serious. A

CT scan will not show chiari.

Surgery is such a big decision so don't jump into it, especially if your

symptoms are not severe. However, also know that the longer neurological

symptoms for TC go on, the less likely they will be reversed with surgery. The

main goal of surgery is to stop progression, and some people are lucky to have

symptoms reversed. Everyone's experience with surgery for this condition is

different - many a great success, and others have been worse off. There are

also different types of tc and severity of symptoms varies greatly. I agree

that you need to get several opinions on your case if possible. A great site to

get basic information on the types of tethered cord is Nina's website, a member

of this group. www.btinternet.com/~tetheredcordresources

There are lots of members who have tried different medications -- I use

amitriptiline and it does help keep the completely debilitating headaches away

although am still suffering from daily headaches.

I am pretty close to you.... on Vancouver Island but since I'm in Canada my

resources won't help you.

Good luck, feel free to ask any more questions you may have and keep us posted.

Dee

To: tetheredspinalcord

From: emaher1916@...

Date: Tue, 7 Jul 2009 15:32:20 +0000

Subject: Re: TSC questions & concerns

Here are some Nsg Profiles from the Univ of Washington Medical Center --

if you wish to make an appointment you can do so directly from their website and

a patient coordinator will contact you.

http://medical.washington.edu/bios/view.aspx?CentralId=32849

http://medical.washington.edu/bios/view.aspx?CentralId=1156

I would also at very least suggest contacting them for referral to appropriate

Nsg in your area -- as often you have better luck with teaching hospitals.

Good Luck!

--

> >

> > A tethered cord is absolutely a big deal! You really need to see a

> > Neurosurgeon.

> >

> >

> >

> > Anne

> >

> >

> >

> > _____

> >

> > From: tetheredspinalcord

> > [mailto:tetheredspinalcord ] On Behalf Of dyineverett

> > Sent: Tuesday, July 07, 2009 7:53 AM

> > To: tetheredspinalcord

> > Subject: TSC questions & concerns

> >

> >

> >

> >

> >

> >

> >

> >

> > Hi all, I am new here and wanted to ask a couple things (if anyone knows).

> >

> > 3 yrs ago the spinal dr did an MRI and informed me I had a " slightly "

> > tethered cord " Ever since I have been going to my regular dr and a

> > neurologist (for debilitating headaches). They both seem to think the TC is

> > no big deal.......? I have a leg & foot deformity, differing lengths,

> > scolosis, horrible headaches, back pain, pinched siatica (3 months now), leg

> > pain, and blatter problems.

> > I guess my questions are:

> >

> > 1: Can TC really be no big deal to brush it off?

> > 2: I have been on SO many meds and blockers for the different pains, what

> > works for you?

> > 3: Should I find new Dr's?

> >

> > Thanks for listening

> > Donna

> >

> >

> >

> >

> >

> >

[Guest guest]

Just google it and you will find lots of info:

Chiari

malformations are structural defects in the cerebellum, the part

of the brain that controls balance. When the indented bony space at the

lower rear of the skull is smaller than normal, the cerebellum and

brainstem can be pushed downward. The resulting pressure on the

cerebellum can block the flow of cerebrospinal fluid (the liquid that

surrounds and protects the brain and spinal cord) and can cause a range

of symptoms including dizziness, muscle weakness, numbness, vision

problems, headache, and problems with balance and coordination. There

are three primary types of CM. The most common is Type I, which may not

cause symptoms and is often found by accident during an examination for

another condition. Type II (also called Arnold-Chiari malformation) is

usually accompanied by a myelomeningocele-a form of spina bifida that

occurs when the spinal canal and backbone do not close before birth,

causing the spinal cord to protrude through an opening in the back.

This can cause partial or complete paralysis below the spinal opening.

Type III is the most serious form of CM, and causes severe neurological

defects. Other conditions sometimes associated with CM include

hydrocephalus, syringomyelia, and spinal curvature.

Dee

To: tetheredspinalcord

From: dyineverett@...

Date: Tue, 7 Jul 2009 16:00:42 +0000

Subject: Re: TSC questions & concerns

Thanks for all the info !

I live just 20min north of Seattle.

I remember having the headaches when I was young, but what really " set-off "

everything was I got one so bad that I was in the Hospital ER on Christmas

morning 2001. The only way to stop it was moraphine.

The Neuro has been treating them as migraines, with diff migraine meds. But none

are working. (been thru about 20 so far)

I personally think they are related directly to my back & such.

What is Chiari? Never heard of it.

Thanks

Donna

> >

> > A tethered cord is absolutely a big deal! You really need to see a

> > Neurosurgeon.

> >

> >

> >

> > Anne

> >

> >

> >

> > _____

> >

> > From: tetheredspinalcord

> > [mailto:tetheredspinalcord ] On Behalf Of dyineverett

> > Sent: Tuesday, July 07, 2009 7:53 AM

> > To: tetheredspinalcord

> > Subject: TSC questions & concerns

> >

> >

> >

> >

> >

> >

> >

> >

> > Hi all, I am new here and wanted to ask a couple things (if anyone knows).

> >

> > 3 yrs ago the spinal dr did an MRI and informed me I had a " slightly "

> > tethered cord " Ever since I have been going to my regular dr and a

> > neurologist (for debilitating headaches). They both seem to think the TC is

> > no big deal.......? I have a leg & foot deformity, differing lengths,

> > scolosis, horrible headaches, back pain, pinched siatica (3 months now), leg

> > pain, and blatter problems.

> > I guess my questions are:

> >

> > 1: Can TC really be no big deal to brush it off?

> > 2: I have been on SO many meds and blockers for the different pains, what

> > works for you?

> > 3: Should I find new Dr's?

> >

> > Thanks for listening

> > Donna

> >

> >

> >

> >

> >

> >

[Guest guest]

Tethered Cord is not no big deal if you have those Symptoms.

I would get a Second Opinion, or even more, if I were you.

Brande

mymocha@...

They both seem to think the TC is no big deal.......? I have a leg & foot

deformity, differing lengths, scolosis, horrible headaches, back pain,

pinched siatica (3 months now), leg pain, and blatter problems.

> I guess my questions are:

>

> 1: Can TC really be no big deal to brush it off?

> 2: I have been on SO many meds and blockers for the different pains, what

> works for you?

> 3: Should I find new Dr's?

[Guest guest]

Get a new doc, it is a big deal 

Subject: Re: TSC questions & concerns

To: tetheredspinalcord

Date: Thursday, May 27, 2010, 7:54 PM

 

Tethered Cord is not no big deal if you have those Symptoms.

I would get a Second Opinion, or even more, if I were you.

Brande

mymocha@...

They both seem to think the TC is no big deal.......? I have a leg & foot

deformity, differing lengths, scolosis, horrible headaches, back pain,

pinched siatica (3 months now), leg pain, and blatter problems.

> I guess my questions are:

>

> 1: Can TC really be no big deal to brush it off?

> 2: I have been on SO many meds and blockers for the different pains, what

> works for you?

> 3: Should I find new Dr's?