Re: Need info

[Guest guest]

Hi everyone,

 

Can anyone gime me some good rescources to look up TSC I need to do a

presentation for my Health class in college.

 

Thanks,

 

Keiffer

Subject: Re: Update, Verticle MRI

To: tetheredspinalcord@ yahoogroups. com

Date: Friday, November 28, 2008, 4:17 AM

I appreciate the comments. I have had a hard time describing them to others as

well. It was my gp that first said it sounded like spinal tap headaches.. Of

course I was 55 years old when he said. I think I figured out that I get about

four different kinds of headaches. What I would describe as my SB headaches are

located on the top rear of my head. I picture the cap the Jewish people ware and

that's pretty much the location. My apology to our Jewish friends for not know

what the caps called.

I had heard about the vertical MRI a couple of years ago. Sometimes a horizontal

wont show a problem with back, particularly if the person back problems occur

when they are standing up. In there brochure that's the application they showed.

I wouldn't say it's easy by any standard. Sitting still for 20 min at a time

with short break, for someone who hardly ever sits still was difficult. My back

did start hurting and I wish I had taken a little more pain medicine before I

started. I did take it at the half way point. The machine is open and I was able

to watch TV on a big screen the whole time. They say it's not as noisy, but that

might be from the fact is more open. My opinion is, it's still noisy. I put the

headphones on for the second go round.

I sat down, with my back toward the MRI. The tech fasten a set belt, just to

make sure you don't fall asleep and fall out. The chair moves back and up into

the MRI. It's like being in very narrow hallway. The tech placed a bar across

the front for my arms to rest on. The second go round I had a padded bar for my

forehead. I wish I had used one on the first go round. It allowed me relax a

little more. They did both a lower and upper spine. This is the fist time my

upper spine had been MRIed. By the way that part was okay.. I was glad to find

this out.

I think it took 20 to 30 minutes for each session. As I said, I would not say it

was " easier " , but is sure can be an option if a person as problems with the

horizontal. My problem is laying on my back. As I stated I get headaches and

other problems. It took almost 3 hr's before I could sit up without extreme pain

and the feeling I was going out, with my last MRI, which I would have if I

didn't lay right back down. I did not want to go through that again.

I don't think there are lot these machines around yet. But I would guess major

cities have them available.

Woody

[Guest guest]

I have some medical/neuro journals on my blog you can link to.

amylynnjenkins.blogspot.com

Amy L.

" You must be the change you wish to see in the world "   ~Gandhi

[Guest guest]

I've had TSC since birth and I guess in some ways I lucked out as my

pediatrician immediately reffered me to the ped nsg I saw from age 3-

18 (15 years.) I also grew up in a small town with an MD who

practiced Family Medicine -- and was patient, kind and ever so

willing to do the research on TSC in order to better help me. I have

run into the " brick wall " several times yet this occured in college

and in adulthood.

I'm not sure who said it best, perhaps it was -- but you

really do have to take your medical care " by the reins " and advocate

for yourself. This is not a condition that is well known or

researched and thus being said -- you CANNOT count on the medical

community at large to be familiar with it. Yes, there are doctors,

PT's and other practionners out there who are " well educated and

versed in TSC " but they are unfortunately far and few between.

After reading your latest message , I felt the anger build -- at

how you were treated -- and by your own doctor no less. SHAME ON HER!

She had no right to counsel you like that. None at all -- except to

say it stemmed from ignorance. I say " fire her " and search for

someone who while " novice to TC " is willing to go the extra mile &

help you -- treat you to the 'best' of their ability and defer to

others when needed.

Sorry, I have to stop now as your e-mail " pushed a button " " trigger "

and I'd best leave it at that for now. I hope your Nsg appointment on

the 16th goes much better than your initial experience with your own

MD. Don't be afraid to ask questions. Bring someone with you who can

take notes -- leaving you free to listen, ask questions and find out

more. It's okay to let your Nsg know you've had difficulty finding a

GP who is knowledgable with TC - could you refer me to someone else?

Good luck. Keep your chin up .. and come back as often as you need

to. We're here to listen.

>

> From: Amy <amyindemand@ yahoo.com>

> Subject: Re: Need info

> To: tetheredspinalcord@ yahoogroups. com

> Date: Monday, December 1, 2008, 9:39 AM

>

> I have some medical/neuro journals on my blog you can link to.

> amylynnjenkins. blogspot. com

>

> Amy L.

> " You must be the change you wish to see in the world "   ~Gandhi

>

>

[Guest guest]

I wonder about your statement that the MRI did not show nerve damage. Your

symptoms are the same that many of us have, and many of us have nerve damage as

well. If you have the surgery soon enough there is a chance the nerves won't be

damaged. Once the nerves are damaged there is not much that can be done, other

than treat the symptoms. My surgery did not help the pain that I was in before

the operation. Many NS won't even operate if the only issue is pain, because

they cannot tell before hand if it will help, and the surgery could possibly

make it worse. When you have TC symptoms like you are having, it is certainly an

indication that the nerves are stressed. At what point this stress turns into

permanent damage, I don't think anyone, or an MRI, can tell.

Woody

[Guest guest]

Hi ,

Good luck with your appointment with Dr. Rajuub. It is tough to find

doctors who are knowledgeable about tethered cord. Most of us have

wound up with pediatric neurosurgeons...even me at the age of 51. But

don't give up, and don't pay any attention to your primary care

physician. Pain from TCS is real.

I didn't notice that you mentioned your type of tether. The surgery

and recover time depend on the type. Lipomyelomeningoceles are the

most complicated - larger incision to get to the spinal cord,

laminectomy, removing as much of the lipoma as possible, recreating

the back of the dura, and closing. Fatty filum, on the other hand,

can be cut with a much simpler procedure (the dura is already intact

in that case). I'm sure a web search or wandering thru the archives of

this group at health.groups.yahoo.com/group/tetheredspinalcord will

give you enough facts to make your head spin.

In either case, don't plan on going back to work in a few weeks. The

longer you give yourself to heal, the better and the less likely to

have more problems in the future. Plus, since the spinal cord itself

is involved, it takes a while for nerve tissue to recover from the

" insult " of surgery. Some of us have what we call " spinal shock " and

symptoms can get worse immediately post op.

Hope this helps a little.

V

>

> ,  thank you for your words of encouragement.  It is so

frustrating to be in this much pain and be treated like a crazy

person.  I am from port, PA a small town in central PA.  My

appointment is with Dr. Rajuub on December 16.  I was told he is a

very good neurosurgeon, just lacks in the bedside manner.  I work as a

registered nurse at the same hospital so hopefully he will have more

understanding and compassion than my general practioner did.  Thank

you to everyone who is part of this group, its just nice to have

people to communicate with who will listen and understand.  If I do

need to have surgery, what should I expect and how long is the

recovery time?  If it is a laminectomy will I be able to go back to

work within a few weeks.  I work as an OB nurse so I am basically

clueless to the neuro stuff.  Thank you for listening.

>  

>

>