Hemangioma or Swannoma CMT related?

[Guest guest]

Hi All,

I'm getting closer to figuring out what has been causing the severe,

dibilitating pain in my back and down my leg which has been getting

progressively worse for the last three years.  MRI results show a benign tumor

growing in my spine, most likely a.Hemangioma, less likely a Swannoma.  I'm

being sent to Cedars-Sinai for treatment.

Has anyone ever had anything like this in your spine?  Is it possible that it's

CMT related? 

Apparently 10% of the population have these and they just don't know it.  Less

than 1% of these tumors are symptomatic, making my situation rare...which then

makes me wonder if it may be CMT related somehow.

[Guest guest]

Hi ,

I have been away for awhile, helping my father recuperate from a recent surgery.

I am back now and saw your post.

I had a benign tumor on my back but it was outside and they called it a lipoma.

I wonder if it is the same thing but called something different when it is in

the interior? Probably not. The doctor told me at the time they were quite

common, especially among athletes, and when I thought about that, I remember I

participated in gymnastics as a kid, and probably fell a lot on my back. Good

luck at Cedars-Sinai and keep us posted. Good news is that its benign and maybe

if they remove it your back pain will be a thing of the past.

Haven't you had MRIs on your back in the past?

Karon

Hemangioma or Swannoma CMT related?

Hi All,

I'm getting closer to figuring out what has been causing the severe,

dibilitating pain in my back and down my leg which has been getting

progressively worse for the last three years. MRI results show a benign tumor

growing in my spine, most likely a.Hemangioma, less likely a Swannoma. I'm

being sent to Cedars-Sinai for treatment.

Has anyone ever had anything like this in your spine? Is it possible that it's

CMT related?

Apparently 10% of the population have these and they just don't know it. Less

than 1% of these tumors are symptomatic, making my situation rare...which then

makes me wonder if it may be CMT related somehow.

[Guest guest]

Hi Karon,

Yes, I had an MRI in Nov 2007, shortly after the back pain became severe and I

started on pain management.  It didn't show anything significant at that

time. 

The tumor was likely much smaller.  Now it's quite large, about the size of a

man's thumb, intertwined with the nerves and seriously compressing the nerve

root.

I saw the neurosurgeon at Cedar-Sinai yesterday.  He said the tumor has likely

been growing anywhere from 2 to 10 years.  He thinks it's a nerve sheath tumor

growing out of the nerve root, 99% chance of being benign and he doesn't think

it's CMT related, although he says he won't really know anything for sure until

he takes it out, which is scheduled for September.  I feel fortunate to be in

their capable hands at Cedar-Sinai.

My advice to others...if you have pain and an MRI is ordered, be sure to do it

with contrast, if possible and the doctors agrees.  It can show things much

earlier than a standard MRI will show.

Karon - hope your back is doing well and the injections have made a big

difference.

 

________________________________

From: " kedleson@... " <kedleson@...>

Sent: Mon, July 19, 2010 9:02:25 PM

Subject: Re: Hemangioma or Swannoma CMT related?

 

Hi ,

I have been away for awhile, helping my father recuperate from a recent surgery.

I am back now and saw your post.

I had a benign tumor on my back but it was outside and they called it a lipoma.

I wonder if it is the same thing but called something different when it is in

the interior? Probably not. The doctor told me at the time they were quite

common, especially among athletes, and when I thought about that, I remember I

participated in gymnastics as a kid, and probably fell a lot on my back. Good

luck at Cedars-Sinai and keep us posted. Good news is that its benign and maybe

if they remove it your back pain will be a thing of the past.

Haven't you had MRIs on your back in the past?

Karon

Hemangioma or Swannoma CMT related?

Hi All,

I'm getting closer to figuring out what has been causing the severe,

dibilitating pain in my back and down my leg which has been getting

progressively worse for the last three years. MRI results show a benign tumor

growing in my spine, most likely a.Hemangioma, less likely a Swannoma. I'm

being sent to Cedars-Sinai for treatment.

Has anyone ever had anything like this in your spine? Is it possible that it's

CMT related?

Apparently 10% of the population have these and they just don't know it. Less

than 1% of these tumors are symptomatic, making my situation rare...which then

makes me wonder if it may be CMT related somehow.

[Guest guest]

Hi all, here is a non-neurologist doctor's explanation of these " soft tissue "

tumors.

Schwannoma is a mass composed of the tissue that surrounds the nerve, which is

exactly what we CMTers have trouble with. Schwan cells are responsible for

making myelin and wrapping the nerves with it to improve conduction, similar to

insulation on a wire. Could it be related to CMT? Well, it is the same tissue,

so there is that possiblility. However, in CMT the problem is with the

composition of the myelin being defective. The Schwan cells are following the

DNA " recipe " to make the myelin and the recipe has gotten messed up by one of a

variety of mutations. I don't think that necessarily translates to a

predisposition toward a Schwannoma. It is more likely that, just like the

general population, we have some risk of developing any additional medical

problem. (It is almost always benign - not cancer.)

Neuroma is a mass of tangled nerve tissue. The actual nerve itself (not the

wrapping) grows into a ball that can be painful because it gets easily bumped.

It is most often caused by repeated injury to a small nerve branch, which may

cause fraying, like a rope does. Nerves have the ability to regenerate, they

just don't have good direction, so if a bundle of nerves gets frayed, the broken

ends will regrow and try to find their missing half. They usually miss each

other and end up in a big tangle. Then, since it is larger than to start with it

is MORE susceptible to repeated injury and the cycle continues until it is quite

large. This is almost always benign, too, and probably not not related to CMT.

Lipoma is a mass of fat. I could say that my entire belly is a lipoma, but it's

a little different. In a lipoma the fat is encapsulated by membraneous tissue

which gives it a distinct soft, round shape that is unattached to the fat around

it. Lipomas that are found on the surface of the body or not far below the skin

(so that you can feel it through the skin) are almost always benign. Lipomas

that are deep in the body core or near bone are more likely to be or to become a

liposarcoma, which is malignant. But these are rare. This is definitely not

related to CMT.

I hope that helps. Holli

>

> Hi ,

>

>

> I have been away for awhile, helping my father recuperate from a recent

surgery. I am back now and saw your post.

> I had a benign tumor on my back but it was outside and they called it a

lipoma. I wonder if it is the same thing but called something different when it

is in the interior? Probably not. The doctor told me at the time they were

quite common, especially among athletes, and when I thought about that, I

remember I participated in gymnastics as a kid, and probably fell a lot on my

back. Good luck at Cedars-Sinai and keep us posted. Good news is that its

benign and maybe if they remove it your back pain will be a thing of the past.

>

>

> Haven't you had MRIs on your back in the past?

>

>

> Karon

>

>

>

>

>

> Hemangioma or Swannoma CMT related?

>

>

>

>

>

> Hi All,

>

> I'm getting closer to figuring out what has been causing the severe,

> dibilitating pain in my back and down my leg which has been getting

> progressively worse for the last three years. MRI results show a benign tumor

> growing in my spine, most likely a.Hemangioma, less likely a Swannoma. I'm

> being sent to Cedars-Sinai for treatment.

>

> Has anyone ever had anything like this in your spine? Is it possible that

it's

> CMT related?

>

> Apparently 10% of the population have these and they just don't know it. Less

> than 1% of these tumors are symptomatic, making my situation rare...which then

> makes me wonder if it may be CMT related somehow.

>

>

>

>

[Guest guest]

I just realized that I left hemangioma off of the soft tissue tumor list of

explanations.

Hemangioma is a convoluted tangle of blood vessels, usually veins. This is

usually a congenital malformation (you are born with it). It can grow over time

and sometimes can press on structures (like a nerve exiting the spinal cord) and

cause pain or numbness. In the brain they can sometimes cause headaches and if

they leak in that location can be life threatening. Most hemangiomas are very

small and cause no symptoms and are never even discovered during the person's

life. They can occur in any location of the body. The biggest problem with

hemangiomas is their tendency to bleed, especially if biopsied to see what it

is. Depending on the location that can be a problem. Near the spine they will

probably use dye to see if the mass is made up of vessels before trying to take

a piece of it. Then they may do something like clip it or cause it to clot off.

These are also benign and not related to CMT.

Holli

>

> Hi ,

>

>

> I have been away for awhile, helping my father recuperate from a recent

surgery. I am back now and saw your post.

> I had a benign tumor on my back but it was outside and they called it a

lipoma. I wonder if it is the same thing but called something different when it

is in the interior? Probably not. The doctor told me at the time they were

quite common, especially among athletes, and when I thought about that, I

remember I participated in gymnastics as a kid, and probably fell a lot on my

back. Good luck at Cedars-Sinai and keep us posted. Good news is that its

benign and maybe if they remove it your back pain will be a thing of the past.

>

>

> Haven't you had MRIs on your back in the past?

>

>

> Karon

>

>

>

>

>

> Hemangioma or Swannoma CMT related?

>

>

>

>

>

> Hi All,

>

> I'm getting closer to figuring out what has been causing the severe,

> dibilitating pain in my back and down my leg which has been getting

> progressively worse for the last three years. MRI results show a benign tumor

> growing in my spine, most likely a.Hemangioma, less likely a Swannoma. I'm

> being sent to Cedars-Sinai for treatment.

>

> Has anyone ever had anything like this in your spine? Is it possible that

it's

> CMT related?

>

> Apparently 10% of the population have these and they just don't know it. Less

> than 1% of these tumors are symptomatic, making my situation rare...which then

> makes me wonder if it may be CMT related somehow.

>

>

>

>