just diagnosed with spinal cavernoma

[1214]

Hello,

I have recently been diagnosed with a spinal cavernoma. I live in Upstate Ny and was hoping someone could give me some advice on where to start and what to do from here.

Thank you.

[betty]

Hello 1214,
I'm so sorry for the news of the spinal tumor. Where do you live? I was from Syr but now live in Chicago. How was your tumor found? What kind of Dr gave you the news?
We all have had some form of tumor which you can see at the bottom of our posts.
There is a wealth of information on this board.
It will be very important to have an excellent spinal cord tumor surgeon with a lot of experience.
Perhaps someone else will have info pertinent to your particular tumor.
God give you strength and direct your steps.
Betty

[1214]

Hello Betty
Thank you for responding. I live outside Buffalo Ny a small town called Jamestown. I have suffered with pain in my right shoulder blade area and breast for more than 4 years now. Have been through every test, therapy, and pain management possible. I had an Mri of my spine and the cavernoma was found. I have a neurologist that I see in Buffalo but he blew it off as nothing and I did research and found it is nothing to ignore. Mine is located at t1/t2 level.

i would like to know who I should see about this. If you or anyone had any suggestions I would appreciate it.

How did you do with your surgery?How do you make the decision to have surgery and take the risk of that or the risk of leaving it alone?

Thanks again... Dawn

[juliefromca]

Dawn,

I don't know much about your type of tumor, but I just want to say that I'm glad you're here! I'm sorry that this has happened to you, but I'm so happy to read that you are taking it seriously. I live on the West Coast, but I have heard that there is a fabulous dr. on the East Coast. I'm sure someone will get you his name. I'll be following your progress and praying for the best for you!

Julie

PS My advice is to listen to your body and your intution, which it sounds like you are already doing.

[linda]

Hello Dawn,

It's a real scare to be given this information and important to find a Dr. that will help you. I wonder why your neurologist wasn't concerned. Was it because of it's size? Are you scheduled for another MRI or appointment?

I would definitely follow through and have some questions answered and perhaps find another doctor. There is a lot of information on this site and a spot where you can check out doctors.

Please keep us informed. The neurosurgeon I had was very good as is my neurologist but I don't believe this area is a "specialty"of either. I didn't have the knowledge of this site prior to my surgery so 'I didn't know what I didn't know'. With that said, you'll want to find one that has experience in this field.

linda c.

[1214]

thank you for answering my post. My cavernoma is small but from what I have read it is can be an aggresive little thing. I talked my neuro into giving me another MRI with a better machine to get a good look at it. He said he will talk to neurosurgeon about my case. I am hoping to find someone that has a good background with this sort of tumor.

I am new here so if anyone can point me in the right areas to find a dr. and some info on spinal cavernomas I would appreciate it. Thanks again ..

[Tmasgio]

Dawn,
My suggestion is to ask your doctor how much he knows about Spinal Cavernoma's and if he tells you it is rare and has not seen many please seek out an expert and a Neuro with experience evaluating and treating your condition. You have plenty of time to get all of your answers. I would get as many opinions as necessary to see what your should do for treatment and also a treatment or approach that you are comfortable with doing.


Tony

[1214]

thanks Tony,
My neuro has no knowledge of a spinal cavernoma, I asked he answered, lol...
funny thing is he told me that it wasn't anything to worry about so I researched it and yesterday I filled him in on it. He said he is going to discuss my case with a local surgeon but I am still concerned about it. Today I sent my films to George Jallo. I emailed him and he asked me to send them to him. He said "these are extremly rare, I will need to see your films" then he gave me all the information to mail to him. Does anyone have experiance with him? I have read a few things here and there about him and havenn't heard anything negative so I am going to assume his recommendations would be a good one. I would still like to have someone locally to see in case I have a bleed and need attention right away. I would also love to hear of anyone that has had surgery and what their outcome has been as far as issues they didn't have before surgery and what happened after. I know cutting into the cord is very risky but don't know all the risks involved and would love to hear some personal experiances... Dawn

[juliefromca]

Dawn,

I don't have experience with him, but he's the guy everyone talks about on here! I couldn't remember his name, but it seems as though you're on the right track.

Hang in there and please, please ask us anything you want! I have found so much solace here!!!!!!!!!!!!!!!

Julie

[Tmasgio]

Take a look at the people page and read some of the stories.