Hemangioma in the spine

[cindyann]

I am wondering if anyone has had this type of tumor and could help me?  I was diagnosed with thoracic lesion at T6 -7 extending to T8-9 level. There is a right-sided EPIDURAL mass that extends into the RT7a-T8 foramen. It measures 4 cm x 6.2mm anterposteriorly, and approximately 14 mm transversly. It mildly displaces the cord anteriorly. DIiagnosed with a benign hemangioma in the epidural space with surgery on hold.  I am around 60 and am frightened of deficits.  Lots of pain and difficulty doing anything without heavy consequences within 3 hours of movement.  No paralysis yet.  But more tingling in left leg and terrible pain in mid back with severe burning and muscle spasms. I have had it a year and a half and they say eventually I will have to have it removed as it will cause paralysis.  However, after reading this form it seems as though most have had continual pain and deficits.  Perhaps even more than before surgery.  Has anyone had experience with a hemangioma in the epidural space at this level that could give me their story?  Very depressed...

[dolphintale]

Sorry that you had to find this website due to a spinal cord tumor; however, I was diagnosed last November and have found this site to be so helpful. I can't help you with the thoracic area but I was diagnosed with a hemangioma in my neck at the C2/C3 area. Mine started with numbing in my right arm proceeded by weird zapping sensations through various parts of my body, tingling in my big right toe and numbness on the inside of my right knee. I went from an initial diagnosis of a schwanomma, to cancerous Chordoma to the final diagnosis after surgery in July of a benign hemangioma. Mine was displacing the carotid artery to my brain. It was 3 cm x 2 cm. The hemangioma was removed along with a peripheral nerve. The removal of the nerve has left me with permanent numbness on the right side of my head to include jaw line and ear. I still have some pain in my right arm but it is not excessive. All in all, I feel surgery was the correct choice for me....it is my understanding that a hemangioma can possibly rupture so I feel the removal of it was one less thing to worry about. After surgery I did find out it had started to grow. I go back in April for a 6 month MRI of my neck and in September for a yearly MRI because they also found two nodules inside my spine in the cauda equine region...not sure if they are also hemangiomas....I did undergo a lumbar puncture which came back negative for a malignancy.

My first suggestion to you is to get your depression under control....I went on antidepressants shortly after my diagnosis and remain on them today. I have found that my "happy" pill has helped me stay balanced as far as mood swings.

Know that we are here to support one another....I try to check the boards at least every other day but don't always have time to respond. Please know that you are in my thoughts as you travel through this medical journey...

[samuridude]

Hi cinyann,



SCT are a bit of a conundrum should you wait for the tumor to grow and cause more damage. On the other hand run the risk of more damage from the surgery.  I'm from the school of get it the hell out of me.

My situation was an emergency and thank my God after 5 months I'm 100% better before surgery.


-Good Health   

[cindyann]

Thank you both for your input. The pain got much better with the warm weather for some reason. I took advantage of that and did some normal activities the last few days, and it is back today. When I was first diagnosed I had fallen and was misdiagnosed. That pain was excruciating for about 3months as it bled. Then I went to just pressure in my rib cage to nothing. I have been going a year and a half with very little pain until last October when it started again. I have only one numb toe. However my rib cage and back go into burning pain. Then it lets up. I hope describing this also helps others to identify with their symptoms. I go to another neuro surgeon next month so I will see what is up. As far as anti depressants I am on something but not anti depressants, they give me strong reactions almost surreal. One of them made me hallucigenic, so for now I just take a tranquilizer. I have other risk factors which are making them say I am a surgical risk. I suppose one has to get their head in a space of realizing that you don't know how bad your going to be after until you do it. What is the trade off? Also support at home is necessary. I live alone now, so would have to hire people until I am really able to see what I can manage after wards. I have no paralysis yet, it has been a year and a half since diagnosis. However of course there is no guarantee of what I will have after surgery. One Doctor told me that I will be in a lot of pain for at least 3 months afterward and it would be at least a year before I know what real deficits I end up with.
I cannot thank you both enough for responding to this post, everyone's opinion helps me in my journey here.  At least I got two answers...thank you again for your support, really!!!

[lindak]

Hi cindyann, I too have a hemangoma on the T10. With it though I have edema with the bone marrow. I too have major pain that goes down the back to my left leg and it is very hard to walk or even move at all. I also have found that my extremities are week. I too deal with severe burning in the back, sometimes it is hard to breath. I also am dealing with problems with my gut (diagnosed with gastroparesis) and intestines. I do a neurologist as my pain doctor and am now waiting to see a nuerosurgeon and oncologist. Do you have any fracture on the bone?

[Deborah]

when you mention a hemangioma, I wonder if you have a portwine stain birthmark as well? I have a large one, and it turns out the hemangioma of the birthmark extends throughout my spinal cord, into the vertebrae, my ribs, etc. I'm sorry for the pain you're experiencing. I know how difficult it can be, especially when trying to decide what method of treatment is available and weighing options.

[dolphintale]

Hi Deborah -- I do not have a portwine stain birthmark; however, during my first pregnancy I did develop a large hematoma at the base of my scalp. It was very swollen and painful. It eventually went away. Now I wonder if it had anything to do with my hemangioma. I do not understand when you say the hemangioma extends throughout your spinal cord, etc. Have you had surgery for this? All of this is so confusing....

[teresa wiliams]

just found out i have a thoracic hemangioma not sure what to do can someone help me

[heartme]

Hello...out there!!
I too have 4 Thoracic Hemangioma tumors! T4, T6, T8, T11~
I would love to know IF they grow...or pretty much stay the same! Does anyone know that?
I have weakness I always feel now across the middle of my back....my back tires very easily now and I sometimes get severe muscle spasms across the middle of my back that stop me dead in my tracks for a few minutes and then they ease up! I finally am getting in to see a Neurosurgeon next month.
I wonder how long some people have lived relatively normal lives with these? Mine showed up on an MRI that was done because of the spasms and burning sensation I was having so I don't know have I always had them.....did they just pop up??? I don't know!
My fear is I will end up bed ridden from this!
Do any of you have any answers or experience with this??
Thank you for any feed back....I am a newbie in this forum!

[cindyann]

I  have so much to say about this, but I cannot write it all at the moment. I was diagnosed in 2013 and was booked for  surgery but had a gut  feeling that it was not the right thing to do.  My thoracic tumor is in the epidural space,  almost leaning on the spinal cord. I was booked for surgery on January of that year,  I did so much research And I ended up with a senior doctor at one of the leading university hospitals here in Los Angeles. I brought him all three MRIs, a Pet Scan and had an extensive history to give him.  After all you have to go further to see if it is malignant.  This  doctor was wonderful to me and I trusted him  implicitly . He was the chief of neurosurgery at this hospital and had been for around 50 years. He told me he would get back to me in a few days  and consulted with his senior colleagues that he had worked with for many years. They identified my tumor without any biopsy and said they had only seen one like it in 50 years at this university.   I am in pain if I do too much, however he said my gut feeling and knowledge that I had gleaned from so  much research was correct and that I took a terrible chance of being paralyzed from the waist down having surgery.   However I have to live with the pain  from some of the nerve roots that caused me to feel  as though I have a tight band around my rib cage when it' is inflamed.   and also the muscle on the right side of the spine goes it a terrible spasms sometimes.   However I have a life, and can live with the limitations I have which are not huge. I use a lot of ice on that area after lifting something heavy or having too much activity, It is something I live with and I'm so grateful I did not have the surgery. Being that this is a slow-growing tumor, it has not moved in the last five years.   I have an MRI every year per the doctor's instructions, and it has not grown one bit. He said that the tumor most likely will outlive me,  and not get larger. I respect this man greatly, as he gave me the best advice which has proven to be correct so far. There is so much more to say, and for anyone that is dealing with this particular type tumor and wants more information I can be emailed to this site and I would be happy to call you on the telephone and speak to you about it. I had a very big chance due to the location of the tumor of ending up paralyzed if I made it through the surgery. The one thing I learned on this site is that no doctor ever gives you the downside of the tumor and the surgery they just tell you the upside, and I'm grateful to have known that innately.   I should have been able to ask those questions. Love to all of you-hang in there and listen to your inner feelings, not fear, but your inner feelings. Educate yourself  as much as possible before you decide to have back surgery. I know many of you, or at least some of you have had somewhat good results. I also know many of you have more pain  terrible paralysis, adhesions, etc. it is not easy to go through this but I'm still walking around and driving and taking care of myself  independently. You can email me through this site if you like ....love to all