Anyone heard of a spinal paraganglioma?

[pepper1]

My docs are adamant that my original tumor which was partially removed from L4-L5 is a paraganglioma. First from the U of MN then Mayo. Even though one of the top docs on paragangliomas and every specialist I've seen at Mayo have never seen this type of tumor in that area. "Rarest of the rare" they say. I've questioned that the original pathology at U of MN was incorrect and I guess without any way to confirm it now other than looking at the decade old reports there is no way to confirm or deny it.
So "we are going to go with that diagnosis". I'm the first patient they've ever had with this tumor in this location.
Just wondering if anyone has ever heard of this.

[peaceandlove]

Hi there.
I have ganglioglioma and Astrosytoma same time.I have symptomes from last 3 years.Pain, tingling, numbness...I hear about doctor George Jallo at John Hopkins Baltimore.Try to email him.He is expert as i hear.From my own correspondance with him, he show direct answer.
Thanks

[Asia Fairbanks]

Hello there.

My name is Asia, I am 21 years old and have just been diagnosed with my 3rd paraganglioma. The first two were in my Carotid bodies, and I had both removed with a sapheounous vein graft into my right carotid. At the time of removal in 2009 and 2010 the tumors were LEFT: 6cm and RIGHT: 2.5 cm

For the past two years I have been telling doctors I am very sick, with symptoms pointing to a pheochromocytoma. My blood pressures spike regularly to the 200s and I have been unable to live a normal life. Doctors misdiagnosed me with "anxiety" and shrugged off my neuropathy as not a major concern. Shoulder / neck pain was blamed on a previous injury from a car accident and overall weakness I was from deconditioning. All conventional imaging did not show the tumor and most attention was directed at the possibility of a reccurrence in the carotid body. Only after a F-DOPA PET Scan were we able to see the "severe" tumor at C4 level in the spine. I just found out a few days ago.

I don't know much else about what is going on. Meeting with Dr M. Boyd, a spine surgeon in Vancouver, BC on Tuesday with surgery in the next few weeks. MERRY CHRISTMAS. They were going to rush the surgery and do it on Tuesday after we got the results showing the tumor, however we have decided to wait until after the holidays.

How is your treatment going? I'm pretty nervous about spine surgery! I thought getting my carotid arteries replaced was bad enough

Hope all is well with your diagnosis and treatment

-Asia

[pepper1]

Thank you for your post Asia. My treatment options are on hold until after the holidays. Then it will be back to Mayo for more
scans & doctors. Hopefully they will come up with a safe & effective plan. I also have a tumor C4-C6. My neck hurts all the
time but I also have very bad herniated disc there.
You may want to look at some post in the General Forum for people who have gone through treatment for cervical tumors.
More people check there and can give you advice or share their story. I know how frustrating it is to deal with doctors who don't take your symptoms serious. Be a strong advocate for yourself and don't give up. I know it's scary but be strong and keep your spirits up. When I'm feeling down I read the Tumor Humor post and end up laughing. It feels good to know that you are not alone in your journey. We are here for you. I wish you the best!
Happy Holidays

[alison8]

Hey Guys paraganglioma is a rare neuroendocrine neoplasm that may develop at various body sites.Paraganglioma is now the most-widely accepted term for these lesions, that have been also described as: glomus tumor, chemodectoma, perithelioma, fibroangioma.Thanks a lot!!

[bagelcat]

Hi - don't know if you are still interested, but I had a gangliocytic paraganglioma removed in May of 2008. It was non-cancerous. The tumor extended from L-1 to L-3 and pushed posteriorly on the nerve roots there. Post resection, I retained all my motor function and sensory abilities, although my surgeron did have to remove T-12 to L-3 to get to the tumor. Still, I was able to go back to work 5 weeks after surgery. Almost 5 years later I have no residual side affects.
Hope this helps!

[Neverstopliving]

Today I am celebrating eleven years since I had a paraganglioma removed via laminectomy at the L4, l5 level. The tumor was termed aggressive since it had its own blood supply, yet benign. At the time i was told that this was extremely rare. I work in the healthcare field and I KNOW how lucky I am, but I am still curious to to find out if this is still considered as rare?

[Helen]

I had a paraganglioma removed (partially) from my spine nearly two years ago. It was too entwined with spinal cord to remove all of it. I am back at work. I have to have mri every year to check on whats left of tumour. Hoping it will be VERY slow growing. It is extremely rare according to my doc.

[Helen]

If you have facebook there is a support group called pheochromocytoma and paraganglioma which is a closed group. It puts you in touch with lots of people from around the world who are well clued up on these tumours.

[Cristiane]

I was diagnosed with a paraganglioma in my mediastinal in 2004. It was successfully removed. 10 years later (a month ago) I found out I have another one. This one is compressing my spinal cord (T8). The doctors still havent decided if I will have surgery at this time. They talked about radiation in order to shrink the tumor and also they will do a gene search because they believe I have a gene abnormality and it may be the cause of the tumor came back.



They said to me this is extremely rare.



I am in lots of pain.



If anyone has a similar experience to share it will be greatly appreciated.