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Spinal Hemangioma Tumor of the L5
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hdpittman posted:
I have been diagnosed with a spinal hemangioma tumor. I am a 29 yr old female. First off I went to see a Neurosurgeon about my lower back pain, and he called it a hemangioma. He seemed not to have any concern at all about my pain level. Then he ordered me to have an epidural steroid injection which did not help at all. Then I went back, and they ordered me to have the vertebroplasty. Had that done only to get alot worse. Now they say they can do nothing else for me but send me to pain management. What exactly can pain management do besides prescribe pain pills. I cant take pain pills for the rest of my life.. I have two young children who need me.

I am unclear as to what the hemangioma is and why am I in so much pain. They say it is a bony tumor, and cant be operated on. Well my question is why not. Are there not any other options for me? Will I hurt forever, continuing to worsen as there is nobody there who is willing to help. Seems that way anyways. I have gone from an active 29 year old mother a year ago, to a couch potato. I can't do anything. I am in so much pain. Can the tumor grow? Will it eventually cause major damage to my spine?? How do I know it is not malignant, if they did not biopsy.? I don't know what to do to help myself. Or is it useless. Am I damaged forever????
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davedsel57 responded:
Hello.

I'm sorry to read of your problems. We are mostly lay people here who just share from our own personal experiences. There is a WebMD Health Expert assigned to this board but he has not posted in a long time.

I found this article on spinal tumors that may offer some explanation: http://www.spineuniverse.com/conditions/spinal-tumors/spinal-tumors-descriptive-overview

You can continue your research on the internet. Here is a link to a resource I created on this Back Pain community that gives a list of links to spine sites: http://forums.webmd.com/3/back-pain-exchange/resource/10?@guest@

It may be time for another opinion. Seek another neurologist, neurosurgeon or other spine specialist and get their take on the situation. I am presuming this was diagnosed after you have had a spinal MRI or CT scan. If the testing was done over a year ago you may need new diagnostic testing from the new specialist you see.

Praying you can get the treatment and relief you need soon.
Blessings, -Dave
 
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bj1208 responded:
hi hdpittman - welcome to the support group -

Dave has given you real good advise and some links to help you understand further -

he is right - it is time for a 2nd opinion - if you have problems with deciding this - you can always ask your primary care physician - he/she can let u know who to go to - and some insurance will require a referral - so do check into this -

also, regarding pain management clinics - I can understand your concerns regarding being on pain meds - possibly the rest of your life - I am in that same boat - I have Failed Back Surgery Syndrome - and now have 3 more bulging discs which the surgeon says surgery is out of question as it would only make my pains worse - and my pain doc told me that i would be a patient of pain management the rest of my life - so I can understand your concerns -

I have the option of either oral pain meds or the pain pump - so there are options available and they work with you on the level of pain meds to take - and your concern with young children is a big concern -

you have a lot of questions that do need answers - so I really think you should start with your primary care doc - he/she can guide you on who to see - just make sure you get your records from the neurosurgeon you originally saw - and all treatments and tests you have had -

please let us know what happens and what they find - I hope and pray that you get good news on this - take care - Joy~~
 
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hdpittman replied to bj1208's response:
I have been referred to a pain management clinic that has a variet of different docters with different specialties. There are phsycologists, physical therapists, and a few different kind of surgeons, who specialize in the spine. I plan on going to the appointment to see what my options are. If this is a dissapointment, I do plan on starting all over with my primary doc getting another referral to another neurologist. Something has to be possible to relieve my pain, and I'm not giving up.
 
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davedsel57 replied to hdpittman's response:
Hello again.

Good for you for not giving up. I agree, there must be some type of treatment that could give you relief.

I'll be praying you find that treatment and relief soon.

Please keep us updated.
Blessings, -Dave
 
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RosarioSalinas responded:
Hello. I am 40 - 2 kids (9 and 2 y/o) and I am sharing in full your feelings because I have been diagnosed with a hemangioma on the sacral area. But what is really bad on my case and it can be good for you is the fact that I was born with previous hemangioma (L-5 area). Didn't know i could develop another one. Since I have a previous injury and I was already using a wheelchair to do my duties ( working cleaning, care of my kids, husband, etc, etc, etc.) maybe there is not too much of difference in my life style. It is extra hard... but so it is for you, right? Now, I have been reading a lot, and it seems that these hemangiomas can be operated and removed to decompressed the area. The surgery works really good specially in patients wthout previous injuries, deformations or extra medical issues. (like you) You have to look for the right neurosurgeon. I used to live in the Fort Lauderdale area (FL) moving to Miami to access and be part of the Miami Project as a patient of the Jackson Memorial Hospital. If they don;t give me any hopes, I will look forward to go to the Mayo Clinic or Massachusets. But you have to move now, the symptoms that I have now are even more painful. 2 of my vertebrae colapsed due to the tumor pressure and I am loosing feeling and fuctionality on my legs. My bladder and bowel are not ok either. But I feel that in your case a surgery could work things out. Good luck,
 
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lilhippie7 responded:
just got back from this pain management and i must tell you it did no good at all, i have been told i have the same tumors the hemangioma on my spine or vertabraes i been in chronic back pain for 13 long years on pain meds for 13 years and these people at pain management treated me like its nuttin to worry about suggest i could go to oncoligy or hemotoligy which i am like you i been in pain for a long long time i am now on disability and still havent got any help for this. i looked these up and it clearly shows they can be very painful so i think i will now get a 2nd opinion on what to do for this. i am like you i am not gonna just take this blown me off over this another day. so dont give up fight like i am going to cuz the pain i live in every hour on the hour is unreal seems there is no hope that i will never be pain free. your not alone i wont give up so dont you either lol
 
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bj1208 replied to lilhippie7's response:
hi -welcome to the support group -

there are different types of pain management clinics - one I go to is a PHYSIATRIST Pain Management

http://www.spineuniverse.com/treatments/what-physiatrist

they go deeper into pain management control by using different treatments based on the clients needs. they also deal with really good spine specialist - both Orthopedic Spine Specialist and Neurosurgeon Spine Specialist. Since the tumor is one or near disc/spinal cord it would be best to get your opinions from one or both spine specialist.

please keep us posted what you find out - take care - Joy
 
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bj1208 replied to Debvs's response:
Hi Debvs -

under the guidelines of WEBMD when you created your account listing personal information of physicians, hospitals or even your own self is against these guidelines.

This will have to be marked for removal. please remember for future reference that this is not allowed.
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~


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