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Old 10-04-2006, 10:43 AM   #1
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Unhappy spinal hemangioma: pain

I was just DX with spinal hemangioma (I think I spelled it right.) and I can't seem to get any help with the pain.

I've seen three doctors and all three have told me that I need to see someone else in a different specialty.

Can anyone help me with suggestions on how to help the pain and who I really need to see? I've seen a spinal surgeon, pain specialist, and orthopedic surgeon.

 
Old 10-04-2006, 12:37 PM   #2
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Re: spinal hemangioma: pain

Hi J44, Sorry to hear about your DX, If it wasn't a surgeon that found it, I would think the first place to go is to discuss a surgical solution, If there isn't one or the riskis too great, the next step is pain management. Please don't take anyone other than a surgeons opinion or even several surgeons, Too often PM doc and GP are making recomendatuions and not refering a patient to a surgeon when they may very well be able to help. Because every doc has their opinion about back surgery or spine or head surgery, it wopuldn't be uncommon for a GP or PM doc to tell you there is no surgical solution and never make a referral to a doc. I've met too many people n PM for their back that have never even spoken to a surgeon to se if there is an alternative to opiates.

If the genneral concensus among the surgeons you consult believe there isn't a surguical solution, and aren't willing to take on chronic pain patients they can't fix and your present PM doc isn't managing your pain,, then you need to consult other PM docs to see what your options are.

Not all PM docs are created equal, or have the same background. Some PM docs are anesthesiologists', some are physiatrists "physical medecine and rehabilitation" Some are neurologist, internal medicine,psychiatry, DO's etc. Depending on what may or may not help, kinda determines what type of doc you need. If there are interventional procedures, like spinal injections, nerve blcoks, etc, I feel better with an anesthesiologist when it comes to needles and my spine. Some surgeons, both ortho and Neuro practice PM, but not all surgeons will prescribe meds if there isn't a way to fix it.

Neurologist do tend to specialize in headaches, if you break PM down into sub specialties. But any doc that can write a script can call himself a pain management doc. It's up to the patient if they want their pain management doc Board certified in the 3 specialties that have a certification process for PM. Those are Neurology, anesthesiology and physcial medicine.

Every doc has a different opinion when it comes to what works or what meds or procedures they believe are most effective, so it's not uncommon to spend a few months letting one doc try their methods and then moving on to another doc that uses methods the other doc doesn't. Not every PM doc can or will do everything that's available. Any doc can prescribe pain medication, not every doc will do nerve blocks , uses botox, specific drug infusion, TINS, TENS, acupuncture, Trigger point injections, myofacial release, physcial manipulation like chiropractic etc etc etc. There are dozens of meds and modalities modalities to manage pain including self hypnosis, Bio feedback, guided imagry, counseling, etc.

The more tools you have that work, and the more docs available at a PM clinic that have docs from several specialties, the more likely you will find a combination of things that help rather relying soley on a doc willing to prescribe as much opiate pain meds that it requires to manage your pain.The key word is manage, not eliminate. Any legit doc is going to shoot for the most relief they can give without impairing you more than your original problem. 50% seems to be a the number I here the most and what the makers of the implantable morphine pumps recomend and call a succesful pump.

Not every doc is able to manage an implanated pump, if he isn't he will likely want you to try everything he can offer before admitting his methods don't work. Going from nothing to a pump is a huge leap when something less invasive may work. The problem is, people know opiates work and tend to be less then satified when their PM doc isn't managing their pain or prescribing pain meds. Some believe in their benefit, some believe their other combos are more effective and don't create the dependnece that opiates do. Only you can decide if the methods work and if the benfit outweighs the negative aspects of using opiates..

A PM clinic that has multiple docs from different specialties will certainly be able to offer more modalities and methods to help you manage the pain and learn to live with the pain that even opiates can't relieve.

Good luck, Dave

 
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Old 10-04-2006, 05:28 PM   #3
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Unhappy Re: spinal hemangioma: pain

Thank you for your input.

I'm so frustrated right now.

The pain is so aweful. After seeing 3 docs and being told to see yet another doc I'm almost ready to quit. The last one I saw said I had fibromyalgia. Which I don't have since the pain I have is only in my spine and no place else.

I just don't know where else to go from here.

 
Old 10-05-2006, 06:17 AM   #4
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Re: spinal hemangioma: pain

just exactly where is your cavernoma located,inside your spinal cord?thats where mine was/is(still have ten percent they had to leave behind).the first thing you need to do is to actually find a good neurosurgeon who actually knows just what the heck a cav actually is and all about them.i saw three different NSs before i finally found the only one who really seemed to actually know what the heck was up with these things.some NSs still actually believe that these cause no pain.as the majority of us who have them can tell you,that is one huge load of BS.honestly,in this day and age,i was really really shocked at these different actual NSs who were giving me,in two cases,totally differing opinions and treatment options and whether or not these could even be causing the more ***arre types of pain i was having underneath my R shoulder blade.this was a really hidious gnawing pressure/prying type of pain that honestly felt as tho someone was trying to pry off my shoulder blade with a flippin crow bar.the only real relief i got was when i could grind that shoulder blade hard,into the nearest solid wall.this actually seemed to "equalize' that pressure that just felt like it was kind of "pushing out'?

what have you been told as far as it being in a good spot or bad spot for possible surgical ressection?has it bled yet?it wouldn't actually say anything on the MRI report about a 'bleed' but it would state something like 'hemosiderin ring,or staining"or the 'halo effect"surrounding the cav itself.

i guess knowing more about the actual location of yours would really help me much more as far as giving you much better advice,if you could enlighten me on that it would help alot.anymore info you have on this the better.thanks,Marcia


just an FYI,incase you have not been told this yet,stay away from things like aspirin and any NSAIDs,they can increase your risk for a bleed.
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 10-05-2006, 09:12 AM   #5
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Unhappy Re: spinal hemangioma: pain

I have one located at T10 and one at T12.

The one NS I saw said I wasn't a surgery candidate because hemangiomas bleed so bad.
I actually have the report: "There are geographic lesions involving the vertebral bodies at the T10 and T12 levels. Their signal characteristics suggest atypical hemangiomata. Some low signal is noted within this lesions on the T1 signal and some enhancement is noted after contrast. They are hyperintese on the T2 weighted images, are geographic and not associated with marrow edema or space occupying characteristics."

Whatever all that means

There's also some degenerative changes which this same doc said I had fibromyalgia which I don't have cause the only SX I have is spinal pain.

I'm so frustrated I could cry; but I'm staying strong cause I know someone can help.

My only fear is if I go to too many docs they might think I'm a hypocondriac which I'm not; I just want some pain relief.

You've been great.

 
Old 10-05-2006, 04:40 PM   #6
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Re: spinal hemangioma: pain

Hemangiomas are very commonly occuring findings on MRI and are not painful in the vast majority of cases. It would be prudent to seek another diagnosis or to have a surgeon biopsy the hemangioma since these were "atypical"

 
Old 10-05-2006, 05:38 PM   #7
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Post Re: spinal hemangioma: pain

I would recommend you contacting the neurosurgery dept. of a medical university. I don't know what state you live in, but I am talking about a medical school such as UC Davis, UCSF etc. but of course one in your state.

 
Old 11-10-2006, 09:20 AM   #8
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Re: spinal hemangioma: pain

I have a hemangioma inside my T10 thats pressing on the spinal cord. I've been seeing my doc now for a year now. After about 10 drifferent meds and 20 xrays, mri, bone scan they did a Facet Joint Block Injection to the area. I must say the pain went away in about 2/3 days and lasted for about 4 months. I had just gone back about 3 weeks ago for another set of shots. They don't seem to be working as well as the first time. The last thing they would like to do is to replace the vertebrae I work, I have kids, I don't need that right now. I'll have that done when I can't take it anymore. I feel your pain, it was painful to drive, sit, stand, etc. I do take Zoloft, trying to make me happy and not think about my back. It works sometimes, but I still need meds for pain time to time. Good luck.

 
Old 11-10-2006, 11:41 PM   #9
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Re: spinal hemangioma: pain

I am not sure about the hemangioma in the vertebrae, but I have a large hemangioma on my right leg, with internal involvment on my bladder, kidneys and Brain (found by MRI), the only ones that really cause me trouble is the one on my leg and the bladder one. I am sure that yours is a lot different from what I have, they finally gave me a dx of Klipple Treunanay (sp) syndrome. When I have something odd happen to me I always tell them about the KT and that it could be the root cause of the problem. When I was born my peds told my mom to always tells other docs this if I have any weird problems. and so far that has been the cause with the exception of my blood clots and really it does play some role in that as well. But anyway back to you? Don't ever let a doctor tell you that you are not hurting. You know your body better than anyone and you have to trust your body. Pain is out bodies way of telling us that something is wrong. So keep fighting for answers. If the NS's are having concerns about it bleeding during surgery consult a good vascular surgeon. Anytime I have something done or going to do something he is the first one I call.

Have they found it anywhere else in your body? Don't just settle. This is your health and you have to fight for what is right because no one else will. I know that its annoying going to doctor after doctor after doctor, but eventually you will get to that one doctor that knows exactily what the heck is going on and exactly how to fix it.

Also like the other post said, don't take any thing with ibuprofen, NSAIDs, aspirin and there are a few others that contain aspirin like products but are not really listed that way. Like Valerian Root has blood thinning properties. SO just becareful. And keep smiling. You will get through this and you will find a great doctor that will help you mind body and spirit.....Good Luck

I hope this helps....I know its not exactly what you have but I do know that they hurt. So keep on keeping on.

j

 
Old 11-11-2006, 01:10 PM   #10
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Re: spinal hemangioma: pain

I had a bone scan back in Feb of this year and came up neg. of any others. As far as my doctors, I have two of them that work together on trying to help for my pain. They understand my reasons for not wanting to be "cut" back there, cause of my job and kids. I'm the sole income of the house and I can't take the time off to have the replacement. If I can stand the shots and meds for a few more years, I'll be ok. I'll only have the operation if I can't stand or walk. I hope people understand my point. I'm just not sure how long I should stay on pain-meds and shots?

 
Old 11-14-2006, 07:54 AM   #11
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Re: spinal hemangioma: pain

while i can totally understand why you want to hold off on surgery,there could be some bigger problems if you wait til you cannot walk anymore.once the bleeds cause the damage,it cannot be undone with any sort of surgery.it becomes a permanent injury to your spinal cord.while yours is luckily within the actual vertebrae and not inside your cord,the fact that it is compressing the cord even slightly will put you in a much higher risk catagory for spinal cord damage even if you are involved in a slight fender bender type accident.you REALLy need to think everything thru here kevin and discuss this all with a neurosurgeon who is very highly knowledgeable about hemangiomas and your particular risks being where it is.amazingly,alot of NSs are totally flippin clueless when it comes to really knowing the ins and outs of dealing with these.honestly the first two NSs i consulted with were just clueless and offered me no real answers to my many questions.

it wasn't til i went to our local university teaching hosp that i found a wonderful NS who happened to be the head of the neurosurgery dept there and he had ALOT of knowledge and alot of experience with treating hemangiomas inthe brain and the cord.i really DO think that if you live anywhere even within a couple of hours to a university hosp,this would really be your best bet since most people end up going to these types of hospitals when they cannot get the proper attention from other docs.these hospitals just see a much higher volume of the more obscure types of cases.this would really be the best place to go for a good knowledgable consult about your particular risks.you just need to really know what you are dealing with and YOUR risks.these are just not something every NS knows about despite the fact that they THINK they do,trust me on that one.good luck with this kevin and please keep us posted,K?Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 11-15-2006, 02:48 PM   #12
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Re: spinal hemangioma: pain

Marcia, Thanks for the reply. I meet with my NS this week and advised that the 2nd set of shots didn't do as well as the 1st set. I know that I can't keep putting it off and should just go ahead and get it over, but i worry to much about what could go wrong. This is what the NS wants to do; vertebroplasty, a needle about the width of a cocktail straw is inserted through the skin into the fractured bone. A bone cement is injected. The cement hardens, stabilizes the bone and prevents further collapse. This stops the pain caused by bone rubbing against bone. But this will be done to the hemangioma and not the bone. Sorry I've taken so long to reply, its just that I'm depressed over the whole thing along with other life problems, holidays, work, and on and on. I'm taken zoloft 50mg, I'm thinking about asking the doc if I can up the dose to 75mg or 100mg. I'll ask about that on the depression thread. As for the pain still taken vicoprofen 200mg 2x a day, gets me by for now. Ok take care and I'll keep you posted some how. Kevin

 
Old 01-26-2010, 01:37 PM   #13
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Re: spinal hemangioma: pain

Quote:
Originally Posted by feelbad View Post
just exactly where is your cavernoma located,inside your spinal cord?thats where mine was/is(still have ten percent they had to leave behind).the first thing you need to do is to actually find a good neurosurgeon who actually knows just what the heck a cav actually is and all about them.i saw three different NSs before i finally found the only one who really seemed to actually know what the heck was up with these things.some NSs still actually believe that these cause no pain.as the majority of us who have them can tell you,that is one huge load of BS.honestly,in this day and age,i was really really shocked at these different actual NSs who were giving me,in two cases,totally differing opinions and treatment options and whether or not these could even be causing the more ***arre types of pain i was having underneath my R shoulder blade.this was a really hidious gnawing pressure/prying type of pain that honestly felt as tho someone was trying to pry off my shoulder blade with a flippin crow bar.the only real relief i got was when i could grind that shoulder blade hard,into the nearest solid wall.this actually seemed to "equalize' that pressure that just felt like it was kind of "pushing out'?

what have you been told as far as it being in a good spot or bad spot for possible surgical ressection?has it bled yet?it wouldn't actually say anything on the MRI report about a 'bleed' but it would state something like 'hemosiderin ring,or staining"or the 'halo effect"surrounding the cav itself.

i guess knowing more about the actual location of yours would really help me much more as far as giving you much better advice,if you could enlighten me on that it would help alot.anymore info you have on this the better.thanks,Marcia


just an FYI,incase you have not been told this yet,stay away from things like aspirin and any NSAIDs,they can increase your risk for a bleed.
I have hemangioma at t5 t6 and the pain you have described

"types of pain i was having underneath my R shoulder blade.this was a really hidious gnawing pressure/prying type of pain that honestly felt as tho someone was trying to pry off my shoulder blade with a flippin crow bar.the only real relief i got was when i could grind that shoulder blade hard,into the nearest solid wall.this actually seemed to "equalize' that pressure that just felt like it was kind of "pushing out'?"

is exactly the pain that i have had for last 4 years.Pushing back on my fist in doorways till laudible clicks are heard like knuckles cracking helps but sometimes its so bad i lay on piece of wood similar to a rolling pin ,wrap in a towel, place in line on spine then wrap bandage around body to keep it in place Put tens machine on and take as many painkillers as i can to deaden back usually im pretty doped at this stage and fall asleep with wood bar in position to click back into place.Used to be able to do this in one nights sleep but now taking up to 3 days to so this and pain afterwards similar to being beaten with the wood stick ha ha But this pain much less than pain i have before putting myself through this I quote a physio "barbaric" treatment.Probably not much help to others but i feel better in a way knowing the pains ive had, someone else with a hemangioma has suffered also.Sometimes medical experts try to make you believe the pain is all in your head.
I dont think 2 people who do not know each other with same symptoms is all in the head Do you ?

 
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