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Old 10-04-2006, 11:43 AM   #1
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nebner44001 HB User
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.

 
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Old 10-04-2006, 01:37 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

 
Old 10-04-2006, 06:28 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, 07:17 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, 10:12 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.

 
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