another hemangioma question, better on my own thread maybe

[wishforchange]

I have multiple lumbar hemangioma, just about on every vertebrae.  Still waiting to find out if they are further up too.  Initially they were dismissed but more recently my new neurologist has referred me onto a neurosurgeon, as I am deteriorating so badly.  I now walk with a cane.  interestingly like the previous poster I also get severe flank/kidney pain on one side.

My question is regarding the options for removing these hemangioma, should it be necessary.  I have heard that they are extrememly dangerous to operate on, being blood vessel tumours.  In my case there are about 12 of them that I know about, possibly more.  Surely thay cannot all be dealt with surgically?  I remember hearing once that radiotherapy is an option, do you know anything about this?

My walking and balance are so bad I now use a cane.  I am female early forties and previously very fit.  I have degernerative spinal disease but no significant nerve compression reported, although I am awaiting confimation of more recent MRIs.  From the pain being the main issue I am now starting to get more neurological symtpoms, such as tingling in the top of my thighs at the back, plus feeling of insects crawling or water running on legs.  My reflexes particularly on the right are increasingly hard to elicit and barely show.  I suffer urinary retention and self-catheterize.

More recently I have had the development of diploplia and found to have poor motor fusion with the muscles in my eyes.

Other symptoms but that should be enough for now!

Can hemangioma be causing all this?  I am also being referred on to a rheumatologist and awaiting full assessment to rule out (or find) SLE, but it is the prospect of these lesions that concerns me.  Is it the case that if they are the 'culprit' nothing can be done, or can they be safely removed?

Big question I know, and one for my neurosurgeon to answer, but I would like opinions whilst I am waiting for their input.

Thanks

[wishforchange]

Unlikely to let anyone near my back anway, so question is redundant.  Until these physicians learn to communicate with their patients instead of bland reassurances and expecting us all to just trust them without giving us all the information and options, I'll choose my current disabiltiy over their efforts.  Shame my taxes are paying them.  If my back explodes I hope it is near them, don't want to waste the mess.

[wishforchange]

Thank you for your answer.  I had to look at the previous poster to get the full answer, as you referred to it.  It muddies the water somewhat for me.

You are right in some neurologists dismissing these findings.  The first neurologoist did exactly that and I went for a second opinion, not expecting the problem to be considered as a result of the lesions.  I already knew I had arthritis in my back which has a scoliosis.  Incidently I am currently receiving accupuncture, are you suggesting this is harmful?  If so I need to seriously discuss this with my doctor.

The neurosurgeon I am seeing is considered the top, actually the only one in this country who specializes in this area, which is I assume what you mean by kyphoplasty/vertoplasty?  Does that mean surgery then?  Surely it would be an enormous procedure, given the sheer quantity of them.  I always understood they prefer not to operate, but my disability is getting worse and worse.  Are there other options you know of?

In  addition I have a bleeding disorder, making surgery more risky for me.  I would be prepared to risk it if it cured my disabilities, but need to start gathering opinions.  If the surgeon suggests doing nothing I still need to research, as I will eventually be unable to walk if I continue deteriorating at this rate.

Any thoughts on the double vision?

I suppose I am asking for a more individual response, if possible.  I can dig up the lumbar MRI and find which vertebrae exactly are affected, I was given an in inadequate report on the rest of my spine and brain (to my benefit, caused the neurologist to examine the films himself!), if you think you can respond more with this information.

I hope to hear from you

[Paul J Slosar]

As above,  the hemangioma's can cause pain but it can be hard to pinpoint exactly.  See if you can find a local spine surgeon with experience in kyphoplasty or vertebroplasty as they may have seen a case like yours before.