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Spinal Cord Disorders Message Board

Spinal Cord Disorders Board Index

sorry it has taken me awhile to get back here joanne. things have not been the greatest.

the ONE huge thing that the MVA did for you, tho it does suck to have to deal with, is make that hemangioma simply 'known' at all, ya know? my c spine had "something" just not right that was very similar to what my hubby had gone thru like five years before with a herniated disc at c 5-6, so i knew that i probably had done the same thing, just based on the radiculopathic symptoms i was then having too. so i got sent for that very needed MRI too which revealed MY lil glob inside my cord ONLY then. it did explain alot. but because it had already bled at least once and was considered "an active bleeder' timing WAS critical for me and what i needed done. so not every 'seemingly bad thing' is ALWAYS totally 'bad. if mine had not gotten found when it did and certain other things also occuring that involved clueless on hemangioma NSs too, i never would have found my biggest and best "expert' at the U of MN before he would have retired in 06. i AM thankful, believe me. and before he retired, he DID also, based on only a 'hunch' send me for the MRA and 3T scan that found my anuerysm too. but trying to even begin to replace that man has been a nightmare. that part sucks, but he was there when things were hitting the fan for me and thats what mattered ALOT then or i could be paralyzed right now if i had NOT sought out just one more opinion and at a facility that i already had trust in too.

honestly, i so do believe that for whatever reasons, things DO just 'go' for us in our lives the way they are supposed to, even the really sucky parts. it all has its reasons that DO impact our lives and changes us in ways as well. sometimes like "finding" certain things, it is usually a 'good thing". esp things that can cause MORE harm if they are not known about til 'they have some type of 'presenting event' attatched to them like mine did and also would have again as well.

i am glad to hear that despite your NSs feelings he STILL is referring you to at least someone who has a much better and clearer understanding of pretty much anything vascular. many docs/specialists who feel that way do not bother to even do what yours is doing in many cases, so that IS a huge plus for you hon, seriously. many NSs will "only' go with their own opinion and at times VERY limited experience with stuff like this when the patient DOES resuire at least "some' type of help or intervention with certain anomolies.getting THAT opinion will help. he or she may want to do nothing or something, it really depends upon what "they see' and feel about your angioma. sometimes, when these are simply located in the boney areas within the spine, it is best to leave things alone and do pain management. but depending upon just how much pain and potential they have in some rarer cases when in bone to bleed(most "in bone' do not), that really would dictate any possible options(this usually depends more upon overall size and just what IS feeding it too). the thing ya have to remember with where this just is joanne is no matter what they do there, that bone area STILL has an 'issue', so you may not be able to even reduce that pain level, or maybe just 'some', or maybe be pain free too. its kind of a crapshoot, just like with injections and or other potential 'fixes' too. but hopefully the vasc doc will have more info and options for you to at least consider. but that particular vert will also always be a bit weaker too. its just the nature of bone when 'something' is IN it, and makes it not a 'solid' piece of bone anymore. but they DO really need to ID the make up of your particular hemangioma too. and they will more than likely either do a contrasted MRI on this or even an angio to see if there just is ANY possible light up within that angioma at all. knowing what anything actually 'consists of' is better for possible treatment options too. they could also possibly try and sclerose this with a form of alcohol, but doing that really depends on where and how lg the feeders are since it can run thru that vessel of the overall inner vascular pressure is not high/strong enough to prevent whats called a "reflux, or backflow? but that is something to discuss with the vasc doc among other things too.

just DO research all possible treatment options and make a good list of questions for this doc when you finally get in to see him or her too. i had three notebook pages of flippin questions when i saw my third wonderful opinion. and he took the time to answer every single one too. THATS a great specialist. but make CERTAIN that the shoulder surgery gets done FIRST before ever consenting to anything(if you can even get in to see the vasc doc this quickly) just so you will know for certain what pains/symptoms you have been suffering are coming from where in there. since that rotator cuff as a whole along with all the many tendons, ligaments joints and muscle are also interconnected to your ribcage too, its kind of the same type of "problem' when you have c spine issues but the tendons also run right straight thru along with a majority of the c spine nerves right thru that same rotator area? anything simply 'wrong' that runs thru another area where you are having symptoms just has that potential to not be where you may THINK it is. so getting that shoulder taken care of, healed and PTed and THEN really try and feel what is 'left over' to still deal with will help alot in simply telling your NS and the ortho who will be doing that surgery too just what pain could be from other potential sources. once even ONE pain generator gets taken out of the picture the reast can just be that much more clearly 'tracked back' to its real underlying sources. with what has been found on your shoulder MRI i really would not think your 'fix' will be too overly invasive or the healing time and PT anything like what occurs when you totally snap a tendon like i did. that is a totally different type of more in depth surgery when you just have much more repairs and damage to fix and heal from. if that one area is the 'only' real problem he finds in there, i think you will rebound back pretty quickly.

in my case with my rotator, some of what we 'assumed' was my herniated c 6-7(and some other levels of crap also found in there) really WAS in reality stemming from the mess of shredded and overly worn and torn tendons among other things in that R shoulder where MY most major symptoms also were from that c spine herniation. i just did not have a flippin clue how badly i had actually injured that shoulder many years before while lifting wieghts to just stay in shape for my job(i healed,and moved on). but i DID sure have some strange burning in my bicep and up top ON my shoulder bone whenver i over lifted. just never ever gave that shoulder a thought really. and then when that MRI was done on my c spine, everything else was kinda out the wondow as far as being looked at as fully as it should have been. i was too busy getting surgeries on my c spine and still freakin out about my cavernoma in my cord to even THINK about a lil 'shoulder' possibility. once that top tendon just snapped in half on me in 07,THEN it got ALOT of attention,lol and was found to be a real big mess in there as well. but i DO think you are on the totally right track here so far in what you have in place joanne, so thats great.

how realistically "long' anyone is going to have to be slinged or their own healing timeframe will go is usually more dependant upon just exactly what that surgeon needs to actually 'do' in any given rotator surgery. so i really can't give you a timeframe there, sorry. but if you are having this done THAT close to christmas, i most definitely would try and get as much help as possible just so you do NOT end up doing things you should not be doing til certain phases of healing take place. most surgeries where problems arise, are usually due more to the patient doing too much too early, esp when there just ARE alot of things to get done and they just 'feel' soo much better? so be careful and watch yourself with THAT one,K? you do NOT at all want to have to have that surgeon go back in to repeair something because it was simply overused before it was rehabbed back properly. just be prepared joanne and you should be fine. incase yopu have not yet seen this, there is finally a good rotator cuff forum right above here in the "R" section. it does have some good info on it. they did not have this when i had mine so we were posting up in the general section? but give it a looksee for YOUR specific problem and see who can give you some more direct types of info there. just a thought. marcia

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