HealthBoards (
-   Rare Disorders (
-   -   AVF/AVF in Spine - does anyone here have this? (

confounded1134 10-21-2005 11:48 AM

AVF/AVF in Spine - does anyone here have this?
I am interested in hearing from anyone that has been diagnosed with an AVM/AVF or anything similar in your spine. I haven't officially been diagnosed, but the malformation is very evident in the MRI's and I have been having excruciating back pain for a couple of years now. Of course, I'd been told everything from I'm depressed (well, pain has a tendency to do that to people), to trying to get out of work (I really enjoy my job), to it's the DDD, the old fractures, arthritis, you name it. Well, I'd done PT, muscle relaxants, arthritis medicine, and several types of pain medicine. Nothing eliminates the pain completely, but I manage with Tylenol 3 and that helps me cope. Through it all, though, I am still the chipper, happy-go-lucky person I was before, although I've been through my ups and downs.

Anyway, to the point, this past year the back pain went from a few days once or twice a month to EVERY day. It didn't matter if I stood, sat, changed positions, lifted anything, etc. They'd found a vascular malformation in 2004, but I considered that pretty trivial & not the root of the problem and didn't follow up. I guess I should have. My MRI in Sept. found, pretty conclusively that I had an AVM or a dural AVF at T-12; I suppose I won't know which or anything further until my nuerologist appt. I have, for the past 3 weeks, been having numbness, tingling, muscle weakness and cramp-like pain throughout my legs and feet. I've had a couple of days with only minimal symptoms, but it seems to be compounding and getting worse daily/weekly. I still have sensory feeling (pin-poke) and can walk, though I cannot walk for long distances. If I walk too far, my leg muscles lock up and it feels somewhat like muscle failure. I did stub my toe this morning, but it didn't hurt (although I ran into the door jam with my shoulder, too, and it still hurts!) and my reflexes seem (to me) to be hyperreflexive.

Really, I just want to hear from anyone else who has had this and to hear what your symptoms were, how they progessed, and any helpful information you can give me. SORRY this post has been sooo long, but I'm a long-winded person! :)

Chris - age 23

feelbad 10-22-2005 07:30 AM

Re: AVF/AVF in Spine - does anyone here have this?
have they confirmed it is indeed an avm?this is what they originally thought i had inside my spinal cord but after I had an angio done and it didn't lite up,it was found to be a cavernous hemangioma.i still have part of it that was left behind after they hit and lost the nerve that went to my feet during the surgery to try and remove it.they had to immediately stop my surgery.who have you seen so far to actually discuss this and what to possibly do about it?these can be nasty little SOBs depending on just where they decide to show up.There are some threads regarding these that are located in the brain forum and the spinal cord forums on these boards.If you just go to those sites and do a search by using AVM you will find quite a few posts about people who have them.honestly,the best things you can do for yourself is what you are already doing,RESEARCH.And getting more than just one opinion on possible options for surgery.unfortunetly,depending on just where these are located in the spinal cord or brain they may not be able to even be safely removed.mine was in a spot that was not considered a "good' candidate for removal but i was having bleeds which were causing me more pain and neuro issues so I really did not have much of any real choice here.unfortunetly for me, my cavernoma ws located close to the cord wall(which is good) but the nerves that went to my legs and the fine motor to my hands ran right between the cav and the wall.i went into surgery knowing for sure i was going to have some sort of loss at least in those areas and probably more,my NS just could not tell me what or how bad.i did have alot of secondary damage with alot of crap that came along with it.but at least I don't have to worry about a sudden bleed causing me instant paralysis,which would have happened when it bled one more time if i had not gotten it out when I did.but I also know someone who had one in close to the same area as mine who also had there surgery about two weeks before mine,and his went without a hitch and he was back at work as a gum coach only six weeks post op.sooo,who knows.

just research and find all you can about what it is you are actually dealing with and possible options as far as any sort of treatments.unfortunetly surgical resection is probably the only "real" sort of will all depend like i said,justwhere yours is located and the nerve structures that are inthe immediate area.if you have any questions please ask,K? i wish you luck chris.Marcia

confounded1134 10-22-2005 12:38 PM

Re: AVF/AVF in Spine - does anyone here have this?
THanks, Feelbad - I actually posted in the spinal cord disorders page, but wanted to change my post name (I didn't realize you couldn't hide your user name & my old one is not good to use...since it is my actual name). I've done a lot of research, and have copies of all of my MRI films and reports, but the one thing I can't find anywhere is someone telling me what their progressive symptoms are. I can find scientific/nuerological reports and literature, but this is coming from the DR, not the patient, and I want to hear from other people with this type of condition. I know what I am feeling, but I don't always know how to describe it, it doesn't seem so cut and dry as the medical profession would like for it to be. Like, am I really feeling muscle weakness? What did it feel like to other people? Did you or anyone else have the cramps, aches, numb-but-not feelings? Did you have back pain; if so what was it like? Those kind of things.

To answer your question, my lesion is in the dura matter and has caused flow voids and a swollen conus medullaris (sp). To date, no bowel or bladder disfunction, but my reg. doctor is worried about that. It feels just a little spooky to go through this without knowing just how fast these symptoms will progress, if at all, since it seemed to be such a sudden onset. Do they even have a chance of going away? I guess it's not as bad as having it directly effect my conus equina, but whatever. My MRI's show flow voids in my thoracic spine above where the obvious lesion is at T-12, so I don't know exactly what that means just yet. I haven't found any literature on that just yet, but I'm still searching.

Any kind of description of your symptoms & progression would be wonderful to me, though - how fast everything happened, the time between diagnosis and surgery, etc. Thanks a bunch for replying, Marcia!!!


feelbad 10-24-2005 07:37 AM

Re: AVF/AVF in Spine - does anyone here have this?
if you are really nice,I will let you use the new word I came up with to try and best descrbe just what we feel as far as the bizarre nature of some of the senations along with that wonderul wierd pain."painsations".does that kinda describe what you are dealing with?all of my spinal cord injury related pain and the pain and bizarre sensations that were being caused by my cavernoma inside of my cord before the attempted resection,ALWAYS were some strange/bizarre pain along with some sort of neuro component or vice versa.Honestly i was just so totally unaware of all of the most godawful,bizarre,excruciating 'painsations" that the human body was actually capable of creating.can you actually believe some of the incredible crap that you have been having to deal with in relation to your AVM?

unfortunetly,there honestly really is not any actual way of really knowing just how your symptoms will progress,it is very highly two are ever exactly alike or ever in the exact same spot or affect the exact same areas of the body.i know that that really was not just what you wanted to hear,but unfortunetly,this is just the way these things are.They suck!the pain and sensations are indeed the hardest part to deal with when you are trying to relate to someone,even your NS just what these all really feel like.for instance,my biggest pain area that was being caused directly from the cav in my cord was this just plain hidious agony kind of underneath my R shoulderblade that felt like someone was actually back there with a crowbar under the blade and trying to pry off the blade itself.interesting,huh/ there was definitely a huge 'feeling' of intense pressure along with alot of pressure/type of pain,like something was actually pushing out the blade from the inside of my body.There must have been some sort of actual pressure really going on there because the only way i got any sort of relief from this is if i actually stood up with my shoulder blade area kind of 'jammed' into the wall?and then I would have to keep hard pressure and actually grind it into the just how bizarre is that??trust me when I say I do know how you feel here is much easier to explain things if you use the type of description,like i just gave to describe what my shoulder blade pressure/pain was like,try and compare it to something that other people would relate to like i really need to be rather creative at best.i would suggest that you do some research on something like "neuropathic pain descriptions"in a search engine or something along those lines.Or spinal cord injury sensation and or pain descriptions.As you are seeing with your own situatuion,just about ANY sort of pain or sensation is possible when you are dealing with anything that is actually affecting the cord itself.
sorry I couldn't be more helpful to you.please keep me posted on how things are going for you.good luck.marcia

confounded1134 11-09-2005 01:51 PM

Re: AVF/AVF in Spine - does anyone here have this?
The day to visit the neurosurgeon is fast approaching. Friday is the day…This is just a consultation appointment where I bring my films, etc., but can anyone tell me what to expect this first appointment? Will any tests actually be done? I assume that I will need to have a spinal angiography; can anyone tell me what this involves? Feelbad – I know that you have gone through a similar experience, can you provide me with any insight? I just want to prepare myself. I am actually getting excited; probably not something you hear a lot from someone going to the doctor, but to me it is a culmination of a long road of searching for answers. I do hope that this will not disappoint me.

Thanks for your post, Feelbad. I like your description of the painsations – I promise to be nice! It’s a little different for me, though, as what I experience is more like muscle fatigue in my legs. When I’d fractured my spine, I couldn’t walk for 6 weeks, and when I finally was able to walk again I experienced muscle fatigue the second day I had my okay to walk. Of course, in this instance it was much more severe and actually caused me to collapse and lose consciousness for several minutes, but it is the same pain in my leg muscles. I still have the buzzing in my feet and ankles, but the worst is the cramping and the feeling that I may not be able to take another step; although so far I have always been able to take that step. (can I coin the term “crampsation?” ) The symptoms get worse when the back pain increases, and I notice that when my pain gets bad and I lean against a chair or a wall, it really feels like I’m leaning on something like a small balloon in my mid-back – I have a sensation that there is actually something there. Well, I hope to at least get some answers on Friday, and I am going to work on a list of questions that I would like to have answered while I am there. If you’re not prepared, they’ll give you a quickie!

feelbad 11-10-2005 06:14 AM

Re: AVF/AVF in Spine - does anyone here have this?
Yes,write down those questions,and then remember to actually bring them with you and not leave them lying on the kitchen counter like someone i know did,How stupid was that?i always keep a paper and pen sitting in a spot that is always handy so i can write things down when they pop into my head.If i don't do it asap,I do tend to forget.It's good when you do understand your own limitations,lol.i di have an angiogram at first but mine was to actually find out for sure just what my malformation actually was.They were not sure whether it was an AVM or wont(most likely scenerio)actually have any testing (definitely not an angio as you have to actually make an appt to have that set up)what he/she will do first will be just ask about symptoms,onset,that type of thing and take in your Hx.They will also do a neuro eval to see just what motor and sensory are being affected.and determine how bad your losses are.They may scedule you for an EMG if you haven't had one done yet,or it has been a while since it was done.This will helpt to determine actual nerve loss and damage.mine was really interesting after my surgery.i took some big hits during surgery to try and remove my cav.this first visit will be mostly just eval and hx taking and looking over films,that kind of stuff.After that,well, it all kind of depends on your NS and what he/she wants to do next.That kind of varies from NS to NS,they all have their own ways of doing things.just make sure to ask all the questions that you feel you need to,don't hold back on anything.i was very lucky in that my NS is the type that will take all the time he feels is needed to make sure that his patients really understand just what is going on and will explain things in detail if of the best ways to really honestly tell (or is the best sign in my opinion)just how good an NS or any doc really,is by just how long you spend in that waiting room.if you are actually going in almost on time,for your actual appt time,I would wonder just how thorough this doc really is ya know/god,I have had to wait(my last appt with my NS just last month)almost two hours to see my NS,as he IS just a very thorough kind of pisses me off to have to sit there but I know that when I go back to see him,he will be taking that same time with me too.The only reason that my latest nightmare(the brain anerysm)was even discovered was because my NS IS so facial symptoms could have easily been explained as being directly stemming from my sp cord damage,but given my Hx of polycystic kidney disease(people with PKD are born with much weaker vessel walls and have much higher rates or aneurysm) and the fact that I had already had some vascular malformations,he sent me for that MRA and sure enough,i had the aneurysm up against my brainstem.As it turns out though,none of my facial symptoms are actually related to the aneurysm at all,and are all coming from the,there ya go.i hope all goes well for ya tomorrow.please keep me posted K?good luck,Marcia

confounded1134 11-18-2005 12:36 PM

Re: AVF/AVF in Spine - does anyone here have this?
Well, just a quick update from my appointment with the nuerosurgeon, I have to have a spinal angiogram done the day before Thanksgiving. I'm glad it's getting done, but hate that it's the day before Thanksgiving and I won't get out of the hospital until 9:00 that night, if I stay for the full 6 hours they say you'll be there after the procedure.
The good news is, my symptoms are not as severe as they were. I wonder if I actually had a small bleed when I had my sudden (over a couple of days) onset of symptoms. I was so bad for a week or two that I could barely walk due to the muscle weakness/spasticity, but since then my symptoms have subsided to just having constant minor cramping in my calf/ham/above the knee muscles and constant buzzing in my feet. Although, I did notice the other day that the area right behind my toes on the top of my foot has very little sensation, but it's stayed there and hasn't spread. My back pain was better for a while, although this past week it's started another episode and I can expect this to last anywhere from a few days to several weeks, but I've been dealing with this aspect for a while now and have ways to cope.

Anyway, I hear the angiogram is relatively simple, so no worries; I'll let you know what I hear after the angio.

Thanks for the support, FeelBad!

confounded1134 12-02-2005 02:07 PM

Re: AVF/AVF in Spine - does anyone here have this?
Well, I had my angiogram done the day before Thanksgiving and they found the AVM relatively quickly. It is a "true" AVM, not a fistula, and I met with my neurosurgeon on Wednesday of this week to discuss the results. The AVM is small, but I guess that means it is more prone to hemorrage, and it has started to "recruit" other arteries, creating what they call an arterial steal, in other words it is stealing blood from arteries that are supposed to deliver it elsewhere. Because of this, it is not able to embolized and it looks like surgery is my only option. I've see things on the stereotactic radiosurgery, but it takes two years for the lesion to be completely obliterated, and I'm not willing to wait that long. My symptoms have subsided after a really bad weekend before Thanksgiving where I could barely walk.

My neuro is referring me to someone in St. Louis who would have more experience with these types of things, so I'm still waiting to get my appointment there. I suppose that I would decide what to do and schedule any surgery at this time. I'm a little nervous at the thought of surgery -

Feelbad, what does this type of surgery involve? How long were you in the hospital? What was the recovery afterwards? And, your spinal cord is encased in your spinal, exactly, do they get to it? I can't find any information of this type on the 'net, and I'd like to know how your surgery went. I guess this is just the start of a long road ahead. The docs don't think this is causing my I'm sure that eventually I'll have to have surgery to fill the compression fractures and get rid of the bone spurs. I don't know what they do for Degenerative Disc Disease...I guess that'll come later, since I'm in an earlier stage of that. So, between this AVM, DDD, bone spurs, arthritis, kyphosis, scoliosis and lingering pain from having compression fractures in 5 of my vertebrae, I feel like I'm more like 70 than 23. Oh well, I guess I'm lucky to still be here...

I look forward to hearing from you, FeelBad!

feelbad 01-25-2006 08:12 AM

Re: AVF/AVF in Spine - does anyone here have this?
Sooo,how are things going? I really am sorry I havent responded sooner,but i had forgotten that I was actually in this board at one time and just popped back in.really am sorry for making you wait for so incredibly long.What have you found out since the last post you made?Have you seen that doc in st loius or are you still waiting?i know how long it actually takes to get in to see a new specialist,hopefully your not going to have to wait til after the next like fourth of july?

The surgery I had could be different than any procedure you may have only because your malformation is high pressure and mine was low.that could make a difference in just how they will actually treat or remove it.but for my resection,they did a tri level lamenectomy?a lami is where they just kind of open a window in the vertebrae that are over the area of the cord they need to get to.this isn't quite as bad as it sounds,really,you do not really lose any big structural integrity overall.and tho the windows will stay that way,you have very thick muscle that actually covers the spinal column and it will still protect your cord.the opening really are not that huge enough to actually expose the cord to any real damger at all.The only real way you will know if your symptoms are being caused by the avm is by what changes post will also probably end up with some new stuff like wierder sensations that will pop in and out along the way.the beat way to know if you actually had a bleed would be by MRI and what it states in the rad normally will not state anything about actual blleding or blood,but will state something about a hemosiderin ring/halo/or deposit.the hemosiderin is actually the remains(iron depsits)left behind from a bleed.the iron shows up like a halo effect on rad films.this showed up very clearly at the first MRI(i had already had at least one bleed before i even knew it existed in my cord)and there were actual "changes' in the size and postition of the halo upon the next MRI i had done before my actual suregry was done.this was when he first brought up the actual surgery as his fear was that the next bleed would most likely fill in the cordspace that i had had left and cause instant paralyzation.the next bleed,from what he told me,only because i had already had at least two,would be probably sooner rather than later.cavernomas(not too sure about the actual AVMs)are very very unpredictable but once you have actually had one,it becomes much much more likely that they will repeat.

personally I think your docs are probably totally off base with telling you that your pain is not comming from the avm,really.this belief(that any of the vascular malformations inside the cord)that these do not cause pain appears to have been a very strong belief at fisrt,but as my NS told me,that is totally not true anymore(docs are finally waking up??).I mean geez when you have a patient who is having alot of pain and one who has nothing else actually wrong with the spine in any other way,who comes to see a doc about this horrible pain they are having along with really freaky types of symptoms,how can they possibly tell you there can be no pain?espescially when it is actually running thru the nerve center of your body.I was told by two other NSs before i finally went to where I got answers at the university of MN,that the pain i was having was no way stemming from the cavernoma iside my cord,well the third and final NS(the one that I actually let do the surgery)told me almost immediately that oh yes,that is a definte connection.he even drew me a damn picture of how the nerves ran and how that affected the cav and caused my actual pressure type of gnawing nasty pain.

as far as your actual hosp stay and rehab?that is very very much individual and totally dependant on many different depends on things like just what type of procedure they decide to do,where it is actually located inside the cord and what nerves and actual spinal tracts are being affected and the amount of collateral damage that may occur.I was actually hospitalized for over a month spending the first two days in the icu,and totally flat for the first four days.then on the regular floor for about a bit over two weeks,then transferred directly from that hosp to a wonderful rehab hospital in st paul, for about the same length of time I had spent at the u of m.i needed to regain the use of my L leg and try and get back as much of the fine motor function in my L hand as was really took the biggest hit as far as damage,but the leg and the hand thing was rather expected as those particular nerves were in the way just to get to the actual I knew going into the or that I was going to come out with some sort of damage to my fine motor in possibly both hands and then damage to possibly both in that respect,i was rather lucky and thankful that it was not as worse as what I had been scaring the hell out of myself thinking about pre op.but every case is very i said,it is all highly individual.hopefully they will be able to get to it without having to go thru any nerves like they did with meThere are also other options you actually have with a avm that you do not with a cav so you may not even actually have to have it 'removed" at least not the way they had to do it with me.having that 'arterial connection" makes other options possible that you would not have with the veinous one of a cavernoma.

i am looking forward to hearing just how things are going so far and any news that you may have on what the plans are.i certainly hope you are still not in the waiting to see the doc mode.Let me know,K?? again,sorry for taking so very long to get back to you,my mind is not all there sometimes ya know?marcia

confounded1134 01-25-2006 08:52 AM

Re: AVF/AVF in Spine - does anyone here have this?
Hi Feelbad - no prob about the reply. It's always a "wait and see" type thing anyway with the docs. Right now I have my surgery scheduled for Feb 9 - only two more weeks. The NS said it was an "urgency" and not an "emergency" but i'm ready to get it over with and get back to a norm, whatever that may be after this surgery. I'm really optimistic that this will turn out okay, although the NS did say I may lose some spatial recognition in regard to my legs and that some weakness may linger - however, I already sporadically have those problems and it will only get worse, so I see this as my only real solution.

Mine is a type II glomus AVM, but the latest NS isn't for sure on that. I've had a lot of trauma to my spine from a car accident where I crushed five of my vertebrae, but that was in my upper C-6 through T-5, and this is at approx the T-12 - he says he won't know until he gets in there. My work has been great, but I'm out of leave since this has been going on in conjunction with the pain from the old compression fractures and having a 2-year-old in daycare (sick all of the time!), so I have to apply for Shared Leave or I won't get paid for the time I'm off. Basically, you have to be dead or dying to get this leave, but I'm hoping I'll qualify! That is my biggest predicament right now.

Thank you for keeping up with me. I feel much better going into this ordeal having conversed with someone who has had a similar experience. You've been a lifesaver, and I am so glad these boards are out here for people like us!!

I do think that my added back pain is coming from this booger in pain was manageable before, but now it really gets out of hand fast to where I cannot breathe, talk, eat or move. I think that this can only get better!! Wish me luck - I'll update you after surgery when I can. Keep that attitude! :-)

feelbad 01-26-2006 07:35 AM

Re: AVF/AVF in Spine - does anyone here have this?
Wow,I DO really wish you all of the luck in the world on this for the best possible outcome.i just had a suggestion for you tho.whjen my NS was telling me about my surgery,he also mentioned that it cold take up to a year to actually heal from this.I did not think of this before the sugery but only after it when i was actually sittin in rehab trying to regain the use of my L leg and the fine motor in my L hand,but starting the application process for disability NOW vs later may help you part of the actual criteria for possibly obtaining disability is if you have some sort of condition that is expected to last a year or more.since this is a very long drwn out prcess,you may want to actually consider starting this and at least have things in place for what may come may not be able to go back to work(sorry tosy) there are just SOOO many unknowns here that you really wont know til post op and then a few months after that when the secondary sp cord injuries start to show themselves as they did with my I was very suprised at all the things that kept on and keep on popping up all the time.You just need to be prepared for any and all possible scenerios,you know?do it now just so you wont have to do the bulk of the paper work post op when you should be just healing.and make sure to make copies of any and all forms that you fill out before you send them all in,trust me,some of this stuff you may need to actually fill out twice,and you do not want to have to go thru gathering all of the needed stuff AGAIN and then also actually try and remember just what you ststed the last will be happy you made those copies,trust me.I did not do that right away and soo wished i had when all the rest of that paperwork started coming at me.just something to consider just in case.

That spatial ability your doc was referring to is called prioperception.i was old I would lose this too and it would most likely be there right post op but it actually did not happen til recently,now two years later.This is actually governed by your spinocerebellar tractt in the cord.there are many many tracts inside the cord that govern different things which could be affected post op.I also got the biggest tract damage to the spinothalamic tract,this alone has caused me the most major parts of my is also the pain pathway to the pain receptors in the brain.all of my pain signals are now being 'deranged" according to what my NS told me,and believe me,that word really does decribe just how freaky and bizarre some of my pain and sensations are now.but this isnt the same tract as the one your doc told you would be damaged so take a big whew!!the loss of your prio is not too bad really.espescially when compared to the other major crap I just have to be a bit more careful about how you walk. please let me know if you have any questions or if there is anything i can possibly do for ya,K? take care and please keep me posted when you can,Iwill be watching and hoping for the best possible surgery possible for you.Just a helpful hint here.if you are going to be needing to spend just even a weeek or so or possibly longer at any sort of rehab hosp.(this is always a possibility when dealing with like alot of diffrent types of surgeries) before you go for the surgery,gather up some really comfy clothes like sweats and any other casualtype of clothing for the rehab trip and stay as in most facilitys,you can wear your own clothing during your stay.I did not know this so my hbby and my youngest son both actually picked out my clothing.well, not a great result as you can imagine, if you do not want to really 'stand out' in the crowd,do yourself a huge favor and gather this all up yourself and just keep it at home til you may need WILL be glad you did if it is actually me on that one,lol.good luck.marcia

confounded1134 03-07-2006 12:01 PM

Update on AVM surgery
Well, it's finally over - I had my surgery to correct the AVM in my spine on Feb. 1st. It was scheduled for the 9th, but the weekend before my operation I had an episode that left me with such difficulty walking my husband had to help me just get around the house so my doctor decided to go ahead with the surgery early in case I had another episode that would leave me paralyzed. That was EXTREMELY unexpected! The hospital stay was horrid, I was so nauseated from the medication that I couldn't keep even water down, and they were not keeping me hydrated through IV so every time they came to poke me for a blood sample, they busted veins left and right, and since there were no private rooms avaialable immediately after surgery, when I was feeling the worst, I get a room mate whose entire family was there with her and eating ribs, chicken, steaks, etc. Then became confrontational with my PARENTS because there was a bag of mine by the bathroom, all in all a bad day!

But, I only spent 7 days in the hospital and am now home - still homebound, but glad I wasn't sent to an inpatient rehab center. I have little to no feeling in my right leg, but my strength seems to be fine and my spatial awareness gets better day by day. My left leg has lost a little feeling, but it has improved, unlike my right leg, so that everything just feels GROSS when it touches my leg - I am tempted to never shave my legs again, but that feels even worse! :-) So, all in all, I am better than I was before the surgery, but still recovering, and my doctor said I would be off of work for 3 months (not the 6-8 weeks I had anticipated). I hope that they upgrade my status from Homebound soon - I actually left the house for the first time over the weekend to visit my parents and it was nice to get out, but I spend a day recovering.

Thanks for all of your support, Feelbad, it was great to me to talk to someone who has experienced this. I don't know how to pay you back, but you are great! :wave: I hope my recovery continues to go well, and I hope you continue to find that each day gets better for you as well.

feelbad 03-10-2006 07:58 AM

Re: AVF/AVF in Spine - does anyone here have this?
Wow,its bad enough to have that type of surgery when it is planned and expected but that surprise crap really must have been a bit** to try get a handle on.I do feel for ya there,really.

Boy,it sounds like the hospital stay was a little nightmare all its own.that definitely doesn't help at all in your why didn't they bother to actually place an IV to hydrate you?that was just plain stupid there,honestly,ya think they would have a clue??after all,this was an actual hospital with all kinds of docs and nurses?oh yikes!

You sure didn't have to stay very long(which I am sure you were more than happy for with just that wonderful roomate and family)and no rehab hospital??wow,thats even better, does appear they were able to get it all then with minimal damage??

You WERE very lucky that this was not up in the c spine like mine was.having it out of that area all together was really a blessing.not that actually having an AVM is a wonderful thing,but you know what I were able to avoid the area that really is the most heavily innervated and that is great trust cav was in like the worst possible spot in the cord,right under the c 8 nerve which is kind of a high nerve junction area that has the possibility of causing some really major complcations and damage to some really key body function areas.luckily,my 'hit" wasn't as bad as it could have been but I still lost alot.

Just a suggestion to you from my experience with spinal cord injury?you may be in for some secondary spinal cord injury crap that will start to actually show itself over time.this may or may not happen with you but believe me,it IS a biggie for me,but that could just be due to the actual area where my damage is.but i would really highly suggest just keeping kind of a log of how things are during your recovery and any starnge or bizarre type sensations or pain or other wierdness that may start to show up over the next months.

I am not sure just why,but there are some specific types of things that when you are dealing with a spinal cord that has suffered any sort of insult,will only show up after a certain amount of time has passed after the initial injury was done to the cord.there is an actual reason for this to occur like it does but I just cannot actually remeber what it is right now(of course).but by keeping just a bit of the highlights in some sort of way will really help you down the road if something bizarre should just pop up.i just bought one of those planner type things and anytime I have some real freaky thing happen(for me this is an almost daily occurance,lol)i just write it may feel some really incredibly starange and rather bizarre types of sensations from time to time so don;t get all freaked out if or when that may occur.this is kinda normal for you now?i know,I feel rather blessed here myself,lol.but just note it.anytime you have an appt with your NS,always bring that little journalof 'events" with you so you can discuss this crapwith him.but only if you are actually having odd things happening.or any pain that may start to develop.hopefully ,you wont have to deal with that since your injury is way down below where mine is.

I really couldn't be happier for you right now,really.having anything done to the spinal cord itself is sooo incredibly scarey.believe me,I can totally relate to ya there.i am glad you came out all intact and able to walk and move your legs,ya had me kinda worried about that aspect.just be thankful for making it thru this without more than what you ended up with.i am really thankful for me in that way.honestly,when I think about all that "could' have happened,despite the pain syndromes and all the other crap I am dealing with,I know without a doubt,it could have been much much worse for me,wayyy worse.

I am glad I was able to help you in some way.I wouldn't wish what we have been thru on my worst enemy.having someone to chat with about having to go thru something like we did is really such a blessing.i had the support of a really great angioma site along with someone there whos hubby was having his surgery to remove his cav from right around the same area but his was up far enough in the c spine to actually avoid the c 8 nerve area and his was also in that 'favorable" spot for removal,and mine was not,but mine had to come out anyways as it had bled twice already and the next one would have taken up the rest of the little bit of cord space I still had left and also would have almost immediately paralyzed me. Having someone else to talk(type with?)to,really really helped me alot.unfortunetly I had not found this board site at that time so I was not able to chat with all the great people I have found on these boards then.

i hope your recovery is uneventful and extremely boring as hell,K? if you should be in need of me or are having a bad day.just hollar.I will eventually find you,lol.take care 1134(nice name) please keep me posted on how you are doin,K?Marcia

All times are GMT -7. The time now is 04:36 AM.