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Old 10-07-2008, 11:58 PM   #1
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Effect Blood pressure and spinal cord?

Hi,
I just signed up earlier this morning to your forum. Thanks all for allowing me the opportunity to post.

Has anyone, studied, or had any expert opinion, treatment, or advise, that connected the relationship of blood pressure to their cavernoma, and or tarlov cyst.

My cavernoma is near C3. I am having the toughest time getting clear cut advice and treatment for a blood pressure problem. Have been trying to do some of my own research on this, but baffled by the medical jargon. So can only talk about my own symptoms.

Fainted since childhood, had nose bleeds. Never had a blood pressure, neither low nor high, until I had symptoms so bad enough from both the cavernoma and tarlov cyst to have a MRI taken. Previously, had blood pressure that would equate on an athletic scale.

Well, am considering surgery for the tarlov, yet still have to argue with docs how miserable the pain is. I can no longer stand but for a few minutes at a time, especially in one place, without my left leg burning, and then full bore nasty leg cramps, to whole body. I feel flu like most of time, and my forehead will sweat during that time.

After my last epidural, my blood pressure had risen so badly, that they almost rushed me to the hospital. This info was never recieved to my PC, and when I told her, it flew by her, she made no connection to my blood pressure problem and the tarlov, reason I got the epidural.

I read a few days ago, that steriods do something to blood pressure. I could only then, look back at these symptoms of flu like feeling, and how it does get worse however I move about during my daily life.

My worse onset of symptoms, were precipitated by my lowering my head to reach. Though my neuro's discount the size difference from the first MRI's. my cavernoma has grown from 2.9 to 4mm now. The last MRI taken about two years ago. I can only deduct for myself, that the cavernoma has bled since the first images were taken.

Was researching the mite out of this subject, and got somewhat confused, to old chicken and egg theory. That one's blood pressure can actually cause a bleed, and vise versa, that these afflictions of the cord, have an effect on blood pressure.

I keep asking to see a specialist for my blood pressure, but then my doc asks me which kind. I am on blood pressure meds, but bp is still erractic, and had horrendous side effects this past week, trying an addition regime with added bp med.

Does anyone have any imput on this subject? Surgery no surgery, docs or no docs, want to feel better.

 
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Old 10-08-2008, 09:40 AM   #2
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Re: Effect Blood pressure and spinal cord?

sorry you have to deal with the cavernous hemangioma crap too. i had to have mine removed in 03 since it had already bled twice and my really amazingly knowledgable NS at the time told me if it bled again i would run out of cord space. your cav is active too? believe me,i DO know how you feel. the one big thing having to do with our BPs that are directly realted to the cord is the sympatheic nervous system, and the para sympathetic. is your cav laterally located or someplace else in there like anterior or posterior? my SNS was damaged during my surgery to remove my cav back in 2003,but it was not in a favorable spot for surgery either but still had to come out since the next bleed i was going to definitely have would have just closed off that remaining space and permanently paralyzed me. great lessor of two evils choices there let me tell ya.

since your appears to be doing the very same thing mine did,you are probably looking at the very same choices i had too? unfortunetly i do not have time this morning to get more in depth here about this but i should be back tomorrow morning. the one thing tho that i think you really need to start looking at with regards to your BPs here is the sympathetic and para sympathetic nervous systems. look them up an just see how much and just what they really govern,you may see other issues that you have as some level of symptoms that could be stemming from possible involvement of just that. there are also things called spinal tracts within our cords that carry all of our governing info to and fromthe brain. some of them have very secific functions that can also be affected by just having that cav inside your cord at all or if it bleeds and starts affecting different tracts within the affected areas too. just some sugestions for you.

i had to start learning ALOT about neuroanatomy just to begin to even try to explain all the freaky wierd crap that started after my surgery. i feel like a walking freak show at this point,all from that surgery and what got affectred or outright damaged. my SNS just took a really big hit,which i was never actually told was even a possibility. if you could please just type out the MRI summary where it describes your cav and what area it is actually located,it would help me to help you in the very best way. alot of what you may feel and what could be being affected depends alot on the cavs posistion within your cord,not just the actual level it is at. that summary would tell that for me. i will be back tomorrow so plaease hang in there. sorry i couldn't get more in depth right now for ya. just do that research onthe SNS,K? marcia
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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 10-08-2008, 11:02 PM   #3
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Re: Effect Blood pressure and spinal cord?

Hi Marcia,
You don't know how much I appreciate talking with you. I read a few of your posts, we seem to be in the same boat, so to speak. I do belive the cavernoma is posterior dura, whatever that means. Can pin point the area, yet am not suppose to have pain there. Have lots of pain above it, around the base of skull, like a band to both ears.
Can post the mri in a few days, at moment, am having another whatcha callit. What do you call it, a flare-up? We tried a tiny small dose of my extra bp pills, and am still going through coming off of from last week. Boy did my feet swell, as well, put me into the condition, more, of feeling fluish. I don't so much have what one might call rushes, or the quick response feeling of a flush, but is as gradual as you might feel if you had air inside you veins, and it took that time to travel upward. Wow, that sounds strange. Kindof hard to explain, just feel lots of pressure, almost toward bursting.

This has been pretty much ignored or downplayed, am not in a good geographical area for the specialists. Neurosurgeon who I just saw is the most intelligient, and humane that I have seen so far. Others were quick, and treated me like I was dumb, even denied the MRI findings. Wow, how could that be, geez. Just have the wrong insurance, I guess. But so much for attitude. I have been able to weather through knowing what others have experienced, am sure you heard this all before, just had to get it out.

Docs are scared, I believe, to work with these things. And after years of suffering, though I am the one who is, I can understand them too.

What I wanted to know was do you get a flare up from different positioning of your body, like bending or reaching, does it bring on the symptoms, and any relation to blood pressure. I really want to get my bp under control. Convincing my PC, is that I need to see a specialist for this without first trying all kinds of different meds, is my problem. It is like I have to prove every symptom that I have with my docs. I wonder often if they think I am reading this stuff.

Was so upset, told her last time, that they should be spending every moment listening to these symptoms so they could learn more.

You must be a genius by now. But sure would be nice if we could just spend our time playing cards, reading more interesting works. Weird part, am from large family and they are showing signs, so similiar illnesses, that collagen defect seems to be the problem. Family is so big, a distant niece, if you can believe that, is the only one that I know of that has had cavernomas. But brother has AAA, stent in recent years, and has the weirdest MS that they have ever seen.
So tired of studying this, but is harder to get around the house anymore. Seldom go anywhere, anymore alone, and use the wheelchair most of the time when I do. Am only good a few minutes in any position or I become a pain show. Not a pretty sight, embarrassing, and really distracting at place that is trying to conduct business.
Shall try to get back with you with that MRI.
katey

 
Old 10-09-2008, 08:58 AM   #4
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Re: Effect Blood pressure and spinal cord?

yea,seeing your MRI and just the way your cav is being described and where it is located within the cord would help alot in pinpointing possible symptoms from it. tho they 'say' a cavernoma itself doesn;t casue any pain since is is basically a vascular glob that tends to ooze,it DOES make a huge difference in just where it is actually locat4ed as to what it will affect and casue in us,ya know what i mean? i have found with mine that i had ALOT of whats calledf 'perceptionary" pain and just off the wall types of sensations. more cord related crap tends to do this,perceptions of things? my absolute worst thing was the sensation i had like 24/7 that someone was trying to pry off my right shoulderblade with a flippin crow bar or something alonf with really intense pressure behind it. the only real relief i got was when i simply ground that blade into a nice solid wall and kind of countered that pressure? just nuts,but i am sure you have already felt the more insane side of just having 'something' insiode your cord.

from your description so far,is this actually on the outside of your cord in the dura then? or is it actually "in' your cord itself like mine was? if you have your MRI films,you should be able to actually see it on there somewhere and could tell me where it is located? using that one pic they take where you can actually make out the head and the c spine in the side view pic you should be able to at least see where it is located,either IN the cord itself or outside of it. if this is actually outside the cord,it is sooo much better for you,believe me. tho pain itself can raise your BPs,it is generally about only 10mms up and not a huge amount of increments,ya know? what is your current 'average' BPs running at this point? see,i have the opposite issue. my BPs were always already on the lower side but after my surgery for the cav removal,i went orthostatic hypotensive. my BPs kept bottoming out on me. knowing just exactly where your cav is located would at least be able to tell if your SNS is being affected within your cord area. like i mentioned above,my SNS was damaged duringthe removal surgery. it is actually withinthe cord itslef then as tyou get down to around the c 8 nerve area,its kind of ajunction area where nevers just change. thais is where the SNS chainactually starts and thenfollowsthe outside ofthe spinalcord all the way down to the lumbar area. where exactly is your tarlov cyst? this too could possibly be affectingthe SNS. the sympathetic and para are really the only real connection to BPs that i am aware of,there could be others too ya know?
i had actually seen three seperate NSs for a c spine surgery and also an opinion on what this little glob in my cord ment for me,and i got the same thing you did,one blew it off,one refused to fix my herniated disc with this still inthere since the areas were very close toone another. he was afaraid of another bleed. then i FINALLY got to the one and oly NS who i really really felt had themost overall experience and knowledge of these little SOBs. he was the ehad of neurosurgery at the university of MN,and had been in that posistion for i think like 18 years or something? but he had like over 30 years of overall experience and had also removed like hundreds of cavs from peoples spinal cords and brains. HE was the one who i let go in and remove it. at least i was able to feel i was in the best possible hands considering it was just not in that favorable spot for sugical removal and would definitely casue me damage to my legs and the nerves that went to the fine motor in my hands. (notice the great typing?)it affected my left hand only,thank god,since i am right handed,and it knocked out my left leg completely post op. i spent a few weeks in a good rehab hospital and was actually able to walk again. amazing really since after the first four days of enfored lying flat,i thought i could stand,but when i went to do just that,my left leg just crumbled underneath my all of 98 lbs. scared the crap outta me.

do you knowif you have any kidney diseases running in your family,the ones who are having the vascular issues? i am only asking since my PKD,which is a form of kidney disease is the reason my NS thought my cav was even formed before birth. people who suffer with PKD are just born with naturally weaker vessel walls for some odd reason. there is some missing enzyme or something that just creates that. so i have also suffered with a brain aneurysm a couple of years ago. my cousin had a brain aneurysm three years before mine showed up. my mom also has a blood disorder that makes her blood too thick(i do not have that) but it caused a stroke about five years ago and then a blood clot two years after that. wierd huh? she was just last year,found to actually have an hemangioma within her liver too. are they absolutely 100% certain that what your brother actually has is indeed a form of MS and not symptoms of something else? has he had all the testing done to prove this out completely?

once you can actually at least give me that summary of your MRI it would really help alot in trying to explain some things for you. it all comes down to location and size and repeated bleeds which as you already know can cause their own issues and also increase the overall size of the cav too. if you really feel that your docs are not taking this seriously enough for you,try going to any university teaching type hospital that may be nearby. these are the places that people like us go to when we cannot find the right level of knowledge in the average specialist population. they just see alot more of the stranger and more insane type crap at these types of facilitys than most any other type of NS would. this was where i found the right level of knowledge and experience and just what that little sucker ment for me. i had never been told either by the other two NSs that this SOB had actually bled,twice even. geez, kind of inportant stuff i should have been told ya know? if i had only known just what hemosiderin was i would have known just reading my own report,but i assumed it had something to do with describing the cav itself since i did know it was a vascular type lesion and hemo ment blood. wrong.

let me see that summary when you get the chance to type it,include everything too,that cyst info would be important to know too as far as location,espescially if this is indeed withint the cord,which i do think they are? correct me if i am wrong there,i just don;t know alot about those types of cysts. hang in there katey. i will be back. 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 10-09-2008, 11:33 PM   #5
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Re: Effect Blood pressure and spinal cord?

Sorry, still don't have it typed into computer. Is inside the cord. Only is described best on first reports, but will try to get other reports typed too. I think they report the location, not the size, nor placement within cord wrong. Seems that it could be further up than c3, which would explain some of the weird visual headaches I have. Those painlesss kinds that last 'bout 40 minutes.

Have old images, is inside cord.

Am having the most problem from that kind of teaching hospital, mainly is why I took the state out of my profile. MN, has the angio alliance folk, don't they? Wish I lived there, or could go.

My brother's latest diagnosis, was with MS, yet he has been told his MS was only a pay category previously. When pretty much forced to give him a MRI by his specialist young son from another state, and a different specialty, I honesty think they just made up MS once again. Then said, But it is the weirdest that they have ever seen. We have another case in our family, not my brother's child by sister child.

About the kidneys, I have these things inside my kidneys too, and just had one taken, think it was one, surgeon was busy that day, and wrote the report goofy on my history. When I went back to fix his err, had a chance to ask him about the thing in mouth that he removed, he said it could had been one. Though they were suppose to do a biopsy, apparently none was done. The mistake was an err putting some of my family history as mine, so not pertainent to any of this.

I have a little more white matter damage, than I am suppose to for my age too. Have had similiar symptoms to MS, but really have come close to symptoms of other genetic traits. We have confirmed charcot marie tooth in the family. I have classic symptoms. That disease has cavernomas too. We also have ehlers in family, and my son, has sickle cell trait. Son was tested several times in the miitary in their disbelief, cause we are caucasin, can't spell it. So much research needs done. I did extensive monkey work on computer but no one cept one other relative who is sick too, will listen. Her genetist is on similiar track, but in my opinion, looking at the wrong chromosome. Don't want to interfere with geneticist work here so will not mention more particulars, only my own theories. Will not lie and say that hers are mine, and will let you know these are my guess. But I think my family has some kind of partial deletion of chromosome 17. And again this is monkey work, and don't understand half the jargon. When I said big family, I meant huge one.

I have had to try to be as scientific looking at this, trying to discount my own theories several times. When geneticist did freak out, so to speak, with the family history, after I presented it to one relative, was only what docs confirmed with folks, I went back in my old research folders and saw that she was working on some of the same stuff that I had read. Yet, at that, we could all read the same stuff at any given time too. Really wish that someone would get ontop of this though.

Spent too much time, should had typed that mri for you, but looked at the gray's anatomy of the nervous system and did understand more since your last post. Is so hard to sit here, and focus.

Shall try to tell you more about the tarlov too, that is what I am considering the lamenictomy for. Doc doesn't feel good about it, but is so hard to go from room to room now. Can not go out along, etc. Think I said this before. I am going to need assistance sooner than later, and will add "much", to that if something isn't done. Would like to be independent longer, but am trying to weigh the risks, and don't feel all that comfortable with the way that I had been treated in the past, by docs that possibly could be his assitants doing it, who knows. Wish I did not live geographically where I do, or wish they just would lie.

Shall try to get back soon. Take care and my goodness, let's always laugh.
katey c

 
Old 10-10-2008, 03:16 AM   #6
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Re: Effect Blood pressure and spinal cord?

Hi Marcia,
Wow, two posts in a row, take you time answering. Shall be busy tomorrow, and not feeling well as the usual. Here is the report that compares the first study to the last, two years ago. A lot of this was not explained, they put me through a lot of trauma anytime I asked anything, always some kind of parlaying around. Now, am going to ask about the subacute blood products, wow.
February 07

This study was compared from study dated 05.

Impression:
1)Previously seen lesion within the dorsal aspect of the spinal cord on the right of the C3 level appears slightly larger on the current examination, now measuring approximately 4mm in maximal diameter. This lesion also appears somewhat less hyperintense on the sagittal T2 images (previously appeared of fluid signal intensity). There is some mild increased signal itensity in this region on the non contrast T1 weighted images which may be compatible with subacute blood products. There is also decreased signal intensity around the peripheral margin of this lesion on the T2 weighted images compatible with hemosiderin. There is no definte abnormal enhancement although subtle enhancement is dificult to detect given the mildly increased signal intensity in the region on the non contrast T1 weighted images. Given the fact that this lesion has only slightly increased in size over approximately two years, this would favor a lesion such as a cavernous malformation with primary spinal cord tumor felt to be less likely.


2) Likely no significant changes in osseous ridging at C4-5, C5-6, and C6-7 causing degree if mild degree of spinal canal narrowing. There is unchanged ventral cord contouring at C4-C5 and C5-6.

3) Likely unchanged foraminal narrowing as detailed in the body of the report.

Findings:
On the prior examination, there was a relatively well demarcated focus of increased T2 signal intensity in the cervical cord at the C3 level without apparent enhancement. On the current examination, this lesion appears slightly larger, now measuring approximately 4mm in diameter. Additionally on the T2 weighted images, this lesion appears slightly less hypertensive. There is a peripheral rim of decreased signal intensity on the T2 weighted images and the axial gradient echo images which may be compatible with some hemosiderin. There is also mild new increased signal intensity in this region on the non contrast T1-weighted images which may be compatible with some subacute blood products. There is no definite enhancement in this region, although the increased signal intensity on the non contrast T1 weighted images somewhat limits evaluation for enhancement. There are no other regions of abnormal enhancement. The sagittal T1 post contrast images are somewhat degraded by artifact. Apparent enhancement in the cord at the T1 level on the sagittal post contrast is not confirmed on the axial post contrast images. There is also some signal heterogeneity over the bainstem on the sagital post contrast images. No other cord lesions are identified.

C2-3 abd C-34 appear unremarkable without canal or foraminal compromise

At C4-5, there is likely no significant change in broad based osseous ridging which abuts and slightly cosntours the vental cord margin. There is mild degree of central canal stenois at thsi level. There is likely unchanged moderate bilateral foraminal narrowing.

At the C5-6, there is unchanged mild degree of canal stenosis secondary to broad based osseous ridging which abuts the ventral cord margin and minimally contours the ventral cord margin on the right. There is unchanged mild bilateral foraminal narrowing at this level.

At C6-7, there is unchanged osseous ridging with mild degree of canal narrowing. No significant cord deformity. Neural foramina remain patent.

C7-T1 and visualized upper thoracic disc levels appear unremarkable.
Please excuse the some of the misspelled words. I never did well in typing.
Take care, and many thanks for taking time to read it.
katey

 
Old 10-14-2008, 05:54 AM   #7
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Re: Effect Blood pressure and spinal cord?

it would be interesting to find out just what they mean by subacute blood products?? never heard that one. it would appear from the description that your cav is somewhat to the posterior but towards the right? depending upon just where that SNS comes out or is at within your actual spinal cord at THAT level(it does change depending upon levels),it could very well be affecting it enough to show up in strange BPs. the SNS sits latterally but not too certain just how it sits BEFORE it comes out to the outside,ya know what i mean? if i were you,i would do some research on the sympathetic and parasympathetic nervous systems for a couple of reasons. seeing exactly where that sympathetic chain sits within the actual cord before it comes out(this actually happens lower than where your cav is,but i don;t know exactly where it sits above it or at that c3 level,thats what you need to try and find out. using the PC to search for this would give you better more specifc info than trying to rely solely on the grays anatomy,believe me,got one of those too,lol. its just way too over my head to try and understand it sometimes. things usually get explained better at specific sites. but seeing just what that SNS and the pars actually govern will probably pop up a few other things you are dealing with or feeling but had no real explanation for? it just governs alot so when it becomes damaged or affected in some ways,the things that are governed will also become affected,like BPs. posistion can also change BPs too,believe me, went thru that one myself too.

since your cav is 'active' what have they said to you about possibly removing it before it does more real harm? it will continue,most likely,to bleed and grow both with the left behind old blood products(hemosidrin) and just the way they expand from within when there is a bleed too ya know? yours has really grown pretty quickly. i used the alliance thru my PC,they don;t have people here either,to make my lessor of two evils decision about having this thing removed or not,they were very very helpful too. best source of cav info out there in my mind. has any of your docs told you whether or not this cav is even in a favorable spot for removal? i know mine was not,but it would appear yours is more to to the outter area of the cord and perhaps much more easily accessable?

just where is that cyst located in your spine? i get the impression it is much lower than the cav is? are they assuming your leg issues are from that cyst or the cav at this point,or don;t they know that yet? how big is that cyst? like i mentioned before,i really don;t know a whole lot about them. 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 10-15-2008, 06:18 AM   #8
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Re: Effect Blood pressure and spinal cord?

To talk about the tarlov we are going to have to jump to another forum, I believe, strange, but think that may be back problems. So will post there.

I am totally ignored. That is is so dangerous to work them, and their attitudes, for now have decided not to do anything until it is too unbearable. The lower cyst is more problematic at the brief moment. Brief moment is making the pain sound less, but "brief" explains that I do have problems with it. When they gave me traction, no kidding, am sure that it made the cavernoma near c3 rupture. Then think the other bleed could had been excerbated by, perhaps, a tetanus shot. Am thinking that, cause looking back to symptoms as child, my gait changed where I got ribbed quite a bit, and was after a tetanus shot. There are so many more things about these that research, is so inadequate at the moment, only the true dedicated are into it. The neuro's I have seen would just as soon give bad meds and let one rot in a corner than figure it out. I will not partake of my early destruction, tee hee. Not a laughing matter, but can bawl on this one, til the nostrils are so filled that one can not breath with tears. Am sure that you have been there before too.

They have written more physcological on me, than about the symptoms of these. They ask me more psyhce questions than questions pertaining to either of these cyst like structures. Therefore, the care and inforamation in return I get has been only pallative care. And third rated care at that. They honestly think that neurontin or the other stuff can help these, tsk, tsk. If I weren't so gifted with the ability to distract myself away from the pain, and be able to use the tools I have learned to distract the pain, then they could put me in that corner. They had kept saying for the longest time that they would wait til I lost all control of my continance. Did not put it that way, but close to.

Are you talking about angioma folk, the alliance?
Will let you know when I post on the other forum about the tarlov, need to lay back once more. Oh, oh, did find, finally, that the blood pressure, indeed is effected and vice versa effects these, both cyst like structures, so shall buy some ink today, and educate my doc hopefully enough that she recommend a specialist. This last mini dose cause this flare up that I am still not sure if I pulled out of or not. Those minor misgivings or mistakes they make seem to progress this thing. With the cost of trials, and courts you would think that knowledge about these disorders would be forefront. But think they are much more concerned where I live, in recruiting patients and building more buildings.

Oh goofed before, ending my last post, where I said I wish they would lie, where it is that I wish that they would stop lying and tell it like it is.

 
Old 10-22-2008, 08:06 AM   #9
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Re: Effect Blood pressure and spinal cord?

just wondering how you are doin katey? i cannot believe they actually DID traction???? on you with that? did they actually know the cav was there? if they did,oh my god,it could have been just completely devistating for you ya know? have you actually tried going to a university type teaching hosp? i don;t remember if i asked you this or not. this was the only place who had a freaking clue about the full impact and risks of having one of these "active' SOBs in the cord. let me know how things are going hon. 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 10-22-2008, 09:43 PM   #10
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Re: Effect Blood pressure and spinal cord?

Hi Marcia,
At the time, they did not tell me, that I had a cavernoma, but they did know it. I was referred to PT after the MRI. I was totally unaware of the devastatin effect that it would have. It felt good while it was being done but that day, i experience and either occipital or occular headache, am not sure which term as both are so closes alike. Is those headaches without the pain, but where the vision gets grossly distorted, and last about 40 minutes. Then the legs started cramping from the Tarlov. None of this was explained to me, and these points and connections were never made, other than me stating it and putting two and two together for myself. This is why I truly believe there to be a connectioin, and in that, that blood pressure has something to do with it, as well. But then that would be CSF, probably. Sure would had been nice to have support from the med proffesion at the time, but was a teaching type facitility, famous at that, they did these things. I protested, in sorts, stated my concern over the epidural injections but was treated stupid, to the point where I felt intimidated. The injections put me in a wheelchair around house for two weeks, with symptoms of both upper and lower cord. They deny to this day that my cavernoma is active or have symptoms of it. My handwriting is obvious, I can't even read it. Have not lost much in that regard to them, but have to understand here, that I have been used to fine detailed work, heavy into artwork, faceting gemstones and the likes. Often my fingers trip over each other. That my symptoms are not as debilitating as the tarlov for the cavernoma, have been focusing on the lack of mobility that I am experiencing and horrendous pain there.

We know, that the cavernoma can be life threatening, another thing I have but only read. Given my family history of strange paralyzing and some normal stuff like heart attacks and stroke, one would think they would be more concerned, or interest from a learning facility. Has taken me a long time to talk about it. The treatment I have received, has made lead me to get stronger mentally where have had to focus on keeping it together, if you know what I mean. Have learned a lot of patience, how to deal with humiliation, well lets say more, and how to accept defeat, which is not always good. Not always good have to stress, but keeps me going. A lot to dealing with it is about forgiving the nature of us fragile human beings, we all have our failings, etc. I get to a point, where I feel almost ashamed with myself for not fighting up against this form of ignorance, yet at same time am so aware that I am waging a loosing battle. That is when good old survival comes in play, and I have to go on anyway, make the best of each day. This only takes a few minutes, when I catch myself in tears, sometimes seconds. Though I am not ashamed to cry about it, nor ashamed to show pain in public, I try to avoid both, since it puts people in an uncomfortable postion around me. I have freaked out quite a few people in line at stores, cashiers, salespeople, etc, during embarrasing pain attacks, so try to avoid those situations. I do mostly everything in the morning when the pain is somewhat toned down. Lately, that time isn't up to par, my reason for searching once again to get better treatment. I did not leave the state, which I think I will have to do. Not moving, just see qualified doc.

So am back at square one, but with diagnosis, images, and trying to renew hopes that all docs aren't like the ones I have seen. What happened at appt the other day.

They would not accept my insurance, it had changed. So now have to go through different avenues about that. Told you this is a parlay time game thing with these folk, and seems to me has to do with some initiative on our ballot perhaps, but just in mere part. Have to remember this is a no earmark state, argggh.

Do see my PC today, young nice sympathetic fellowship doc, but just wonder what is getting written in these reports as she is new to me. Most of our time is spent doing some unrewarding paperwork, not much else, but write a perscription that could be a big mistake. The last one, was the extra dose of blood pressure meds. So will see what happens tomorrow. Somehow I feel like I am getting the placebo, tee hee.

Had doc appt and the likes all week, but shall try to catch up after tomorrow.
Take care,
katey

 
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