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    Old 10-13-2011, 10:41 AM   #1
    heatherhobbie77
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    Question MRI reports - please help!!

    I,ve posted previously, but have now obtained the actual MRI reports from my gp. Some was explained to me at the time, but a lot of this is greek to me.
    Nuerosurgeons reading:
    straightening of the cervical lordotic curve. There is some inpingement on the thecal sac between c4, 5 & 6. Congenital fusion of 5-7. Nueral foramina with some narrowing on right side at 6-7.
    she has significant across both trapezius muscles into the erector spinae muscles of the back of the neck. (significant what????). They are tender. Roates neck less than 1 degreewith restriction secondary to pain.
    reflexes are 2/5.
    She does have quite a bit of spasm in the neck and straightening of the cervical curve which is probably secondary to congenital fusion. I have recommended over the door traction, switching from flexeril to soma. Suggest her primary care doctor have her see a physiatrist.
    During the exam he showed to me to be alarmed by the frozen muscle spasms & showed me a pic of my MRI and pointed out where the curvature was non-exsisent as my c-spine goes straight up & down. He also showed me where my spinal sac is severly narrowed to the point of being almost non-exsistent in places. My gp's nurse read the report to me & she read psychiatrist where it reads physiasist. Therefore all my begging to see pain management has gone on deaf ears.
    Spine clinics readings:
    Old fusion of c5-c6. This is a congenital deformity. There is a loss of cervical lordosis, 3mm anterolisthesis, c2 onto c3; however, at c5-c6, there is an ostophyte complex causing mild effacement of the ventral thecal sac, left more than right, at nueral foramen.
    Impression: moderate cervical spondylosis with up to severe c3-4 nueral foramina narrowing, partial fusion of c6-c7. The patient will go ahead & have an interlaminar epidural steroid injection.
    I was told this:
    I have a congenital fusion, a herniated disc above said fusion, bone spurs putting pressure on nerves. They told me that my x-ray results showed moderate to severe stenosis. Still waiting for my gp to release my x-ray report. Also waiting for 2 spine surgeons to realease their reports. So far they are ignoring the requests of them from my gp.
    My syptoms are in my other posts. However I'm at my witts end & and so ready to throw the towel in as my quality of life has slipped into that of a disabled person. My girls have to help me shower, dress, cut my meat, sometimes help me drink as the left side of my face is numb now almost 24/7 & with more use of hans & arms I spill it down my front if I attempt it alone.
    All of you "seasoned amateurs" out there - please, please help. Any observations, suggestions or thoughts are greatly appreciated & welcome. I'm hoping some out there can read greek!
    X-ray finding as well now:
    Cervicothoracic scoliosis major convexity left apex C6 measuring 15 degrees. Prominent facet arthropathy C3-4,C4-5,C5-6,C6-7. Anterior sublexation C4-5, 5mm. Disc space narrowing C5-6. Congenital efussion C6-7. Findings resuly in spinal and foraminal stenosis escpecially at C4-5,C5-6 bilaterally.

    Last edited by heatherhobbie77; 10-14-2011 at 10:05 PM. Reason: Added 1 more report

     
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    Old 10-13-2011, 11:31 AM   #2
    heatherhobbie77
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    Re: MRI reports - please help!!

    Hi! Still me - I wanted to apologize for saying "seasoned amateurs" as I meant "seasoned veterans". One of my many "problems" - brain farts as I call them because when speaking I'm not able to find the word I'm wanting!
    Wanted to give my symptoms as I've been given so many different diagnoses I'm honestly at a loss.
    Loss of motor skills & functions
    Loss of balance (I fall 3-4 times a week - sometimes losing conciousness)
    No neck moblity at all
    Constant frozen spams in neck & shoulders
    Tingleing & numbness of limbs - arms, hands, legs & toes.
    Mental fogginess - not able to complete sentences
    Memory loss - complete loss of conversations that my cell clearly showed happened
    Constant muscle pain - sometimes left side & others right side
    Loss of muscle strength - cannot open med bottles or hold things w/out dropping them
    Constant dibilitating migraines that only differ in severity day to day

    I wanted to explain also some of the diagnosis & explanations from doctors so far:
    Spinal stenosis, spondylosis, bone spurs, severe arthritis with little to no cartilage between c-spine vertabrae & deterioration of bone matter (this they explained was the stenosis). Herniated disc, severe narrowing of spinal sac. I've had my gp throw around MS, atypical seizures & mini-strokes. There seems to be controversy why I have numbess of thr left side of my face. The spine docs say its a cranial nerve problem, nuerology says its from the pressure on my nerves & spinal cord in neck - saying there is a nerve in spine that affects facial nerves as well. Can you see why I'm so at a loss as how to proceed??
    How has others found new doctors?? I'm scared as my gp has been my doc since i was a teen, delivered my children & I've been confident in putting my life in his hands. Until now - although I feel a great deal of it is miscommunication as his staff does not relay messages or let me speak to him. I don't know how to look for a new doc or what type to search out! Do I just pick one from a phone book?? I live in a town of 13,000 but do have 2 larger cities within 30 minutes & St.Louis 1 1/2 hours away. I treied on-line & was given 4 "free reports" on the docs I picked, but struckout as 1 was now only seeing prison inmates, 1 was only in office once a week & one was no longer in area & the other not taking new patients. I'm scared, frustrated & lost. I apologize if I talk to much or seem overbearing, but this site has been a godsend as I feel I finally have people to talk to who are going thru same issues & so I'm not alone. I do want to find a new doc that "has time" for me & if I need to start over so be it. I can not keep living this way as my girls should not have to be my caretakers when I'm only 41 & they need to be teenagers.
    So please, any insight would be so appreciated. I,ve read other posts & have learned some new things from those - kinda renewed my fight. I want to get answers so I know what I'm fighting & so I don't end up in a wheelchair (which I feel is coming soon). One daughter is married & I want to be a hands-on Nana. I want as much of my life back as possible!! Thank you to all who read my posts & thank you in advance for any input!!

     
    Old 10-13-2011, 04:28 PM   #3
    jennybyc
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    Re: MRI reports - please help!!

    Hi Heather....let's start with an anatomy lesson...it's the best way for you to understand what is going on in your neck. If you know this stuff already, please forgive me but others may learn from it.

    Your spinal cord descends out of the base of the brain and into the spinal canal. The spinal canal is inside the vertebrae of the spine at the back of the bone.The much maligned disks are in the front of the vertebrae and in between them as well. That is why they list the areas as 2 vertebrae with their disk in between as that is where the most problems lie.

    So the first vertebra is C1 and it's a simple circle with a hole in the middle and no disk below it. It gives you the rotation of your head. C2 is a regular vertebra with a bone sticking up on top that C1 sits on. So at C2, nerves peel off the sides of the spinal cord and go out to the body. They serve the back/sides/top of the scalp and wraps around the neck. It MAY have a branch that serves the lower sides of the face and overlaps with the facial nerves that come directly from the brain. There is a disk between C2 and C3. At C3, another pair of nerves peels off and goes out to the body and serves the back of the neck and wraps around to the collar bone area. C4 has nerves that go to the shoulder area. C5 serves the upper part of the outer arm. C6 serves the lower arm on the outside down to the thumb and index finger. C7 shows up on the skin only at the middle finger. And C8...the nerve that comes out between C7 and T1 serves the ring and little fingers.

    So as you look at the spine from the back, if cut in half, you'd see all these vertebrae. At the front is the disk and behind it is the open canal for the spinal cord. The canal holds the cord and the cord is covered with a lining that holds spinal fluid in around it. They call this lining, the thecal sac. And at each vertebra, a pair of nerves peels off the cord and goes out from the thecal sac and then out through holes on either side of the bone called the neural foramina. Most of our pain comes from bone spurs or bits of herniated disks that hit these exiting nerves. When something hits the cord, it really doesn't hurt as like the brain, the spinal cord itself has no nerve endings but it can cause problems below, in your legs. Yes, you can have numb toes from a problem in your neck...the pressure on the cord transfers inward to affect the inner most nerves that serve the lower part of the body.

    If you look a the spine from the side, it has multiple curves. At the neck, the spine curves inward toward the throat, known as lordosis, the curves outward at the chest, called kyphosis, then back in again at the waist, called lordosis again and then it actually curves back out at the sacral area for the final kyphotic curve. As we age, we naturally start to lose the normal lordotic curves in both the neck and the lumbar regions. Injury, arthritis and congenital problems can all make it happen faster. When the curve in your neck goes the opposite way(kyphosis), you end up not being able to lift your head.

    So that is basic anatomy. Terminology.....spondylosis is a fancy word for arthritis of the spine. Osteophytes are bone spurs caused by arthritis. Stenosis is a fancy word for "closing up" whether it be the spinal canal or a heart valve. Physiatrist...a doctor who specializes in physical rehabilitation.

    So here is what your docs have found: C1 and 2...fine. C2 is slightly(3mms) forward where it sits on C3. Inside of C3-4, there is severe impingement of the nerves that leave the cord to the body.....according to spine clinic but not reported elsewhere. As noted above, this would cause pain at the back of your neck and wrap around to the collarbones. Probably what is causing the muscle spasms in your neck and the vast majority of your problems.

    C4...okay...C5-6..you have that congenital fusion which means you may have been born with this or it happened on it's own during your lifetime. At C6-7 the same thing is happening..you are fusing naturally. Natural fusions happen when bone spurs from arthritis build up and form solid bone connecting across the bones surfaces.

    You have a narrowed spinal canal with these natural/congenital fusions as it builds bone and not always where we want it to. It shows that bone spurs and some disk material have pushed up against the thecal sac and as a result, filled up the spinal canal. HOWEVER, and this is a big one, you can have your spinal cord compressed down to half thickness before it causes problems or needs to be fixed. You only have stuff touching the sac and possibly the cord....my cord was flat as a pancake(instead of oval) and compressed to the point where you couldn't see any spinal fluid around it. A normal spinal cord in women is 10-12mms and I was crushed down to 5-6mms. So you have a way to go before it needs fixing. I suspect the doc made a big deal about it as it was something he could show off and so he did. You should see my MRI.

    He also made a big thing about the loss of lordotic curve and that is something that happens naturally but in your case, was sped up by that natural fusion. And since they are already fused naturally, it can't be fixed. But the good news is, it won't get any worse and shouldn't really cause that much pain unless you spend a lot of time looking up at the sky.

    So the bottom line is that your neck is not that bad with the exception of the closed up foramina at C3-4 that is pressing on the nerves to your neck muscles. This produces severe spasms and the more you try not to move your neck to avoid the spasms, the worse they actually get. After a while, the muscles freeze in place.....what I suspect has happened to you.

    Which of your symptoms does this explain? The headaches which can trigger migraines. Loss of neck mobility and spasms. And that is about it.

    Surgery to fuse C3-4 and remove the disk and bone spurs would probably help a lot but then you are looking at man-made and congenital fusions from C3 to C7 and you'd lose a lot of head movement but you've lost that from the spasms anyhow. But I would see the physiatrist first. I see one and she is great. Has me doing all sorts of physical therapy to keep my muscles loose so I don't spasm like you do. And I take the same muscle relaxer that the doc suggested...Soma.....quite strong. I doubt they'll do surgery until you get the muscles moving. Home traction units can be very helpful to relieve the pressure on your nerves as well and should give pain relief as well.

    As for all the other symptoms, I suspect your GP needs to keep looking. Have they done a brain MRI or MRA?

    One of the secrets I use for pain relief is therapy....not physical therapy but the emotional type. Chronic pain can drive you to suicide. I don't know of anyone who doesn't battle depression and anxiety from chronic pain. Psychotherapists who specialize in treating chronic pain can teach you a lot of ways to deal with it and it has paid off tremendously for me. I cannot suggest a better thing to do for yourself.

    So now that I've done my usual anatomy class and terminology class and looked at your records, I hope this doesn't upset you. Your neck is really not bad but you have a big problem in one spot that no one is addressing very well. If you could read some of the MRIs we have here!

    Anyhow, I'm here for questions and I bet you have a ton of them.

    hugs.......Jenny(fused C3 to T1)

     
    Old 10-13-2011, 05:58 PM   #4
    jennybyc
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    Re: MRI reports - please help!!

    Another suggestion that might help you. Nerves don't function well without Vit B...all of them but especially Vit B12. In fact. low B12 can shut down the spinal cord and cause all sorts of symptoms similar to what you have. And since it is a water soluable vitamin and can washed out of the body, it would be a good idea to start taking a good quality Vit B complex pill...they have all the B's in them. Make sure it is high in B12.

    It can't hurt and may give you some relief from your symptoms. I used it after breaking my neck to help them regenerate and it really did work. I had a lot of similar symptoms to you and they all went away with time and good nutrition. Have to face the fact that we nana's(I use Nana too for my 2 grandchildren)need to take better care of ourselves.

    Jenny

     
    Old 10-14-2011, 09:35 PM   #5
    heatherhobbie77
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    Re: MRI reports - please help!!

    Jenny,
    Hi! I can not thank you enough for your reply!! Honestly, you don't know what it meant it tome to have someone care enough. And I LOVED the "anatomy lesson"! It's the 1st time anyone has explained the findings & the gist of the spine to me in words I can understand with mental pics to boot!! I'm very relieved to know the fusion isn't as big a deal as was made of it, but understandably a little ticked off no one (docs) even mentioned the problems at c3-4!!! Your info was so helpfull - I'm sorry it's taken me all s=day to reply (bad chest cold that generally turns into pneumonia). so I feel like double crap! LOL! But when I went to the pharmacy today I did pick up a vitamin b complex. And it was so interesting when you mentioned the b-12 cause a few years ago I was diagnosed with a b-12 deficiency & was on wekkly b-12 shots for a year when he decided to not refill it anymore - figured I was "ok" by then!! I'm already on a calcium vitamin as well. And I am in process of getting my gp to send to me to a physiatrist. It's what the nuerosurgeon recommended, but my gp's nurse read it as psyciatrist (right in front of me)! I'm willing to try anything at this point! And it makes so much sense that with my neck being in so much pain I do deliberately try very hard not to move it & that would cause the frozen spasms. When they explained my MRI I swear they made such a deal about the fusion, the narrowing of the sac & the non-curve that they teriffied me & sent me away. How many times do you this physiatrist?? I have also been searching for a psychiatrist as that's what I was told to do - but i like the idea of the other you mentioned & will look into that instaed. Because your right, the chronic pain just pulls you down, makes you focus only on it, alienates one from your loved ones because they simply can not understand!! And my panic attacks have kicked into high gear! It's litteraly debiliating to hurt so much you wish sometimes you wouldn't wake up in the morning..But I have 3 beautiful, amazing daughters that keep me plugging away! I have found the name of a new doc in a nearby city that may be able to help with the c3-4 area. I honestly wouldn't mind the loss of mobility as like you said I already suffer from that. It's been so long it's second nature to turn my body when needed. And I'll see what he has to say. But back to this physiatrist, from what you said they are pain management docs that works with your pain meds & the therapy as well, correct?? How do you know when you've found a good one?? And after researching the b-complex it explains the tingling & numbness if its not coming from my neck. How long did it take for you to be totally fused?? I've read in some places that if you don't have the impingement problem fixed it could become permanant. Would you agree with that?? And if the bones are deteriorating & cartilage is going away should I be concerned with repeat x-rays & MRIs every 6-12 months? Do you think if perhaps with the therapy & the vitamins I may regain some of my life back? It just seems everything keeps going downhill so fast & it's scary. But it is good to know that my neck is not that bad - thank you forputting me at ease in regards to that! Like I said - so many diff docs=diff varying diagnosis but w/out explanations! I know I had more questions. But my fogginess makes me forget so much!! I'll need to write them down & ask later I guess. But please know you have been wonderful - I understand like I said with mental pictures & you've been a godsend in a world where I was beginning to believe that no one cared!! Thx for letting me write back to you & for being open to my questions! I can tell you're very strong woman & I hope I can be as brave! Thanks again.I am going to add my x-ray results to my thread as it's confusing too & i just received the report today. I honestly dont know which is better the x-rays or the MRIS!
    Hugs back, Heather

     
    Old 10-14-2011, 09:47 PM   #6
    heatherhobbie77
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    Re: MRI reports - please help!!

    Me again! LOL! I meant I'm seeking a physiatrist, but also the other you mentioned instead of a psychiatrist! Thought I'd clarify sinece my words come out a little strange sometimes! Also I remembered, my gp has me on lasix 40 mg a day as my arms & hands swell - most usually my left & sometimes despite the lasix. Does that make any sense? Do you know of anyone else this happens to? I tend to get dehydrated a lot & end up in ER. But have to take the lasix still. Was considering a pottasium vit as well. What's your thoughts on that??
    ThX!! =)
    Heather

     
    Old 10-15-2011, 09:09 AM   #7
    feelbad
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    Re: MRI reports - please help!!

    hi heather, tho i am STILL reading thru ALL of your posts here to fully get the whole pic, i needed to tell you something quick. if your doc actually has you on lasix, you NEED to also have to be in almost every case supplimental pottassium too. you DO become dehydrated from the constant peeing off of your water content in your body along with alot of potassium among other electrolytes as well. i would serously speak with your doc about this, SOON(it is usually a form of Rxed version of potassium and NOT the supps you buy at the store?). since you have what sounds like reoccuring dehydration here, tho you do also seem to have swelling, you are not taking in enough water to keep that very needed 'balance" where your hydration IS needed too.

    i am also wondering if your swelling is that bad enough to actually really truely 'need' to be ON a diruretic? and more importantly here, do they have ANY real clue as to why that swelling is even occuring at all? is this 'only' the upper extremitys without having any swelling like in the whole leg or at least the ankles?(i am really wondering if you do not actually have some type of real vascular issues/or vascular brain going on TOO considering some of your symptoms, and the mere fact that you DO happen to have odd spinal congential crap as well which can 'up' the chances of having 'other" CNS(the brain and spinal cord ARE our CNS as a whole) related congenital crappy stuff as well. been there myself actually. have they EVER done at least a contrasted MRI on your brain? i DO have a possible theory goin here that they DO need to do a contrasted MRI for to know, or rule out at least) when was the last time your doc did any labwork on you to make certain with this ongoing dehydration and no potassium sups if your lytes are okay AND your kidneys too? do they do this when you have been in the ER? if so, do you have copies of those ongoing labs? if not, get them so YOU have your own copies of each and every kind of test or scan that has ever been done on you from any facility. these ARE a big part of YOUR overall medical records and good for comparritives as well to just have.

    i WILL post here once i have gotten thru everything heather, K? just wanted you to know about the pretty standard need for potassium with diuretics. your doc should know this already, and also told you how to avoid dehydration as well, esp since it keeps on occuring. this can damage your kidneys, and generate other possible medical situations too over time. i unfortuently also have a kidney and liver disease as well as my spinal nightmares. you just DO need to know that everything else stays okay while we try and figure you out here. jenny is doing an amazing job tho for ya. i'll be back soon hon, marcia
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    Old 10-15-2011, 10:51 AM   #8
    jennybyc
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    Re: MRI reports - please help!!

    Hi again Heather......I know Feelbad very well and I think she may be on to something.

    Many of your symptoms that aren't explained by the neck, may be caused by bad medical care. Anyone on long term diuretics should be on potassium. I am.....40megs/day. If I tried to get that out of what they sell in the stores, I'd be taking 40 pills a day....you need the type the doctors prescribe. So what symptoms does low potassium cause...weakness..especially weak muscles, numbness, tingling...a lot of what you are having. I bet no one has bothered to do a potassium level.

    And guess what? Now that I know you are low on B12 as well, there is a disorder called subacute combined degeneration and it affects the spinal cord and brain and the symptoms exactly match yours except for the localized pain in your neck. It is treated with Vit B12 shots. Has your doc done a B12 level recently? I bet not.

    I am very suspicious that your docs are over looking the obvious and should be treating you with Vit.B12 and potassium and I bet most of your symptoms would go away. Instead, they think it's all in your head...that is why they aren't doing anything for you...they think it's all in your head.

    But I think it may be in your body and they are just not paying attention. Lasix with no potassium? Bad medical care. Stopping B12 shots and then you get neurological symptoms...even I know that is trouble and I'm not a doc or nurse or anything medical...but I do read.

    Let me list the symptoms of of subacute combined degeneration from the Merck Home Medical Manual:

    general feeling of weakness
    tingling and pins and needles in both hands and feet that gradually worsens
    limbs feel stiff and clumsy
    reflexes can be diminished(as yours are) or normal or enhanced
    vision may be reduced
    loss of sense of vibration or where the limbs are in space
    rapid emotional changes including irritability, apathy, drowsiness, suspicions, and confusion. Can advance to dementia

    Here's the symptoms of low potassium:

    muscle weakness
    cramping
    twitching
    can develop abnormal heart rhythms

    Put these 2 together and you have just about everything you've listed.

    Your spine clinic found the problem at C3-4 and the others have just been pacifying you and blowing you off...they did it to me too ...it's not unusual but very sad that they do this almost exclusively to women. A man with your symptoms would be treated differently.

    If I were you, I go find a new GP immediately and tell them what you are on and your history and what you suspect maybe wrong....and you can take this post with you.

    I had one spine doc tell me that I was fine and chalked my entire problem up to having a history of depression and PTSD....despite having a horrendous MRI. So I saw a second one and wasn't honest about my psych history and he got me into surgery as fast as he could. The first one just didn't want me as a patient but wouldn't say it so he told me nothing was wrong. I shudder to think what might have happened if I hadn't gotten angry and saw someone else. I might be paralyzed from the chin down by now.

    Both low potassium and low B12 can be deadly if not fixed(but you'll get really sick before that)but still, the docs are just not doing their jobs. You deserve better.

    hugs...........Jenny

     
    Old 10-15-2011, 09:49 PM   #9
    heatherhobbie77
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    Re: MRI reports - please help!!

    Marcia,
    Thanks so much for taking the ttime to help me - it is truely appreciated!! I am getting more info & answers from you & Jenny than any doc has ever offered! That says something about our healthcare system!! I
    As for the Lasix, yes, unfortunately I do have to have it daily. The swelling occurs in my calves & ankles as well. It's just generally worse in my left arm & hand. Without taking it, by evening I'm so swollen that it physically hurts a great deal (my skin streching I'm assuming). It started happening out of the blue in 2006. Has come & gone over the years now, but since this neck crap it continuous.
    As for the blood work, they did some back in March & none since. I've actually requested a full blood work-up as I'm worried aboutmy liver enzymes (from the EBV) & my mom says since my hair is now starting to fall out in large amounts, I need my thyroid tested as well. But it's interesting that you mentioned the kidneys. When this neck stuff came to say in late Feb. I started losing control of my bladder. And not the "oh, I've had three kids & if I sneeze I'm going to dribble". It was flat out, gushing down my legs. Sometimes even after having just gone to the bathroom. It was humiliating - I eventually had to wear adult diapers. I had come across in my research that the nerve impingement in my neck could cause my bladder control loss. But mom (a spine docs PA) & the other docs said that could not happen - they simply had to put that information out there to keep themselves safe. So I had a spark (a sling) surgery to help gain control back. But now I'm on my second bladder infection since the surgery & the docs (my gp & urologist) are having ******* fights as to who calls in what. Meanwhile here i sit, beginning to lose bladder control again.
    I have been in ER many times for dehydration - which i assumed it was the lasix - but they never really said. Just pumped me full of fluids & sent me on my way. The last time I was told to eat bannannas & kiwi. But noone seems worried aabout it or ever did any lab work for it. And no, they havent figured out whats causing the swelling - just said here take this. I'll be in my docs office on Mon. (not for an appt tho) so I think I'll pretty much demand a full work-up.
    As for the brain MRI - they did one w/out contrast as I went into anaphalctic shock after receiving contrasr dye for an abdomen CT scan. They told me the reading might not be as clear as they would like. But told me it was ok. But that confuses me because in 2006 I had an MRI & they found a blocked basal artery at the base of my neck & nothing was ever done about it. So it still worries me!
    Thx again!
    heather

     
    Old 10-16-2011, 08:26 AM   #10
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    Re: MRI reports - please help!!

    BINGO!!!!!!!, a BLOCKED basiliar artery and they have done NOTHING??? you do NEED an MRA done and if you like me cannot take contrast, you can get the MRA that totally would show just how your arteries are at this point, and/or can also obtain what is called a" 3T or 3 tesla scan" as well. this is what i had to do when my NS who did my cord surgery "suspectected" an aneurysm that i DID have in my superior cerebellar artery which branches off of that MAJOR basilar artery.

    you have had jens spinal anatomy lesson, now i will give you a quickie blood flow lesson heather. we have two major arteries that run from 'around" the c 6 level and enter the outter spinal column thru tiny holes twords the ends of those vertebral bones. you do have two, a right one and a left one that go up into the brain and MEET AT that basilar artery that then both become one to THAT major artery to the brain, and THAT is where the beginning of your basilar starts, after the vertebrals meet to create it above themselves.. depending upon what IS blocking THAT artery and how badly could also explain some of your ongoing symptoms, ESP your bizzarre headaches.
    i had just a superior branch right where that cerebellar kinda starts where there is a bend in an artery but FROM that basilar and i had a seriously really 'off" feeling come and go over time along with just insane heat flushes that would start at the very top of my head then 'flush' down into my c spine and gone. but i STILL had some good bloodflow too since what i had ballooned out from the artery and did not actually BLOCK an artery(also NOT a major one either), but with absolutetly NO actual headpain of any kind. never had a headache, but what YOU have is within the major artery that feeds the back of your brain on up to what is called the 'circle of willis" or "COW". this is what is kind of a 'crown' of all major arerteries that sit at the more top of the inside of the brain. if that whole artery is being blocked off, the blood simply is FORCED by having no other way to get to the cow, to bypass and add ALOT of pressure to an already highly pressureized type of major bloodflow to that cow, which truely IS in the shape of a circle. this little circle probably is the ONLY reason you have NOT actually had a major 'event' since it can reroute blood to compensate for your blocked basiliar. but depending upon exactly where within your basiliar that blockage is and if fully blocked would dictate alot, and also place ALOT of real pressure on whatever that blockage is, before reroute takes place just from very high pressure in the major arteries of the brain. this can create its own issues too like aneurysm(just letting you know this is a possible thats all) from constant "slamming of high pressure bloodflow aginst the arterial walls before it shifts out sideways FROM the blocked area and too the other side branches.

    that numbness in your face along with at the very least here, your headpain could easily be being generated by what comes with THAT type of artery being blocked as well. the bigger arteries feed the smaller ones too, like to your face, OR this 'blockage also could be impacting the facial(cranial) nerves as well. there just are usually ONLY two real basic things that CAN create a true sense of 'numbness' anywhere in our bodies. and those two things are lack of good bloodflow to anywhere, AND/OR nerve damage/compression. whatever else is going on, it almost always would come down to those two very basic things that CAN create any loss of sensory/numbing to a body area. either ONE or even possibly a bit of both just 'could" very much BE the 'numbing generator(s)" in your L facial area, and would really NOT have much to do with the actual spinal aspect so much. while that CNS is all interconnected it still is two seperate areas that just 'do' what they do. one part interprets signals fed to it as in the brain, and the other carries those signals to all the high brain function areas as in thru that spinal cord(like the superhighway to the brain and back)where the interpreting gets done then it sends the signals back to the 'right place" that triggers whatever function is needed, then carried out by response. anything that is possible to either block the signal functions or the actual bloodflow within these key areas WILL generate symptoms of some form letting us know that 'something' is simply not working as it should, and that includes pain as well.

    when you also factor in your congenital CSF flow issues due to the sac being too small, that TOO can create not only spinal issues but brain too since that dura also surrounds the brain and the spinal in one very long contained 'sac". there is a very regulated replenshing that also goes on within the brain with regards to our CSF as well. if the CSF is not 'flowing' right, that too can generate headpain. every like 4-6 seconds the brain generates new CSF. so if there is any impairment of that natural ebb and flow of it as it gets formed, sent down right thru the neck still thru dura then along one side of the spinal cord to that sacral area wayy down in the lowest of the 'back' area, then it comes back up the other side to the brain again, it could also create even MORE surrounding the brain type of pressure too which could also be a part of or also one reason at least, among the other possible of generating headpain. our CSF also has to pretty much remain at a very constant level of its own 'pressure too or problems will occur. the most common is headpain, which also could be from mild to severe depending.. so you just DO have two really solid "possible" triggers/generators of your headache issues too(but i AM leaning towards that basilar being blocked). your C 3-4 level just could be impairing that flow there too. i also just happen to be dealing with that very same level you are now actually into my cord as well. i really have no clue if it is heavily impairing or just a little. but i do now get head 'stabs" of pain like out of the blue i did not have before or just an aching usually only on one side of my head.

    did the report or ANY actual doc ever tell you just what that 'blockage' consisted of? is this a form of congenital malformation such as an AVM or any other "type" of possible vascular malformation that just IS possible to even be born with(like i mentioned above, any congenital crap CAN also be in other places as well)? i had a vasc malf in my actual cord at the c 8 level that i did not even have a clue was there til i (thankfully) herniated my c 6 7 and was forced by symptoms to finally get a good look at my c spine with an MRI. never knew anything was "inside" my cord BUT cord, til that one very revealing MRI just showed this high signal intensity 'glob'(it was a 4x6x8mms sized lesion) of what was stated in my MRI as whats called 'AVM(arteriovenous malformation, and very high arterially fed pressure) but it was MANY months after when i FINALLY could get in to even see ANY actual NS that he ordered a very much needed angiogram done that it did not 'light up' the glob with the dye that we knew it was a venous fed lesion and thank god not the arterial fed AVM. but it still had bled at least once pre Dx, so i ended up getting it resected back in 03 up at the U of MN here which thankfully IS close by, by like the ONLY flippin NS who actually could tell me EXACTLY what these little suckers were and could do to me(the other two NSs i saw had had totally opposing opinions but did NOT really 'get" these things either. simply NOT ENOUGH actual experience) and he also had over thrity years of experience dealing with these little suckers(this NS was the head of NS at the U). if it was left in, i and it bled one more time, i would have become paralyzed from that bleed from the chest on down if we had not gotten it out. it was just taking up soo much of my cordspace that the 3mms i had left would have closed off my entire cord with the engorgement then bleed. it was 'an active bleeder' which none of the two NSs had ever "bothered" to even tell me either. but i paid a huge price which i am dealing with right now with pretty messed up spinal cord damage. but i still think i did the best possible thing for me.

    if you simply cannot have the contrast then see about getting those two scans that i had that do not require contrast to simply 'see' within your brain as a whole with the 3 tesla scan(this magnet they use just goes into our bodies at three times the depth of a 'plain" MRI so it CAN see things without contrast), and also the MRA which even without contrast simply WILL show the arteries really well. my aneurysm did NOT show up on only a plain MRI i had had done only about a month before on my brain, but DID, even tho it was thankfully still pretty small, on that tesla AND the MRA since that MRA takes everything else BUT the arteries out of the picture. so they simply CAN better see the arteries as a whole MUCH much more clearly. this is an absolute NEED heather. you HAVE TO find out just what is going on with that blockage, esp since it was already Dxed years ago? that basiliar is just such a high pressure area that is in the kind of the back of your head on up area(those vertebrals up to basilar feed the hind brain, or posterior while the carotids feed the front or anterioer brain)? this seriously 'should have' been looked into MUCH more in depth when it was originally found heather and i cannot believe they simply let this go on you at all. having years go by could also unfortuently have created a much more complicated issue up there as i said above, with that slamming of right where two other major spinal arteries meet at to create that basilar one at all? luckily all of our arteries only, but not the low pressure veins have three pretty strong layers or walls within them. so even if there is/was some bulging out from what simply 'is' the norm flow up there, there ARE little 'safety backups' up there too. which includes that COW and the ability the brain has to reroute blood when a particular area gets blocked. but it can only compensate that higher pressure for so long before intervention IS a NEED to fix what is ever blocking up there too.

    this is usually done all from within the actual arteries by what is called an "interventional neuroradiologist"(it truely IS amazing in what these types os specialists can even do from just within just arteries alone). they go in thru the femoral artry in the groin and run all the little microtools up thru the arteries to where your problem is located. this is how my neuro rad coiled my annie too, all from starting in that femoral artery on up to it. but how this all can even be fixed or cleared is kind of up to just what that actual 'blockage' is from itself. if you actually have that report that mentions that basilar blockage, could you post what it stated about that area and the actual 'blocking of' that artery? word for word from that report directly is the best way for us to see it since the way any interpretting rad simply states things including any specific terms used really DOES matter.

    as far as the actual swelling goes heather, i really do think it could be one of two possibles here, but i am NOT in any way a doc. you just could have some level of sympathetic nervous system impact going on since our symp nerovus systems just also DO not only run thru the length of pretty much the full spinal cord in a 'chain" that goes in and out of the spinal cord at every single level. it also runs inside the neck area(the stellate ganglion OF the SNS also sits on both sides of the neck kind of up against that trachea) too that stays inside til it gets down to that c 8 level where it THEN starts that chaining downward. this just 'could' possibly be impacted in certain areas considering all you have going on. the other would have do do more with like a 'backflow pressure" within the arteries that feed the arms, or the flow not being able to simply go thru the full arterial structures in the normal ways because of your brain blockage in that major artery just 'being there' at all kinda thing? so the 'back pressure it would kind of generate COULD be forcing the water/fluid out of your blood vessels, hence that swelling you have going on. do you get what i mean? do you have ANY level of above normal higher blood pressure going on? if you just DO have significant swelling tho at the time they just 'do' your pressure attempts, it can in some cases kind of mess up the 'true' number readings since you just would have to really sqeeze down ALOT of fluid with that BP cuff to even GET to the artery to GET a proper read in the first place. but alot would depend on how your swelling just IS when they do that BP on you too. it just CAN skew the reads the cuff/sphyg(the thing that simply shows your numbers) is trying to get when there is no real place for all that fluid to go to have a nice 'clear' artery to read from. but that swelling IS tired to your vascular situation i think. the thing is,and whay i even mentioned the sympathetic nervous system here is that that IS what simply governs the dilation and constriction of all of the blood vessels too. so there just 'could' be a tie in too. and with losing your hair? that too is possible when you have symp impact which i also have ended up with too when they also damaged my sympathetic right at where it comes out of the cord to form that chain during my spinal cord globby resection among other damage. and i have lost a TON of my hair since the SNS also does govern our hair and nail growth too. so you just DO have "some' things that are possible from SNS being "impacted' in some potential way here too. do you have ANY really odd sweating at all going on? i only ask since the SNS also does govern how we sweat as well.

    just some stuff that you really DO need to know up there heather. i would seriously tho, ask your current primary or if you are seeking out another, to do that quickly and get that brain rescanned using what i mentioned above that CAN still see any arteries very clearly here and not have to use contrast. but you will eventually need to have an angiogram done as well at some point too. i am not too certain, but i DO think they have a different "type" of dye they can use that you would NOT react to too. i am sure they ahve run up against this before and have alternatives. but this one blocked area up there that you have just could also be generating so many of your particular symptoms right now hon. and it NEEDS a new look at just to see what you have there now since yaers have passed since dx took place. someone DID drop the ball on you here in soo many different ways heather. did you own mother not see the need for SOME level of interventuion when she was into all your private business when you went to that uni? a blocked major artery in our brains just IS a big deal hon. hopefully they can get this unblocked, by possibly a stent or some other things they use for particular issues within arteries. then it will be interesting to see just what symptoms go and what stay. but i WOULD make this arterial blockage my main priority right now since this IS a 'life threat" issue for you right now. if that basliar was not such a major artery in on up to the whole cow of the brain it would not be as impactful, but it IS just carrying alot of pressure that is not going thru the 'exact' and normal route, but having to hit it, and with the overall pressure of those two vertebrals into that one single artery and then bypass thru the other arteries to the cow. alot of what can be done depends upon exactly where that artery is blocked and by what specifically that just CAN also be congenital in even how your particular vascular structures were initially formed in utero too. it would NOT suprise me at all given the congenital crap i ended up with which includes my liver and kidney disease which the kidney disease set off my glob(a lovely birthmark in the middle of my cord) and eventually my annie too. go figure.. but get this looked at asap hon. i am sooo glad you mentioned this to us as it seriously is so very important and critical to now have looked at and intervened upon by the people who know arteries the best. good luck 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.

    Last edited by feelbad; 10-17-2011 at 07:15 AM.

     
    Old 10-16-2011, 12:23 PM   #11
    heatherhobbie77
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    Re: MRI reports - please help!!

    Marcia & jenny,
    Hi! I dont know what i'd do w/out you two! i truely believe that you are saving my life!!

    A quick background on my mother (so you know why a mom whos a PA isnt concerned). We dont get along at - never have - too much emotional, physical & neglectful abuse that I simply can't seem to forgive her for. she as well blames me for her"****** life" because she got preganant w'me at 18 & "had" to marry my daddy(the greatest man in the whole world)!! They divorced when i was 11 & she can not forgive me for maintaining a relationship w/him. a good, healthy one!! my mother has health issues as well, always has had - but NO ONE is ever as bad as or worse off than her - she simply cannot tolerate anyone else being sick for fear they'll tak eaway her "spotlight". I have 4 siblings tho & shes been at every one of their sides anytime theyve been sick or hurt. she took off 2 weeks a& flew to cali for my sisters botfriens surgery. Bu twhen i was in the hospital for a week in jan (in the same town as her) she didnt even visit once. She also happens to be my gp best friend. so that swhat im battling against. i'm sure you've read what havoc she wrecked at the univ.
    Anyway, no one has ever done a pott level test on me before. Noones ever seemed concerned about my swelling or my dehydration issues. And on that issue - when you mentioned unusual sweating - my head went "ding-ding". for a year & a half i've been battling SEVERE hot flashes. They tried to tell me it was clinical menopause. But this NO ordinary sweating. I was a stylist & I would litterally fo outside in the snow in winter in a tank top to cool off. It felt awesome to be outside in capris & a tank in 20 degree weather. Needless to say, i never wore a winter coat! but the sweating is humiliating - I've had people ask me if i just ran a marathon - it litterally pours off my hair & face. I no longer really go anywhere anymore as i cant do my hair or make-up with out looking like i just came out of pool. I didnt even get to go help my daughter pick out her wedding dress because by the time we reached the end of the driveway, she was already too worried about my sweating. so i stayed home. i blieve this also contributes to my dehydration. Ive gone into my docs office sweating like that & he'd just crinkle up his nose & shake his head.
    As for the blocked artery - i was actually seeing a different gp then because i was working in that city. He was very anxious & worried about it & sent me to see a ns. the first was in st. louis - my step-dad took me. but because of weather & traffic (which one has no conreol over) we were 10 minutes late & they refused to see me. Told me they'd reschedule. My dad got angry & told them if i ended up harmed from not seeing the doc he was going to sue. they then escorted us out of the building. next ns was again 2hrs away. he hardly swoke any english & just wanted to do carpal tunnell surgery on me (never been dx w/this). so when i pushed the blocked artery issue he just told me to watch for signs of stroke. i didn't go back. they found me a 3rd., but by that time my mother convinced my step-dad that it wasnt something that could be fixed - that capillaries would branch off & id be ok. that if they tried to fix it it would shove a clot into my brain & kill me. So w/out anyone to take me & me being a single mom & having crappy insurance & my hours at work, it was just dropped. When i switched back to my currrent gp toold him & the nurse about the blockage - they were appalled that nothing had been done, that it coul dne fixed. But they are now brushing that off too.
    I am seeing my gp on the 31th & im goign to demand a full blood work up & for the other brain tests you mentioned - as well as asking about the pott. i'm also going to set up an appt w/my previous gp as he liked to found out the whys of things & didnt just keep pushing pills on me! and then treat me like a drug addict whose crazy to boot!!! My mom told me that unfortunately in the medical community because of the meds I take i will always be labeled as crazt & a druggie.
    a couple questions if thats ok?
    What do you mean by "really sick" in regards to the low pot & low b-12?? Because i am getting worse & weaker every week. I acyually thought of going to er today as i have a head & chest cold & it feels like all my bones are broken & pirahna are eating my muscles!!
    Obviously the blockage is top priority, but is it unsafe to wait til the 31th to talk to my gp?? And what is an MRA?? They did a brain MRI but since we couldn't use contrast dye he said it wouldn't be an acurate reading neccissarily. He was only looking for MS tho.
    And is the c3-4 issue one I should tackle right away also?? i've since found another gp in Jeff that'll help me.
    I'm sure im forgetting things - which reminds me - would any of this account for the mental fogginess, memory loss & confusion??
    again ladies, you are truly amazing & wonderful people!! thank you so much fo rhelping me find answers
    lots & lots of hugs - heather

     
    Old 10-16-2011, 11:37 PM   #12
    heatherhobbie77
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    Re: MRI reports - please help!!

    Hi again ladies! I'm totally freaking out here - been researching the blocked basilar artery & I'm seeing over & and over again things like - stroke, mim-strokes, 70% mortality rate. Im going to try to call my gp in the morning. unfortubately tho his new offfice staff does not relay messages. Sometimes i'll hear back & it's been over a week. I'm really really scared = sitting here with my numb face!!! What would you do in my position??? go to er or **** off the doc by demanding to talk to him?? =(

     
    Old 10-17-2011, 09:18 AM   #13
    feelbad
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    Re: MRI reports - please help!!

    i would take the chance of ******* off the whole docs staff since they simply are NOT at all even doing their own jobs right in not relaying any actual messeges when needed to the doc. just the mere fact that YOU feel you NEED to speak to your doc about this ASAP is enough to keep on calling UNTIL you can speak with him about at the very least, just sending you or referring you to a facility that does the MRA(any facility that simply even does MRIs tho CAN also do that MRA) and possibly the 3 T scans too(he CAN refer you right over the phone to this). when i had MY T scan, there were not alot of these types of scanners out there, but that was back in 05 too. i am sure most rad facilitys have at least one by now. but just obtaining that one MRA, even without contrast will ONLY show/highlight arteries ONLY and THIS IS what is needed most. nothing else is on that film BUT arteries of your brain when done. this would show that area soooo much better/clearer than what showed up on that plain MRI by far. i really am amazed that THAT even DID show itself upon a plain MRI back then only because of alll the other crap that simply IS the brain is always going to show too with MRI? the fact that they could even see this blockage at all is what kind of 'ups' the need to get as full and clear pics of this now too, tho that basililar IS a rather large artery and much easier to simply see than some others. you just need to know what this blockage consists of so they can figure out what to do to try and help clear it. since it IS a monday tho and things are ALWAYS a bit backed up and crazy in all clinics on mondays, i would cut him some slack today if you do not hear back, but if nothing tomorrow, then i WOULD be calling til you simply DO hear back from him. that MRA tho IS what truely is needed to have now, that 3 T would simply show the REST of your brain structures better without using a contrst agent than any type of MRI would. that IS a secondary thing tho. that MRA is tops for you to have done first no matter what.

    i really don't know alot about that B12 thing tho, that is something jen will have to answersorry. i did try the B complex thing way back after my cord surgery just to see if it would help with two nasty pain syndromes i ended up with from that stupid surgery that in no way shape or form respond to ANY level of narcotic therepys or other meds we have tried. but i could not handle that smell the Bs just have after a while? hopefully they have changed or somehow encasulated the B complex by now to rid THAT part. esp since i want to try them again, but man they smell odd.

    ya know, as far as your mom rushing to her daughters BOYFREINDS side with his surgery and not yours goes?? i would not be too offended or take that too personally hon. given what you have stated about the attention seeker she just IS at all, she did NOT go there out of love or even caring at all. she went there in order TO BE the amazing wonderfully knowledgable PA she just feels she is. it was a HUGE boost to her own ego and nothing more i am willing to bet, THAT IS why she even bothered at all. i mean seriously??the 'boyfreind and NOT your sisters surgery, hello? i am sure she just a swooped on in there and explained like everything under the sun to all these scared people(your sister, BF and probably his family as well? a whloe "audiance" waiting to 'hear HER") who simply 'needed her expertise and amazing experience" in this area. it was simply a 'perfect" opportunity for someone like she is to BE 'THE" one and only person everyone would of course listen to and wonder at all her 'knowledge". you already have been thru THAT crap so she really cannot "impress' you, ya know? for anyone who just so loves to be the center of attention, boy THAT was a perfect one for her. so try not to take THAT too personally heather. she sounds sooo flippin toxic tho. and also not only did she sabotage your health here and screw up everything at the 'perfect" type of place that i was going to tell you to go to, a uni teaching hosp, but she BLEW AWAY and soo completely violated your HIPPA rights. there just IS a dam good reason why HIPPA came in to be, and this type of situation IS one of the bigger reasons to even exist. god what a sick thing to do to your own child heather. i DO feel for you. thank god for your daughters tho. they DO sound like very loving and caring young women.

    hopefully your current or the other doc you mentioned that you said was good will help you here in just getting that MRA rolling to see whats up with that arterial blockage. the next step after that would more than likely involve seeing the interventional neuro rad for an eval of whatever this turns out to be. just work on that scan hon. i gotta get moving here to an appt, lovely. just keep hangin in there heather, you DO have people here to try and help you with all of this. 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 10-17-2011, 09:55 AM   #14
    heatherhobbie77
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    Re: MRI reports - please help!!

    Marcia,
    Not be a creeper or anything (my girls tease each other about being creepers!!LOL!), but i consider you a friend - i truly feel you care about people & you are helping me so much!!
    You are right on about my mother! I had never thought of it that way, even though she had told me she was going to make sure the surgeons did their job right. And now she is best friends with this parents (who live in our town) & they are in complete awe of my mother! Blech!!! I know she is toxic in my life, but i've always struggled with needing her approval - even at my age! But i have figured out that i don't need that any longer & have told her i will never discuss my health with her again. I was actually told that I should file a complaint of violated hippa law at the univ., but that would be a last resort for me.
    I did have my doc paged this am, because his staff is telling me he's writing these 'notes" stating that he would not treat me for my UTI - wanted me to go thru my surgeon (had Spark on 7-26) & that he refused to refill my meds. It all sounded off & I knoiw his nurse has been reprimanmded once before for over=stepping her boundaries (she's an LPN) in which she trys to treat the patient & screens his messages (& now apparantly writes notes for him). He did call back & was very upset & concerned with what was goign on. He said he would never not have treated me for a UTI as he knows my history beter than anyone! I told him his staff refused to even let me give a urine sample for culture - they told me m surgoen had to fax over an order for that!! (really??? I think they think I'm stupid!). Anyway, he's taking care of the UTI & he said he'd pull my file & get my lab work ordered & try to get me an MRA - he felt I needed them as well & was very angry that I havent been allowed to see him or talk to him since July! I do believe he may get new staff!! So hopefully, thx to you, Jenny & my still caring doc, I will finally get the right answers!!
    I just can't express how much I appreciate all your time, thoughts & suggestions you & Jenny have given me! You are amazing women & I can only hope that one day when I'm in a position to do so, I can help others as you've helped me!
    And thx again for the pep talk about my mother - it's a totally unhealthy relationship & I'm going to take my other families advice & seek therapy to truly be free of her hold on me. It helps to know others can see her for who she is & I'm not crazy!!
    Thx again both of you!! hugs & more hugs! will post after my tests & let you know what comes out of it!!
    XXOO Heather

     
    Old 10-17-2011, 10:04 AM   #15
    heatherhobbie77
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    Re: MRI reports - please help!!

    P.S - I do have AMAZING daughters - thx for saying so!! They are so beautiful & talented & all four of us ahve always been super close - so much so that the girls's friends are taken aback when we all hug, kiss each other & proudly say "I love you" in public. I've taught them not to be ashamed of loving each other & we all 4 have such a support system! I thank God for my girls every morning & again when I go to sleep - I'm a specially lucky momma & one day soon a very proud Nana!!
    Heather

     
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