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  • Neuropathic pain spreading to other areas of my body...

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    Old 12-29-2009, 02:41 PM   #1
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    Neuropathic pain spreading to other areas of my body...

    I have had neuropathic pain in my left lower back and leg since 1996 from an accident and subsequent surgeries (i am not blaming the surgeries by any means). Flare ups have been fierce and often. I have taken neurontin (blacked out) lyrica (heard voices) as well as many other meds and opiates.
    Last year (2008) I found out through an ultrasound that I was having a miscarriage and had a 5 cm ovarian cyst. I had intense pain and severe bleeding but was told not to worry about the cyst and they would monitor the miscarriage and if possible allow it to terminate naturally.
    Fastforward through this past year with severe pain, 3 surgeries to remove more (functional) ovarian cysts. I also switched providers and feel like I am in better care regarding my chronic pain (obviously I have more pain than most others would with the same diagnosis).
    Anyway, this past November (2009) I had yet another cyst removed and my OB looked around and found a rather small adhesion on the opposite side of where the cyst was located. After the surgery, the pain became more and more intense and then on Thanksgiving I began vomiting several times per day. I ended up in the Urgent Care and E.R. about 3 times in 2 1/2 weeks to be treated for severe dehydration, and given anti nausea meds and pain meds. I had a CT with and without contrast, abdominal x-ray to rule out an obstruction, several ultrasounds and tons of blood and urine tests. Nothing remarkable. Yet the pain and vomiting continued with intensity. internist decides that it is post-op nerve pain. She said that I am already a chronic pain patient and would be susceptible to it. Apparently 20 % of post op patients experience this.... OK BUT FOR HOW LONG??? This is going on for over 4 weeks now. My pain management agrees with the diagnosis however is frustrated with how long it is taking....
    So, now in addition to the vomiting I woke up around 1:00 am on Saturday (not that this is atypical, if I do not take anti nausea meds around the clock, I will vomit. But when I woke up Saturday morning BOTH of my legs are killing me. Nerve pain- feels like a hot knife being dragged down BOTH of my legs. It actually starts in my lower abdomen (both sides) and continues down into my feet. My legs are COLD and hurt to the touch - sting is a better word I guess. It is even more difficult for my 2 year old who loves to cllmb on me.
    Now I know the number one question: why not go on Topamax (always has worked for me) or another simillar med? Here is the crazy answer: my husband and I want another baby. I KNOW. crazy. My first pregnancy wasn't easy, but we got through it with a healthy baby boy. This is the first month since my son was born that I have had a normal hopefully we can get pregnant soon...enjoy the pregnancy and then we can come up with a long term solution.
    My biggest problem is getting the pain under control now, so i do not vomit and then become dehydrated. Docs have said that it is dangerous for me to become dehydrated again. But I cannot always keep down the pain pills, which causes more severe pain which leads to dehydration. Now I have this new heinous leg pain and I have so many bad experiences in the ER that I do not want to go there if I can help it. However, if it happens during off hours what can I do??? I almost feel as if I need to be admitted and get on top of all these symptoms (I know that they cannot fix me, though wouldnt that be great?) But I feel like they send me home on the verge of being JUST hydrated and ok with the nausea and all it takes is one clink in the armor and I'm back to where I was....
    any suggestions?
    sorry this is so just so frustrated, in so much pain and nauseas

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    Old 12-31-2009, 09:27 AM   #2
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    Re: Neuropathic pain spreading to other areas of my body...

    so sorry for the nightmare you have had to endure and the loss of the child as well. unfortuently i too went thru THAT little nightmare myself, twice.

    what i am wondering about here seriously is that continuous non stop vomiting you have going on? have they EVER actualy checked out what would be the very basis of the "vomiting center" within your brain and followed that vagus nerve down from it to just see if it is actually being impacted in some strange way?(it is a very very long and winding nerve also called the "wandering" nerve since it goes from the brain on down into the abdominal viscera too?) it would just make pretty common sense to simply start right at the true base within the vomiting center within the brain, ya know what i mean? that just does not sound at all the least bit 'normal' with anything you have mentioned that took place over time with this? trust me here when i say that when most docs simply really do not fully understand why something is actually going on within any patients body, they will try and look for the 'easier' answers to try and explain it away without bothering to really deeply look into ALL potential possibles for any given symptom.

    in YOUR particular case, 'something' is most definitely triggering/stimulating the vomiting and the vomiting center within your brain(either directly or something IS sending very real signals to it) for it to be a non stop and continuous type of situation. it just needs some further exploration to just see what may be impacting that vagus nerve too. at the very LEAST here a good contrasted brain MRI just may help alot to shed some light on what may be the underlying reason for this crazy off the wall type of symptom with no real clear explanation?

    it just does not sound 'right' in what they told you was actually behind this espescially if they have never actually fully evaluated ALL possibles BEFORE simply 'settling' on this particular 'idea", or theory? if i were you i would most definitely be pushing for further testing of the right places before settling for what you were told. i am in no way saying that what you were told may not be a possible reason, but without actually checking out all possibles, it would be just a bit presumptuous on their part to label this as something when all factors and possible reasons simply have yet to be checked and ruled out FIRST. thats all i am trying to get across here in a very long way, sorry. 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 12-31-2009, 01:29 PM   #3
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    Re: Neuropathic pain spreading to other areas of my body...

    Just another possibility that might be causing the nausea. By chance do you get symptoms of vertigo (dizziness, loss of balance, etc.)? It wouldn't hurt to have your PCP check you for an inner ear problem. It could be something as simple as a sinus infection or ear infection. If you have any type of dizzyness or motion sickness be sure to tell the doctor. Most causes of this are easily cured or at least treated.


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