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    Old 01-08-2016, 11:02 AM   #1
    Louluk's Avatar
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    Brain cystic lesion/tumor

    I hope this is OK to post. I'm new to this group and I'm not sure I totally belong here because I don't actually know what is wrong with me. I only recently found that I have a brain cystic lesion / tumor. Here are some of my symptoms that prompted me to seek medical help. Some symptoms have been present for years and some more recent, I'm not sure what is related and what isn't but I'll list them all.

    *lasting enlarged lymph nodes in my neck that have been present for around 7 weeks now.
    *sudden painful headaches that I'd assumed were due to my adhd medication (vyvance).
    *Neck pain and pain in my left shoulder for many years.
    *always feeling unwell, especially around my period and ovulation.
    *chronic sore throat and sinus problems
    pain in cheek bones ).
    *Jaw pain and jaw clicking (gp thinks possible tmj )
    *temple pain that seemes to get worse when reading.
    * head sensitivity ( haven't been able to were a ponytail for around 2 years due to extreme pain)
    *Eye pain, I thought this might be strained eyes from being on my cell phone to much.
    *fuzzy sounds in left ear. I haven't had a hearing test but I'm pretty sure that my hearing is reduced on the left side.
    * dizziness (especially when standing)
    *Tingling sensation in face
    *chronic ear pain and ear itching for years (but keep getting told no infection)
    * short term memory loss (forgetting what I'm saying mid conversation, loosing my train of thought and difficulty finding the right words) I was told I have adhd and put on medication 3 months ago.
    *On and of pain across my upper chest that radiates into my back between the shoulder blades, feels like possibly muscle strain? I haven't been diagnosed but the pain seems to match the symptoms of Costochondritis (clear chest X-ray )
    Abdominal pain with indigestion, acid reflux, heart burn. ( doctors told me this was Gerd, they also thought that this was the course of my chest pain but I sometimes get the chest pain when no reflux symptoms are present.
    *Recently I woke with lower back pain on my left side that radiated down the back of my left leg, it hurt more when standing on my tip toes, all the muscles in the back of my leg felt tight, this lasted 4 days and went away, however the muscle pain in my legs comes and goes.
    * I have severe pain in my groin area when walking to much, even cleaning the house sets it of.

    I've Been to my Gp many times over the past year, she suspected some kind of autoimmune disease but all my blood work keeps coming back normal ( except high gloucouse of 125) she told me I was pre diabetic but no further testing was done.

    I demanded to see a Ent after a year of being no answers from gp. Ent sent me for a CT scan, When I went back to him for results he told me that the lymph nodes in my neck did show some enlargement but he believes that is due to a sinus issue, he told me I have Pharyngitis and gave me antibiotics to take for 30 days.
    He then casually told me that a cyst/ tumor was found on my brain and the CT report said "cannot rule out cancer" he didn't seem to concerned at all.
    He didn't give me much information, he didn't tell me the location or size and I was too shocked to ask, he just said he was referring me to a neurologist. 2 weeks later (December 30 2015) I hadn't heard anything, so I called the ENT to make sure the referal had been sent, his nurse contacted me later and assured me that the referal had been sent but seen as it's the holidays things could take time. Whilst I was on the phone I asked her if she could provide me information regarding size and location of the cyst / tumor. She was reading the report out load and I was jotting down what I could. It said " left side ambient cistern cystic lesion possible tumor 18mm / 16mm. The neurologist office called me later that day to scedual a appointment, they said that the soonest appointment they have available is March 16th. I called around to see if anyone else could see me sooner And I was able to find someone who could see me on February 3rd.

    Since getting my CT scan results around 3 weeks ago, I haven't seen anyone in regards to the tumor, all I know is the location and size do far.

    Yesterday I had a headache and stiff neck that was so severe, I took myself to the er and I was hoping that they would give me a MRI or at the very least repeat the CT scan to see if there had been any growth. They didn't do any of that, I was told that the pain I was experiencing was from a tension headache and inflammation in the back of my head/ neck. I was prescribed robaxin 750 mg and naproxen 500 mg and sent on my way.

    Now I have to sit back and wait to see the neurologist on February 3rd. This is all driving me crazy.

    I also have bruising on my cheek close the my ear, I've shown this to my Ent and the er doctor, none of them seemed concerned and didn't pay it much attention. I'm thinking that it must be related?

    Had anyone else had similar symptoms?

    It was suggested to me in another group that vyvance may be causing some of my symptoms, my doctor already rulled out a link because my symptoms have been present since way before I started taking vyvance. I'm No longer taking Vyvance since before Christmas because I'm starting to think that I don't even have adhd. I believe that my adhd symptoms or linked to this growth in my head. I'm going to talk to my therapist about it today.

    Last edited by Louluk; 01-08-2016 at 11:15 AM. Reason: No longer taking Vyvance since before Christmas.

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    Old 01-09-2016, 08:52 AM   #2
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    Re: Brain cystic lesion/tumor

    Wow, you have a lot going on and I would imagine are scared and upset that this brain lesion hasn't gotten more priority. I wonder why the ENT sent you to a neurologist (medically oriented) rather than a neurosurgeon for a brain tumor this size that seems to be causing symptoms. You might ask about this. I would agree with PCP that some of your symptoms sound like a possible autoimmune disorder, and for those, you need to see a rheumatologist. Since you have gotten no answers with her workup, you may need a more extensive workup from a specialist to pin down what is going on autoimmune wise. I doubt the brain lesion is related to the AI issue, but AI disorders can cause enlarged lymph nodes, and those neck nodes may be related to that OR the brain cyst/tumor. That needs investigated, so I think PCP should refer you to a rheum. You are going through a lot, and should have someone advocating to get you in to see the specialists soon, not having to wait a month, especially if you need to see a neurosurgeon, not a neurologist, and then have to wait again. I would call everyday for a cancellation spot if one occurs to get in sooner.

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