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Migraines/Dizziness/Eye Movement after surgery

Posted , 5 users are following.

desrose
desrose

Has anyone experienced migraines and dizziness a couple years after surgery?  There is also an involuntary eye movement of both eyes looking up to the left.  MRI has been done, there are no signs of another tumor. ENT suggested a neurologist, but I'm thinking this has more to do with Cholesteatoma.

0 likes, 5 replies

5 Replies

  • Carcosmo
    Carcosmo desrose

    Posted

    Hey there, I see it's been 3 months since ur post have u found out anything new?  I have the same symptoms as u. I have had 2 surgeries now to remove cholesteatomas and I'm 100% sure its the cause of all my problems. I'm now seeing a neurologist who specializes in migraines because I was told by the ENT that my migraines were a separate issue. Even tho they didn't start until we found the second cholesteatoma and they just never went away even after it was removed again. (How can it not be related??) I'm getting Botox injections every 3 months which are so expensive even with insurance and I still have migraines. I'm dizzy ALL the time and my eyes do weird stuff too. Especially if I look around too quickly or I'm driving. I went to an eye dr who said my vision was fine but the blood vessles behind my eyes are a total mess. He said it looks like either I've had severe migraines from childhood or I'm a 70 yr old woman with extremely high blood pressure.. Neither apply. I'm 37 and just started having migraines the last 2 years. I think I must have some nerve damage or they didn't fully remove the cholesteatoma or its growing back ughh idk. And no one else seems to either. My last MRI showed nothing either. My quality of life is totally dependent on how I feel every day and it's so hard. Nice to see I'm not alone but it also makes me think they must see this with other patients as well why is there no solution?  
    • statebryan
      statebryan Carcosmo

      Posted

      Hi Carcosmo,

      Sorry to hear you're enduring all of your symptoms. I can definitely relate.

      Have you had any improvement?

      I've consulted with my PCP, ENT, a neurologist and a pain management specialist and no one can provide an exact diagnosis nor prognosis.

      I kind of get the "well, this is just the way it is" vibe and reaction from everyone....Frustrating.

      Anyway, let me know if I can be of any support as I can empathize with your current situation.

      - B

  • statebryan
    statebryan desrose

    Posted

    Hi desrose,

    I am experiencing some similar experiences. My synopsis is below. Although I'm not experiencing eye movement, I do experience black spots in my vision from time to time when the pain is the most excruciating.

    I've done multiple CT Scans, EEG and soon to be an MRI. None of the tests thus far are conclusive of anything.

    Let me know if you're doing any better.

    - B

    -------

    Surgeries performed:

    * Tympanomastoidectomy - 3x times

    * Ossiculoplasty - 1x time

    * Ear canal graft - after each surgery is performed

    * Last surgery a mesh sheet was left behind ear to prevent the ear drum from rupturing again

    Dates of Surgery:

    * 8/17/2011

    * 4/26/2013

    * 3/3/2014

    Amplified side effects experienced daily:

    * vertigo

    * moderate dizziness

    * severe tinnitus

    * cyclical migraines / headaches

    * daily balance issues

    * involuntary twitching

    * sporadic clicking in right ear due to involuntary pressure fluctuation

  • n44029
    n44029 desrose

    Posted

    Hiya,

    I realize this is an old thread but it closely resembles my situation as well.

    Carcosmo, I totally identify with your statement of quality of life being dependent on how you feel that day! So frustrating!

    I had my surgery about 1.5 years ago. I have headaches, general lightheadedness, and fatigue. I also have a very slight sensation sort of like permanent brain freeze near where the top of my ear connects to my head. Sometimes after about 4 or 5 hours awake, I HAVE to take a nap, the fatigue is so strong. Usually I have one "bad" day, the next couple days I feel progressively better, then it starts again.

    I have worked with my gp and surgeon. Both see no signs of infection or anything wrong and suggested pain medication (which doesn't effectively work).

    That's fine if it worked, but WHY am I having these pains?

    Hope someone has some comments or ideas. Statebryan, I get the same sort of feeling of a shrug from my providers too. They are not superhuman so I don't expect them to know immediately and decisively what's wrong, but it would be nice to feel they are curious and trying to solve a problem. Probably a case of too large of a workload of patients, but I digress...Anyway, it's nice to be able to vent my frustration as well at least! 😃

    Cheers.

  • Iam-stu
    Iam-stu desrose

    Posted

    Have not yet had surgery but its funny how you said about eyes and headaches. I have got the exact same problem the ENT guy said it was not related. Before I knew it was Cholesteatoma I use to have bad headaches and then bleeding from the ear my eyes where the first to do strange things like flash lights or lines or go partially blind for a few seconds, then I would have all the ear problems. In a way it was a warning that my ear was going to get nasty and every time I had these weird signs/symptoms it would almost always cause the ear to bleed and drain fluid. I still get bad head attacks but thankfully even though months on end of constant bleeding from the ear it has stopped and now and I just get drainage and headaches and the odd attack in my eyes. Yes I think it is very related... But come what Friday this sucker is coming out so I will find out how great I feel after that... My only concern is the odd threat of permanent facial never damage which could happen so I have been told 😦 I really hope not as I have enough to deal with....

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