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Thread: Neurosurgeon Appointment 8/15

  1. #1

    Default Neurosurgeon Appointment 8/15

    I had a right frontal craniotomy for a 1.5 cm colloid cyst in 2001. They couldn't remove it because it was attached to a vein, so they decided to drain it to relieve my severe hydrocephelus. Post-op it looked like a deflated balloon on MRI. In April 2009, I had an MRI after seeing a doctor about a different matter. He took my history and asked when my last MRI was, I told him I hadn't had one since about 2 years post-op. Anyway, the colloid cyst was back to its original size but no hydrocephlus and there was also a meningioma behind my optical nerves. We did radiosurgery for the meningioma in October 2010. We have been on a wait and watch scenario for the recurrent colloid cyst since we discovered it returned in 2009. I saw the neurosurgeon on Monday the 15th of August and he has decided that he does not need to re-check it for a year since it has not changed in the past 2+ years we have been monitoring it. I'll see the oncologist that did the radiosurgery for the menignoma on the 18th, my gues is that as long as the mengioma looks like the radiosurgery killed the cells, that he will also not see me for another year.

    I'm a little frustrated because I have headaches and stress all the time, but they honestly do not think that my headaches have anything to do with these growths. I have no hydrocephelus and show no swelling in the brain of any kind. So I am a little upset that I don't have hydrocephelus that would explain how badly I feel all the time. I guess I just have migraines and I KNOW I have neck problems from stress from all of this.

    I guess nothing is easy. Stinks that I have to learn to live with migraines and other symptoms given that these things are in my head that don't belong there. It would be nice if they were the cause and that they could take them out and then I would be pain free. But it is not the case and it stinks.

    I know I know you are all going to say that the doctor is wrong and that I should find another doctor, etc. But this doctor is the head of neurosurgery at one of the best hospitals in the country. I just wish the reality were different.


  2. #2


    Hi Jodee if you remember back over a year or so ago I was having non-stop headaches that never went away I went to bed with them and awoke with them; had all the regrowth workup and finally saw a migraine specialist at UCSFand the gave me the diagnosis o f Nummular Migraines tried several new meds and was relieved in a matter of days with a well known drug called elavil. I even wrote a will to my husband if he found me on the floor to not do CPR because te pain was so intense as tho my brain was on fire. today I am headache free but it was quite an ordeal at the time. Hope this helps somewhat. Donna

  3. #3

    Default Headaches

    Hi Donna,

    Thank you for your reply. I saw the Oncologist today and he to said that I do not need to go and see him for a year. He treated my meningioma last October. They feel that my headaches are probably Migraines as well and I need to follow up with my PCP. I saw my chiropractor who I have been seeing for headaches last night. I had a decent night sleep after seeing him. I think I need to see him more often than the once a month I have been seeing him as of late. We scheduled my next appointment in 2 weeks. Massage was also suggested by my neurosurgeon but of course that is probably not covered by insurance. I have a call in to a massage therapist that comes highly recommended by a couple of my friends, one of which had brain surgery herself in the past. Anyway, still waiting for this person to call me back so I can set up an appointment.

    Its just so frustrating to know that you have all these painful symptoms in your head but yet your "tumors" are not causing them, it is just hard to believe. My MRI looks good right now, no blockage and no growth in 2 years now, but the cyst is 1.5 cm so its big. Maybe I just can't handle living with the stress and worry about this thing blocking. I lived through it before and felt that I got lucky. Doctors aren't that concerned but I don't know how they can't be. I am.


  4. #4


    Did you get a referral to a migraine specialist, at least he shold be able to come up with a treatment plan and even comment if the Chiro would even help. that is my suggestion.

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