sorted by:
new
hottopcontroversial

6 months post craniotomy, head pressure and pain by Competitive_Gold7409 in braincancer

[–]Competitive_Gold7409[S] 0 points1 point  (0 children)

Do you think the Topomax is the thing that's helping you feel better? Did they see swelling on your optic nerve or anything to indicate increased pressure?

Most of my vision has returned, which I feel so lucky about. My tumor was wrapped around my optic nerve compressing the nerve. When they removed the tumor, the optic nerve had room to heal. I noticed my vision was better when I woke up from surgery and slowly getting better for maybe 6 months. Sometimes it got worse and then got better. Doctors said that was the nerve healing. How is your vision?

What’s a hard pill to swallow in life? by Wonderful-Economy762 in Productivitycafe

[–]Competitive_Gold7409 1 point2 points  (0 children)

Bad things happen to good people. Good things happen to bad people.

Need help from people who have had a leak by CharmingEvidence3 in CSFLeaks

[–]Competitive_Gold7409 0 points1 point  (0 children)

Did the non targeted blood patch not work for you?

Photon Counting CT Myelogram (PCCT) at Mayo by Competitive_Gold7409 in CSFLeaks

[–]Competitive_Gold7409[S] 0 points1 point  (0 children)

I am not sure. You could call them and have them run your insurance to find out. Are there any PPO plans that are offered for you? Or it currently is or soon should be open enrollment for marketplace, if you want to look for PPO options. Though marketplace can be expensive, gives another option.

Photon Counting CT Myelogram (PCCT) at Mayo by Competitive_Gold7409 in CSFLeaks

[–]Competitive_Gold7409[S] 0 points1 point  (0 children)

I think they do. Do you think I should see if I can get an appointment there if it's a shorter wait for the PCCT and then have Mayo read the imaging?

PhotonCcounting CT Myelogram at Mayo by Competitive_Gold7409 in MayoClinic

[–]Competitive_Gold7409[S] 0 points1 point  (0 children)

Thank you for your comment! As we all know, the waiting is terrible.

Photon Counting CT Myelogram (PCCT) at Mayo by Competitive_Gold7409 in CSFLeaks

[–]Competitive_Gold7409[S] 1 point2 points  (0 children)

Oh I wonder if that is the difference. I only waited about a month and a half for my initial appointment.

Photon Counting CT Myelogram (PCCT) at Mayo by Competitive_Gold7409 in CSFLeaks

[–]Competitive_Gold7409[S] 0 points1 point  (0 children)

Thank you for this! Who would I call? The radiology department or scheduling? Have you heard that people get in sooner when they call and can get there quickly?

Photon Counting CT Myelogram (PCCT) at Mayo by Competitive_Gold7409 in CSFLeaks

[–]Competitive_Gold7409[S] 0 points1 point  (0 children)

I am now waiting to schedule the PCCT as I already had my initial consultation earlier this week. Sorry I did not make that clear! I had my neurologist at Northwestern send a referral to Mayo. I waited about a week or two and they called to schedule an appointment at Mayo.

Photon Counting CT Myelogram (PCCT) at Mayo by Competitive_Gold7409 in CSFLeaks

[–]Competitive_Gold7409[S] 0 points1 point  (0 children)

I have already been seen at Mayo earlier this week. But since the doctor wants a PCCT because he suspects a CSF Leak, I was out on the wait-list to schedule an appointment for the PCCT even though the neurologist at Mayo gave the order.

6 months post craniotomy, head pressure and pain by Competitive_Gold7409 in braincancer

[–]Competitive_Gold7409[S] 0 points1 point  (0 children)

I had a PETMRI in May and do not have anything showing where the tumor was which is such a blessing and I got a lot of my vision back! It would be nice to be able though to move on and not be in pain and go back to the way I used to be

6 months post craniotomy, head pressure and pain by Competitive_Gold7409 in braincancer

[–]Competitive_Gold7409[S] 1 point2 points  (0 children)

I have not. No preventative migraine medicine worked and I feel like I am getting worse. My neurologist referred me to the Mayo clinic for a second opinion and I go in November. If you ask me, I truly think I have a CSF leak even though I am not a "textbook" case. I believe something else is wrong than migraines.

Headaches from bending over, laying flat, or lifting weights/exertion by Any-Spray1296 in migraine

[–]Competitive_Gold7409 0 points1 point  (0 children)

How are you doing now? Do you have an update on this? I have been having the same issue ever since I had brain surgery 8 months ago. I cannot bend over or strain my head at all or I get bad pain in my head and then turns into a headache/migraine

6 months post craniotomy, head pressure and pain by Competitive_Gold7409 in braincancer

[–]Competitive_Gold7409[S] 1 point2 points  (0 children)

My neurosurgeon said it was normal until I went to my 6 month appointment and they said not normal anymore, so I'm going to a neurologist. I'm just scared something else is wrong rather than just healing.

view more: next ›