Weeks to get an appt with my neurosurgeon

General General TN & GPN (Old Site)
1

I have been having such a difficult time to get in to see my surgeon. Emailed him three times. So confused if its the right decision. Had MVD 18 months ago, now right side TN. Meds no longer work. Make me sick to my stomach everyday. I can tolerate alot if works on pain but now unaffective. My left sided TN was gteat for 6 months then downhill from there. My petrosal vein was the culprit and excessively large one my husband was told, biggest he had ever seen. Wondering if recompressed , teflon moved, scar tissue. Very common for re compression with vein, because they can regrow. Also my craniotomy site on left still cannot sleep on that side too much discomfort. Somethings not right should not take this long to heal. So conflicted because he knows my history and has been there, couple of other docs I spoke to will not redo that side. Hoping my doctor will to get me better. One of the reasons cancelled surgery in Feb for right side. Any thoughts anyone, at this point desperate
My best
Joanne

2

Have you had a new mri since your surgery to see if it shows any new compressions or changes? My surgeon said that if I show back up in his office with pain that he would order a new mri first to see what's going on. Also have you discussed any other treatment options with your dr. or any of the other dr.s that you've spoken to? My problem was veins also and my latest mri showed that I have another venous compression. He gave me the choice of a second mvd or a radiofrequency ablation, which I chose. Hope this helps.

3

I have had another MRI, that showed new compression on the right side. Will discuss my left side again and see what he has to say. Will keep you posted. Thanks. I have no provlem with him re doing MVD on the left before we tackle the right. Especially the incisional site is so troubling for me. Its been just too much time now that it comtinues to be painful.

4

I don't know what to tell you. But I can offer you hugs and support and pray that things get better for you!

5

Luckily I never had that problem with my incision healing. Sorry you are having so much trouble. I have read about other people having incision problems though. I hope your doctor can help you out. It's always hard when you have to wait to get into see them. Luckily my tn is only on my left side. I don't know what i will do if I eventually develop it on the right too. Take care, Laureen

6

Thanks everyone jabs on the left jabs on the right. You might think I was a heavy weight boxer. LOL. Gotta laugh or you’ll just cry

7

Sometimes you gotta cry too. Although I know, I know, it literally hurts to cry. I haven’t had a procedure so all I have to offer now is deep empathy for all your suffering and best of wishes that you get in soon.
peace and kindness
Bellalarke

8

I would go to your regular doctor about the incision - I would not wait.... Then I would call surgeons office -- since emails did not work

If he doesn't comply -- there are doctors (perhaps not near your location) that will try and help you.

Look at the doctors tab above if you need ---

Keep Posting!

9

Thanks everyone for warm heartfelt comments, i am going to give him at least another opportunity to give some suggestions. If I walk out of there not satisfied then will go for secomd, third opinions if need be.
My Best