Hi guys,I don't want to whine.I know so many of you are in severe pain right now and i know what that is like.I was sceduled for surgery for my TN a couple years ago.I had a confident experienced surgeon.Upon my MRI results the Radiologist discovered i had a AVM that was probably causing my pain.My surgeon backed out and suggested treating the AVM.I went into remission for several months and had a Cyber knife treatment from the best cancer center in Ft.Worth thinking that treating the AVM would both keep me from having a stroke and also take care of the TN.Well,the TN came back and it was furious and terrible.The worst episode you can imagine.It would start to recede and then slam me really hard.I was unable to leave the house or do much at all for a couple months.The cancer doc decided we should treat the pain and do a Cyber knife again.This time on the nerve.Well,something happened with his machine or the same machine at another facility and maybe the state?shut it down.I went to a neuro he recommended in Dallas and had a Gamma Knife treatment.I immediately felt better and it took about 9 weeks to be med and pain free.This was in July 2013.I am very grateful for this.BUT..Now i am having this annoying numbness that isn't pain,but i'm worried it is TN waiting in the wings.Is there anything i can do for the numbness?It is at the side of my eye and running into my nose.Feels almost like someone pressing there.Again,i'm happy i had the procedure and it did kill the pain.I'm able to have a life again.Both doctors ...make that 4 different doctors thought it was the right procedure to do rather than surgery due to the proximity of the AVM.If anyone has any advice for me and this numbness i would really appreciate it.
I also had the CK in Fort Wor at a cancer center. I had 2 MVD prior to taking this step. I now have had two CK. After my first CK, my pain never was completely gone and never reduced my meds but I felt about 30% better for about 4 months, then my pain came back full force with a vengence. 6 months after my first CK I had my second one. (should of never did that) about 2-3 months after having my 2nd CK , the numbness started with still experincing pain with the numbness. I am 14 months post treatment and I am worse than I ever was. I am completely numb with a lot of pain… I also have that severe pressure feeling. Ask your doc about a compound cream. It does help that pressure feeling. After the numbness started, a couple months later I started having problems with my eye. Now I am no longer producing tears and I am on several different eye drops. It is very uncomfortable and is a constant battle. Your numbness will probably spread (hopefully not) but mine did. You still not having pain is good. I never was that lucky. Im sure your doc can call you in that compound cream. I wish you all the best of luck and hope this helps a little. Donna
Thanks Donna,I have a call in to the neuro and a appointment with my G.P next week.I'll ask him about a compound cream.Is it the lidocaine?My numbness seems to come and go,yesterday it was quite concerning and bothersome.Today very little.I hated to even start the thread as i know i'm in a very good place now compared to 6 or 7 months ago and so many others here like yourself.I saw Dr.Park @ the cancer center on McCart.Can't remember the name of the joint right now.Have you looked into the PNS?The nerve stimulator?Many here have found relief with it.Thanks for the info and advice.If there is anything i can do to help,let me know.I live south of the big city in Joshua.D
Good morning Don,
Yes, the cream does have lidocaine in it but also has bacoflen, ketamin, gabapentin, amtriptylinem, bupivacaine, and clonidine in it. It difently relieves the pressure but it doesn’t last very long. I have to apply the cream a lot when I am feeling that way. Yes, I have checked into the stimulator. I sent all my medical records to Dr. Casey, (wrote Striking Back), and he said my only option would be Motor Cortex Stimulator. I asked him about the PNS, since it is so much less invasive, and he does not recommend that. He said there is about 60% chance of having some relief but the relief will not last as long as if you do the MCS. I just haven’t gotten myself to take that step but will have to do some day. Don’t ever feel bad about posting here because you are in a good place. We all need to hear those stories. I hope you are having a good day!!! Donna
I'll ask my doc about this wednesday.Thanks!I haven't had that numbness, tingly, crawly feeling at near that level again since that day.Maybe i just slept wrong and was being paranoid.That pain ghost is also in the back of my mind.Good luck to you!