[bo55bbie]

Hi,

I have had pain for over 11 years on the rt side of my face. I had MVD done after meds not working. It had worked a little but still on a boat load of meds. My question is does anybody know of a neurosurgeon in the Midwest who does MVD procedures? I went up to Indy but that is far from where I live & the NP kept chaning my appt date without telling me. My husband will not take me there anymore. I never had a appt date after surgery.

I have really found the forum useful. Thanks for any info that can be given.

[easygoing]

Originally Posted by bo55bbie

Hi,

I have had pain for over 11 years on the rt side of my face. I had MVD done after meds not working. It had worked a little but still on a boat load of meds. My question is does anybody know of a neurosurgeon in the Midwest who does MVD procedures? I went up to Indy but that is far from where I live & the NP kept chaning my appt date without telling me. My husband will not take me there anymore. I never had a appt date after surgery.

I have really found the forum useful. Thanks for any info that can be given.

Sorry for all you have gone thru. couple of questions. What kind of TN do you have? did they find a compression? how long has it been since your MVD? have you seen your surgeon or spoken with him since the surgery at all? what did he say?
I ask all these questions so I can try to answer you better. I personally had 2 MVD surgeries for typical TN. I was pain free for about 5 or 6 weeks after my first surgery and pain came back. my surgeon wanted to then try gamma. I got a second and third opinion and ended up going to Pittsburgh for a second MVD and they added more padding which stopped the pain.
I am telling you this because so etimes there is a reason for the pain returning and they can fix it. Sometimes MVD is just not very effective no matter what. TN can be such a hard disease. it can be such a struggle.
iwill look for your reply.
Easygoing

[bo55bbie]

Originally Posted by easygoing

Sorry for all you have gone thru. couple of questions. What kind of TN do you have? did they find a compression? how long has it been since your MVD? have you seen your surgeon or spoken with him since the surgery at all? what did he say?
I ask all these questions so I can try to answer you better. I personally had 2 MVD surgeries for typical TN. I was pain free for about 5 or 6 weeks after my first surgery and pain came back. my surgeon wanted to then try gamma. I got a second and third opinion and ended up going to Pittsburgh for a second MVD and they added more padding which stopped the pain.
I am telling you this because so etimes there is a reason for the pain returning and they can fix it. Sometimes MVD is just not very effective no matter what. TN can be such a hard disease. it can be such a struggle.
iwill look for your reply.
Easygoing

I had pain off and on for many years and than it became continuous mostly at V2 on Rt side, although I would feel pain also at V1 and V3 both on rt side. My neruo dr diag me with TN on Rt side. The surgeon said he found a compression and a vein around the nerve. He 1st thought I hadMS but ruled it out with MRI. I presently take 400 mg tegratol ER in 2 doses, 3oo mg Lyrica in 2 doses, 10 mg in 2 doses, elavil 225 mg in 1 dose, and pain med prn , usually 1 a day.
I have not seen my surgeon since day before I left hospital after surgery. I have tried to speak to him but always talk to NP. She changed dates of appts. without speaking to me several times and when i call up she says I have to go that date or schdule it for several months in advance-she even changed the date of my surgery this way and cost my husband work that he had scheduled.

I would like to find another surgeon closer to me but I have not found anyone. My pain had gone from my cheek and a less from my chin area but very strong in the forehead, upper side of nose and in eye. Without meds it is all the time and sometimes with the meds I have pain. I do like my neuro in Evansville but wanted to find surgeon that was closer to me than Indy as we live abouth 6hrs from them. With the gamma can that be used before another MVD if it doesnt work? They did the needle in cheeck and tried for 4hrs but could not get needle in the right spot.

[easygoing]

I personally would never have gamma. the new statistics coming out are not as positive as they once thought. I have also had 3 neurosurgeons tell me they no longer recommend gamma because they have found it causes destruction that can be impossible to fix.It can make a MVd less likely to be successful. Having said thi, it is just my personal opinion. I know there are many put there that feel gamma was successful for them. another reason I never had gamma was because of my age. I am only 46 and gamma is not usually a permanent fix and you need more than one and you can only have so many. there is also a new study out in the medical journals that says that gamma will put you at a much higher risk for tumors down the road and I certainly don't need any other complications.
I know you don't want to travel,but I would highly recumbent Janetta and Sekula in Pittsburgh at alleghany hospital. I think they are the best and deal with the most trigeminal cases and probably some of the hardest. I so wish Ihad made the effort to gotothemthe first time I had an MVD. I would not have the problems I do now if I had. I know it is very hard to think about the cost and time to travel fora surgery,but it is worth getting the best care. you can call and they will review your records and serif you are a candidate for having another MVD. Any follow up care can be done at home with a local neurologist or neurosurgeon. that is what I did and it was the best decision I made. maybe not the easiest, but the best. I choose my first neurosurgeon because of ease and it was a big mistake.
hope this helps.
Easygoing

[legallady534]

I highly recommend Dr. Ken Casey, who is located at Oakwood Southshore right outside Detroit. He worked with Dr. Jannetta for years and has done thousands of MVDs. He just did my motor cortex stimulation.