Considering my pain is atypical I wonder how it will go.
I just got home from my neuro appointment and he didn't even reschedule, just said to come back after seeing the surgeon and call if I need a refill next month.
I take it they look at your images and tell you they can fix it?
The surgeon I was referred to is Daniel Lazar here in Seattle, I called and got an appointment for tomorrow.
I guess I should ask how long is the downtime, success rate, etc
I Hope your appointment goes Well! I know what you are going through right now.
I have had a couple appointments with a Surgeon here in Detroit. I am anxious to come up with a game plan.
For me, I think I am more interested in MVD because I am not a big fan of taking Medication in general.
I Think they tend to look at images to rule out any other problems and also look to see if there are any blood vessels close to the nerves, that could be causing compression.
Let me know how your appointment goes:) Feel Better! Julie
Hi Shindig,
Hope you have a good appt. tomorrow!
Ask lots of questions !
Many compressions can’t be seen via MRI…and people with type 2 TN do undergo mvd.
Explain how the meds affect you as well as your quality of life and ask for his opinion on options for you based on his experience etc.
Positive thoughts, Mimi
Hi Shindig
Sounds like you are in really good hands. Wishing you the best with your appointment.
Bella
Hi Shindig,
Hope your appointment goes well!
Oldriska
Hi,
Yes, ask those questions but FIRST let the surgeon tell you his opinion of the MRI images. Then the questions would be ( in my estimation and experience). how many MVD's ( or specific surgery, if not MVD) do you perform annually ( i'd like to hear at least 1 per week on average) and how many in total have you performed.( hundred's ) I would also want to make sure the HOSPITAL has the experience to handle your case. ( a busy and experienced Neurosurgery dept.)
Good luck and let me know if I can help.
Rick
Shindig, message Albee on here. He just had his in January. He is still on the mend, working with PT and all. But he is in GREAT spirits. He also has a Caring Bridge blog you can read. It's http://www.caringbridge.org/visit/albee You WILL be down more than a couple of weeks. Maybe you can finish this semester out and THEN have the surgery. That would be my plan anyway. You will prob only be in the hospital 2-3 days but you will have to have someone with you 24/7 for a couple of weeks because of fall risk. I will let you read his caring bridge blog and it will tell you all of it. Hope your appointment goes well! Keep us posted!
How did it go??? My MVD went well.. Im happy with results.....
Do the MVD they will find the problem like they found mine, and you know you and I have the same feelings going on in our face... So just do it and get to living again.... xo
Well that’s encouraging Shindig, now you just need to think about it.
Read and research all you can so you can make an informed decision.
I chose mvd and am anxious to have it done, BUT it’s a personal decision.
Take your time and as Donna mentioned, maybe if you can manage until after your semester you can do it after!?
((Hugs)) mimi
I wouldn't choose to do gamma knife if it were me. I have heard that if they do the gamma and it damages the nerve too bad, then when you try MVD, it has way less chance of working. GO BIG! When the time comes that meds aren't working anymore, I am going for the MVD. My neurosurgeon said that if the MVD is too far off and I needed some immediate relief til I could get it done, that we can do that glycerol rhizotomy for a temp fix. Let us know what you decide!
shindig said:
Thanks Donna. I met with the surgeon and he offered to do it but said he didn't like the numbness and atypical stuff, saying it lowers the chances of relieving pain. He said I can try to live with it, could try the gamma knife, but he'd prefer the MVD. He said to call to schedule whenever I'm ready.
Also there's a big fat artery loop right on the nerve where it comes out of the brain, which he said is probably a big artery but small chance of tumor.
If nothing else I'd be able to rule out that as a cause if they fix it.
Shindig,
Each case is pretty subjective. Some folks take longer than others to regain their strength and mental acuity. I was out of the hospital in 3 days and pretty much back to normal activities in 3 weeks ( perhaps a bit atypical). Once I was weaned off Carbamazepine my thought process started to become clearer, but it was a couple of months before I really noticed my mental acuity had returned. i was pain free immediately after surgery except for some incision discomfort. But that was me, everyone is a bit different.
Best Rick
I am currently recovering from my second mvd in less than a year. I know everyone is different, but you need to allow for at least a couple of weekend of 24/7 care because you can’t lift anything or bend over. The first recovery took me about 6 months to get back to where I wasn’t searching for words all of the the time, but I was still getting tired a lot. Obviously my pain came back hence the second surgery. I’m 11 days out of the second surgery and absolutely miserable. Theis recovery has been much more difficult. I have both type 1 and type 2 and my surgeon in pretty confident he can get me pain free or close to it, but I think you need to be realistic about the possibility that your recovery will not go as smoothly as some other people’s.
I am currently recovering from my second mvd in less than a year. I know everyone is different, but you need to allow for at least a couple of weekend of 24/7 care because you can’t lift anything or bend over. The first recovery took me about 6 months to get back to where I wasn’t searching for words all of the the time, but I was still getting tired a lot. Obviously my pain came back hence the second surgery. I’m 11 days out of the second surgery and absolutely miserable. Theis recovery has been much more difficult. I have both type 1 and type 2 and my surgeon in pretty confident he can get me pain free or close to it, but I think you need to be realistic about the possibility that your recovery will not go as smoothly as some other people’s.
Hi Shndig, I just wanted to let you know about my MVD experience. I also have ATN and had my surgery on January 25. I was only in the hospital for two nights, and was back working a week . I do work from home, and my work is all on the computer. I was quite tired, but was able to think clearly enough to get my work done. I am still recovering, but I am very glad I had the procedure. My pain was gone when I woke up from surgery, but I am having some now, which is to be expected as the nerve is still healing. Since I have bilateral ATN, I am still taking neurontin, and will have surgery on the other side this summer.
I hope this helped as far as letting you know about how long it takes to think clearly after surgery, and wish you the best in the future.
Christine
shindig said:
Thanks Rick. My neurologist was saying this guy specifically has good success with the type of surgery and highly recommended him. But I’ll definitely be asking about success rate.
My biggest concern is I just started my LAST semester at school. The last one… and I figure I can lose a couple weeks and be alright but it’s still a worry.
Also I absolutely hate hospitals, everything about being in them, losing your freedom, stuck in a room, I normally don’t watch TV. The thought of being there a week is worse than being cut up.
After surgery how long is it before you can think hard, reading/writing papers and crap, or programming/coding computers??
I was up and about in three weeks after surgery , even though I had some complications (allergies to meds and fluid in the ear). My brain was coming back to normal very quickly!
I have to ask, can you put off surgery until after this semester? It seems like that will be a lot on your plate all at once?
Having the MVD was the best decision I made, and even with the complications, its easier than you think, believe it or not. Just make sure you are comfortable with all the answers to your questions. I made a list in my phone so I had it with me at the first consult,
Best of luck with all of it
Wendy "crashgirl"
shindig said:
Thanks Rick. My neurologist was saying this guy specifically has good success with the type of surgery and highly recommended him. But I'll definitely be asking about success rate.
My biggest concern is I just started my LAST semester at school. The last one... and I figure I can lose a couple weeks and be alright but it's still a worry.
Also I absolutely hate hospitals, everything about being in them, losing your freedom, stuck in a room, I normally don't watch TV. The thought of being there a week is worse than being cut up.
After surgery how long is it before you can think hard, reading/writing papers and crap, or programming/coding computers??
I stayed in bed 3 weeks...I had already weaned off meds --- I have just seen a few too many stories of people lifting, driving, running, cleaning in the first 2 weeks -- ending up back in hospital etc.....
no no no --- as far as mental clarity - since I was off meds - it came back in a couple weeks -- but the stress on my body and spirit of traveling out of state and back just made me plain old tired for 3 weeks. Your mileage may vary!! If I had tried to do this in my Master's program a couple years back -- I would have had to drop - as was accelerated program.....Real Life will come back and hit you soon enough -- rest as long as you can and find out what really are priorities and don't be afraid to ask for help.