So glad to hear that you are felling better. Pain is so destructive . Your operation sounded very complex but so glad that finally you have got relief long may it continue x
I hope that bulge is just minor.
Are you taking any vitamins for your recovery like B6, 12, or lots of D3?
I don't take any vitamins. I am drinking lots of pure fruit juices, and eating as well as I can (mostly veggies or fruit).
I just came back from walking my dog!!! I am exhausted, but it was worth it. I couldn't let him off leash today, but he loves his walks.
I cannot wait for my follow up with my NS. That might conclude my story of my MVD.
Here is hoping you all have a great day.
Smash
Another positive day.
I woke up today with a sore back. Lying in bed all day can do that!! I need to figure out a better way to rest.
I have a setup for during the day, but not for when I sleep (which I am doing a lot of).
Feeling a little nauseated, which I am hoping is not related to the surgery. I might have overdone things a little bit yesterday.
One more day until I see the NS. I cannot wait to see what he has to say.
Keep well.
Smash
I saw my NS today! He is very happy with my progress. He calls me his little research project!
GN is not a common condition at all. I requested my surgical report, and will be getting it once he has completed it.
I asked my NS about my bump. He thinks is is a spinal fluid leak. He is not worried about it, because it is not leaking out of the body. He believes that the leak will heal itself and the fluids will just get absorbed by my body.
At this point my MVD was a success. Getting headaches, and dizziness is all part of the game. Talking with my NS, he said it may be 2-3 more months before I feel myself again.
I hope you all got some value out of this story, I know I sure am glad I wrote it all down.
Take it slow
Smash
I also have Geniculate Neuralgia that was treated by MVD on 12/4/2004 and was 99.99999 % successful. I have momentary pain if i am extremely stressed out or sick. I wish it didn't take almost 4 years to get a correct diagnosis & treatment , but am so thankful for Dr. Peter Jannetta & Dr. Kenneth Casey.
GN is extremely rare. I have only talked to one other person until now that has been diagnosed with GN since 2004 and I work only with people who have Rare Disorders. I couldn't even find any statistics on how many people have GN. Monday I will make a call & get an answer because that is something I have always wondered.
This has been so helpful for me, thank you all for sharing your stories. I had MVD by Dr Casey Aug 14 for TN type 2 and GN, my vestibule cochlear nerve was also compressed. I’ve had great success so far as the pain goes, but the nausea and dizziness is worrisome. I know its only been 2 wks. For those of you with GN that had MVD, roughly how long did the dizziness and nausea last?? Seems like a long road ahead of me.
Smash- you sound like you’ve been through so much.
OH MY STARS! I AM SO THRILLED FOR YOU, and it gives hope to EVERY other person out there with GN! I am going to post this link into the GN group as a permanent discussion that people will see up top, ok? CONGRATULATIONS! Now, 2 months later, how are you doing?
Smash, who and where did you get your surgery done? Mine started with the stabbing but is 24/7 now. I am very encouraged by your story and so happy you are not in this horrible pain anymore. Sharon
My sugery was performed in Ottawa Canada. Im still dealing with CSF leak, had an MRI done and am now waiting to hear from surgeon. I might need a secondary surgery to clean it all up.
((( smash ))), I hope this get resolved soon so that you can continue your recovery and be well.
Sending positive thoughts!! Mace just posted a blog the other day about his csf leak post MVD, check it out.
Thinking of you, Mimi xx
Thanks for responding, I am in Florida....I am researching UMPC in Pittsburg for this surgery.
What are they telling you about this CSF leak? In the past I have had surgery on the spinal cord, nothing happened but a leak of csf fluid required a surgery called a blood patch, using your blood to patch the area where the fluid is leaking, not sure how they do it for cranial csf leaks. Usually successful, good luck to you, Sharon
The plan will likely be to do a lumbar drain, and re open my incision to clean it up.
It all depends on the result of MRI
Smash
where is it leaking from I have a bump at the end of incision that is like a blood blister it seemed to drain and then it came back went to my gp he said that it is probably just an area that did not heal so it it trying to heal maybe the stitch came out to soon or when i got my staples out it was not completely healed. I hope things go well for you
andria
smashagnome said:
My sugery was performed in Ottawa Canada. Im still dealing with CSF leak, had an MRI done and am now waiting to hear from surgeon. I might need a secondary surgery to clean it all up.
The leak itself does not come outside the body.
There is a large amount of liquid right at the incicsion spot. It is squishy and changes to hard every once and a while.
does it look like a blood blister do you have any other symptoms
smashagnome said:
The leak itself does not come outside the body.
There is a large amount of liquid right at the incicsion spot. It is squishy and changes to hard every once and a while.
It is about the size of half a tennis ball. I also get what my NS calls low pressure headaches.
I have headaches when I stand up, that gets better whe I lay down.
I am still waiting to hear about the results of my MRI.
My NS is on vacation until this week.
Smash
How are you feeling now? I'm new to the forums, and don't have an official diagnosis of Geniculate Neuralgia, but I'm curious how you are doing.
smashagnome said:
Another update. After 18 hours of puking every 20-30 minutes, I needed a day or two to recover.
Yesterday was a good day, how sad is it when for me a good day only means no puking,
I got my sutures and stitches removed today. My surgeon wanted to leave them in for 2 weeks. Most of them came out fairly well. There was 2 however that really hurt coming out.
Vertigo is much more manageable, as is the nausea. I am forever sleepy though. I am having a tough time finding my words today, but I wanted to say something.
Smash
Over all I would say I feel pretty good.
I still have a CSF leak and, however I am back to work now. On the 10th I go to see my NS again to discuss how to resolve the CSF leak.
Welcome to the forum, and I hope you find relief soon.
Smash
Thank you. I'm glad you are feeling pretty well.
I'll post more when I have time. I'm happy to have found a group of people who understand
smashagnome said:
Over all I would say I feel pretty good.
I still have a CSF leak and, however I am back to work now. On the 10th I go to see my NS again to discuss how to resolve the CSF leak.
Welcome to the forum, and I hope you find relief soon.
Smash