Hey Greenbay,
We are so sorry your 2nd decompression wasn't successful. We can only imagine how disappointed and frustrated you must feel.
We hope you get some better news at your follow up appt.
Please keep us posted on how you are doing.
Take good care,
Lucy

Hi Greenbay,
Here is question, did they take you off diamox after your fenestration? My husband works with a dr. who does these, who told him that after a fenestration a person should come off of diamox or the fenestration will scar over.

Anyway, I don't see any relation between having a shunt and your scarring, from what I have researched...are you having headaches?

Sorry you went through so much, it is so emotional to have so much hit you at once.

You are in my thoughts and prayers. Jazzy

Thank you so much for your support. I cannot take Diamox because I'm considered a "medication failure" while taking it. The Diamox made my face go numb and several other side effects and that was on the lowest dose. My doc told me that I would need to be on at least 1000 mg for six months for it to be beneficial, so that is why I had to have the surgery in the first place. My options are pretty limited and I'm just really scared because I know shunts can cause problems too and a person runs the risk of infections, etc with these, but my only other option I think now, is to either have a shunt done or wait and see if my eye gets better on its own which I can't imagine it will since there is so much scar tissue...ugh, I'm so confused...thanks again for your kind words and support :-)

GBF,

I too am sorry to hear of this news. I hate to say it but the best way to save vision if the ONSF surgery does not work is to shunt. The scar tissue does not mean anything with respect to a VP (head) or LP shunt. All my research says the VP is the most reliable but obviously the scariest and higher risk. Remember however that it is also the most commonly performed as it is the only option for those with Hydrocephalus.

Good luck girl, I feel for you. Keep us posted. No more disappearing acts until we know you are feeling better.

TJ

Greenbay:

I'm sorry that you are dealing with this disappointment. I don't think you and I have spoken here before, but we are a small group of people who share this one common plight. As such, I truly feel sorrow and pain for the sadness you are dealing with.

Please know that I will be praying for you that you might find healing through another process. Know that you have the support of both friends....and strangers here on this site. Cheer up...I know there are better days to come.

God Bless!

- MM3

Hi Greenbay,
It is good that you were not on diamox since my husband works with a surgeon who does fenestrations and said they scar over if someone keeps taking diamox (since it lowers the pressure) (the high pressure keeps it from scarring over since the operation is an "open window" procedure.)

But since that didn't happen to you, I'm sorry the surgery was not a success. I can't tolerate diamox either and that is why I opted for the shunt...but keep in mind that people who have had successful shunts don't usually post on support boards.

I hope you start to feel better and you are in my prayers, Blessings, Jazzy

Hi again everyone. THANK YOU so much for your kind words. As you have noticed, I tend to go off in my little corner by myself and try to deal with stuff on my own. You all have been so awesome. My husband has been awesome too and has taken great care of me as well. I was an emotional basket case the day of surgery after finding out the doc couldn't fix my optic nerve. It is just SO frustrating! I keep asking myself if I wouldn't had gained this weight (thanks to my PCOS and hysterectomy), maybe I wouldn't be in this position. My husband tells me I have to stop thinking like that and to concentrate on getting myself well. I promise that I won't go on one of my disappearing acts and will keep you posted on how I'm doing. I'm just glad I have one good eye even though I feel like a pirate....lol!

Jazzy:

Interesting info about Diamox I didn't know that. Just one more reason why I won't go back on it.

- MM3

Sorry to hear about the surgery Greenbay. I know how frustrated you have to be hearing that it didn't work out. I will keep you in my prayers.

GreenBay,
I'm sorry to hear you are having such a lousy time with the fenestrations and all of the frustrations in dealing with PTC. We have all had those super-emotional days when the weight of all of this is too much to bear, and they are awful. It sounds like you have a great support system around you which makes a world of difference. I hope things go well with your post-op on Thursday.
I have definitely learned that we all are so different in our disease course and what works well for one may be horrible for another. I have had fenestrations on both eyes and taken Diamox through both of them because my pressure was so high they were afraid to take me off for the surgery. Unfortunately, the fenestrations were not enough to hold the pressure down so I got a VP shunt which seems to be working very well. Any scar tissue from the fenestration does not preclude getting a VP shunt. I had an LP shunt before the VP but it was a complete failure (probably due to my lousy NS at Duke). The VP programmable shunt has been the key to my success. They are scary and I have had a complication with the tubing in my abdomen, but the shunt is the only thing that has slowed the PTC.
I wish you all of the luck in the world.
BiancaBlue

Hi BiancaBlue,

I am curious about your VP shunt. If you have time to share more please do. Or if you have already spilled your life story on another post let me know that and I'll track it down. I am standing in line for one so I am trying to gather as much info as I can. The few folks here with VPs have had good results but many of the LPs have been nightmares.

How long have you had it? How was recovery? How long in the hospital? Did it cure your headache? What would you do differntly or advice would you give someone considereing a VP shunt? Any thing you can share would be appreciated.

Thanks,

TJ

PS. Hey GBF, you can get a green and yellow one and I'll get a purple and white one!