To have Titanium mesh or NOT

[pjb]

Mei Mei, I wouldn't use me as much of example of anything other than having a long surgery. There are a number of people who claim that I don't feel pain (or that I am an unfeeling *******, I'm not clear which ). I do in fact feel pain, I don't believe I have headaches associated with my surgery or FSR as any headaches I have now are no different than what I had at any other time in my life.

Seriously though, I'm not sure the causes of headaches in general are understood well enough to make strong causative relationships between surgery types and headaches as there are simply far too many variables at play. I also think the available data are too poorly assembled and unavailable for most of us to any real research. The selection of people of folks active on the forum is most likely not representative of the AN population and so any correlations we make are not generalizable.

Mei Mei, I wish you could find some relief for your pain, I really do. If nothing else, you should take comfort in the fact that your experience makes the case as to why wait and watch might be the best option for those with small tumors.

-Tod

Tod you are right as an older person and with a small tumor 1 cm. I should have done more research and think my choice now would have been W & W and regret the surgery ... there is a Mikey on the W & W and his has not changed in 5 years he has resorted to a healthy life style along with vitamins and now with my 3mm left behind along with numerous post ops problems I am in the that category and have been taking the same vitamins he has and for almost 3 years now thank God my tumor remains the same size and hope it continues to remain the same.

Best Wishes,

[LizAN]

pjb,

I'd love it if you would put your history in your signature, to give us some perspective.  Your surgery was three years ago?  Your tumor was 1cm at the time?  The residual hasn't grown in three years?  (Yea!)  What vitamins are you taking?

For a slightly different perspective, I was in W&W until recently.  The first 6 months, my tumor shrank 1 mm, and I became complacent.  The next 14, it grew aggressively, by over 50%, something I did not at all expect.  I lost most of my hearing during that time and started to have facial symptoms.  I'm not so sure I should have waited, as there may be some damage to my facial nerve, and maybe if I'd had middle fossa at House, I could have saved some of my hearing.  Hopefully, the damage to my facial nerve is reversible.

Personally, I think the most important choice is treatment team.  That said, I hope I don't end up with residual problems, now that I've made my decision to go to House for translab.  There are drawbacks to every choice, surgery, radiation, and even W&W.  None of us can predict the future.

Mei Mei, I am praying that things get much better for you and soon.

Liz

[pjb]

pjb,

I'd love it if you would put your history in your signature, to give us some perspective.  Your surgery was three years ago?  Your tumor was 1cm at the time?  The residual hasn't grown in three years?  (Yea!)  What vitamins are you taking?

For a slightly different perspective, I was in W&W until recently.  The first 6 months, my tumor shrank 1 mm, and I became complacent.  The next 14, it grew aggressively, by over 50%, something I did not at all expect.  I lost most of my hearing during that time and started to have facial symptoms.  I'm not so sure I should have waited, as there may be some damage to my facial nerve, and maybe if I'd had middle fossa at House, I could have saved some of my hearing.  Hopefully, the damage to my facial nerve is reversible.

Personally, I think the most important choice is treatment team.  That said, I hope I don't end up with residual problems, now that I've made my decision to go to House for translab.  There are drawbacks to every choice, surgery, radiation, and even W&W.  None of us can predict the future.

Mei Mei, I am praying that things get much better for you and soon.

Liz

I have to try with my information I think if I remember right I was having trouble with that and also my photo I am not very computer savvy ..... The vitamins are numerous NeuroPS, COQ 10, Feverfew, and a whole slew of others I am forgetting if you would like me to PM them I will...Definitely with an AN age is a huge factor in it which I should have done my homework I might have been the lucky one as Mike as to no growth in my 1 cm. But several of my doctors suggested highly for me to have surgery at the time I only had fullness in my ear and perfect hearing.  I started to faint a few times and that is why I had an MRI but the doctors still say fainting is NOT a symptom of an AN. Yes research and a great team is so crucial to ones outcome.

Best Wishes,

[LizAN]

pjb,

I'd love it if you would put your history in your signature, to give us some perspective.  Your surgery was three years ago?  Your tumor was 1cm at the time?  The residual hasn't grown in three years?  (Yea!)  What vitamins are you taking?

For a slightly different perspective, I was in W&W until recently.  The first 6 months, my tumor shrank 1 mm, and I became complacent.  The next 14, it grew aggressively, by over 50%, something I did not at all expect.  I lost most of my hearing during that time and started to have facial symptoms.  I'm not so sure I should have waited, as there may be some damage to my facial nerve, and maybe if I'd had middle fossa at House, I could have saved some of my hearing.  Hopefully, the damage to my facial nerve is reversible.

Personally, I think the most important choice is treatment team.  That said, I hope I don't end up with residual problems, now that I've made my decision to go to House for translab.  There are drawbacks to every choice, surgery, radiation, and even W&W.  None of us can predict the future.

Mei Mei, I am praying that things get much better for you and soon.

Liz

I have to try with my information I think if I remember right I was having trouble with that and also my photo I am not very computer savvy ..... The vitamins are numerous NeuroPS, COQ 10, Feverfew, and a whole slew of others I am forgetting if you would like me to PM them I will...Definitely with an AN age is a huge factor in it which I should have done my homework I might have been the lucky one as Mike as to no growth in my 1 cm. But several of my doctors suggested highly for me to have surgery at the time I only had fullness in my ear and perfect hearing.  I started to faint a few times and that is why I had an MRI but the doctors still say fainting is NOT a symptom of an AN. Yes research and a great team is so crucial to ones outcome.

Best Wishes,

Yes, please PM me the supplements you are taking.  I was taking a bunch and my tumor took off.  When it was stable, I was taking only a handful, so I have to wonder if something I added contributed to the accellerated growth.  I want to see what in my list of supplements overlaps yours.

Thanks!
Liz

[pjb]

pjb,

I'd love it if you would put your history in your signature, to give us some perspective.  Your surgery was three years ago?  Your tumor was 1cm at the time?  The residual hasn't grown in three years?  (Yea!)  What vitamins are you taking?

For a slightly different perspective, I was in W&W until recently.  The first 6 months, my tumor shrank 1 mm, and I became complacent.  The next 14, it grew aggressively, by over 50%, something I did not at all expect.  I lost most of my hearing during that time and started to have facial symptoms.  I'm not so sure I should have waited, as there may be some damage to my facial nerve, and maybe if I'd had middle fossa at House, I could have saved some of my hearing.  Hopefully, the damage to my facial nerve is reversible.

Personally, I think the most important choice is treatment team.  That said, I hope I don't end up with residual problems, now that I've made my decision to go to House for translab.  There are drawbacks to every choice, surgery, radiation, and even W&W.  None of us can predict the future.

Mei Mei, I am praying that things get much better for you and soon.

Liz

I have to try with my information I think if I remember right I was having trouble with that and also my photo I am not very computer savvy ..... The vitamins are numerous NeuroPS, COQ 10, Feverfew, and a whole slew of others I am forgetting if you would like me to PM them I will...Definitely with an AN age is a huge factor in it which I should have done my homework I might have been the lucky one as Mike as to no growth in my 1 cm. But several of my doctors suggested highly for me to have surgery at the time I only had fullness in my ear and perfect hearing.  I started to faint a few times and that is why I had an MRI but the doctors still say fainting is NOT a symptom of an AN. Yes research and a great team is so crucial to ones outcome.

Best Wishes,

Yes, please PM me the supplements you are taking.  I was taking a bunch and my tumor took off.  When it was stable, I was taking only a handful, so I have to wonder if something I added contributed to the accellerated growth.  I want to see what in my list of supplements overlaps yours.

Thanks!
Liz

I just saw this and sent you a PM...

[Mei Mei]

Hi Friends,
I haven't been online for a couple of days and am overwhelmed at the response of this thread.   I guess Titanium mesh is a big issue for all of us.   

I myself am in the group that wishes I had watched and waited.   I also wish that I had gone to HEI but was forn, first by having to take care of my father in Maryland and my dog Punky.   Looking back it sounds ridiculous because the 10 days that Dr. Friedman told me to stay was really  not much longer than the 6 days I stayed at Johns Hopkins.   It was something that Dr. Niparko said to me that pushed me over the edge and told myself to go ahead and stay with Hopkins.    After that retrosigmoid surgery there was no turning back in the constant care that I need.   I am on disability now and have 1/2 the monthly salary as before.   I am getting fitted for a bone conduction hearing device this week when before the surgery, I was down only 35 dB.   

Please, all pre-ops, proceed slowly.

To quote Dr. Kondziolka at the Cincinnati Symposium,  regarding age and time:
For those of you on the Watch and Wait list:  what are you waiting for   and
We are always happy to see our 90 year old patients walk in with their parents.

Mei Mei

[LizAN]

Hi Friends,
I haven't been online for a couple of days and am overwhelmed at the response of this thread.   I guess Titanium mesh is a big issue for all of us.   

I myself am in the group that wishes I had watched and waited.   I also wish that I had gone to HEI but was forn, first by having to take care of my father in Maryland and my dog Punky.   Looking back it sounds ridiculous because the 10 days that Dr. Friedman told me to stay was really  not much longer than the 6 days I stayed at Johns Hopkins.   It was something that Dr. Niparko said to me that pushed me over the edge and told myself to go ahead and stay with Hopkins.    After that retrosigmoid surgery there was no turning back in the constant care that I need.   I am on disability now and have 1/2 the monthly salary as before.   I am getting fitted for a bone conduction hearing device this week when before the surgery, I was down only 35 dB.   

Please, all pre-ops, proceed slowly.

To quote Dr. Kondziolka at the Cincinnati Symposium,  regarding age and time:
For those of you on the Watch and Wait list:  what are you waiting for   and
We are always happy to see our 90 year old patients walk in with their parents.

Mei Mei

Mei Mei,

I am so sorry for all that you are going through.  Thank the gods, you have disability, even if it is only half of what you had before!

If I end up disabled, I will be in very deep doo-doo, as I have no disability insurance in place.

Good luck with your bone conduction device.  What kind are you getting?

A year ago, I only had a mild hearing loss.  My tumor grew aggressively and now I have no serviceable hearing in my AN ear.  I had no idea it could get that bad that quickly.  I guess my denial system is still intact. 

It's kind of a damned if you do, damned if you don't scenario.

Hugs,
Liz

[Mei Mei]

Hi and thank you for your good wishes.
I'm getting a CROS which I don't think is bone conduction.   I also didn't want the Wifi version because that means sending radiation through my head.   He was very understanding and is giving me the wire kind so the device is put on the good ear and a wire goes through your hair to another device in the other ear.   The fitting will be on June 25.   Check my post on the Hearing section . 

The hearing aid should head my neck pain.

I'm sorry you lost all your hearing so quickly.    I remember Dr. Kondziolka saying   for those of you on the watch and wait list, what are you waiting for?   I hope you can come up with  a good solution soon.
Mei Mei

[LizAN]

Hi and thank you for your good wishes.
I'm getting a CROS which I don't think is bone conduction.   I also didn't want the Wifi version because that means sending radiation through my head.   He was very understanding and is giving me the wire kind so the device is put on the good ear and a wire goes through your hair to another device in the other ear.   The fitting will be on June 25.   Check my post on the Hearing section . 

The hearing aid should head my neck pain.

I'm sorry you lost all your hearing so quickly.    I remember Dr. Kondziolka saying   for those of you on the watch and wait list, what are you waiting for?   I hope you can come up with  a good solution soon.
Mei Mei

Thanks, Mei Mei.  I am glad to know there is a CROS with a wire.  Are you getting neck pain from trying to keep your head turned toward sounds?

I have the same concerns as you about the CROS wireless device, given that I suspect too many years of cell phone use may have contributed to my developing an AN.  I hope I am wrong about that, but... I am also concerned about a titanium implant, given the autoimmune issues I have already experienced.  Probably, one day, they will prove that fear is what really caused all my health problems.      Read the book, "Dying to Be Me" by Anita Moojani, and you will know what I mean.

I am scheduled for surgery at House on the 3rd of July, assuming we can get the insurance issues worked out.  House wants me to bring the full deductible required by my primary policy, which is 7 times higher than the one on my secondary policy.  I'm unwilling to give them money that I will later have to try to get back because I don't owe it to them.  Besides, that, I just don't have it.  I hope to get this worked out today, or else I will have to start over figuring out where and when I will have this thing removed from my head.

Liz

[lrobie]

Liz,

I just skimmed through these posts.  I wouldn't start taking any supplements now with your surgery scheduled for July 3rd.  The paperwork I received said not to take any herbal supplements 2-3 weeks prior to surgery.

Lisa

[LizAN]

Liz,

I just skimmed through these posts.  I wouldn't start taking any supplements now with your surgery scheduled for July 3rd.  The paperwork I received said not to take any herbal supplements 2-3 weeks prior to surgery.

Lisa

Thanks, Lisa.  Good point.  I haven't received my packet yet, and I'm getting concerned.

Liz

[mindyandy]

Liz
I didn't receive my packet till 1 before surgery.

Mindy

[lrobie]

I remember you saying that you received yours one week prior, Mindy  That's why I made sure to tell the scheduling counselor that I needed mine ASAP because I would be leaving more than a week prior to my surgery.  It did take a couple of weeks after I scheduled, but I did get it.

Lisa

[LizAN]

Rita said she'd be sending mine out in a couple of weeks, but it's been a bit longer than that now.  Does she wait until the insurance stuff is settled and a deposit has been sent in to reserve the date?

Liz

[lrobie]

My surgery counselor (Maria) was not the same person who dealt with the insurance (Yvonne).  Yvonne only verified that House doctors accepted my insurance.  It was up to me to contact St. Vincent's and the anesthesiologists.  I did not have to make a deposit, so I'm not sure what you are referring to.  I also had to contact Sunny, Dr. Friedman's assistant, to get a medical excuse.  So, I've been in contact with several people.  You would think that the surgery counselor should be assigned to take care of all your needs and not have to contact several people to get answers.  I also contacted my insurance company myself just to confirm all coverage.

I would try contacting Rita to ask if it's been mailed or what the hold up is.

Lisa