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Old 04-02-2009, 03:17 PM   #1
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Perilymph Fistula

I have been dealing with Perilymph Fistula's in both ears for the past 4 1/2 months. If any one has any positive information for me that would be great. I am having surgery on both ears the end of April. I have been very depressed and I can't seem to get out of the depression. Sometimes I think I caused this myself and I am beating myself up about it.

Thanks,
Shawna

 
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Old 04-03-2009, 09:13 AM   #2
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Re: Perilymph Fistula

shawna- please be thankful that you know what you have and you have a dr. who is ready to help.

i suspect i have had a plf for 2 years now and i have gotten horrible treatment from my doctors. i even had an operation where they tried to find it but didn't patch my ear upon my request.

anxiety and depression can be quite common with plfs and just know that it's something physical and not related to your 'mood' at all.

you have luckily only had this for a short while. i know how difficult it is to live with it but you have a good chance of healing either with or without surgery.

if you need any pre or post op pointers i'd be happy to help out. i've had this for so long now i really have a grasp of what triggers my dizziness etc.

good luck and stay well,
christine

 
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Old 04-03-2009, 12:37 PM   #3
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Re: Perilymph Fistula

Any pre or post op pointers would be great. I can hardly live with it for the shortime I have had this. I don't know how you have done it for so long. I have no idea how I got PLF I have my theories that happened in the timeframe but I am still uncertain. I think that is what is really frustrating me.

Anything that would get me prepared for the surgery would be great. I am really scared of the surgery because you can mess it up so easily.

There is a doctor up here that specializes in PLF and vertigo.

Thanks for your help.

 
Old 04-03-2009, 04:01 PM   #4
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Re: Perilymph Fistula

geez. maybe i should travel to Alaska to get fixed :-) i'm in canada and it seems that many doctors don't embrace PLFs here.

i am lucky in a way because i can feel myself leak because i also lose CSF. so i know what triggers my plf to reopen and what doesn't. certainly take it very easy for as much as you can before the op and also after. most doctors say 6 weeks but i would try to push it to 8. even after you shouldn't be running to the gym and bench pressing...

some things that trigger my fistula to reopen is- lifting, yawning, opening mouth wide, chewing crunchy foods, twisting neck/head, using my arm in an extended position while lifting, pooping (use stool softeners), sex, having a cold, blowing nose, yelling or raising voice, bumping head, caffeine, chocolate, alcohol, crying or getting very angry etc.. etc.. of course there are the pressure changes too that affect a fistula- don't drink from a straw, don't drive with one car window open, avoid elevation, elevators, flying etc

now keep in mind that i am more sensitive because i haven't gotten patched up yet... but i think this can be used as a pretty good guideline.

don't freak out too much- as your body will always try to heal itself. make sure you're taking your vitamins like C, D, B. i also found i was low in iron so taking iron has also helped with my healing.

i dunno if i'll ever completely be able to 'fix' myself but i can keep things somewhat constant if i avoid the triggers.

i really hope you get some relief soon... keep in touch and let me know how it goes.

 
Old 04-03-2009, 05:22 PM   #5
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Re: Perilymph Fistula

That is alot of stuff to rembember. How do you deal with the nausea, headpain, eyes not focusing, lightheadedness, the whooshing in the ears all of the time. It is so hard to function. I have a wonderful 5 year old little boy and an awesome husband. Sometimes I feel like I let them down because of what happened. I feel like I can't provide for them the way I use to do and it bums me out. I want to do the things that I use to do. Now I am at a slower pace. I just miss the activities I use to do and just have a good night sleep.
I want to be the wife and mommy I use to be.

Take care

 
Old 04-03-2009, 05:32 PM   #6
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Re: Perilymph Fistula

i know what you mean. i'd struggled for 2 years. i have a 2.5 yr old and 4.5 yr old. i stay home with them and not work.. i feel so guilty that i can't do what i can normally do. my 2 yr old won't remember a time when his mommy was not normal.

i think i've compensated for a lot of the dizziness. the ear sounds, pain and stuff i'm use to. the dizziness usually just comes in the PM so i rely on my hubby then. i try to get out with the kids but don't push myself. i don't have any other social life and i don't feel like i'm lacking too much since i'm home with the kids anywho.

i do miss being productive and independent. i can't clean the house, paint a wall or just do all those things that need to be done.

i had to face the reality that there isn't a quick fix for me.. unless i fly to the us and pay 30K for an op and tests. so, until i decide what to do i am just keeping pace and praying that i can heal on my own.

i have to say i'm lucky in a way because i've lost 25% of my hearing. so i think a lot of my symptoms have gone with my hearing.. the rest i've adjusted to a bit... i get occasional dizziness, or disequilibrium and the feeling of 'doom' emotion is lifting.

other than that- good earplugs are a godsend.

 
Old 04-03-2009, 07:39 PM   #7
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Re: Perilymph Fistula

I went two months w/o a dizzy spell,after I was prescribed Meclizine,It is an anti-histimine and sometimes the simple things work. Good luck on this pesky dizziness. Bill

 
Old 04-06-2009, 12:45 PM   #8
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Re: Perilymph Fistula

Christine,
Have you heard anything from ajay66 on how is post surgery was still going?
I don't have the major dizziness just the light headedness. You have such a good spirit. I hope I can be like that because I have to push myself just to get out of bed in the morning and I blame myself every morning. I want my old self back I miss me. I might just have to get use to the way I am now. I just hope I don't sink deeper into this depression it won't do me or my family and good. My husband helps out alot around the house now. Before I did everything. I think that is ehy it is so frustrating. I really wish I knew what caused this to happen.
I want this surgery to work but I have just heard how hard the recovery is and it scares me a little bit.

I need to start being more positive, the negativity is just bringing me down.

Take care

 
Old 04-06-2009, 01:26 PM   #9
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Re: Perilymph Fistula

don't be hard on yourself... i've been to h#ll and back so i guess that's why the 'positive' approach. i also lose CSF so when i don't lose that i'm pretty happy that my brain is just staying put.

keep in mind that we could be a lot worse. one always think why or how could this have happened.. but we are not invincible and i am just so thankful that i can be around for my kids, i can move, i can laugh, i can eat etc.. etc.. it's the little things i guess.

i emailed ayjay66 a while ago and he seems 'cured'. if you search on his old posts he mentioned he really rested for 8 weeks post op. he also had a very experienced dr. who dealt with PLFs.

make sure you research your dr. well and ask questions. ie. does he use fat to graft or connective tissue, what his take on bedrest after surgery? does he use stool softeners and diuretics pre and post op? what does he feel necessary? also does he put in a vent tube after surgery and how much packing and what type will he use? there are many things which will help with your post-op success but most important is the rest you need to do afterwords.

i know of a good dr. who seems to do the surgery very well but he's in the south... i'm still debating seeing him but since i'm in canada i don't have insurance so i'm really having a hard time deciding.

i don't usually feel dizzy but i do feel 'off' most days. it annoys the crap out of me because i am not the person i use to be. i know this is all related to my ear and i'd love for a quick fix but i dunno what's possible in my case.

ask your dr. if you can go on diuretics before your op to help you cope... you might find they make a big improvement in your mood. also try to follow the precautions and rest as much as you can. i know it's hard but you might be able to change your mood by that.

i know how hard it is... i've been living it.. don't give up hope and just know that this is all related to your ear. try not looking back and 'what if' or 'how'.. try to focus on getting better and being there for your family.

keep in touch and if you want to send me an email feel free to do so.

xo

xtine

 
Old 04-06-2009, 02:36 PM   #10
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Re: Perilymph Fistula

The doctor does a graft from your own tissue. He has done a ton of PFL procedures. He does have me on diuretics right now because I had so much pressure in my ears. I have to have both ears done. I do have ventilation tubes in my ears already and he does want his patients to use stool sofener 3 days before the surgery and 10 days after the surgery. His success rate is pretty good. He said the ones that don't succeed did't follow the directions. I know my sis will be with me for 3 1/2 weeks for recovery if I need more time I can take the time. I just don't want to mess this up.

I know I should be thankful that I can walk around and be with my family. I haven't really laughed in 4 1/2 months, until last night that did feel really good. I drove the other day and that made me feel more confident. Especially if I want to take my son somewhere just him and I or pick him up. That made me feel good. My son is about to loose his 3rd tooth. He doesn't like it when we mention it. It will fall out when it is time.

Thanks.

Last edited by moderator2; 04-06-2009 at 02:56 PM. Reason: please do not post your email address in the public forums - instead, use the private messaging system

 
Old 04-07-2009, 11:16 AM   #11
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Re: Perilymph Fistula

The doctor does a graft from your own tissue. He has done a ton of PFL procedures. He does have me on diuretics right now because I had so much pressure in my ears. I have to have both ears done. I do have ventilation tubes in my ears already and he does want his patients to use stool sofener 3 days before the surgery and 10 days after the surgery. His success rate is pretty good. He said the ones that don't succeed did't follow the directions. I know my sis will be with me for 3 1/2 weeks for recovery if I need more time I can take the time. I just don't want to mess this up.

I know I should be thankful that I can walk around and be with my family. I haven't really laughed in 4 1/2 months, until last night that did feel really good. I drove the other day and that made me feel more confident. Especially if I want to take my son somewhere just him and I or pick him up. That made me feel good. My son is about to loose his 3rd tooth. He doesn't like it when we mention it. It will fall out when it is time.

Thanks.

 
Old 04-07-2009, 01:58 PM   #12
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Re: Perilymph Fistula

Quote:
Originally Posted by SHAWNA70 View Post
Christine,
Have you heard anything from ajay66 on how is post surgery was still going?
I don't have the major dizziness just the light headedness. You have such a good spirit. I hope I can be like that because I have to push myself just to get out of bed in the morning and I blame myself every morning. I want my old self back I miss me. I might just have to get use to the way I am now. I just hope I don't sink deeper into this depression it won't do me or my family and good. My husband helps out alot around the house now. Before I did everything. I think that is ehy it is so frustrating. I really wish I knew what caused this to happen.
I want this surgery to work but I have just heard how hard the recovery is and it scares me a little bit.

I need to start being more positive, the negativity is just bringing me down.

Take care
I received your friend invite, thank you, but I have said pretty much all there is to say, please feel free to read my posts, I have nothing more to add.

Bilateral PLF is extremely rare as far as I have been told by my doctor and it turns out some of my friends who had PLF surgery turned out not to have this condition, but I also have a few friends who have had successful PLF surgery and acquired relief and I am happy with my surgery, it worked for me, I think one major helpful thing in my case was it was picked up pretty quickly, so any real damage was halted AND it was the correct diagnosis. I am sure you know that many inner ear problems are very similar, so getting the right diagnosis would be needed for the treatment to work, this is easier said then done in some cases.

Sorry I can't be of much more help then that.

Best wishes

Last edited by ajay66; 04-07-2009 at 02:20 PM.

 
Old 04-08-2009, 11:24 AM   #13
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Re: Perilymph Fistula

Quote:
Originally Posted by ajay66 View Post
I received your friend invite, thank you, but I have said pretty much all there is to say, please feel free to read my posts, I have nothing more to add.

Bilateral PLF is extremely rare as far as I have been told by my doctor and it turns out some of my friends who had PLF surgery turned out not to have this condition, but I also have a few friends who have had successful PLF surgery and acquired relief and I am happy with my surgery, it worked for me, I think one major helpful thing in my case was it was picked up pretty quickly, so any real damage was halted AND it was the correct diagnosis. I am sure you know that many inner ear problems are very similar, so getting the right diagnosis would be needed for the treatment to work, this is easier said then done in some cases.

Sorry I can't be of much more help then that.

Best wishes
AJ,
Can you do everything you use to do before your surgery?

 
Old 03-15-2010, 07:36 PM   #14
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Re: Perilymph Fistula

Just read your comment. How did you do with your recovery? Just had surgery 4-10 and am in recovery now. What should I expect? Are you fully recovered? Thanks.

Vin

 
Old 04-09-2010, 12:30 PM   #15
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Re: Perilymph Fistula

hi xtine. your info is very helpful. you mention you know a good dr. in the south for PLF. i live in florida. could you let me know who that is? i have plf for 3 years and really need to get this fixed but am having a hard time finding what dr. is good at this. thanks very much, tom

Last edited by tomfla; 04-09-2010 at 12:31 PM.

 
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