ready to give up

[klangel]

hi it's me again, kerri angel, been a real long time since ive been on the forum. in that time i have seemingly exhausted every avenue of ways to alleviate my numerous debilitating issues as a result of my near 18 hour translab surgery june 1 2005. apparently everything that could possibly have gone wrong did! i have visited doctor after doctor with not many good results or good reports and am wondering if it would not be better to just be dead. at least there would be some peace and no pain. i actually feel i could get used to it all if it just remained static but it doesnt. the multiple random noises in my head are indescribable at times as well as terrifying. im tired of the constant eye , nose mouth chin twitching the headache that never dissapears, seeing yellow circles on everything, the tooth and bone loss from the clenching and trigeminal neuralgia, the humiliation of falling down and needing assistance even to shower,the strange perception of small sounds, the lack of understanding what people are saying to methe choking randomly for no reason, the swallowing troublesand the general lack of ability to do the things i love. folks just dont get it either, this includes my own family. my disabilities are invisible and therefore im looked upon as a normal person. oh how i wish that were true!from everything ive researched ive come to the terrible conclusion that every one of my 12 cranial nerves on the left side have been mauled. i envision them as a ball of tangled wire. i currently go to counselling which i thought might help me to at least develop some strategies to deal with the frustration and sadness i feel as well as the anger but it so far has proved useless because my therapist cant understand it any better than anyone else. i came sooo close to taking my life yesterday that im getting frightened. i used to love my life so much and now i can honestly say i hate it. i cant read or write anymore for any length of time because of my eye. its really messed up. i cant tolerate smells because my nose is messed up. i cant exercize, ride a bike or take a nice walk because my ballance is messed up and i leak csf fluid out my left nostril. i cant even wear my partial because of all the atypical facial pain, bone loss and jaw clenching. i never get any good sleep because the noises and the eye evoked tinnitus wakes me at least 6 times a night. sometimes i can be down for the count in bed for weeks at a time. i currently take trileptal for the face pain and it works somewhat but not entirely i also got my regular doc to give me some xanax to try to alleviate the anxiety attacks i suffer due to the fear that when a "bad" noise comes it may or may not ever go away. i go to chiropractic, biocranial, massage therapy and lymphatic drainage which all help but its always shortlived. i feel as if i'm now certifiable and no longer have any control over my life. i certyainly have no independence.theres alot more but this is getting far too long winded. bottom line is does anyone out there have any suggestions? my current neurosurgeon says ill probably be a likely candidate for gamma knife within the next few years as some of the tumor was left behind to preserve my face but im afraid of anymore procedures and ive already been told that they cant fix my issues.i'm broken and cannot be fixed.so very desparate for peace and quiet! does anyone out there know of a way to deal? running out of time, kerri

[Tracie MN]

Kerri,
My heart goes out to you.  I am so, so sorry that you are in such relentless pain.  The fact that you have reached out shows you have a deep well of inner strength.  You want to live. I pray that the human connection you need most comes soon, to take your hand and lift you out of this lonely place.  I would never pretend to know what you are going through physically , but want you to know that I have been where you mentally are right now.  I reached out like you and the help that I needed did come. 
This is a wonderful forum and I am sure more compassion, wise words and support are headed your way.   
 
If YOU TRULY FEEL YOU HAVE NO OPTIONS, THEN PLEASE GET TO AN ER OR CALL A CRISIS LINE.
They can help you out of crisis mode so you can move forward.

Please don't give up.
Tracie

[Jackie]

Oh Kerri,

I am so sorry that you are feeling so helpless when there has to be help out there for you!!! Where are you located?? I wish I could give you a big hug and let you know how much we care and want to help you!!! It sounds like your medical issues have overwhelmed you and what you are in need of is understanding and a willing soul to care for you! Please know that there are many people on this forum that are dealing with many of the issues that you are. I have not personally had any procedures yet so I can't help you with that but I want to extend a helping hand or direct you to someone who is close to you. Please let us help by telling us where you are. I will make a special place for you in my prayers that you will find some relief soon.
Jackie in Beaverton, Oregon

[wendysig]

 Hi Kerri,
I am so sorry to see that you are in so much pain, pysicially and mentally  and have to agree with Tracie, please do not give up -- getting to an ER or calling a crisis line is a great idea.  They can and will help you.  You say you are broken and can't be fixed, and while you have major issues and problems, I'm certain someone somewhere can help you.  Life is too precious to just throw it away, whatever you are going through what you seem to need right now is emotional support.  If you would like to talk, please PM me your phone #.  Where are you located?  I would be happy to try to help find someone who is medically qualified to try to help you if you let me know.

Hoping to hear from you,
Wendy

[Syl]

Kerrie,

Please don't give up. Is there a local AN support group in your area? Can you begin there?

I can't even begin to imagine the pain that you've been going through and for such a long time, too. There are so many issue that you have? Let's begin with the CSF leak. Have you had that for 3 years? Can the surgeons patch that up?

As for your balance...Can you get physical therapy? It helped me alot. To prevent the falls, do you need a cane to help your stability? Or is it that you have trouble seeing because of issues with your eyes?

As for the bad noises you mentioned that don't allow you to get rest...can you drown them out with something like a pump from a fish tank. I used to have a small fish tank and found the sound of the pump very soothing.

As for the Drs. who can't fix you..how about changing Drs.? I'm sure there are other drs. that could help.

Whaterver you do, don't give up Kerrie. Hang in there. Others will chime in soon with other suggestions.

I'll add your name to my prayer list.

Syl

[klangel]

dear tracie, wendy , jackie and syl,      hey thanks for the quick response to my verbose post. there is no support group in my area. i think if i started one it might be good. i am in clarks summit pa. on the side of a mountain. i am pretty rural but very close to scranton. i actually contacted veda for some info. because anyone w/ vestibular disturbance would probably have alot in common. i just dont know how to find folks that are experiencing this same or similar thing. i wonder if ana would have a list?also there are money issues as most of you who collect disability know. thats why im here. i used to live on l.i n.y. at the time of my surgery but could not afford to stay there. transportation is frequently an issue. i dont drive anymore my poor husband has to bring me everywhere and he is also disabled due to neck injury suffered from an overturned truck accident in 2004. infact i was taking care of him when i got my diagnosis. my surgeons were at nyu in n.y. pretty much after the 9 days in the hosp and the removal of the stitches they really didnt have the time of day for me. i sought out my own balance therapy and went for six mos. i do use a cane all the time and when i have the "bad spells i use a walker. i also use a chair in the shower.i went to radnor pa and to philly to see some docs but they cant help. once those darn cranial nerves are dammaged they say they cant fix em.no one wants to even address the csf leak because its too small and too hard to find so i do biocranial treatments which slowed it down a great deal but never fully mended it. kinda get scared if im ever in the er w/ all those sick people. er and docs here are not good prospects. even they agree that i know more about this than they do!as for drowning out the noises, i cant because they are not static. they change all the time. ive got upwards of 27 now. some i call my "friendly noises" theres usually at least 2 or 3 of those all the time but others defy description and do not fit the technical definition of tinnitus. its almost like an explosion in an electronics factory! ha! as for praying ive mostly decided there either is no god, he just doesnt listen or hes vengeful and mean. i cant even go to church because of the noise there and recovery from social gatherings is long and arduous.i am very isolated. i do attempt social things for the sake of my husband because we were always very social people but it takes a huge toll on me.the last neuro otolaryngologist i saw was supposedly some big wig in his field and even he never heard of the noises i described as being an effect of an surgery.i go with all my pics and lists and i think they just dismiss me as being a nut job! very frustrating.and yes i do want to live but i want to have a reasonable qol. i guess ill just keep trying until i cant try anymore. i just fear that its coming closer and closer. btw hugs are great i get em every week from my massage therapist and my chiropractor theyre the best!

[sgerrard]

Hi Kerri,

I am sorry to hear you are having so many troubles. Argh.

It occurs to me that you need a good night's sleep. Between the jaw clenching and the noises, you don't seem to get a chance. I think I would focus on getting something that would allow you to sleep well, whether it is over the counter, a prescription, or whatever it takes. Sleep is probably the best treatment for all those noises; it won't make them go away, but it will reduce them. Fatigue always makes tinnitus worse. There is not much to be gained by describing your noises to doctors; as far as I know, there is no cure for tinnitus, other than trying to get your brain to ignore it.

I have been a jaw grinder for some years, and find that using a night guard does help. When I wear it at night, the jaw muscles are more relaxed the next day, and less likely to grind away the next night. Both tinnitus and grinding are cyclical: they interfere with sleep and comfort, which in turn makes them worse, so they interfere more, etc. You have to try to break out of that cycle. I notice my tinnitus far more in the evening than in the morning, because I am getting tired again. So if you can break the cycle using pills, you can get back to a well rested state. Your body can heal better if it is well rested, so it is worth the effort.

Taking Xanax for anxiety should also help soften the tinnitus, and is probably a good idea, at least until you can sleep better. If you need to, don't be shy about seeking an anti-depressant to help you through the blues, either. Anyone in your shoes would understand why you might be experiencing some depression.

I don't know which of the medical conditions you describe can be addressed and which can't. For some of them, the best treatment may be getting healthier and better rested, and hoping that time will take the edge off. Various kinds of therapy may help specific issues, such as physical therapy for balance; a pain management or headache clinic for head pain; facial nerve and muscle therapy for the face.

I hope you decide to stick with it, that you find some ways to make it all more tolerable, and that you have a chance now and then to enjoy some good moments. It may not be as much fun as it once was, but there is still some joy left in your life that you have yet to experience.

Steve

[mimoore]

Hi Kerri,

{{{{{{BIG HUGS FOR YOU}}}}}}}

Wow did your email hit home. I did not expect the outcome that I had after surgery. I had facial paralysis so bad I had to close my part time business (owner and operator of a Salon )because I could not risk getting hair in my eye. I then started to think how could I go back to my job as a kindergarten teacher (honesty I thought I would scare children)?Would my husband still find my desirable? I felt like my life was over.

I slid down a slippery slope and became very depressed. I NEVER expected facial paraylsis, I was walking like a drunk, I couldn't hear out of my left ear, I have ringing in my ear so bad I think I am going crazy.  Lots have said don't concentrate on it and it helps, I guess somewhat but mine is so loud I keep thinking I can't hear because of the ringing, which I know isn't true.

Anyway you know the drill ... I had a hard time coping. I laid in my bed curled in a ball and cried all day. My husband would call from work and ask how I was? I wish I could have said fine but couldn't, I told him I thought everyone would be better off if I wasn't here. I was not trying to get attention I really truly believed it.
I started taking anti-depressants and sitting out in the sun. I needed help to change my outlook. I started to only say positive things, even though I only thought negative. Then things started to look different... okay so there is a new me..I can't do everything I used to ... but I will fight and get stronger and I will not give up.

Why? Because I am a mother and a wife and they want and need me in whatever capacity. I want to see my children grow up, give them advice, listen to the highs and lows in lives, see my grandchildren (don't have any yet) and tell my children everyday how much I love them. I want to hug them tightly. I want to lay in the arms of my husband on a lazy Sunday morning and feel the warmth of his body.

Kerri you need to fight, don't give up. It is hard to see clearly when you are in the middle of a muddy puddle. It will clear and life will unfold how it should. You can do this. Concentrate on small things... break your life into bite size pieces and concentrate on what is good. You are feeling overwhelmed and rightly so. Start making a list of things you are happy for and this will help to change your thought process. I understand, it sucks tons but if you keep telling yourself how much it sucks it will suck. Tell yourself everyday that your body is a wonderful healing machine and how much you love yourself, you will be amazed at how positive talk will help you improve. When someone asks how you are doing just say trying to get stronger everyday. Tell your therapist everything...lean on him or her. Push yourself everyday, just a little, and be extra kind to yourself. Fuel your body with healthy food, take vitiamins and exercise the best you can... Oh and certainly enjoy a treat you are worth it.

Okay you have just been mommed. We are here for you... read some threads.. you are not alone... talk to us and get the help you need.
Michelle 

[klangel]

dear michelle, thanks for mommin me! everything you said is true and i also have kids who need me. my daughter that lives with me now is only about to turn 17 so she does need her mom. its been real tough on all my kids. i have 2 and my husband has 2. his dont live with us but have felt the pain of all this and my 2 actually had to go live with their crappy father for 2 years because of this. my son is going to be 21 in march but he was only 17 when all this happened. and my daughter was 14. we had to sell our home and move out of the state to survive financially. that disability system is not easy!my girl did eventually move here with me but both my kids have issues because of me not being able to be a mom for so long. i feel as though ive cheated them in a way.im still not a whole person nor will i ever be. but on the good days i do try to concentrate on the many good things in life. and i also try to cry alone so as not to subject anyone to the despair i feel. anyway thanks for momming me i think i need that. i dont have my mom anymore.she died in 2000 of breast cancer. kinda good that she didnt have to see all this. i am currently facing a breast mri myself which is scaring me also but thats another storyim sure it will be ok and if it isnt theres really not much more anyone can do to me anyway lol! im glad i got back to the forum. people like you make me feel stronger. thanx! and also real happy you have such a great outlook.  kerri

[Captain Deb]

Kerri,
An unresolved csf leak can cause debilitating headaches as well as put you at risk for meningitis.  You have got to find a doctor to address this issue for you. I hope you find some relief soon.  This forum is a great place for information and support.  Please, please, please take care of yourself.

Hugs,

Capt Deb

[klangel]

hey capt deb, yeah i know i have a headache 24/7 that no amount of drugs will touch and am also afraid of menegitis but i really dont know what to do about it. sprung the leak the day after surgery and had all that nasty spinal tap stuff with the outlet in the back and the machine hooked up and all and they said it was resolved but after i was home awhile it started up again. my docs were far away and they did not seem the least bit concerned then i was going through severe financial crisis and had to concentrate on selling my home waiting for ssd and moving so whenever i did leak i would just walk around with a paper towel hanging out my nose. finally after i had moved to pa and became eligible for medicare cuz they make you wait 24 months to see a doctor i went right away to a neurosurgeon. he obviously knew nothing about an s but gave me a little cup and said to leak into it. haha. i told him it is sporadic and only happens under certain circumstance and actually asked him if he had a mop so i could mop his floor to leak! i guess he thought i was crazy and sent me packing. soo i tried again with a neurosurgeon  in philly ( very far from my home) and he sent me to a prominent neuro otolaryngologist with this among other concerns (also philly) and he told me this would have to be dealt with by the neurosurgeon! oh yeah back to square one! i asked him if it could be dangerous even if it was small and without so much as an inkling of emotion he said yes!well im not too sure where to take it from here. i cant keep going back and forth to philly its about 175 miles or more away for a pat on the back and a hearty handclasp and a sorry but we cant help you. fortunately its winter and it slows up when its  cold. plus ive really cut it down to a minimum by having biocranial treatment. what i was told was that because its so small it would be too hard to find! i dont think anyone wants to try and ive run out of doctors within my grasp!

[Cheryl R]

Kerri,     Does your nose just run esp when you are warm and or active or does it drip out in drips when you hold your head over for a period of time and it drips like a faucet.                   Just running is not always a CSF leak.     it being a drip,drip drip when you head is hung over is more likely.              I had a CSF leak with more surgery.      I do not do the drip bit but it runs alot when I am  active when it is warm.             My surgeon only says it will do the drip way to be a CSF leak.
it has been discussed by many of how the nose runs easy so am just curious if yours has been proven to still be CSF.                    You are thru more than enough and do need what ever help you can get.                          Cheryl R

[MAlegant]

Kerri,
I am so sorry.  I don't blame you for feeling the way you do, given how you feel.  There are good doctors out there--you just have to keep looking.  Pain management docs can be excellent.   I am also trying to find the right doctor to help me deal with the after-effects of surgery (mine are mostly trigeminal issues) and if you look at some of my other posts you'll understand that I understand a little bit of what you are going through. Chronic anything is not good and it sounds as if you have received a lion's share of problems.  Keep doing the things that do help--even if the relief is short-lived at least it's there. 

Hang in there,
Marci

[klangel]

hey cheryl,  nope no one has ever proven what it is. it drips like that when im gardening and just kind tickles and trickles when im moppin the floor lifting something or just get overheated. but its been alot less since ive been doing the biocranial which is a stretching of the duraafter i started biocranial treatment(and at the time we didnt know if it would make it worse ,better or stay the same) about a month in i noticed that every morn i would wake up with a clear dried film on the inside of my left nostril. i could actually peel it off like a wrinkly saran wrap. then that went away after about 3 months and now it only runs sporadically. so anybodys guess is good. ive been doing biocranial treatment for a little over a year now i go once a week in the beginning i used to go twice.i just wish whatever it is would resolve completely. and its only the left nostril. who knows?

[Jim Scott]

Hi, Kerri:

Your initial post was poignant and moving.  Like so many others, I wish I could reach out and fix these problems for you, but of course, I cannot.  Still, I'm glad you've chosen to visit the forums despite the terrible problems you're enduring.  I hope we can be of some help. The medical profession has obviously been less than helpful to you, which is very unfortunate but not as uncommon as it should be.  Please read and try to respond to and/or follow the suggestions you'll see here because some of our members have experience in these areas you're dealing with (CSF leaks, headaches, etc) and may be able to offer you something that works or at least point you in the right direction (to alleviate your pain).  I regret that I don't have much real-life experience with these issues and cannot offer you words that might change your situation in any meaningful way.  I can tell you that I consider you to be heroic in the way you've fought to retain your integrity of self during these past three years, struggling with these multiple, painful and debilitating post-op problems.  I doubt I could handle this horrific situation with the kind of strength you've demonstrated.  Frankly, your current state of frustration and sadness is completely understandable.  Perhaps I can't fix this situation for you but I'll definitely have you in my prayers tonight and every night.  I pray for relief for you as well as the strength to carry on in the face of extreme adversity.   You're very worthy of our affection, virtual as it may have to be, and believe me, you have it....more than you can know.  Please try not to despair, Kerri.  People love you and need you.  Remember that as with all things in life, this too will pass. 

Jim