ANA Discussion Forum
Archive => Archives => Topic started by: pattibobatti on August 06, 2006, 12:01:13 pm
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thank you for this web site. I have been reading all your posts for 5 months now..I suppose I didnt want to be official, whatever that means! I first started reading the posts at the bells palsy forum and learned alot, but having an AN is much different
December 26, 2005, I began to have numbness on the right side of my face. I had hearing loss in my right ear too, but really thought that what happens sometimes as you get older. Wrong!! My daughter and I went to the ER and after havaing an MRI, they told me I had something in my brain alright.The whole family came to the ER and we were told ,Its not good........Funny how even after hearing this, my biggest concern was to comfort my children!!!!!They were sitting in a line next to my bed crying. I will always remember this. I spent the night in the hospital and the next evening my wonderful knight in shiining armour (my neuro surgeon), told me it was an AN and I would be fine ......My 23 year old son cried and cried and cried..I must have been out of my mind, because after a few minutes of telling me how they would perform the surgery, etc., I actually told the Dr. to SHUT-UP so my family and I could hug and celebrate!
Three weeks later, I had my surgery. When I woke up in the ICU, I remember saying to the nurse, "I"m not dead yet!" After 10 days in the hospital, I was moved to re-hab. Because the Dr."s had a diffecult time (11 hours) in surgery, I came out with total right side paralysis and because of the long surgery i would loose my cornea. I was in re-hab a month because of balance problems, but was THRILLED when they said I could go home. That is pretty much when my night-mare began.... My neuro surgeon kept me on the steroids too long (almost 3months). I never slept, maybe 1 or 2 hours a night. Each night I would clean out closets, organize anything, fix everything. This went on so long that I became steroid psychotic. No sleep and all these steroids and one day I lost complete touch with reality.There arent words to describe this.. and my poor family...
Finally off the steroids, I started dealing with the paralysis and my cornea. I had a cornea transplant. THey surgicallly closed my eye, except the very middle. Seven months and still closed.
Because I was on such a high dose of steroids, I developed avascular necrosis. This is a nasty desease that cuts off blood supply to long bones in your body..I researched AN and found the top guy , Dr. Mont , in Baltimore, to perform surgery on my hips. He thinks I have about 10 years and I will need 2 hip replacements.
After 6 months I decided to make an appt.with my neuro surgeon. I told hem everything that has happened ...Big step because I really was angy with him. Two weeks ago I had an emg and I have no activity on the right side of my face. I have scheduled re-animation surgery for Sept.25 with a dr. Patrick Byrne, again out of Baltimore. CANNOT WAIT TO SMILE AGAIN!!t
People tell me how amazed they are, how great my attitude is, how they could have never gone through all this. And they will continue to...But they can never know what we know. I feel so sad right now for me and for you and still enough of me wants to keep on keeping on. Thanks for reading my story..
Pattibobatti
ps. I chose that name because when my son and his best friend were in high school
together, they were ALL the time saying that!!!!!!
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Pattibobatti:
Its about time we met. What a story you have and such a good attitude to boot.ÂÂ
I too had lots of steroids (for Guillian Barre) many years ago. I just had my first hip replaced exactly two years ago and the second one 7 weeks later. Those two surgeries were nothing compared to the AN one. So don't live with the pain as long as I did. When the pain becomes the norm get the new hips. I was diagnosed with Avascular Necrosis in 1983 and was just too frightened to have surgery. Then, along came the AN and I lived so I decided now was the time to live again. I could kick myself for waiting and missing out on so much.
The steroids are necessary for a while. Did he say why he kept you on them so long?
Wow. Someone to talk to that had a AN and has AN. My shoulders need to be replaced too but that is way out for now. I can deal with that occasional pain and limited range of motion. Enough surgery for a while.
Denise from this board just had the facial corrective surgery on Thursday. She came through it just fine but won't see results for many months.
So glad you posted, Kathy from Minnesota
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Patti,
I'm so glad that you have "officially" joined. Your story was so sweet and helps me to be grateful for the lop-sided smile that I do have! Best of luck and I hope to read more of your posts and your progress. Keep your chin up ;). (And your family sounds great--so much love!)
Brittany
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Dear Pattibobatti,
Wow, what a powerful story! Thank you for sharing it with us. Your attitude is amazing! If there is help out there for you, you have come to the right website. We will do all that we can to help. There are so many loving and caring people on this website, we are like one big happy family. We all have are own issues but are willing to help one another when the need be. Hang in there, we are here for you. Ann
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Patti....congratulations on keeping a healthy attitude. I've had so many people question my chipper attitude, like I'm faking it. I'm a big believer in whatever doesn't kill you makes you stronger...you have been through a lot, so you must be pretty strong!!! I agree with Obita...I have a good friend who had both her knees and her hip done and although it put her down for a little bit, she's very happy to be rid of the pain...don't wait till it's killing you before you have it done!
So glad you've spoken up! I'm actually very glad I've had the surgery now so I can finally relate to all the posties and be able to talk to the pre-surgery folk about what they need to prepare for. So sorry you had to be on steroids for so long...I was lucky, I only had them for 10 days.
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HI Patti and welcome....
Ok, so being on steriods for 3 months is bad? UH OH...how do you know if you have the avascular neucrosis?
Patti you sound like a fighter! Thanks for sharing your story and joining our crew!
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Patti....glad you finally spoke up!! Welcome to group.....
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BattyP:
I'm sure Patti will post her symptoms if you are worried b/c of your steroid use.
AVN usually happens from taking steroids for a long period of time and alot of them. My experience was pain in one hip (much like a groin pull) followed by pain in the other hip months later. Normal X-Rays do show AVN but regular doctors don't seem to know what they are looking for. An orthopedic surgeon or a radiologist would see it on the films.
Avascular Necrosis is not very common. If someone is diagnosed with it the first question a diagnosing Dr. will ask is: "Have you ever taken steroids?".ÂÂ
When Dr. Levine told me I would be on steroids for 10 days of so after surgery I kind of freaked out on him for obvious reasons......then I thought back to when I had Guillian Barre - I was paralyzed from the waist down and the steroids cured me. The good with the bad I guess..........
Kathy
ps: when I was diagnosed with Gullian Barre the first thing that Dr. asked me was if I had gotten the swine flu shot........Yup, I did.....I am a magnet for side affects.
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Hi battyP,
Thanks for writing to me!!! The steroids that we took after surgery can cause avascular necrosis sometimes if taken too long or at a very high dose. My Dr. told me I got AN when I was taking my highest dose, at about 6 weeks out...Sometimes there is pain in the beginning, sometimes NOT. iIt's a very deep pain and mine was on both sides. The pain starts out because of the pressure inside the bone becomes greater with this desease. Obita, I have learned that until the desease is advanced, it will not show up on xrays..(I'm also an xray tech) but, it definitely will show up on an MRI in the beginning stages. It is so important to get diagnosed early because there is a simple (ha ha) surgery that can be done that will postpne the need for a hip replacement for several years. My Internist suggested I have a pelvis xray taken when I complained about the pain, thinking I might have AN. Can you guys imagine how I felt when I HAD TO INFORM THE DR. HOW TO DIAGNOSE MY OWN DESEASE !!!!!!
That's my story about that!!!!!
Pattibobatti
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Oh, I also wanted to thank each of you for the kind words....Like I said before, I already know each of you!!!!! And Gennysmom, you'll have to scoot over. Your blue and gold macaw now has competition. We have THE most beautiful (and obnoxious)mullucan cockatoo. I'll have to post pictures so we can coompare!! Pattibobatti
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Hi Patti - Happy ;D you finally joined us!!!
Cheryl
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Patti:
When I was diagnosed with AVN I had to have a arthrogram (sp) as MRI's were not around yet. That was a fun test. They shot me up with dye (into the hip from the crotch area - owwwwwwwwwwieeeeeeeee) then took the films.
Kathy
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hi Kathy,
I sent you an email a few days ago, did you get it??? I would love to chat with you about AVN. I have not met anyone who actually has it. Have you ever heard of a Dr. Mont?? Of course they didn't have MRI's back then , I should have remembered that. I still have some of that brain tumor left. Maybe that's my problem. I tend to use that excuse
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 hi Kathy,
    I sent you an email a few days ago, did you get it???  I would love to chat with you about AVN. I have not met anyone who actually has it. Have you ever heard of a Dr. Mont?? Of course they didn't have MRI's back then , I should have remembered that. I still have some of that brain tumor left.  Maybe that's my problem.  I tend to use that excuse alot!!
                                 Pattibobatti
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Hi Patty:
Welcome - and may God bless you as you face future medical challenges. You'll be in my prayers and those of many others here, I'm sure.
I never forget how blessed I am for having a neurosurgeon who was wise, responsive to my concerns and very experienced in operating on Acoustic Neuroma tumors. My successful surgery along with my rapid and near-complete recovery is a blessing that I will always be grateful for. Thank you for your contribution...the steroid side-effect information is very enlightening, and now we know you, too! :)
Jim
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 hi Kathy,
    I sent you an email a few days ago, did you get it???  I would love to chat with you about AVN. I have not met anyone who actually has it. Have you ever heard of a Dr. Mont?? Of course they didn't have MRI's back then , I should have remembered that. I still have some of that brain tumor left.  Maybe that's my problem.  I tend to use that excuse alot!!
                                 Pattibobatti
Patti: I did get your email. I sent a reply to a yahoo address?? I just sent it again to your hotmail address..........I don't know Dr. Mont. I am on my third orthopedic surgeon - two have retired. Thats how long I have had AVN. Talk soon, Kathy
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Patti....please do post the photos!!!! I also have a blue mutation quaker and a parrotlet. I've had a cat and I have a dog, and there's just no comparison to companion birds. Dogs can't say "I love you" when you're tucking them in at night. Does your cockatoo talk?
And please do join us nutty folk on the good morning thread. It's been sooooooo good for the psyche.
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OK Girls - I gotta know something. Don't the birdies hurt your ear(s) when they screetch? My friend has a parrot and I only see him once a month or so. Don't get me wrong, I love birds and I truly love this one but his voice makes me cringe since I lost my hearing in one ear. My guess is it wouldn't bother me if he was my pet? Kathy
ps: My Golden Retriever does say she loves me. She is just so quiet I can't hear her. ;)
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My parrots are currently driving my mom insane...she's still here 5 weeks out because she's the best mom! I think it is because they're mine...my macaw has this toy she hits and screams at (that's how they work out their frustrations) and it doesn't bother me...but my mom who's fully hearing freaks out. Plus, I swear, my tinnitus will drown out most sounds :D
Anyway, they are loud sometimes, but usually briefly so, so it doesn't bug me too much. Much better than sirens or train whistles. Or that loud thumpy base that comes out of cars from kids that will be deaf later in life.
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Gennysmom,
You sound so good in the e-mail!!That's great. I reallly hope things are going well. Tell your MOM that she iIS wonderful for taking good care of you.
Grace, (my cockatoo) is such a big paart of our family. She has the sun room to herself, so alot of her loud discussiions aren't too bad..Her new thing is to go up to the top of the stairs and then s-l-i-d-e down the railing!!!! She reallly is too much.
We had a green wing, but she died about 4 years ago.. Two big birds in a house.....that's another story!
Have a nice day recovering.
Pattibobatti
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Wow-pattibobattiwench--just read your story for the first time--you are one tough Wench! Just how we likes 'em! Like I always sez, ANs ain't for sissies! You have such a great attitude. I hope your experience can benefit others on their AN journey, I know your attitude will!
Welcome aboard!
Capt Deb 8)
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I do think they're going well....all and all I'm pleased with my recovery. I think I got lucky.
I like Greenwings....but you know how birds are...kind of like cats...they seem to find you. There's a pet store by me and I'm coveting a Derbyan that they have....she's gorgeous. And she really likes me. But I have no more room. I also volunteer (well, until I got the diagnosis) at a wildlife rehab center and have had the opportunity to handle eagles, hawks, owls, and songbirds. I'm a bird fan all the way around. Playing tug-o-war with an eagle is very cool!!!
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Hi Gennysmom,
Boy do we LOVE our Gracie!! I was thinking that if you got a real big branch for them to dismantle, maybe they would have better manners while your Mom is there....I use those plastic straps to tie it to the top of the cage. Grace spends hours taking the bark off.
Still can't believe how well you are doing!! And, yes, you are lucky!
Pattibobattii
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Patti....been out for a couple days and back to see you have a photo of you and Gracie! Very cool! It's a small pic, but she looks gorgeous!!! Genny really likes the puzzle toys...the one that's the treasure chest is her favorite when it's filled with wood chunks. She will spend hours trying to get it empty. Then she regurgitates into it.
Hope you are hanging in there! I'm still thinking how amazing your story is....glad you've joined the PBW crew!!!
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Hey Gennysmom,
!!!!
Great to hear from you! Have people ever told you that bird people are weird?????
I have always heard that but now I think it comes in handy with all this pirate stuff!!!!
Grace brings alot of happiness to our familly....She is just too much!
So happy things are going well for you... Tell your Mom to hang in there !!!! When does she leave?
And telll me more about your Genny
Pattibobatti
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Hi,
Thank you for posting your experience. I am 27 with a 2.7 cm and have no clue what to do. I have met with many doctors and I never get the same answer twice. I would greatly appreciate it if you could tell me who your initial doctor for surgery was. If you feel more comfortable please email me at shanabee@aol.com. I am completely lost and wondering if I can also email you the names of doctors I have met with to see if you are familiar with any of them.
My prayers are with you.
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What area of the country is best for you to get treatment in? Where are you located?