ANA Discussion Forum
General Category => AN Issues => Topic started by: Kathy M on September 01, 2009, 06:49:28 am
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Hi Guys! Yesterday, I went to see the neurosurgeon yesterday (2 weeks following my 3rd surgery related to infections from the AN surgery in January). The stitches came out and the incision looks better than it ever has at any point in the healing process!!!!! Could this be IT????? Dr. Tew is very well pleased. I think my body loves titanium!
Barring any nasty side trips, I will return to work on Sept 29. In the meantime, I going to work on getting my strength back - this journey has really taken a toll on me in the last few months. Fall is my favorite season, so I see nice walks in my immediate future.
Sept 28 will mark my one-year anniversary of the pronounced symptoms that finally caught my doctor's attention enough to refer me to a neurologist. From there, I begin lots of one-year anniversaries - one-year from diagnosis, one-year from first consultation...you all know them well. I intend to never forget them and do my best to celebrate them with a vengeance!!
For those of you who think you'll never be better - hang in there! We've just got to keep positive, keep trying, keep having faith, and above all else, keep doing all you can to get as healthy as you possibly can be and enjoy your life. I'm thinking that this 3rd surgery was my last for a very long long long time!
Kathy
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Kathy -
Dr. Tew isn't the only one who's pleased with this news ;D
Here's hoping this is your last surgery for quite some time.
Jan
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Sounds promising. If anyone deserves to be done with their surgery, you do, Kathy. You have been very patient. Fingers crossed!
Steve
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Kathy,
I'm so happy for you. I hope this is your last surgery period enough is enough and you've already had too much. Stay well!
Best wishes,
Wendy
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Congrats, Kathy! It's been a long haul, but you've traversed it like a champion. Hang in there..
Regards,
Brian
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Really good news, Kathy! So happy it looks like you're finally at the end of this thing - best of luck as you return to work later in the month!
Cindy
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Kathy,
wellness hugglez and wishes running amock and abound... great update and let's keep you on this healing path! :)
Phyl
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Kathy ~
Ūber congratulations on your progress! It definitely looks as if you're finally done with surgeries - hopefully, forever! I applaud your decision to try and get your strength back and for returning to work in a few weeks. Walking is a very good exercise and in the pleasant autumn weather, therapeutic. Well, it was for me. I also echo your advice to other AN patients that patience and determination as well as a positive 'can do' attitude are all critical to 'coming back' from AN surgery and any related problems. It does take time, but time passes and with work and some spirit, ultimately, we can surmount the obstacles, regain our normal life and enjoy it for many years to come, as you will. Well done!
Jim
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Great news...Nothing beats a nice walk in the fall.......the smell of the earth is very soul soothing
JO
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Kathy,
Congratulations! Always great to hear great news. Continue with your good recovery.
Vivian
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Yea, Kathy!
That's the spirit. You are in inspiration to others :)
No more surgeries!!!!!!
Enjoy the beautiful midwest fall weather and get out there and walk, walk, stop and smell the fall leaves..... (Might have to wait a month on that).
I grew up in K.C. and still vividly recall those gorgeous colors.....
Maureen
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You all just warm me up like a soft blanket (and that feels really good this morning in Ohio!!!). My incision is now completely sealed up, not a sign of nastiness, and there seems to be some hair trying to grow on the spot that has seen so much misery with infection and surgeries and debriding. In two days, count 'em "2", I can toss out the baby shampoo and use my own hair care products - not that I'm counting or anything - since January 10, I have only used my own products for about 4 months out of the year - the rest of the time, I've been battling this lousy infection, prepping for surgery, or recovering from surgery and have been relegated to using only baby shampoo. I am so excited!!!!!
So, for the next 2 weeks, I am trying to schedule every routine, followup, or necessary doctor's appts while I'm still off. My 6-month MRI (a little past 6 months due to my fixation on infections) is Tuesday - a bit nervous!!
AND - here's some words of advice for all....... I requested to have written records of all of my procedures, imaging reports, and referral info. Last May ('09), when I thought I was done with all of this, I was reading some of the reports and stumbled upon the original MRI report that initially found the AN (this MRI was done in Oct 08). The first 2 pages were devoted to the AN which, of course, caught everyone's attention. But on page 3, there were 2 paragraphs devoted to "evidence of subclavian arterial stenosis, both sides" that even I knew had nothing to do with the AN. When I asked my family doctor about this, he stammered and stuttered and then claimed he never got a copy of the report (which I don't believe) and referred me to a vascular surgeon. Yesterday, I had a test that involved 3 blood pressure cuffs on each arm, exercise, and pre-post exercise measuring of how long it takes my pulse to be heard at my wrist and upper arm when the cuffs are squeezed (my apologies to all of you who have medical expertise....that's my layman's explaination!!!). Anyway, apparently there is a blockage on each side and I followup with the vascular guy next week. That really irritates me - IF I hadn't asked for my written records, and IF I hadn't read them, and IF I hadn't asked questions, this would never have been addressed at all.
MORAL - we must be vigilent, persistent, inquisitive, and relentless when it comes to our own health and well-being. Don't trust that the health system will work as it should and that all diagnostic reports will be read and proper actions taken.
I am not concerned about the remedy for this particular medical issue tossed my way - there seems to be options to deal with it that don't sound too hideous. But anyway, I just wanted to share this with you and to give you all a gentle reminder to make sure you are doing everything you can to help your medical professionals do what needs to be done for you. WE ARE WORTH THE EFFORT!!!!!
Have a great weekend all!!! Love you bunches!!!
Kathy
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Kathy ~
I was dismayed to read about the arterial stenosis your MRI revealed and that you discovered when reading your '08 MRI report. I would consider changing your PCP if he not only didn't bother reading the MRI report but probably prevaricated when you called him on this rather glaring oversight. However, I'm relieved to learn that this issue won't be a major problem for you. Your admonition to all of us to be proactive with our medical care is well taken. Thanks for the update, the good advice and the kind words for our members. I hope your weekend is a good one, too. :)
Jim
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But on page 3, there were 2 paragraphs devoted to "evidence of subclavian arterial stenosis, both sides" that even I knew had nothing to do with the AN.
I think I would tend to be forgiving of your doctor for overlooking this, for a couple of reasons. One is that MRI reports frequently contain some routine comments on other indications. When there is big shiny tumor in the middle of your head, it is pretty easy to ignore everything else. Another is that doctors tend to focus on diagnosing what ails you. Your symptoms at the time were from the AN; in fact without those, you would not have gotten the MRI, and the stenosis would not have been reported. That is not the ideal way for health care to work, but it is the reality these days.
I'm glad to hear that the narrowing of the arteries under your collar bones (I think that is the translation) will not be a big issue to deal with, and I know you will remain vigilant, persistent, inquisitive, and relentless regarding your own health care. ;)
Steve
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HI Steve,
I am so respectful of the enormous job our medical professionals have to care for all of us. And, if I hadn't had other dismissals over the years from professionals here in my small town, I would certainly give my pcp a "pass" for not paying attention to the rest of the MRI report - when you find a large AN that takes 3 pages to describe and assess, that should be the showstopper! But, after years of misdiagnosis and dismissals from various physicians, including my pcp who last fall said "Well, dizziness and balance issues are tricky" and then went on to prescribe me an antibiotic for a sinus infection and sent me on my way, I have lost some of my natural patience and understanding when it comes to health care!!! The icing on the cake for me was the ENT he referred me to just before the MRI report was completed after hearing about my symptoms (balance issues, slight hearing loss increasing in severity over the past 7 years) - the ENT said I had a gait dysfunction and was referring me to a speciallist who would teach me to walk properly and what shoes to buy. Then a few days later, the MRI report was sent to them and the rest is history!
AH well.....all things happen for a reason, right? I am seeking another pcp!!! And I vow never to just "settle" or have faith in a medical professional when it just doesn't sound right! We all make mistakes (and I'm right up there with the best of 'em!!), but I really hope that I've learned the right lessons from all that I have been through thus far.
Kathy
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AND - here's some words of advice for all....... I requested to have written records of all of my procedures, imaging reports, and referral info. ...Anyway, apparently there is a blockage on each side and I followup with the vascular guy next week. That really irritates me - IF I hadn't asked for my written records, and IF I hadn't read them, and IF I hadn't asked questions, this would never have been addressed at all.
MORAL - we must be vigilent, persistent, inquisitive, and relentless when it comes to our own health and well-being. Don't trust that the health system will work as it should and that all diagnostic reports will be read and proper actions taken.
Amen. We must persist. I asked for my MRI...it was being dismissed as flu. Doctors are humans and depending on their exposure to different ailments, you get different info...some misleading as you found. (shoes and gait intervention). He was treating the symptoms and not looking at the causes.
I am glad you asked for your copies.
Kate
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Hi Kathy,
Glad you are doing well but think you should have a serious talk with your docs on that original report. I had a similar wording on my report., something about a old 1 cm. infarct in the thalmus. My surgeon sent me to the vascular lab before even doing the surgery as it could have been a stroke risk. Mine turned out to be a blockage on the right carotid. He felt since the AN was on the left side we could proceed and he did. On the report which he gave me it said follow up with another doppler scan on the carotids in 1 year. My pcp was insisting I go see a vascular surgeon but I pointed out that the vascular lab said follow up, not vascular surgeon. I guess he is the opposite of yours, trying to push me there and I wont go. I did have the follow-up and it is still the same amount of blockage and my pcp is still trying to push me there but my surgeon agreed to keep up with the follow ups which I will do. My surgeon had even pointed out numerous TIAs on the MRI and this was all before surgery. I'm really surprised your surgeon didn't look into this before the surgery. Thank God everything turned out alright. You have really got to be proactive with your own health and it is good that you are.
Take care,
Lois
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Kathy,
In defense of PCP's, in my case she was the only one that tried to help. The healthcare system in general is overworked. I was sent to ENT's 3 times, a neurologist and had 2 MRI's. Everyone said I was fine, maybe had a virus that would eventually go away or the best one was when the neurologist told me to "dye your hair blonde and become a dizzy blonde because there is nothing wrong". After my second MRI found the tumor they re-read the first one and realized they had missed the tumor the first time. We all know our bodies-don't give up until you get an answer that makes sense to you.
Jill
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Jill ~
"Dye your hair blond and become a dizzy blond because there is nothing wrong". That kind of belittling, absurd response from an educated, licensed physician is equally infuriating and pathetic. We could have quite a long thread comprised of nothing but ridiculous 'diagnoses' and condescending suggestions on how to deal with what we (eventually) found out were AN symptoms from doctors that got it totally wrong - and charged for this misdiagnosis. I respect doctors and was fortunate to have an experienced, skilled and compassionate neurosurgeon handle my AN surgery and oversee the subsequent radiation treatment. I hold no animus toward anyone in the medical profession. However, as I read through threads such as this and see the numerous instances of misdiagnosis and often near-insulting comments directed at patients struggling with AN symptoms coming from medical doctors that should know better, I'm irritated. I understand that acoustic neuromas are relatively rare and some PCP and even ENT specialists aren't looking for or even have much knowledge about these benign tumors. Still, the number of wildly wrong diagnoses and sometimes flip comments from doctors, directed at patients who are suffering with increasingly severe symptoms, is simply unacceptable. Of course, there are wonderful, considerate doctors out there and all doctors share our humanity which includes being wrong and even insensitive. That reality doesn't make it any easier for the undiagnosed AN patient who is told to learn how to walk properly or that "there is nothing wrong" so "dye your hair blond and become a dizzy blond". I understand that comment was clearly an effort to be amusing but it made light of what should have been taken seriously by an educated, experienced physician. These accounts of doctor blundering once again demonstrate that , as others have said and I'll reiterate: we simply must be pro-active with our health care. I know this admonition has become almost trite at this point, but it's still valid.
Jim
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I'm holding back my thoughts on this until I digest the comment noted by the physician in question so I can better compose myself in my response... and trust me, it won't be pretty.
Phyl
Jill ~
"Dye your hair blond and become a dizzy blond because there is nothing wrong". That kind of belittling, absurd response from an educated, licensed physician is equally infuriating and pathetic.