ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Sobes on January 08, 2010, 03:12:35 pm
-
Hi Everyone,
Called my doctor today to let him know that my facial paralysis has gotten worse, etc. He had seen me on Monday and didn't want to give any steroids as my paralysis was only a level 2 at the time, but wanted me to call if it got worse and my eye wouldn't close so I called a few hours ago. The nurse just returned my call and said that she spoke with the doctor and he wasn't at all surprised that it had gotten worse along with the other symptoms and prescribed prednisone and valtrex. She said this is related to a viral infection that is very common after this surgery. Does anyone know what this viral infection is??? I feel a bit confused. She says it is very common and not to worry but I forgot to ask her what the infection is called, etc. If anyone could help me understand this I would really appreciate it. Thanks!!
Bren~
-
Bren ~
I'm really sorry to learn of this post-op complication. I hope and will pray for your rapid recovery.
Jim
-
Sobes, You do not have meningitis. I know there was a Missouri gal who also had this and her Mayo dr called it a form of Bells Palsy. Post op Bells Palsy, I can't remember. I did take Valtrex in the hospital for my 2001 surgery and maybe a few days at home but am not sure about the at home bit.. I did not have it with the rest of my surgeries. I think the Famvir and Valtrex are very similar. Each dr has their own protocol. So you will improve in time and just take care of the eye and wait it out. Not fun to end up with something not too common. Cheryl R
-
Hey Bren, the viral is for the caution of the virus we can be prone to that runs along that area in a dormant matter. It is shingles which is a type of herpes virus. No, trust me, I researched it too, not as creepy as it sounds. Put SHINGLES into search above and you'd get answers.
Even some doctors prescribe a virus med a few days before surgery (like Cheryl from NY got) to help prevent it.
I never got it, and they didn't give me that with the facial paraylsis after I had told them I just had chickenpox testing only a few years (to prove I never had it yet.....age 38 know). Sure enough, no signs of it at all, so I got those shots called varicella (which is in a similar category as shingles, etc) at that time when my son got the shots. SO, my doctor said my chance of getting the viral one should have been super low.
Glad to hear they got you on both because I don't remember that they could tell for sure which it was.
Good luck!
-
This never happened to me. I never heard of this or read about it on the Forum before - either it was before my time or I missed those threads.
I did have to shower and shampoo with Dial soap the morning of my surgery, but the hospital I was at requires that of all their surgical patients. My dad who's had numerous surgeries at various hospitals always has to follow a shower/shampoo routine prior to surgery.
Sorry to hear about this Bren. Hope things get better soon.
Jan
-
Bren -
From my understanding, the shingles virus can affect the facial nerve and cause Bell's Palsy like facial weakness. AN - the gift that keeps on giving...
I had a translab on 12.11.09. Immediately post-op and for 8 days I had good facial strength on my surgery side - probably 90% pre-op control. On 12.19.09, post-op facial weakness started. On 12.20.09, I lost complete control. I called the hospital and was prescribed prednisone and valtrex. So, it seems that prednisone and valtrex are protocol for this type of situation.
Hope that is of some reassurance.
Eli.
-
Yes, House gives Famvir for a few days for this reason. I have heard of other House patients taking it before surgery, but they had me have it (maybe during/day of? don't remember) and for the days immediately afterward. I didn't have any problems.
-
he wasn't at all surprised that it had gotten worse along with the other symptoms and prescribed prednisone and valtrex. She said this is related to a viral infection that is very common after this surgery
Then why aren't they taking steps to prevent it?
Future patients, inquire about this when you talk to your surgeons in advance.
-
I wondered that too Lilan...
K ;D
-
Hi Everyone,
What GREAT info!!! Thank you everyone! I would never have known about the bells palsy issue! It sounds like it must be that. But I must agree with Lilan and K...if they know this then WHY wouldn't they have put me on this stuff sooner or told me about it...grrrr. I told the doc on Monday (when I had my post-op) about the facial weakness starting, etc. He said if it got worse to call. So, I called yesterday and I am SO glad I did. The facial weakness hadn't gotten too bad but my eye wasn't closing good and I sometimes had a bit of difficulty swallowing. When the nurse called me back she said "Ok, the doctor wasn't at all surprised that you called and were having more symptoms. He said this is a common delayed viral reaction from the surgery and we are calling in some prednisone (40mg) and valtrex". I thought the same thing. If it is so common and he knew I would be feeling so crummy, WHY wasn't I put on this medication sooner. I was in agony all week!!! Even my headaches were worse and my neck was/is soooo stiff and sooo painful. I felt/feel like I'm in a strange fog (even stranger than usual lol). Ok, sorry...just ranting now. The frustration builds up sometimes ya know?!
Eli, my facial weakness began about 2 1//2 weeks post-op too :( I am grateful that it isn't worse than it is, but as most of you know, it makes so many things more difficult.
Question: Is Bells Palsy a virus then? This confuses me ???
-
Brenda~
If you are not shutting your eye all the way, are you taking all the precautionary measures to keep it protected? Do you need any help with that?
K
-
Sobes - I don't recall anyone warning me about the facial weakness issues when I was checking out of the hospital either. IIRC, it occurs in about 20% to 30% of the patients. Maybe the thinking is - since the odds are against it there's no point in adding one more thing to our list of stuff to worry about...
And, Kaybo is right. Take good care of your eye... I think she was the one who recommended Refresh PM to me. I use it about every other night at bedtime in both eyes. I wake up with the eyes feeling good but it takes a while to get the blurriness cleared out. My eye closes but not very tightly.
I think an interesting point has been raised here...
Obviously, some doctors are being proactive and prescribing the anti-viral before and immediately post-op, while some are waiting until an issue arises.
Off the cuff, I'm thinking that the "wait until there's an issue" group hasn't seen any benefit in adding additional medications until there is definitely a need and perhaps the "proactive" group is just covering all the bases "just in case."
I'm now wondering if there have been any studies regarding this... Or maybe the question is, where are the studies and what was the overcome.
Personally, I fall into the "don't prescribe it unless/until I need it or it's going to be of proven benefit" camp. I had an uncle with incredibly crippling arthritis. Ultimately, it was liver cancer from all the pain meds that proved fatal. Considering I'm only given one liver per life time, I like to care for mine as much as possible.
-
Hi Eli,
Very good points you make!!! Thank you :) As far as the eye goes (Eli and K) ...not entirely sure what to do. I put some of the goop in at night but that's about it. It closes a bit but not really...pretty much stays open but hubby says it seems a bit better since the meds started...I cannot tell myself. Not sure if it should be taped shut at night or if maybe an eye patch would be good???!!! My therapist gave me a few...she is AWESOME ;D and so are ALL of you! Thank you for "walking" and "talking" me through this. :D
<3 Bren
-
It seems like I'm always the one on the Forum asking the hard questions, but I can't let this pass - and I love playing Devil's Advocate ;D
Why is this whole idea of giving patients preventative meds prior to their surgery something that House does? Do they have a need for this because their patients have a higher incidence of this infection? I know they have a boat load of AN patients, but I don't think the incidence of viral infection post op is THAT great.
Do places other than House follow this protocol? Or are they unique in this? And if so, why?
I'm with Eli - don't give me something unless you find out I need it. It's like the vicodin the docs tried to pass off on me after I had my twins. It was just like "here, take this". I had no need for it, I didn't take it - I had a tylenol and in reality didn't even need that. This has happened to me in other situations also - docs trying to push meds I didn't need.
I remember asking my neurotologist if I should take some kind of antibiotic prior to my BAHA surgery. He was puzzled by the question and asked why I felt I needed it. I cited infection - shouldn't we be preventing it?? His response was, if you get an infection, I'll prescribe an antiobiotic. It turned out to be a great answer - I never got an infection; I never had to take the meds unnecessarily. Definitely my kind of doctor!
Just my thoughts on this subject,
Jan
-
I'm a House "alum" (Donnalyn's and my 2-year surgery anniversary is today, in fact) and I certainly remember taking the Famvir for a number of days prior to surgery and washing my hair (and they said to include the neck and shoulders as well) with pHisohex (spelling?) for a number of days prior to, and early morning of, surgery. Didn't really think too much about it and I assumed it was standard procedure. For what it's worth, I had absolutely no infection or any other problem after surgery, and two years post-surgery I don't even think much about it anymore, except for SSD.
Catherine (JerseyGirl 2)
-
Even if the incidence of this is 20-30%, it should be mentioned.
My doctor mentioned it, and also mentioned the risk of death, which is much less than 20%, but a risk nonetheless. All risks should be disclosed so the patient can make an informed decision about their course of action.
Why does this seem to be an issue only for some facilities? I asked my doctor before my surgery when we were discussing risks how many cases of this he'd seen in his own practice and he hadn't seen any. (now, this was almost 3 years ago when I had my surgery, so that may be different now).
I just wonder what they are doing differently that seems to increase the chances of developing a viral infection. Maybe they need to stop disinfecting their surgical instruments in the dishwasher in the cafeteria! (JUST KIDDING folks, I'm sure they don't really do this!)
Lori
p.s. Happy ANniversary Catherine and Donnalynn!
-
It is interesting how each dr and hospital has their own protocol. I do know that with many surgeries an antibiotic is given for a bacterial preventive infection and no sooner than 1 hour ahead of surgery. Sometimes just as surgery is starting. I have had that done to me and also we did when we worked. Ancef was the most used. Now the viral maybe is a different story and I am not sure of the answer for that one. As I said I took Valtrex in 2001 post op and none since. I've never had to do anti anti bacterial wash pre op and we didn't where I worked.
Cheryl R
-
At Baptist Hospital where I had my AN surgery, I didn't have to do the antibacterial wash first either. The nurse just scrubbed the surgical area with phisohex and what felt like a Brillo pad prior to surgery. Even the other nurse in the room said "Uh, they'll shave that area later, you don't have to scrub her hair off now!". :o
But at St. Thomas Hospital, same group of doctors, I had to take a Dial soap shower the night before and the morning of surgery.
Would be nice if everyone was on the same page, wouldn't it?
Lori
-
p.s. Happy ANniversary Catherine and Donnalynn!
Thank you!
Donnalynn, hope you're reading this and that you're having a good "second anniversary"! As we've posted before, Donnalynn and I never met each other while we were at House, but our husbands and daughters did and I remember mine talking about this really nice Canadian family they had spoken with a few times. While I still have some pretty vivid memories of my two weeks in Los Angeles, a lot of things are beginning to fade. Seeing pictures of the "Hollywood" sign bring back memories of my hospital room. Attending the taping of "Jeopardy" six days after surgery was a highlight of my stay and, even now, every night when we watch that show I still think about being there on the set with my bandaged head.
Catherine (JerseyGirl 2)
-
Jan raises a valid question as to why some facilities/doctors offer pre-surgery medications. I would venture a guess that they do so presumably as a preventive measure.
My very (medically) conservative neurosurgeon didn't prescribed pre-surgery medications and I never really needed any, post-op, other than Bacitracin for a mild incision infection that developed days after my discharge from the hospital and was quickly stopped with a few applications of the topical antibiotic ointment. Well, that and a few aspirin the first few days following my surgery.
Apparently, as Cheryl and Lori have noted, every doctor/hospital has their own, unique protocol for surgery patients. Some choose to take the preventative medicine route, others see no reason to prescribe/administer drugs to a patient without an obvious need to do so. This would make it a subjective decision, based on the doctor's experience and way of thinking about the issue and makes it clear that there is no 'right' or 'wrong' answer to Jan's question.
Jim
-
O.K., don't want to sound rude or anything, but for starters: Jan, I'm so surprised for as long as you've been on the site you hadn't heard of this before that I posted (almost seems like you mentioned that on one of my other posts, not sure)
Anyways, for anyone......USE the SEARCH area above. Put in VIRUS, try SHINGLES, try HERPES, whatever. There is plenty on this forum and even plenty if google the virus after AN surgery.
ELI, you asked if there are studies. YES, trust me I went through all the same stuff Bren is only weeks ago.......I'm a big research, computer person. After I asked my doctor after my delayed paralysis started "WHY didn't you just prescribe like some doctors do????" He told me of the studies where adding some of these drugs post surgery has shown an INCREASE in those who have had CSF leak and bacterial meningitis. Of course I HAD to research it when I got home because I was so upset that all docs don't just do the same.
SURE enough, I found the study. But, it was an increased risk of 5%. Studies were 20% of people without drugs, 25% with. I may have put more details on my blog, can't remember. Just know for a FACT there have been studies. Does hurt feelings some when others say things like never heard of whatever I might post, whatever, but I'm not posting my own opinions, fyi.
As for looking up things, like i say search here, but true facts (instead of just forum members thoughts) it's better to do a search on google or Mayo.com
Bren, please be sure to ask your doctors thoughts with follow up and post to us. Take care and hopefully you got my FB/email.
-
House is progressive and does a lot of studies, so they are often out front on things. So why not learn something from them? In fact, Dr. Brackmann authored the one quoted above, which concludes that they will continue to use Famvir and recommend others do the same. 5% is considered a statistically significant difference, and it showed greater reduction in patients receiving translab.
Personally, I didn't say everyone should demand it, but there is clearly enough info out there IMO to warrant asking about it. I had read enough about it pre-surgery that I asked in advance. The patient's previous viral infections or susceptibility, surgical approach and doctor's preference may all presumably play into what they recommend if they don't have a blanket policy.
-
O.K., don't want to sound rude or anything, but for starters: Jan, I'm so surprised for as long as you've been on the site you hadn't heard of this before that I posted
Denise S -
no offense taken.
I don't think you're rude - or anything - but just because I'm a forum "old-timer" doesn't mean I've read every post ever written. There are numerous posts here, especially those that relate to things I haven't experienced - like shingles - that I have never read. I do have a day job and parent two teenagers single-handedly in my "spare" time :D
This is a topic that piqued my curiosity - especially since I did nothing but shower & shampoo with Dial soap the morning of my AN surgery and I didn't encounter anything even close to a viral infection. The morning of my BAHA implant I shampooed and showered with my "normal" products; no infection there either.
I don't think this lack of anti-viral meds - or my subsequent lack of infection - had anything to do with my docs not being progressive. I think it's just a matter of doctor's having preferences and knowing what works for them and their patients.
Jan
-
Jan,
Your kids told me that in your spare time you sit around with your feet up eating bon bons. It's no wonder you have no time to read all the posts! :P
Sobes, true Bell's Palsy is caused by a virus. So the mechanical damage caused by the surgery which causes the facial nerve to not function properly is not really Bell's Palsy, although it looks the same.
Lori
-
Wow, lots of input and great information here!! It is ALL helpful to me and hopefully to others too :) The only thing I know for SURE is that I am definitely going to find out from my doctor exactly what kind of "viral infection" this is (I need to know for certain...shingles, meningitis, Bells Palsy, etc.). Whatever it is it has kicked my butt a bit :( My neck got SO sore and stiff and I was feeling just AWFUL within a few days. It was so strange as it was unexpected to me. I will most definitely pass along all the info from my doctor and will also ask him what he thinks of the "before surgery meds" as opposed to the "post-op meds" debacle...should be interesting. I believe the same as many of you that it is simply a "doctor's choice" and what they deem necessary and what they like to use as protocol according to their own experiences. I would sure have loved to know this info though...as he sure seemed to be expectant of it :( ya know?! :(
Lori...you cracked me up...haaaaaaaaa.."Maybe they need to stop disinfecting their surgical instruments in the dishwasher in the cafeteria!" bahahaha... wow...what a great laugh ;D
What would I do without all of my amazing family here!!!!!!!!!!!!!!!!??????????!!!!!!!!!!!!! You are ALL my survival...THANK YOU! Again, wish I could be better responding to you all for your wonderful posts but just don't quite have the eye power yet :( Soon, dear friends...I am confident :D
Want you all to know that I love you...ok, I know that is REALLY corny, but it is how I feel and so I am going to say it!!! I wear my heart on my sleeve, what can I say?! :D
-
I love you too, man...
K ;D
-
Part of the reason the online forum is so valuable is that the advice is constantly renewing itself. To get advice only from people who had surgery 2, 5, or 10 years ago would probably not include all that is done in surgery *today.* Posters should feel free to weigh in on current research (such as the above study, 1/2009) without being criticized.
-
As previously noted...... facilities all have their own protocols, so there is no right or wrong answer to this.... regardless of what HEI or other facilties suggest, it is up to us to follow up properly, pre-treatment, with our treatment teams to find out what their protocols are. As we know, no facility can fully prevent what occurs in their facillities and we do what we can to protect ourselves as best as possible. CrazyCat (Paul) developed MRSA during his AN hospital stay.... heck, my dad is required to take penicillin prior to dental work.
Do what you can to protect yourselves as best as possible.... yet, be realistic that not all infections can be prevented.
Phyl
-
Part of the reason the online forum is so valuable is that the advice is constantly renewing itself. To get advice only from people who had surgery 2, 5, or 10 years ago would probably not include all that is done in surgery *today.* Posters should feel free to weigh in on current research (such as the above study, 1/2009) without being criticized.
Another part of the reason this forum is so valuable is that many, many old-timers take the time to share their experiences with newbies - which in itself is extremely valuable. Without it, odds are great that I wouldn't be sporting a BAHA in my skull, which IMO would be a damn shame. And just because we may be oldies, doesn't mean we are clueless when it comes to how surgery is done "today" or the studies out there on the internet.
As far as anyone "being criticized" I just don't see it. Just because we have different opinions and care to express them, does not mean we are criticizing anyone.
Bren -
it's completely possible that your stiff, sore neck is just a result of the position you were in (literally) during your surgery. The docs position you - tilt your body and neck - so that they can get the best view of what's inside your head (in our cases an AN). My surgery was 7 1/2 hours and my neck was stiff and sore for quite a while.
Hope things get better,
Jan
-
Just reading about the prevention before surgery I have to take antibiotics before any dental procedures. I had surgery for 3 lipomas removed from my arm and now remembering I had to shower the night before and the morning of surgery with something the hospital gave me forgot the name. Now I had major brain surgery from a different hospital and was not anything to take or bath before ??? definitely every hospital is different.
Pat
-
To answer this for Brens sake and for others reading on this topic, I want to clarify that The HEI is the MECCA for research world wide for anything to do with the ear and brain and AN's . They are the ones who do the research and the ones that write the text books on this stuff.
While I have a lot of respect for HEI as a world class specialist in AN surgery and I certainly appreciate someone praising a place where they got good care and a satisfactory outcome, I have to call this kind of assertion that they are the sole source of AN wisdom knowledge for the medical community unsupportable. The fact that they have published blatant misinformation on radiation as a treatment option for years ( which over 50% of AN patients select) would immediately disqualify them from being any sort of a Mecca for all AN knowledge. Having scanned AN research for a number of years now, I have seen multitudes of studies on various aspects of AN's from teaching medical centers around the country, such as Hopkins, Pitt, UVA, Stanford , UCSF, etc. The Medical knowledge of AN's is built around the combined knowledge of all these contributors today, inclusive of HEI. While there are many early studies by Dr. House and Dr. Brackmann which set the standard on understanding and treating AN's for many years, I have not seen many, if any, peer reviewed studies submitted by HEI in recent years. Most of the "studies" quoted to patients are self reported and have not been subjected to review and critique by the medical community. Doesn't mean they are wrong or right, but it's a little difficult to claim to be the source of wisdom and light when you don't put your data into publicly available literature. ;)
Mark
-
I would have to agree with Mark. Mecca is a pretty strong word :)
Although HEI definitely has a wonderful reputation and can be called the pioneers of AN surgery, they are not the be all and end all of AN wisdom & knowledge. They are big contributors, along with many.
Jan
-
*sits back on sofa, watches the posts VERY carefully.............*
-
Leaving House and this specific question out of it, I think the Forum should encourage each patient to seek out current best practices and ask their surgeons about them. I can't imagine anyone arguing with that.
If the surgeon says "I don't do that because of X, Y, Z," you may agree with, or you may wish to discuss it further.
The worst case is that you have a more informed patient who may be less surprised at a given outcome.
Personally, I don't trust any doctor (yes, even at House :) -- or the many fine doctors I dealt with in Chicago) 100% because they are only human. I think you get a better class of treatment from any doctor -- or any car mechanic or plumber -- by asking smart questions.
-
I trust all my doctors (AN-related or not) 100%. That's why they are MY doctors. If I didn't trust a doctor 100% I wouldn't be his/her patient :) I also would never refer anyone to a doctor I didn't trust.
I agree with Lilan that all doctors are human (although I'm not sure they all know that ;) ) and they can't guarantee anything 100%, but medicine is an inexact science and I totally understand that.
Sorry for the hijack, Phyl. Back on topic :-*
Jan