ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: lifeisgood on October 12, 2008, 09:45:00 pm
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Hi,
I'm not new to the post regarding headaches. I've suffered face pain/headaches which have baffled several different doctors for 4 years.
I feel like I am going on a wild goose chase to find answers.
I am now full circle. My ENT who I visited as a last resort is sending me back to my Otologist who did my surgery to try to explain why I have these pains in my face. It feels like TMJ or clenching. I've been to the Diamond Headache clinic who put me on Neurontin. Did not work. They also put me on Topomax. Did not work. Imitrex was prescribed by me and it did seem to work temporarily. Most recently, I was put on another drug by another neurologist who my other surgeon (neurosurgeon) referred me to.
I feel like I was just released from my surgical team after the procedure. They don't seem to have the answers to my post headache pain.
Does anyone else feel this way? I really liked and respect my team but when I was sent back to them again , I feel like they should be able to read my MRI's and explain to me why I am feeling like I am. I would at least like them to review my scan and acknowledge the scar tissue build up or something.
I just don't understand why the team of surgeons who removed the AN can't explain what's going on with me. I am going there on Tues and hope to get some answers. I am really angry at this point in time and want some answers. I had a large AN removed (4cm) but want more info than "it was sticky and the facial nerve was very involved with the tumor.
Anyone else frustrated with the responses that they have received?
Am I being too reliant on the team who removed it to give me answers?
Mary
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Mary!
Yes, Yes, Yes, Yes....
This is exactly what has happened to me as well over the last 4 years. My surgical team have clueless. Up ntil recently I gave up on them. I've been left to wander on my own to find answers. PM do not give diagnosis. Headache specialists do not have experience and there is not much research in regards to these headache issues. You've probably read my threads. I'd finally diagnosed myself w/chronic post craniotomy headaches and point blank asked my Neurosurgeon if he thought I could have scarring/adhesions attached to dura. I'd noticed I had enhancing still where I'd had surgery 4 years ago. (I'm a former X-ray tech and likely have an easier time putting two and two together.) This got him thinking. Anyway he did tell me the enhancing is likely from scarring. At first he said this does not usually happen to people w/temporal fossa approach, mainly w/occipital approach when they did not use plates etc. Well..I do not have titaniun plate and I had an epidural abscess. Welll.....the bottom line I got 'em thinking outside the box. Another thing that helped me.... I got the a couple tapes from ANA meetings and listened to the headache lectures. This also helped me understand that there is little research about these type of headaches which is likely going to contribute to use not getting help. Mary, have you had a recent MRI and d o you have the report, if so what does it say?
Bridgie
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Hi guys,
A number of us have this issue with post op headaches. I've tried it all and to no avail. there is another alternative and have a look at some posts from Janet on occipital nerve surgery. She has had some positive results from this.
regards
Laz
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My impression is that ENTs specialize in diagnosing an AN, and surgeons in removing one, and oncologists in radiating one, but no one specializes in dealing with the after effects of having had an AN. They all pretty much just punt.
One exception would be some of the facial retraining people, who do spend some time on how to recover from effects on the facial nerve. There are probably some neurologists who can help with other nerve effects. The chronic headaches, though, seem to fall through the cracks, as Bridgie suggested. There is no one solution for all, but if you keep trying, you may find a clinic or doctor who can do something in your own case. Trapped nerve; dural adhesions; nerve blocks; something.
I wish you the best.
Steve
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My impression is that ENTs specialize in diagnosing an AN, and surgeons in removing one, and oncologists in radiating one, but no one specializes in dealing with the after effects of having had an AN. They all pretty much just punt.
agreed. I have many doing my follows up and most difficult to figure out which to use as the primary follow up. I have the radio-onc doing the follow up to make sure the brain booger is dead. I have the neuro-onc doing the follow up's for post-radio after affects (ie: balance/vertigo issues, headache follow up, etc). I have my primary care physician doing overall follow up and now, my pain mgt doc doing all pain follow ups (many know here that I have multiple ailments.... the pain mgt doc is working with me on these but is also following along post-radio for my AN)
IMO, surgeons will do immediate follow up but not for long. I guess, to me, the question is... if they maintain follow up, how long should they follow up? Also, for me, I have a concern of those that fly to different locations to have treatments (regardless of radio or microsurgical) and then fly home. If there are issues, who should do that follow up?
Just my opinion.
Phyl
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THank you all for responding.
Yes, I had several post surgery MRI's, the latest being last June.
I am taking film in hand to see Dr. Wiet tomorrow.
I really love this doctor but really feel that more needs to be done to prepare patients post surgery.
I was told "your face will come back in 6-12 months". Not, but you could have all sorts of issues with headaches /face aches/migraines/TMJ like symptoms which will lead you to running around expending a ton of energy trying to find answers to questions which have no answers.
:)
Fatigue has also been an issue. I told him that 2 years ago and was told that I should be "back to normal" around 6 months post surgery and I should have other issues checked out to ensure that it isn't something else.
I know from posts that fatigue is common. All of my bloodwork came back great. I had my thyroid checked and we are monitoring some cysts every 6 months. I also have 2 kids. (3 and 5) youngest has autism so that sucks a lot of energy out of me.
I am fortunate to have the opportunity to be a stay at home mom and have a supportive husband. We spend time in Florida during the winter so my face gets a break from the cold.
I did see Jackie and liked her a lot. I guess nobody is going to be able to tell me how long this will last.
On the upside, I have no eye issues/balance is ok/ and MRI's are clean. I am also not debilitated by the pain on a daily basis.
They may hit me twice a month and last for 2-3 days. They are also hormonally impacted (period and ovulation). Imitrex will work most of the time. I also do motrin.
Hope to meet you guys next year at the symposium in Chicago. I've tried without success to get to past ones.
Mary
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Phyl poses a good question when she asks: "Also, for me, I have a concern for those that fly to different locations to have treatments ... and then fly home. If there are issues, who should do that follow-up?"
That was certainly a question I asked my New Jersey otolaryngologist when I decided to follow his advice and go to House for my surgery. He assured me that he would be able to handle any post-surgery issues I might have (and of course I would have certainly insisted that he be in frequent communication with House!) ... and I had enough faith in him to feel that would work out. If I had absolutely needed to, I wouldn't have hesitated to fly back to L.A. I am very thankful that I didn't have to deal with either of these strategies.
Catherine (JerseyGirl2)
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Regarding fatigue, I found out today that I am anemic. I have been complaining of fatigue for a couple of years. You would think that this would be an indicator to test for anemia. I have horrible heavy periods and they finally tested me.
Hoping that if I start taking care of myself and taking the vitamins and iron that it would get better.
Still, I feel good that at least I am addressing the fatigue. Hey, it's all related. Maybe the headaches are a spiral off the fatigue.
Wishful thinking.
:)
Mary
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Hi Mary,
It has been a long time. I am sorry to hear that you still have headaches. How often do you get them? Have you been to a neurologist? Dr. Armita Bijari is the person I'd recommend. She is also in Hinsdale.
You have a lot going on with two young ones and one with special needs. I am glad you finally found an answer of anemia which may be causing some of the fatigue.
Kate
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Yes, we have many factors that will affect overall wellbeing. We do not live in a petri dish so its easier for physicians to attribute our issues like fatigue, headaches etc to others things. I feel my doctors have less wiggle room to attribute my head pain to too many other issues besides the craniotomy since the problem came along when I was having a series of craniotomies. I'd had four craniotomies within 7 months!
Mary, if you are getting heavy periods and are now anemic, has your PCP or Gyn done an untrasound to check for things like fibroids?
Phyl, I'd traveled (400 miles) to have my initial craniotomy. I ran into serious life threatening complications post surgery. I did not have support locally like I should have. Its not that I didn't have a PCP or a neurologist and ENT locally, but no one rose to the occasion and as a result my complications were compounded. It was a nightmare.
Some things I'm currently benefiting from:
1) Last year I changed PCP. He runs a consierge practice. Its like a membership. I pay a fee once per year. His practice is limited to 350 patients rather then the normal approx primary care doctor/patient ratio of 1500 patients per doctor. He can spend more time with me when I see him. If I need to talk with him he's very accessable in a number of ways. He can take the time to help me research my condition. I can go on and on but I know if I got into serious trouble as I did, at least I know I'm not going to feel abandoned by my local doctors. My insurance plan is thinner then I'd like it to be. Frankly, its saving me resources ($) to pay this doctors fee then to increase the insurance coverage and help a big corporations bottomline.
2) I've worked hard to educate myself about my own anatomy and condition. I'm asking very specific questions that force everyone I'm dealing with to not dismiss me and simply tell me to go to a pain clinic or headache specialist. For me the occipital nerve block is not the answer as I did not have surgery in that region. The issue may or may not be related to scar tissue but I'm still asking for the surgeons to try to tease that issue out.
3) Hard for my NS to tease the answer out regarding the dura/muscle/scarring of the temporalis muscle. In order to determine if this is the problem prior to surgery they would need to inject numbing meds into the dura etc. If they tried this, it would numb up the brain too and knock me out. If I were knocked out I'd not be able to say if its working on the pain! So the only experiment is simply to go forward with the surgery. Its possible I will not benefit from adding the plate and untangling the muscle if in fact its tangled in the scarring and dura etc.
Once again check out the definition of "chronic post craniotomy headache." Specifially ask your doctor if he thinks this is what is causing your pain. Most become confused when you ask this. IMHO they seem to have this misnomer that in order to be classified as having a chronic post craniotomy headache you have to have the issue whereby the dura is attached to the occipital muscle. But in reality there are other reasons to classify CPCH. Its just that this occipital thing is the one that is easier to determine and there is a lot of documentation and studies regarding treatment. Plus normally they use titanium plates which helps prevent the headaches from being an issue as often as it used to. If you have a headache problem they will automatically assume (I'm assuming this) that its not something they can help you with and you need to see a pain person not them.
Anyway, if the doctor/surgeon says he does not know if you have CPCH, ask if you have enhancement (most current brain MRI) in the area where your surgery was. On MRI this is a brightness or defuse whiteness. You see for me I had a lot of enhancement when I had the epidural abscess four years ago. Now on the MRI last month the white area is much smaller, but still I get enhancement. This enhancement is like a reaction to the tissue in this specific area when they inject the dye. This lead my NS to have his assitant call me back and report my MRI was perfect, nothing was wrong and if I continue to get headaches I should see a headache specialist or go to a PC-- all of which I've been doing. Of course what he really meant was I do not have something acute going on that needs to be operated on emergently. If I hadn't known this I might have let it go as most here are saying happens to them ...or I'd have gotten even more frustrated. Insteed because he couldn't dismiss me so easily and I was being reasonable, respectful and rational, his assitant set up an appointment with the NS to talk with me directly. I'd also asked the assistant what he meant by normal..."normal as in normal or "normal" as in its not something NS could see something to operate on. And then I started asking about the enhancement on the imaging, stuff I knew his assistant couldn't answer.
At any rate, if you are getting enhancement (see radiology report) ask what its from. My doctor (NS) said it was likely scarring. This is when I asked if the scarring might be stuck to the dura causing pain.
I hope this helps.
Check headache classifications here on p.62. CPCH are the last type described here. http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf
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After reading through this site I would like to ask if it is at all possible to have this particular topic talked about at the Symposium. The frustration some patients go through going from one doctor to another (me included) and finding no answers is maddening and worse yet can be detrimental to recovery when we travel a great distance for our treatments.
I don't know if the ANA has anything in their info packet suggesting to patients traveling outside their town to make sure they have other doctors in town AND knowledgeable in vestibular schwannomas lined up in case they have post treatment issues.
This is my humble opinion, thanks. I'll go to the back of the room and be quiet now.
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No need to be quiet as you are very knowlegeable about ANs and it is too bad it is mostly due to what you have been thru. I think this is a very good idea as many who do attend are ones who have not had treatment yet and hoping they learn what may be best for them.
The ANA needs to know this so they can make sure is part of a general session.
Cheryl R
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It would be nice if I'd been supported when I was so sick w/complications. Pretty hard to advocate for yourself in the middle of the situation. I am sorry others are suffering here w/complications and are having difficulty getting help. But for a long time I've felt really alone in this, like I did not have a voice. Becoming deaf on the one side hasn't helped not to mention that basically what I've been dealing with on an emotionaly level has been features of post traumatic stress disorder. On top of that you get family and friends that think you are just acting up, attention seeking or a hypochondriac. A bone infection of your cranium and epidural abscess is not visible. A not so unusual complication of chronic diabetis is osteomyeliits (bone infection) of the foot. These type of infections are a nightmare to treat and often the foot is amputated. Well, they can't cut off your head! I had to fight this as hard as any cancer person fighting a cancerous tumor and malignancy! It took umpteen 400 mile trips back and forth to my doctors. It was as though I lead a double life and my situation to my local so-called supports was too out there for them to grasp and deal with. And just like people whom are clueless regarding persons struggling w/cancer and tend to say dumb things, welll...I could likely do a whole stand up comic routine regarding all the dumb things I've been told by a number of surprising resources that should have known better! So, yes this should be a call to arms. A discussion at the symposium os overdue!
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Hi Bridgie,
Sounds like you've had or are still having? your share!--very sorry to hear this. :(
The "invisible" disability is a tough one for many, and you do feel alone in dealing with it. I beleive Phyl recommended a book once upon a time about the invisible disability, try a "search" for it.
In the mean time, I think posting under a "new topic" about those funny comments would be in order as one could go to it for a good laugh!
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Karen,
My goodness, such a memory! :) Good for you!
Here is the info/thread regarding the book I noted:
http://anausa.org/forum/index.php?topic=6421.msg65226#msg65226
"Living Well with a Hidden Disability: Transcending Doubt and Shame and Reclaiming your Life" by Stacy Taylor, M.S.W., L.C.S.W with Robert Epstein, PhD.
Hoping it helps!
Phyl
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Well, I am not alone. The funny thing is my doctor is the host of the next symposium. I am going to print out this thread and bring it to my next appt. So much good advice and suggestions. I've learned more from this thread than from doctor.
Kate, I saw Dr. Bijari. Did not like her. She doesn't have a nurse for one so I can't talk to anyone regarding questions. I have to come into see her. I didn't like her actually. But thanks anyway.
Fibroids, I am going in for an ultrasound as soon as I can. So thank you for that. I am pissed b/c NOBODY even checked anemia since 2006 and I have been complaining of chronic fatigue for at least that amount of time.
I will bring my MRI in and ask him the questions noted above.
THank you all!
Mary
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Hey Mary,
going to share this with you as well.
There is a brochure that I shared here a while back re: "Brain Tumors and Fatigue". This is here, in a .pdf file (you need Adobe Acrobat or Reader to open the link).
http://anausa.org/forum/index.php?topic=3462.0
It has been found that regardless if a brain tumor is benign or malignant, fatigue tends to go hand in hand with it. The brochure was co-authorized by Dr. Peter Black (Brigham/Woman's in Boston) and Nancy Conn-Levin (I heard she did a recent ANA support group meeting on the East coast... NJ or such).
the brochure talks about how brain tumors and fatigue go hand in hand and ways to combat it.
As a sufferer of FMS (Fibromyalgia syndrome) or of CFS (Chronic Fatigue Syndrome), it can be truly dibilitating when coupled with a brain tumor. I have FMS and there are days that the fatigue is so bad, I am absolutely floored... can't move, only can close my eyes and want to sleep for days.
Hoping this brochure helps.
Phyl
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Thank you for the brochure.
Another document to bring with me to my next appt.
Fatigue was totally dismissed as being a symptom of my AN being removed.
Good pointers regarding ways to take care of ourself.
(As I sit here typing at 12am when I really should be asleep)
:)
Mary
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glad to help Mary... and hoping you got a good night's sleep.
Phyl
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BAck to original question...
My surgeon acted like the tumor was out and my worries were over...he iso longer my
doctor
Pre-surgery I had some dizzyness a few mild headaches and some hearing loss... things are definately
worse now and got little help from the doctors I trusted to be there... my PCP is great but limited in
what he can do other than finding doctors for me to check out ... and keeping me in hydrocodone to
knock out bad one when thsy happen...luckily only using around 30 in a 6 to 8 week period now instead
of 30 every two weeks ...but I still eat alot of Tylonal to take the edge off...
Normal things like bending over to pick something up ,sneezing ,coughing ,laughing (big belly laughs) can
all bring on a bad headache that puts me in the recliner or sometimes to bed... in between I feel OK... my
new OK that is a level of discomfort I can still function and don't look too different from anyone else...
there have been times at school when someone tells me they can see a headache coming by the way I
am holding myself or a look in my eyes ... close friends notice but for the rest of the world I have been
labeled by some as a complainer or slacker...
Thanks for the link to brochure ...saved it and also printed out a copy to mark up with my handy dandy highlighter
to hand to people who don't want to listen to my spoken word...
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Yes, Soundy, I think that once surgeons take out a tumor, they feel they are done with you. Probably not all of them, but I'm sure most of them feel that way. They've done their job, and that's all they were trained for. Sadly, I guess you have to start over and find the specialist that works with whatever problems you are left with - balance, pain, etc. You might look into alternative medicines - acupuncture maybe. I don't know if anyone has tried that on this forum, but it might work.
Frustrating, and it's too bad the surgeons can't refer you to specialists that handle these problems. How hard could that be?
Best wishes to you,
Sue in Vancouver, USA
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Hi Mary,
My surgery is not until the end of the month but I too suffer from very bad headaches. The doctors are hopeful by removal of my AN that the headaches will be reduced. I however, am fearful that they will increase. Let me know what happens.
Roger
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I had surgery at House and live on the east coast and did not have a hometown neurologist lined up to look after me when I got home because I didn't think I'd need one! It was just as frustrating for me as it was for Dr Friedman for us to be 4000 miles apart and for me to be too sick and financially unable to travel. Dr F was as supportive as he could be but his response was always, he'd be glad to see me if I could fly out there. Six months post op I was worse off than I was 6 days post op. I had to wait almost 2 months to get an appointment with my local small town neurologist and all my local GP, another unknown doc, (my regular GP had taken leave, ) did nothing but give me bumped up Tylenol.
I suppose I could have called Dr Rick and demanded he call this neurologist and get my appt moved up but I was pretty much out of my mind at the time! Hard to be your own advocate when you are out of your mind. Your loved ones are pretty much no help, they are so freaked out, too. Dr love just drove me to the ER and hoped I wouldn't stroke out and die in the car most of the time. It was a total nightmare. We felt totally alone and unhelped with no one to call and count on. Still do most of the time. And will continue to untill someone can explain to us why I have these brainwreck headaches and is there anything that can be done about them that is a permanent fix so I can get off all these meds!!!!!!!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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I too suffer from post surgery headaches. The fellow who performed my 1st surgery couldn't understand why I had headaches. I couldn't even get him to prescribe anything or return my frantic phone calls. Joining this forum put me in touch with a wonderful doctor and my family doctor is much more supportive.
I also had the pleasure of developing a scar neuroma and had surgery in July to remove it. Unfortunately I've been off on disability sine mid April because of brutal headaches and facial pain. At this present time I'm on neurontin, effexor, ativan and toradol. I've tried weaning myself of neurontin and it was disastrous. My family doctor didn't really want to fill out my insurance forums and thought I would never qualify. He misdiagnosed again ;)
Anne Marie
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I just don't understand why the team of surgeons who removed the AN can't explain what's going on with me. I am going there on Tues and hope to get some answers. I am really angry at this point in time and want some answers. I had a large AN removed (4cm) but want more info than "it was sticky and the facial nerve was very involved with the tumor.
Am I being too reliant on the team who removed it to give me answers?
Mary
Mary,
How did Tuesday's appt go with Chicago Ear?
I think headaches baffle the AN doctors in general. That doesn't make it any easier and headache pain wreaks havoc.
IMHO, the surgeon feels their job is to remove the tumor. After that, the responsibility transfers. At House, after surgery, while in California, patients keep in contact with Dr. Stefan who takes care of you post surgery.
What have some of the neurologist's told you thus far?
Kate
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Kate,
Very timely that you emailed today. I don't check this site very often.
I missed my appt with Dr. Wiet b/c I had the flu. Fever and all. Bummed to have missed it.
Can someone please tell me what this scar tissue neuroma is? How does it differ from a recurring AN?
I've had 4 MRI's and all were clean. The ENT did refer me back to Wiet to review my MRI just to make sure that the pain isn't being caused by scar tissue. I CANNOT IMAGINE HAVING ANOTHER SURGERY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The report post MRI all indicated no regrowth but I am wondering what the scar tissue is all about.
I think I made myself clear. I even chickened out of Breast enhancement surgery one week before the procedures.
I figured I didn't want to put anything foreign in my body.
Regarding headaches, I've been using my bite guard for clenching religiously for the past 5 days and no headaches.!!!!!!!!!!!!!!!!!!!!
yes, I knew this would help but it wasn't until I got desperate enough that I decided to use it. I felt like I was clenching all night long when I awoke.
I am also getting fit for an NTI appliance which is also great for migraine sufferers.
So, I need to get back into see Dr. Wiet. Will let you know what I find out.
I cannot say enough good things about this man. I think what everyone else wrote is true, this is their specialty and the follow up is up to someone else.
Mary
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Mary-
Its interesting Mary, I'd 1st mentioned "scar neuroma" now about 18 monhts ago or more on this forum and it seems this got going others to check in with their own doctors about this notion. My pain management doctor at Stanford figured this is one of the things that caused some of my pain issues. From what I understand and frankly others may by now have received other feedback from their doctors, but from what I understand, a SN is superficial scar tissue from the scar on the outside of your head from the craniotomy procedure in our case. The nerves have grown back funny and are maybe jumbled together and for me can even can be sensitive to touch creating zinger type pain if I touch or press the area. His "test" was to inject a local anesthetic to see if it helped even a short period of time. If so, they can try botox therapy for longer lasting effect. for me, he thought, this scar neuroma sometimes "fired" and would not stop leading to stimulating the "trigeminel complex" which lead to horrible migraine type pain. This was this particular doctors theory about my pain problems. Now I'm aware its a bit more complex. At any rate, a scar neuroma is not much like an acoustic neuroma.
Tricia
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This is a good question to add to the list when one is doing their research once the decision has been made concerning ANY follow-up's that my arise.
I think that is right. When I was asked why I went to Stanford for CK, instead of the newly opened place across the river in Washington, my answer was that while the CK itself would probably be the same, I felt better being able to call Stanford afterwards, if anything weird developed. The follow up care is there if it is related to the treatment, such as a reaction to radiation, or the possibility of regrowth. It is the the assortment of odd symptoms that sometimes develop that don't seem to get enough attention. But it is a good idea to consider whether you will be comfortable calling the place back after you get your treatment.
Steve
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I think making sure you surgeon is accessable is the first thing that should be done. In this you've all hit the nail on the head. Its important to establish before hand as much as possible what sort of communication line in regards to simple after care questions, but most especially in the event of complications. You want the whole package, a surgeon whom is competant but also one that listens. Perhaps do a little experimenting prior to surgery and note any red flags that tell you your doctor is or is not listening to you. Some complications (like mine) were insiduous but still life threatening and serious. There is a level of "denial" that goes on with all human beings involved. Some surgeons egos will not allow them to comprehend just how much trouble you are in. I thought I might help here and list some ideas I'd recommend based on my own experience w/serious complications post op and my operated facility not being local. (400 miles away) Frankly "it takes a village" more then most here I think are realizing or able to comprehend without having an experience to draw from. In otherwords, its hard to anticipate the holes in your own system. "System" being how you handle yourself, your support from family and friends, doctors attitudes, busyness level of doctor, willingness of doctor to listen and be accessible, your willingness to communicate concerns, local doctors involvement in your care, on and on. So hopefully some of my ideas here will help you shore up any holes. As I think of more ideas I'll come back here and add to it!
1. Have a local physician, either neurologist or primary care that will readily examine you and directly report concerns to your surgeons.
2. Have your op reports and follow up notes sent to your local physicians. If I have to, I'll have the reports sent to me and forward the reports to my local doctors. In fact, I keep my own chart. Anyway, keep you local docs in the loop. A break down in communications can contribute to problems.
3. After I see my surgeon for follow up I either fax or email my primary care or local neurologist to let him/her know what transpired.
4. Also I send my local doctors and long distance surgeons my own "update reports" either via fax or email when I sense something is off. I like to do all this faxing and emailing because it allows the doctors to read my notes when they are not in the middle of their frantic days and the message does not go thru their staff whom can often misinterpret my news --plus it forms a paper trail.
5. Make sure your own primary care physician (PCP) is not burnt out prior to your surgery. Make sure he/she is on the same page and will be there for you if some sort of emergency arises.
6. Find out how he/she (PCP) manages his/her patients if you do become admitted to your local hospital. Often (this happened to me) if you are admitted to a local hospital for a complication from surgery you'll be managed at the hospital by a hospitalist whom is a physician whom manages the hospital patients. Very often your own physicians will not have any involvement in your care while you are hospitalized unless he/she choses to confer with your hospitalist. These hospitalists can be wonderful but the problem arises because of further breakdowns in communications. Namely you can become twice removed from your surgeons care. Usually though they did call my surgeon or infectious disease doctor directly. But weird things and circumstances can alter this communication too. This happened to me when I headed to the ER on Xmas eve w/a rare reaction to the IV antibiotics I was on for the epidural abscess. The reaction mimiced a gallbladder attack, there was a huge disconnect between the various physicians whom were manageing me due to the holidays and I ended up unnecessarily having my gallbladder out on Christmas day. It was one of the most demoralizing experiences of my life. This is why I now have a primary care physician whom I can call via cellphone anytime I need to. Thru my medical crisis i came to realize just how disconnected my primary care physican then CHOSE to be! She was terrific one on one during office visits for regular issues but because my circumstances where "too esoteric" as she put it, she copped out. I'd done all the things above to make sure she was part of the loop and make it as easy as possible for her. One day when I was visiting and relaying a message to her from my neurosurgeon she blurted "I'm too busy, I don't have time to listen to you." She was not interested in understanding my care needs and there was only so far my surgeon could go. She was busy with diabetics, cardiovascular diseases, cancer, etc. I was a cast off.
7. If you are looking to get a better PCP perhpas visit your local ER at a time of day when they aren't so busy and ask the staff about primary care doctors whom they might recommend and see if they do come visit their patients while in the hospital. Also see if they have a neuroscience ward. Just a few days after returning home from my second craniotomy I was admitted in one local hospital and they seemed clueless about my care needs.
8. Have a friend or family member be your advocate. When it comes to anything surrounding our brains its sometimes hard to convince physicians of your concerns that things are not right. I'm a real cowgirl when it comes to pain. And I've never had any complaint that was not proven to be something. Your family or friends know you and can communicate this often better then you.
Like I said I'll add more hne I think of things...
Tricia
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Hi Mary:
Sorry for seeing your message just now - I don't log in that often. I am 7 years post op AN surgery (suboccipital) and still am dealing with headaches, although not nearly as extreme as even four years ago. I never had headaches until three weeks post op and they were so bad I just wanted to die. My surgeon was clueless about how to handle the headaches - gave me pain killers and told me that, if they persisted, he would send me to a pain clinic. The one person who gave me quite a bit of relief was a physiotherapist who specialized in headaches. I also saw an upper cervical chiropractor and, even though I thought it gave me relief, I now do not think that it made as huge a difference as my physio treatments.
My energy level is not near where it was prior to AN surgery but I have learned to cope with that issue. Prior to that, I was always out and about especially volunteering/visiting the elderly, etc. but I have learned to say "no" - that was a hard lesson to learn for me. I hope all goes well for you.
cecile
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I wanted to email an update.
Since my last post, I visited my neurosurgeon.
I explained exactly the pain , the location, the frequency and patterns of my "face pain:
He took notes and documented everything.
He was empathetic to my pain.
Told me he wanted to hook me up with all of the doctors that he thought could help me.
He then looked at me and told me that he didn't think this pain was connected to the AN.
He felt that since it didn't occur immediately after the surgery that it was caused by something else.
I about lost it. I actually did start to cry and he asked me if I had considered anti-depressants.
This is the shortened version. I think he really wants to help me, I just don't think this is the path I want to go down.
He did state that he wanted me to have another MRI to show the trigeminal nerve as well as come back to have a panel of his doctors evaluate my face.
A plastic surgeon was going to be there, a botox guy, and a few others.
I opted out since I was leaving for vacation for Thanksgiving and didn't want to postpone my trip.
Anyway, I did get botox today. Will see how that goes. I also wear my bite guard nightly without fail and now am using a NT 1 device which my dentist recommended for me for clenchers and now I am also a grinder.
I find it hard to believe that this is not the direct result of the trauma my facial nerve experienced from the surgery. I don't have it in me to battle it out or dispute it.
That's all I have got.
Wishing you all well.
Mary
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Mary,
I feel for you my friend. I too went through the same thing. I was told by my neurologist, neurosurgeons only operate, they do not deal with the after. A neurologist helps you deal with the pain, sometimes. Why is it that a lot of Doctors do not believe the nerves are traumatized from the surgery? Continue to ask your questions, get a second opinion if you have too.
I am on anti-depressants. I'm on Effexor and from what I have read about the drug it is also for pain management. This forum has been a life saver for me. I find the friendship, the support and the information has helped keep me sane because my facial neuroma has been very problematic. Hang in there Mary, rest up so you can battle. Keep us posted.
Thinking of you,
Anne Marie
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Hi all..........I too am agravated with headaches.....some worse than others. I am 4 years out from CK (Stanford.....Dr. Adler) initially I was given rounds of Decadron.....until I was "blimped out" .....about 50lbs overweight.......Then went the pain meds route,massage,hot packs to face,relaxation techiques ( as tension was very high) Recently had to seek help in the ER for pain (trigeminal nerve acting up) My tumor had begun to affect the 5th vestibular nerve just prior to CK) The facial pain was so intense, none of my "home remedies working".....called advice line and they told me to get to the hospital NOW.After examining me....they finally believed me and administered Ativan and strong pain reliver. Attending physician was "amazed" at my knowledge and ability to be my own advocate.I told her of my dilema and about this incredible site. She however was not well versed about AN's. ( I think I knew more than she) She was asking me questions.....don't they get ANY info on this during their education? Guess not. I have a headache today after a very restless night.....finally at 3:30 am took pain med and 5mg Valium.....it took about 1/2 hour and I finally began to get some relief and went to sleep. I think these episodes contribute to fatigue levels etc. Lack of good rest contributes to the rest of my post treatment issues. My coping skills go right out the window thus creating fear/frustration etc. I am about to be convinced the doctors really don't have the answers to our issues......if the tumor is dead or removed....they are happy with a WIN and in my case "aging process" (68) I'm not buying that one and told them so. Why then do "young" people have the same or similar problems? I have taken things in to my own hands and remedies that work for me (most of the time) Meds.....yoga...meditation....quiet time...and other relaxation techniques....with relative good luck. It's difficult, to say the least, but effective....most of the time. Good luck to all who suffer with this dilema.....keep on advocating for yourselves....don't give up....Use this site to it's fullest and ask questions about your concerns.....it is very beneficial. Maybe, if we continue to press doctors for answers, they will eventually try to educate themselves and give us credibility for asking questions.
Judy
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I guess I have been very blessed with two wonderful surgeons who listen and try to help. If you haven't checked into the possibility that a cranioplasty might help, please do so. I haven't had a headache now in 10 years, ever since I had the cranioplasty. It was suggested to me by Dr. Brackman and Dr. Hitselberger from House Ear Clinic in California at the ANA Symposium in Dallas Texas in 1997.
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Just an update, I tried the effexor which my AN surgeon recommended at my last visit.
It is working very well. I started having a "episode" last Monday and it lifted after I took Motrin.
These suckers usually last a few days.
On another note, I did receive a call from my surgeons office and they are inviting me to participate in a facial nerve clinic mid Feb.
I will be assessed by several doctors and hopefully some recommendations will be made. This is something that I was invited to attend in Nov.
Also, to clarify, the surgeon I have been referencing is actually the otologist. My neurosurgeon pretty much told me after the surgery that Dr. Wiet would be doing all of my after care.
Will status after my Feb appt. I feel better about the support I am getting now.
Mary