ANA Discussion Forum
General Category => Inquiries => Topic started by: Tracy Lynn on April 24, 2010, 07:47:09 pm
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I first would like to say that I'm so pleased to see that this site is here.
March 22nd, I went to my ENT to have a hearing test as I've noticed significant hearing loss in my right ear in the past year and a half. I kept putting it off because historically, I had many middle-ear infections as a child. The ENT tested my hearing and told me I've lost 85%-90% of my hearing in my right ear, significant higher-tone loss.
I was going to Las Vegas with a group of friends on March 24th, so they managed to fit me in for my MRI on March 23rd. I left the hospital to get lunch, and I hadn't even ordered when the ENT office called me back in.
The ENT didn't pull any punches. I'm glad I had my aunt with me, as he just blurted out "So, you have a tumor".
We lost my grandfather in February due to mutliple forms of cancer. My aunt was his primary caregiver before he passed.
A few weeks ago I saw the Neurosurgeon and the Neuro-oticologist and the other doctors I can't remember.
My translabrythine surgery is scheduled for May 18th. Although I've told my family and close friends, it still seems unreal.
I am ecstatic to find a website that we can discuss such matters. Everything I've found so far as been so clinical.
The only way I've found that I can deal with the concept of having a tumor in my head is to name it Jean Claude. As stated below, I found it easier to refer to it as "Jean Claude" than as a tumor. He causes me headaches, its an unhealthy relationship, and he can't live without me. My surgeon has a sense of humor. I asked him if once the tumor is removed if he will shine a light into my head to see if my eyes glow like a jack'o'lantern. My friend called me morbid. I have convinced myself that this is my way of dealing with the anxiety.
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Welcome Tracy Lynn...bon voyage Jean Claude.
Sorry you have an AN Tracy, but welcome to the site. There are lots of very good friends here, so you can feel free to discus..
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Welcome Tracy-Lynn,
It is quite a surprise when you first find out that you have a tumor in your head. The good part is that having this kind of brain tumor is one of the best ones to have if you have to have one. My tumor was smiliar in size to yours. Now four and a half years later I'm doing very well. I have some after-effects from the surgery, but still do everything I did before surgery. Even found myself getting more physically active after surgery.
Glad that you found this group. It's a great place to share frustrations, questions, and anything else you may be feeling.
Again, welcome.
Jean
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Tracy Lynn .....
Just adding my welcome to this forum. Glad you found us. You will find here not only an abundance of information but much caring and empathetic support.
Be sure to send for the ANAUSA materials. They will answer many, many questions in a very caring, positive way.
You have a wonderful sense of humor that will carry you far in the days ahead. So glad you have a treatment decision and date ..... that is half of the most frustrating part of this whole thing.
Tell us more about where you are having your surgery, if you care to share that ..... and ask away!!
Best thoughts. Clarice
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Hey there, glad to see you found us!! I am SORRY you had to but this is good that you are here!! This is a great sounding board, so go ahead and ask tons of questions if you got them, vent, or just do lots of searching in the different areas on here!! As Jean said, this is one of the better kinds of tumors to have. I am sure you have found out by now these are mostly non-cancerous, and cannot spread into the brain. The main thing is to just take a deep breath and stay calm and just do your homework on this if you need to be better informed, try to get as many facts as possible. I know when I was at the hospital getting mine out, it was pretty obvious those who didn't know a thing about what they were heading into and those who did. It seemed like the panic level was much higher in those who didn't know much about it. I know you have scheduled your surgery already, for many that's the worse part...trying to figure what to do with that thing your head. I like the name for that...Never thought a tumor would be French though! LOL. Take care and let us know how things are going as you progress!
Jay
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Thank you all :)
I was diagnosed in Omaha, Nebraska. Which from what I understand has about 4-5 cases a year. I have complete faith in my neurosurgeon and my neuro-otocologist or whatever you call him. He's the one that told me "women are always *****ing about how much hair they will lose" when I asked abouthow much he would shave during the Translab.
I decided then that he has a good sense of humor and that we were a good match for doctor/patient.
Its a bit unsettling, as I turned 30 this past year. I had the appointment with the radiologist. He was a bit of a... hmm... saleman, he first tried to sell me on the option of radiation. Then he realized how large Jean Claude was and I think it wasn't until he saw the MRI that he finally admitted that radiation wasn't going to serve me.
I have researched as much as I could through so many sites, but it wasn't until recently that I stumbled across this site. For so long I was trying to find someone, anyone who had been through this process before me. I knew that someone would know what I could expect :)
Bless you all for your advise and support. I felt so alone.
So many coworkers have casually mentioned "well, its not brain surgery". Really? its darn close!
I play softball, not well I daresay, but I try :) When I asked the neuroo-oticologist whether or not I could play until my surgery, he told me that it would be a great excuse if I dropped the ball "My tumor made me drop the ball". I haven't used the excuse, but my first game was last week, and I had to be benched halfway through because I got really dizzy and had motion sickness, which was a first for me since the diagnosis.
The surgeons originally offered me May 11th. I turned it down with the thought that "I'm so not ready for this". I realize now that I will never be truly ready for this surgery. I realize that I may never be ready for it, but its past due.
This process has been especially difficult for my family as we just lost my grandpa in February due to cancer. Try as I might to explain to everyone that this is not cancer, they don't understand.
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Au Revoir Jean Claude. I've read in several places where patients are cathetarized (sp?) and the possibility of "lumbar drainage" to assist in the draining of some cerebral fluid to assist during surgery. I am quite worried about that. I'm also a bit concerned about the skiin/fat grafting from the abdomen. How much do they take?
I have also read about the possibility of facial palsy and the partial taste loss on the affect side of the tongue.
I am curious about how long people have been out of work or dependant on others. I am a very independant person and I do not relish the thought of relying on family for assistance.
I am a person who tries to fully prepare for everything I face. I tell myself that its my way of dealing with things, preparing myself for what I must do to heal, knowing what to expect.
Anything anyone could suggest is most helpful. I have not yet dealt with the fact that the surgeons say I will lose what little hearing I have in that ear. One baby step at a time.
Thank you all for any information you can provide.
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HI Tracy Lynn
And welcome to the forum.
I am just over a yr out of my translab. I can comfortably say I am 95% back to normal...The other five is having SSD, balance nerve on AN side dead and brain fatigue. I do have the occassional metallic/copper/blood taste. Plus there are times when I walk like a drunken sailor and tend to clip on the right I could have went back to work much earlier than what I did, but given my job (driving instructor), I took several more months off to make sure I was ready. I have cut my hours back as I due tire easily...I need to be in bed by 10pm...I normally work 3-11pm...
Do not let anyone tell you it isnt brain surgery. During the translab method, the brain is not touched but the dura (brain covering) is cut open and the brain is exposed. I think that is how it works...Someone will correct me if I dont have it right.
JO
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Welcome, Tracy Lynn.
AN surgery IS brain surgery.
I don't want to alarm you, but your AN is considered large and you say your neurosurgeon and neurotologist have only removed 4-5 per year. This is a very low number of surgeries and one of the top things the ANA recommends is that the doctors who treat your AN have LOTS of experiences. This is crucial.
So I have to ask. Did you consult with any other doctors? There many not be too many in your area who treat ANs, but sometimes when having AN surgery patients have to travel outside of their area.
If you haven't already, you should contact the ANA for their informational brochures - you'll find them to be very educational and a wonderful resource.
Catheters during AN surgery are standard - since the surgeries tend to be very long. You want to ask your doctors who insert yours after you are asleep, as the insertion can be painful for some. Removal is usually painless, so that can be done when you are awake - usually a day or two post op.
Some docs insert a lumbar drain during surgery in case the patient develops a CSF leak post op; some docs don't insert one unless the patient actually develops a leak post op. My doc is the latter group.
The skin graft - like the hair shaving - isn't a big deal. The docs only take as much as they need, which isn't a lot.
Jan
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The surgeons originally offered me May 11th. I turned it down with the thought that "I'm so not ready for this". I realize that I may never be ready for it, but its past due.
It's perfectly ok to say and admit you aren't ready. And it's ok to cancel, though as has been said, your tumour is on the large size so you mustn't wait too long. I canceled surgery twice because I got cold feet. I'm probably never going to be ready for it, but I'm with you. It's past due, time to get on with it.
Hence the frustration. I spent the longest time not telling anyone about my tumour, partly I think because subconsciously, if I didn't talk about it, it wasn't true.
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Thanks Jo :)
Jan,
I didn't say that my surgeons only do 4-5 surgeries a year. I said that in the city of
Omaha 4-5 are diagnosed a year. Yes, I've had a second opinion, and a third. I agree that it would be foolish not to.
Opp2,
I found out the day before going to Las Vegas. I didn't want to tell anyone until after my trip. On my family's urging, I did tell one of my friends prior to the trip (because what if something happened?, etc). Someone told me I sshould win big in Vegas because they said "God owes you". I said God doesn't owe me anything, but he could certainly shine some light.
At this point, I think the suspense of surgery is 10 times worse than the actual surgery and recovery could be. I'm anxious to have it over.
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I didn't say that my surgeons only do 4-5 surgeries a year. I said that in the city of
Omaha 4-5 are diagnosed a year.
At this point, I think the suspense of surgery is 10 times worse than the actual surgery and recovery could be. I'm anxious to have it over.
Tracy -
guess I read that incorrectly. Thanks for the clarification. I feel better.
I actually found the treatment decision to be much more frustrating than the suspense of surgery. My AN was medium, so I had the choice of radiation or surgery - and it was a very big dilemma. Once I made my decision, I found I had a great sense of peace and couldn't wait for my surgery day.
Surgery wasn't pretty, but you sleep through it so that's a big plus :) Recovery wasn't something I was fully prepared for - despite my doctor telling me how tough it would be, I totally underestimated it. But it's something you can and will get through and as time goes on you'll actually forgot most of the tough times. I know I have.
Jan
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Hi, Tracy - and a slightly belated welcome to the ANA website/discussion forums.
Your shock at the AN diagnosis and the 'unreal' feeling as you prepare for surgery (including all the pre-op testing involved) are almost exactly what I experienced 4 years ago. As a healthy older guy who shunned doctors and hospitals most of my life, receiving the AN diagnosis (via a 7 P.M. phone call from my doctor) was upsetting and began a few intense weeks of doctor and lab visits, calls to my medical insurer and a lot of reading about 'acoustic neuroma' on the internet. Fortunately, like you, I discovered this website early on and it has remained a source of information and comfort to me, even though I experienced an excellent surgical outcome and successful (but uneventful) radiation treatment a few months later (in a planned sequence of treatments). You're naming of the AN is inventive and has been done by a few other of our posters. I think it's a very good way to deal with the situation. As Clarice ('CHD63') stated, a sense of humor is a valuable aid to getting through this often stressful experience.
To respond to your questions (as best I can):
When the doctor considers it necessary (due to a risk of CSF drainage) a shunt will be installed prior to surgery.
Facial palsy is a stated risk with AN surgery but the risk is relatively low and when facial paralysis occurs, it is often temporary. I had no post-op facial paralysis - and I'm not an exception, but I do have a small (dime-size) 'numb' spot on one side of my tongue that never resolved. However, my taste is normal (better than before the AN surgery) and this 'spot' has no real impact on my daily life.
The 'average' recovery time is usually stated as '6 weeks'. However, that is a 'ball park' figure. You should only be dependent on others for a week or two and back to work in six weeks, possibly less, depending on how you do post-op. It's difficult to put a solid number on recovery time, as much as we would like to. There are too many variables involved. Figure six weeks and keep your schedule open to more, if necessary, especially at work. I was driving again - with my doctors permission - barely 2 weeks post-surgery and although I was recently retired, I was able to resume most of my usual activities within four weeks of my hospital discharge. I live a relatively active life, am a Deacon in my church and generally have a full plate, as it were. I trust you'll have a similar surgical outcome. Your surgery date is only 3 weeks away and I believe the sooner you get this over with, the better. That was my attitude and my surgery was within 3 weeks of my diagnosis, based on my neurosurgeon's urgency to 'get that thing out of there'. I agreed - and we did. I'm fine, now. You will be too. :)
Jim
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Everyone has been so helpful. I have been reading the forum's past posts all weekend.
As I live alone, I will be staying with family for awhile. I am trying to plan ahead as much as possible. I've read the tips about goggles, tear-free shampoo, and drinking straws. I'm a planner, as much as I profess not to be.
I hate to post duplicate questions, but does anyone have any other tips for those first few weeks after surgery? My family is quite anxious to think ahead.
I could paint a picture of how my family plans ahead. When I had my wisdom teeth out a few years ago, my stepmother went and bought 10 packages of pudding snackpacks, slimfast shakes, mashed potatoes and mac'n' cheese. She had detailed lists of when I took my meds. She's a very diligent caretaker. I think it's driving her crazy not knowing what to expect of the healing process.
It's weird what has crossed my mind in the past 2 weeks while prepping for surgery. I understand that post-op fatigue is expected. I'm not used to sitting idle, so to be honest, a bit of me is concerned that I may be bored. I worry that if I get bored, I may dwell on negative thoughts. I'love to read, and I don't think I will be able to do much reading for awhile. Tomorrow I am going to go to the local public library to see if they have an audiobooks section. I figured that if I checked out some classics, it wouldn't really matter whether or not I drifted off to sleep mid-story. I'm hoping the ability to get lost in an audiobook may help me keep my sanity.
The first two books that popped into my head struck me as ironic. Alice's Adventures in Wonderland, and The Wizard of Oz. It seems a bit apropos to listen to stories of girls who fall asleep and dream of bizarre things.
I'm very thankful for this forum, as it has helped me so much already. As the weeks and days are whittling away, its difficult to imagine.
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Tracy Lynn
My first week home, I just walked al little (the more you walk the better it becomes) and also slept alot. Then after first week, I just did want I could with a few naps in between. It also depends on the recovery. I didnt suffer from any side effects like facial paralysis nor no problems with blinking nor any balance issues as my balance nerve died before surgery. With the translab, the balance nerve is cut and if it wasnt dead beforehand, you may need physio...
JO
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Yes, Tracy Lynn, good thoughts and hardy prayers are, I'm sure, being offered up for you by so many people herein.
Regarding post-op balance issues, I'm with JO .... "you may need physio..." Most people's balance is greatly affected by surgery, but diminishes with time as your body's other balance mechanisms learn to compensate for the loss on the AN side. So I think it's important to arrange physio (vestibular therapy) before the operation. Difficult remembering exact details, but I think I started the first of 3 sessions several weeks after surgery. And I found that this type of therapy is not offered at all locations. So perhaps you should discuss this with your docs ....
Best to ya!
Greg
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Hi Tracy, There is an Omaha gal who just had surgery recently and am not sure with who. Her name here is skamper.
I am not super far from you as am in central Iowa. Many of us on the forum have been to Iowa City and a super neurotolgist there. They do around 60 a year and do well. I have NF2 which is tumors on both sides and have had 3 tumors and 4 surgeries.
The first couple weeks will not be too super but then it slowly improves. Do not overdo to prove to your self that you will be normal again. It may take time but you will be better. You may have a good day and over do and then a couple bad days. That's happens to all of us surgery alumni. Every dr has their own protocol in what they do. Some people have been on steroids when come home and some haven't. That may play a role in how you feel. We all vary in how we feel post op. How your body has already adjusted to the tumor will be part of it.
You won't need much in the hospital. A robe, lip balm. Most places give you slipper socks. I took pjs to get on once IV was capped. You need easy ones as will have a large dressing. If you wear glasses then take an old pair with the bow off the side,as won't fit with the dressing. TV is about all most of us have felt like after and some not even that,
You read here of some who have longer term problems but there are many who do do well and are gone and back to their normal lives maybe with some small adjustments and the hearing loss and maybe some balance issues. Balance and facial issues do improve in time for most.
Keep asking us questions and know the time before surgery is scary! Many of us know this well! I am much older than you and have daughters around your age and know that it would hard to be going thru at your age.
i wish you well! Cheryl R
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Tracy Lynn,
Hi :) I just read about Jean Claude, I am so sorry that you have to go through this! It sure sounds like your not letting any grass grow under your feet. I admire your ability to act fast. I am having Translab surgery 2 days after you. I have been dealing with this for over 4 months now and I'm still fighting the urge to cancel my surgery date. My tumor is a little smaller than yours but I am about 3 times your age. You are such a brave young woman! I like how you are preparing for surgery and I have taken a couple of tips from you. Thanks.
The only question I have for you, and I'm not positive that you have not posted this but did you say how many surgeries your Dr. has done? I know you said you feel really comfortable with him and that's half the battle.
I will be thinking of you and wishing you the best.
Sue in Michigan
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Sue,
I am having surgery with Dr. Britt Thedinger (Otolaryngologist/Neurotologist) and Dr. George Green (Neurosurgeon) at Nebraska Medical Center here in Omaha. They make a bit of an odd pair as Dr. Thedinger is such a jovial, positive man with a joking manner, and Dr. Green is very severe, and has very little to no bedside manner. As a pair, they have conducted over 340 AN surgeries here in Omaha over the years. I did not ask how many surgeries they have conducted individually. I am 100% confident in them and their abilities.
Cheryl, I've ready Skamper's posts, and I do hope she is doing well. She had her surgery at a different hospital with different surgeons, but I can definitely relate to her posts about the bitterly cold winter we had in Omaha.
Since I'm almost SSD, my drs agree that I probably won't notice the difference if I have any further hearing loss. I'm certainly worried about balance issues as I get motion sickness very easily. I've had no balance issues so far, and Dr. Green believes my vestibular may be dead.
My mom, bless her heart has sent me new Pj's and slipper socks for the hospital.
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Tracy, Sounds like you are handling the pre op wait fairly well. Good you have some drs with AN experience as that is what is needed. It is very hard when one wants to know exactly what to expect and we can't give you an exact answer. I am retired nurse but only worked in a smaller hospital with a different type of pts than what this is. So I did not have as much knowledge as wish I had pre op.
I did not think I had any balance issues post op past my first surgery till walked outside and discovered that yes I did. Outiside and large mall and bright big stores were hard at first. Now your zoo could really be the exercise place with their hilly areas!
We have been there a few times. Very nice.
Cheryl R
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Hi Tracey Lynn. I think you will get through all of this just fine and Jean Claude will be packing his bag and out the door soon. I applaud your state of mind and obvious strength of character.
I can't give you much advise on after surgery things, as I didn't get rid of my AN that way, but you will need a lot of rest. Eat good food, keep hydrated, and don't be surprised if you have some trouble concentrating. Reading, or watching TV or movies might even be too much for you for a little while. It just depends on the individual.
Best of luck to you,
Sue in Vancouver, USA
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Tracy Lynn,
Is it weird for me to say that I am jealous that your surgery is right around the corner? Something tells me that everyone on these boards understands how I feel! I am supposed to deliver my baby on June 10th and then have translab on July 14th. I found out about my tumor on 3/5 and it has been so hard waiting this out until I deliver. We have similar AN situations. Mine is the same size as yours and I recently turned 29...so I can relate. Please send me a message if you want to chat more. Please know that although I do not have any post op advice, I will be thinking of you and sending positive energy your way. I know that we both will feel better when we are on the other side, the recovery side, of this journey! God Bless, Kris
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Cheryl- We are lucky to have such a fantastic zoo. I haven't been there in a few years, so I will make that a goal before the end of summer to go, even for a few hours. Sorry, I don't expect anyone to tell me what to expect, I was curious if any posties had pieces of advice. :) I understand that everyone's is different. Since I'm staying with my parents, I'm trying to do as much as I can to prepare pre-op so I'm not as much of a burden. I know that this is what family is for, but it makes me uncomfortable. I think the hardest part of this is going to be accepting help and trying not to get my undies in a bunch by trying to be independent too early.
Thank you Sue I think my dad's cat will take ownership of me while I stay there. I have no doubt he will be keeping watchful eyes on me and how much I sleep. The more I sleep, the longer there is a warm body for him to lay on.
Kris, congrats on your pending baby! Thats fantastic! I imagine that will be difficult enough to deal with, aside from the pending surgery. I'm sorry, I sound like a horrible person being impatient, I can only imagine how it would feel to have to wait so long. Are you having a boy or a girl? A small part of me is grateful that I will be home so much as my new niece is expected 4 days after my surgery. I'm hoping to see quite a bit of her, even though neither she or I will be up to it at first.
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Tracy Lynn,
First off, welcome to the forum.. We're glad you're here..
Next, as a postie, my biggest advice would be to take things as they come, relax, don't be too proud to accept help when needed. Sue is right that everyone's journey isn't going to be the same as someone else's.. One thing that you'll learn through this journey is patience; with yourself, with others, etc.. Don't get overly worked up about what MIGHT happen and focus your energy on adapting and overcoming the things that DO happen WHEN they happen.
If you want one person's account of their journey from pre-diagnosis to 8 months or so post-op.. Read my blog (listed in my signature). It very likely won't be exactly the same for you, but you can get a general idea of one person's experience with surgery on a large AN.
Regards,
Brian
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Thanks Pooter!
I have read your account of your surgery. I know it wasn't the same, but it helps nonetheless! I have borrowed your "Brain Booger" analogy as my brother is trying to find a way to tell my 7 yr old nephew, and he seems to think he will grasp the concept. He's already asked if the doctor is there to "pick" my brain booger.
Jean Claude keeps moving and my head hurts, but I wouldn't cry if they call me tomorrow and suggest surgery earlier now.
I plan to play the last softball game before my surgery (2 days prior) and I certainly will consider it a massive accomplishment if we win.
Everyone here is fantastically supportive. I don't know if I could've made it this far without all of the advice and supportive thoughts.
Bless you all. Thank you immensly.
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Tracy, I was definitely in your shoes as far as wanting help, but amazingly once you get on the other side, it's pretty easy to accept it cuz you really will need it. I had absolutely no problems asking for help during that time, which is way beyond my usual thing! Like Pooter, I also have a blog thing of when I went through all that (look in my signature block). I know when I was in the pretreatment options and was going through other peoples experiences, I appreciated it! Take care and keep up that wonderful attitude! :)
Jay
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Tracy Lynn, first I want to say I am sorry you have an AN. I feel you have done a great deal of research which will be very helpful post surgery.
My advice is to rest prior to your surgery and rest, rest, rest after your surgery. You won't have a big appetite and sleep is very important. However, if you are able to get up and walk after your surgery (I had leg pain due to being on my side for 9 hours for the surgery) so walking in the hospital was difficult for me. However, once I got home I walked when I could but slept as much as I could. I had some issues and additional surgeries but I recovered nicely and was back to work in 2.5 months and exercising as well. Your family and friends will want to bring you food and just remind them they are not feeding an army. I had some taste issues after my surgery so certain foods tasted differently after my surgery. I did like sucking on hard candy which seemed to help with my strange metallic taste in my mouth for a few months. Visitors came by but if you start to tire, don't feel bad in asking them to leave so you can get rest. Bottom line if you get a fever and it starts to rise, call your Dr.
My prayers are with you!
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Jaylogs,
Thank you! I will have to check out your blog. I have read everything I could possibily get my hands on since I've found out about JC. I figure that its not possible to be over-informed.
TP,
I'm sorry to hear that you were out of comission so long when it came to movement after your surgery. I am indeed hoping that I will be blessed with good mobility. I've read often about the "wobbly legs" and the "wonky headedness". I understand that getting up and moving as soon as possible and to keep moving whenever possible is important to recovery, while walking the fine line of overdoing things.
My stepmom called and asked the poor nurse a barrage of questions, so I think she feels better about my aftercare. The nurse seemed pretty optimistic about the healing process. Then again, she hasn't gone through it. She did ask my stepmom if she's going to be able to make me "get up and move", because most of what I will do is sleep. I think my stepmom will definitely be able to motivate me. She is a diligent caregiver, and won't let me forget when its time to eat, take pills, pee, etc.
I may have trouble reminding her that I won't have my regular appetite, but I think that is the lesser of evils. Someway we will make things work.
I was looking farther at the ANA website, and I do so wish I already had ordered a SSD Right side pin, because my co-workers often forget that I cannot hear them through my right ear. I have had a few accuse me of being a "snob" because I don't respond to their questions. Not intentionally of course, but its hard to explain to someone the extent of your hearing loss if they haven't been exposed to it before.
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Welcome Tracey Lynn, although I am sorry we had to meet this way. Your positive attitude is wonderful and will be so helpful during this sometimes tough journey.
I too am having translab surgery, just a day after you! Thank you for posting your questions about post-op here. I have been getting a bit nervous about everything lately and reading the replies has helped (I am so thankful for this site and the amazing people on it!)
I am in CA and will be at Stanford with Dr. Jackler on the 19th, but my thoughts and prayers will be with you on the 18th.
Take care,
Kim
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Hi and Welcome, better late than never!
Sounds like you are right on top of everything. Now just stay busy and exercise IS good, as much as you can. You will recover so much quicker. And you are young, that helps. I can see you out there playing softball again and soon. Give it a couple of months though! You are experiencing the dizziness stuff now, so it probably won't be as bad once you get JC out and start balance/walking routines. Walking is the best thing to do post op, looking straight ahead, not down.
My AN was complicated, because it had been in there for way too many years (5-10 years too long, I was told), hence all the procedures and surgeries. But surprisingly I had little to no dizziness,balance issues post op because I had already compensated. I had been walking around for years with this vague disequilibrium, light headedness. One doc went on to say I had Meneire's and put me on medicine for that. Which I know I didn't have because I did not have vertigo.
Anyway, as others have said- what to expect post op varies from person to person. Expect to just take it slow and easy, walk, rest, walk, sleep, rest, drink, etc......Calming CD's or books on CD are a great idea. I had post op headaches and EXTREME fatigue. But then I lost blood during the surgery, which is NOT normal. So I was more short of breath and fatigued than anything.
I also had translab and the incision is behind the ear. Other than the small amount of hair that is cut (I had short hair at the time) no one could tell I had brain surgery.
YES it is brain surgery, as Jan mentioned. And it is also equivalent to TBI being that the brain is exposed. So you have to give yourself lots of healing time,and just take it as it comes.
The part of your last post:
I have had a few accuse me of being a "snob" because I don't respond to their questions.
Ouch that hurts! The pin is a good idea, but then people look at you and the pin up close and say "what's that?" and you have to explain why you have the pin on, so sometimes it's just easier to say "I'm deaf on my _______side."
I just sound like a broken record --
Dr. Britt Thedinger-that name sounds so familiar! I think he went to Rockhust high school in KC, the all male high school. I went to St. Teresa's Academy in KC, MO the all girl highschool. Looks like he went to KU (go Jayhawks!) I went to KU for nursing school. I remember him being this gorgeous hunk......anyway, hang in there stay busy.
One other thing, I was hoping they would take more "fat" from my abdomen, but it was just a little dent's worth. Darn :D
Keep up the good positive spirits, everything will be OK!
Maureen
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I was also pretty shocked last year to hear that I had a tumor and that I would need major surgery. Never having had major surgery before, that in itself, was pretty scary. The healing process takes time; allow others to care for you. One thing that I have found that was so helpful was a CD called, Successful Surgery, from www.healthjourneys.com, which uses imagery and self-affirmations to prepare for surgery. Initially I was skeptical to the whole idea, but tried it. The first few times it did nothing for me. The next few times I cried the whole way through. The following times the CD helped me to cope, relax, and be self-confident about what was to take place. Though I wasn’t totally prepared for what recovery would mean for me, this CD was probably one of the most helpful, hopeful, and reassuring things I could have done. It has been 11 months since my translab surgery, but doing well. There are challenges, but you will be able to adapt and cope. This web forum is a wonderful place to share. Wishing you well.
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Thanks Kim!
My prayers are with you as well. I do so hope that you have a successful and complication-free surgery! I too am sorry we had to meet this way. We shall heal together :)
Maureen,
I walk looking down now, so that will be a tough habit to break :) I do so hope to get out walking as soon as possible. I have heard how easy it is to overdo things, so I will definitely keep that in mind. I'm sorry to hear that you had such a tough go of things. Thank you so much for being on here and sharing your experiences as well! Sorry I'm not sure what TBI stands for, I'm still catching on to all of the acronyms! I have full faith in Dr. Thedinger, his history certainly speaks for itself. He's been working with my neurosurgeon for the past 26 years so I do believe they must know what they are doing by now :) He did go to school in Kansas, that much I do know. I don't know about him being a hunk, but I'm grateful for his sense of humor and his bedside manner. He won my parents over as soon as he walked in and gestured to them saying "let me guess, brother and sister right?" It's the little things that get you by. Darn dents worth. I did ask him if he can move some to my derriere, but he set me straight right away and laughingly said that that surgery costs more. I tried to use the excuse that it would help cushion the blow if I were to fall, but he just shook his head. Thank you!
Thank you MMH747, the cd sounds great, but I don't know that its for me. Other than the forum, I have forbidden myself from researching anything more or any other stories about surgery for the next 2 weeks. I have had some horrid nightmares lately, and I don't think I should expose myself to it anymore. It sounds like your CD is more healing-based, which is fantastic. Thank you for sharing your information as well!
We lost our softball game on Sunday, 15-14, I struck out twice, but I still consider every game I can play now a success, as while I occasionally get dizzy, I haven't yet fallen down. (yet) I am hoping to play the last 2 sunday games before Jean Claude goes adieu for good. They've made me a designated hitter. I just picture JC's the ball. I find it therapeutic in a way.
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Tracy Lynn .....
I am absolutely amazed that you are able to play softball with a big ole AN in there. Good for you. Whack that sucker out of there ..... but do be careful.
Many thoughts and prayers as the days draw close to JCs demise.
BTW, a TBI is a traumatic brain injury ..... often used in connection with people falling and hitting their heads or in accidents. However, we post-AN removal patients experience many of the same after effects of such an injury. It all depends upon your body's reaction to the invasion into the skull, e.g. swelling. In my case, the first brain surgery I had resulted in significant nausea (no steroids were given). The second one (for the AN removal with a different neurosurgeon) resulted in virtually no nausea, no headaches ..... just extreme fatigue (steroids were given following this one).
Clarice
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Thanks Clarice!
Having the same symptoms of a patient with a TBI makes sense then.
I fell today while cleaning the bathroom, aside from feeling very sheepish, I didn't hurt anything. I lost my balance :( while hanging the shower curtain back up.
I don't fear the potential dizziness, but I'm a nausea weenie. When I had my tonsils out as an adult, they warned me about the nausea, but I didn't worry much about it. I couldn't hold anything down for 5 days, and on the 5th day, I found that Chicken Noodle soup was the only thing I could manage. While not intentional, it happened 2 weeks before my best friend's wedding. At least I didn't have to worry about fitting into my dress.
Clarice, I can't imagine having more than one surgery, you are a brave soul. I'm glad to hear that the second one went smoothly.
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Tracy .....
A tiny tip: tell everyone involved with your surgery, from pre-op stuff until they put you under, about your history and fear of nausea. There are things they can do to greatly minimize that awful side affect. Especially tell the anesthesiologist during your pre-op interview.
My second neurosurgeon was adamant that he did not want his patients vomiting post-surgery so the ICU staff gave me something (Zofran at first, Phenergan later) the second I felt any wave of nausea and it did the trick, along with the steroids.
Interestingly, I was more at peace prior to the second surgery than I was the first ..... maybe that factored in to a better result. Who knows?
Best thoughts.
Clarice
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Thanks Clarice! I will take that advice! I will probably be bribing the anesthesiologist and the nurses!
I suppose to some extent you already knew what to expect, which can make things easier.
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Hi Tracy and Clarice,
I too had nausea after spinal surgery, I couldn't eat anything! I remember they tried to get me to suck jello through a straw and I hate jello to this day. That was so long ago ( I was just 30 years old). I had hoped that the anesthesia had improved since then and I would do better this time. I did speak to a nurse anesthetist about it and she told me that the anesthesia has not changed so much but they have new meds to help with the nausea now. She also suggested that I have a conversation with the anesthesiologist pre surgery. I will also ask about an anti viral medication because I get cold sores and I read that the irritation of the facial nerve during surgery can cause delayed facial paralysis....yikes!
I have put the Health Journeys surgery tape on my ipod. I listened to it last night for the first time. I found it very comforting and relaxing. Thanks so much for that information.
Best wishes to you all.
Sue
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Hey Tracy-
Sorry to be chiming in so late, but I can see that you've been given a proper welcome, along with lots of great advice! I had to laugh when I read about all your planning - I actually had spreadsheets so that my husband would exactly what needed to happen and when (as if he weren't perfectly capable of running things!) I think my last words as I marched into the OR was to remind him to feed the cats. ;D
Clarice had excellent advice in suggesting that you make a big point of alerting your doctors to the nausea concerns. The anti-naseau drugs on the market today are really great and I wouldn't think that you need to worry too much about that. I was eating within the first 24 hours, only had naseau for maybe 12 hours after surgery and the hospital managed that very well. I don't think I ever actually used the dainty little pink "bowl" that they provided.
I just suggested this to someone else, but will mention again here - bring very loose pants with you for the trip home. I found the belly incision to be much more uncomfortable than the head incision and wearing any kind of pants with a snug waistband was out of the question. I rode all the way home (over an hour) with my pants unzipped - yep, I'm a sex-goddess ;D If you have yoga pants with the roll-over waste, they work great.
hang in there, it will all be behind you soon enough.
Debbi
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Hi Sue!
The Anti-Viral suggestion I've not heard before. I will definitely keep that in mind. I've not been a big jello fan since I had my tonsils out 7 years ago. I left same-day surgery and my mother (bless her heart) took me home and fed me full of red jello. I was dopey enough still to eat it. It was not pleasant mixed with the post-op nausea.
Hi Debbi,
I leave the spreadsheets to my stepmother, she's very diligent at charting medication times, what was eaten when, and when you pee. I've tried hospital food before, I don't relish the thought, but I'm certain it must be better to face than the nausea. I dread the site of the pink "bowl."
Thank you for the great advice on the loose pants. I had wondered which area of the "abdomen" the doctor was planning on removing. I had hoped that it was slightly over the waistband... perhaps take a teaspoon from my spare tire :) I had planned on only packing pajama pants and a pair of drawstring yoga pants with which I can create "low rise". I must say I giggled when I read your post, because its completely something I would've done too.
-Tracy
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Tracy,
I did experience a lot a nausea and actually threw up on a nursing intern who wasn't fast enough with the bucket. I took a lot of medication for nausea especially before any pain meds, for probably the first month and it helped immensely. The chewing action seemed to almost trigger the nausea so I pretty much drank boost for the first couple weeks. The chocolate one was pretty good, helped to keep some of the important stuff in my body while I couldn't actually eat it.
Welcome to our little corner of the world and so sorry you have to deal with this, but you have come to the right place.
We are always willing to give advice or counseling.
Take care,
Liz