Archive => Archives => Topic started by: cinnamon on July 10, 2006, 05:44:34 pm
Title: 10 day countdown til surgery
Post by: cinnamon on July 10, 2006, 05:44:34 pm
Well,
   My surgery date was moved up from the 26th to the 20th and now I think the nervousness is really kicking in. I am trying to focus on work but it is hard. I have actually talked to someone for the first time on the phone yesterday that had surgery for an an and i think it was a true reality check. I have felt pretty confident with thre route of surgery but started to question things yesterday. I really have to try to refrain from this. I know my surgeons are going to do the best they can.
   I know everyone wants things to go well. I have read so much on the forum that i do truly feel better about things but when it comes right down to it, it is so real. I have read some threads on what to take to the hospital and i plan to go shopping in a couple of days. Any items I should definitely not forget?? I am going to borrow a walker if need be but I am hoping I can restain from using it. Does it seem normal to go to physical therapy once released from the hospital? I am being told it could take up to 3 months to resume work- I am going to do my best to get better. I think I will struggle emotionally if I have paralysis or even if I do lose my hearing which I am told is most likely. When you lose your hearing does is sound like it does when you hold your hand over your ear? I have cried just thinking about it. I am such a light sleeper and I really focus on sounds if I get scared at night. I don't think I would want to sleep on my right side anymore. Sorry, I am rambling. I have been pretty strong so far.
Lisa
Title: Re: 10 day countdown til surgery
Post by: Crazycat on July 10, 2006, 06:28:07 pm
Hi Lisa,
I'm so sorry you have to through this. Hey, many of us got through with huge tumors! Mine was 5cm x 5cm. I'm lifting weights and jogging 4 miles a day now. I went through my ordeal last August and September. My left ear had been deaf for 5 years before my diagnosis and surgery. I make a living as a musician if that makes any sense! I just don't hear in stereo any longer.
You'll be able to hear from one ear just fine for most purposes. Can you hear out of your effected ear now? I've been deaf in my left ear for so long I guess I'd become used to it. Your good ear will compensate for the bad one. If your hearing is good in your remaining ear, oftentimes you won't even be conscious of being deaf on one side. If I sleep on my good ear as I most often do, I can still hear much of what is going on even though it's a bit muffled. It's all filtering in through the good ear - a healthy nerve is that sensitive.
One of the greatest orchestral percussionists in the world is a Scottish woman named "Evelyn Glennie". She is profoundly deaf. She hears music through vibration - feeling it. And she speaks as if she is totally normal.
You may find it difficult to sleep on your AN side as many of us have - at least at first until the nerves heal up and regenerate. You may have some issues with facial numbness and not necessarily paralysis. They take precautions to monitor the facial nerve.
Take precautions to save the hearing you have left in your good ear. Always carry ear plugs with you if you can.
It's hard for me to compare what I went through to your situation. I was hit pretty hard because of the size of the growth. I also had hydrocephaus and a shunt put in before the tumor surgery.
Keep in touch..........Paul
Title: Re: 10 day countdown til surgery
Post by: Jim Scott on July 11, 2006, 02:58:25 pm
cinnamon/Lisa
As a AN 'survivor' (who had a 4.5 cm tumor surgically removed just about 6 weeks ago from this posting)[/color] I can sympathize with your apprehensions and second thoughts, pre-surgery. We all go through this, I suppose.. .it's the fear of the unknown. Oh, we trust our neurosurgeon and know we have to have the tumor removed...but, but, it's 'what if' this - and 'what if' that, I know. Been there, done that. I was very concerned about being 'worse' after the surgery than before - in terms of facial paralysis, eye problems, etc. I explained all my fears to my neurosurgeon and he was quite reassuring on all counts without sugar-coating the seriousness of the operation. He said that most of those things never happen to a majority of his AN patients (but no guarantees, of course). He also stated that my general good health and positive attitude going into the operation was a major factor for insuring a 'good outcome'. At some point, I had to let the 'what if's go - and just do it- a big decision that I do not regret and never will.
The operation went beautifully - no complications. I was out of the hospital in barely 5 days and now (some 6 weeks post-op) I'm driving again and getting back into my old routine. Of course, not everyone has an identical outcome but AN surgery has improved to the point where with nerve monitoring (as my surgeon used) and pre-op MRI scans to very precisely locate the tumor, it all adds up to much less operating-room trauma for most AN patients. Having an experienced neurosurgeon with lots of AN removal operations under his belt, as it were, is also crucial to a successful surgery and uncomplicated recovery. Fortunately, there are a growing number of such AN-experienced neurosurgeons around the country...not just in one city or medical center. I had the best one in my state and he did a remarkable job. I couldn't have asked for better care.
You'll have a 'good outcome' Lisa, I'm sure. Don't let the 'what if's get you down.
As for taking a bunch of things to the hospital: I suggest that you don't bother. I packed P.J.'s and underwear that I never unpacked as I spent 4 days in a 'johnnycoat' (hospital 'gown') in ICU - where I just slept most of the time (day and night) - as I needed it. You will want a toothbrush, toothpaste and dental floss (if you use it). I had my wife with me (or nearby) most of the time and she was my advocate as well as my link to the 'real world'...which a hospital room definitely is not! My reading time (and interest) was minimal but some easy-to-read 'People'-type magazines are probably a good idea. I wore the same (casual) clothes I came in with when I went home (from the hospital). I suggest you not 'dress up' too much when you come into the hospital (at 5 am, who cares?) and prepare to not be as concerned as much as usual about your appearance as usual when you first arrive home. Naps and regaining your balance will be your major concern, not your hairdo. ;)
You'll probably sleep a lot the first few days post-op (in the hospital - and at home) as the surgery takes a lot out of you...at least, it did to me. You'll not have much energy for about 10 days post-op until your body rests and recuperates from the long surgery and , the hospital drugs (we all get them),the effects of the anesthesia wear off and your body can adjust back to normal. Having help of some kind (spouse, relatives, passers-by, whatever) is always recommended, at least, early on in your recovery. I felt pretty good about 2 weeks post-op and within a short time I was eating out with my family,going to movies, etc. Now, 6 weeks post-op, I'm driving again and playing miniature golf on weekends. Life is good. :)
EDIT: I sent Thank-You notes to the ICU staff...as well as the food service lady in ICU who was extra-nice about getting me what I asked for. JS (7/12/06)
Title: Re: 10 day countdown til surgery
Post by: Mousiez on July 11, 2006, 03:30:09 pm
please do something to take your mind off of things. When I was waiting to have another brain surgery at Johns Hopkins my mom and sister and I would take the weekend before and go to Pennsylvania, it takes your mind off of things. Get together books, magazines, yes, even movies to have after surgery. Even lay in some food you want, because hospital food gets old real fast. Maybe even search online for delivery places near the hospital (though the nurses station probably will have a binder with everything there). And do you know...one thing I did all through my different surgeries, from 1981 on...I dreamed of something I wanted to do, and set my sights to that. I want to cruise everywhere. I went on one to Alaska, I want to do it again, and go everywhere. Laugh, watch funny movies, watch the english version of Who's Line is it Anyway?.... I hope this helps
Title: Re: 10 day countdown til surgery
Post by: amymeri on July 11, 2006, 03:59:04 pm
I had a 4cm AN removed in April. I am a 38 year old mother of 2.
Things that made a huge difference for me:
1, Someone with me almost all the time at the hospital. My sister gave me bed baths (she is a nurse) and brushed my hair so I felt human, she rubbed lotion on my feet, brought the softest socks ever, and comfy, button front PJs. My husband and Mom would take turns sitting with me while I slept. They just read but it was a huge comfort to wake up and see them smile at me.
2, Candy for the nurses!
3. Ear plugs for your good ear because the beeping and loud voices from the nurses station got me a little frantic.
4. One of those soft microbead pillows to cushion your head. Helped at home, too.
5,. My mom stayed with me for 6 weeks and drove me to doctors appointments, cooked and cleaned, drove my kids to practices, played scrabble with my husband and literally watched over me. It was amazing.
Sounds like Jim had a better experience than I did, but I had no complications. I just felt very, very weak for 2 weeks. I had some dizziness, total facial paralysis, double vision and hearing loss. Only the facial paralysis remains bothersome. The hearing loss has been the least dsitressing. I sleep better at night because I put my good ear into the pillow and everything is quiet. Only my husband hates it because I can't hear my alarm!
The hearing loss I experienced on the right side was total and profound. I had perfect hearing before surgery. I can hear NOTHING on that side, so even when I clean my ear with a q-tip there is no sound. It is strange. Day to day, my other ear compensates just fine. I sometimes have a little trouble locating where a sound is coming from, but I can hear it just fine!!
I didn't have much pain, I took only Tylenol once home but I had bad heartburn from the steroids. That has resolved. I would started driving after my 6 week check-up.
I don't think you will need PT unless you have major balance issues. Usually the balance resolves quickly enough...or at least enough that you can manage.
Now I have returned to work 3 months later and am tired but okay. Take all the time you can afford. My SDI compensated me fully and it was worth the time to rest and heal.
Long note. Sorry..its just really fresh for me. I could write forever.
If you go to the meningioma mommas site they have a list of things people wished they knew going in...check it out!
Amy
Title: Re: 10 day countdown til surgery
Post by: lmurray69 on July 11, 2006, 04:00:40 pm
It does sound like a very exciting trip that we have to take, I do hope that you do great. I am sur ei can speak for all of us that has ben there done that. we will all be here for each other. although I am still searching for the right prince charming to do the surgery.I go the 27th of july for a concoletation. Please keep me in your prayers and I will keep you all in mine..
Title: Re: 10 day countdown til surgery
Post by: cinnamon on July 12, 2006, 04:40:45 pm
Wow,
Thank you eveyone for the support. I actually attended a brain tumor support group last night and that helped tremendously. I feel better already. I think I might even try to get a massage before the big day. Jim and Paul thank you very much for the encouragement on the hearing. I too, Amymeri have pretty much perfect hearing right now so I am struggling to give that up. I have a 30% chance of keeping it and I want to be that 30%!!!! I know it may not happen but I must hope for the best. That is so interesting to hear regarding the way you hear. I can't tell you how much I have been trying to imagine not having my hearing. I have taken alot from these few posts. Thank you from the bottom of my heart. I am praying that things will go well for you Lmurray. I have really continued to surprise myself on how well I am dealing with this whole change in my life. Thanks for the must have items to take to the hospital too. I will make sure I have some candy to give to the nurses.
Lisa
Title: Re: 10 day countdown til surgery
Post by: Obita on July 12, 2006, 06:21:37 pm
Dear Cinnamon Lisa:
Wishing you all the best a week from tomorrow. ÂÂ
When your original surgery date rolls around you will be a Postie by 6 days and writing to us!!
I hope that the morning of surgery you are as calm as I was.........for some reason I was so relaxed and ready to be done with it (after the months of stressing about it) that I was not one bit nervous. I was laughing, joking with my doctors etc...my head was going to be in their hands very shortly and I was fine with it.
If you have any questions at all do write or post, Kathy from Minnesota
Title: Re: 10 day countdown til surgery
Post by: amymeri on July 12, 2006, 06:50:20 pm
Cinnamon
Just remember to really take care of yourself and make sure that the people around understand that you might look okay and actualy feel okay after a couple weels, but you still need extra rest for a long time. You won't have reserves to be able to overdo anytime soon, but if you take it slow and steady you will recover just fine.
You will never be able to imagine the single sided deafness until you experience it. Believe me, I spent about 2 weeks walking around with my finger in my ear, trying to imagine it. It's both easier and stranger than I anticipated, but seriously, it probably won't be your biggest recovery issue...I am guessing fatigue...everyone seems to get that! I didn't even know if I HAD hearing loss until about 4 days post op!!! I just couldn't tell.
You are going to do great. Have someone post your progress here, so we can celebrate!
Oh and you might think about a pedicure. You can't have fingernail polish on, but a pedicure can make you feel nice and pampered!
Amy
Title: Re: 10 day countdown til surgery
Post by: matti on July 12, 2006, 07:14:16 pm
Hi Lisa - I would bring along one of those small battery operated hand held fans. I felt really warm after surgery and I know others have mentioned feeling the same. Also bring along some chapstick.
I had perfect hearing pre-op, but my hearing nerve was sacraficed to save my facial nerve. I understand how you are feeling, and it does get frustrating at times, but you learn to adapt quickly. I am vocal about my SSD when I am out in social situations, letting people know that they must talk to me on my right and speak up if the room is noisy. I know where to place myself when I am out to dinner, so that I can enjoy the evening. I sleep on my good ear and although it is a little muffled, I can still hear some. There is always the option for a BAHA. I went to a BAHA seminar and took home a test band and could hear people talking to me through my bad ear. It was really amazing.
My good ear has actually become very sensitive to certain sounds, I guess my brain has compensated for the hearing loss. I know this whole ordeal is scary, but please know you will be OK. We are all here for you!
Hugs, Cheryl
Title: Re: 10 day countdown til surgery
Post by: jacobs on July 12, 2006, 08:28:42 pm
Hi Lisa,I think the massage is a good idea if you can do it as close to surgery as possible.I had several shiatsu massages in the months before to help with the tension that had built up from stress .I went in for surgery on a monday and had my last shiatsu 2 days before on the saturday.I think this helped relax me going into surgery and the effects of the massage were still there post op. Wishing you all the best and no complications,Tracey
Title: Re: 10 day countdown til surgery
Post by: cinnamon on July 16, 2006, 11:09:36 am
Well, Today is sunday and so far I am remaining calm. I have started my packing and trying to get the house clean the way I like it. I gave the dog a bath this morning and now I need to go get some household items to stock up on. I can't tell each you how much you have helped me. I am printing out this post just so I can have a reminder. I will have my husband post to let you know how things are. Thank you for your support. I will try to write again before the big day.
Lisa
Title: Re: 10 day countdown til surgery
Post by: matti on July 16, 2006, 02:30:02 pm
Lisa - Been thinking about you and keeping you in my prayers. The waiting is the hardest part of this journey. I found staying really busy kept me from worry. I think I must have reorganized every room in my house and also stock piled food.ÂÂ
Don't forget a picture of your dog to take along with you, I also called mine everyday to say "hi" and then I would also get the daily picture updates of him. I just can't figure out why everyone in my family is so jealous of him ;D ::)
Sending big hugs to you, Cheryl
Title: Re: 10 day countdown til surgery
Post by: cinnamon on July 16, 2006, 04:06:31 pm
Thanks Cheryl,
I too just love my pet. I don't know what I would do without her!! She is truly going to miss me while I am away at the hospital. I have never been away longer than a few days. Thanks for your support. I stocked up on lots of stuff too today. My house is really clean now- I spent about 4 hours just trying to make it just right. I will go put my picture of cinnamon in my suitcase now just so i don't forget. Thank you for keeping me in your prayers. I have so many people here locally that care about me and that are praying. I know some people may not like visitors but that is what is going to get me out of the hospital. Seeing them will encourage me it is time to move on with life. I have an appointment with a life coach on wednesday to help me relax myself, also am hoping to have a massage the same day. I was going to try to work but just too many last minute things to get done. Again, thank you cheryl. Please keep posting. I appreciate your support.
Lisa
Title: Re: 10 day countdown til surgery
Post by: ppearl214 on July 16, 2006, 09:57:17 pm
Lisa,
sending you MAJOR huggles. I know I haven't been logged on here much lately, but I've been following along... you've got a fantastic support network in place in all of us (and lord knows they are tried and tested as I tested the heck out of them back in February). We're cheering you on and hang in there... this will be done and overwith before you know it.... I know, easier said than done, but we are here for you! Never forget that!
Hang in there! Huggles! Phyl
Title: Re: 10 day countdown til surgery
Post by: Mtn Gal on July 17, 2006, 02:42:33 pm
Hi Lisa,
The last few days before surgery can be the hardest, as you are trying to get everything done before you become "disabled". As my husband informed me, "those things will get done whether you do them or not". Remember to engage in some relaxing activities. I asked my husband for a dinner date and then a small shopping trip for those last needed items. We had a wonderful evening, even though I cried during dinner as we discussed the surgery. He assured me that God had given him peace about it and I knew that I had that same peace if I just wouldn't let my mind run wild with all the "what if's". The doctors even told my family that I was very calm going into the surgery. The funny part is, I looked around in the operating room and I had five men working on me getting me prepared and I couldn't help but say "I've never had this many men working on me at the same time". Well that was a good laugh anyway.
My surgery was retrosigmoid on May 31, 2006 and I was blessed with no complications; just the usual recovery from any surgery. I was back at my office job in 23 days, cause I got bored sitting at home where my family would not let me do anything. Boy when I returned to work, then I got all my other chores at home back too. I still get tired easily and I just try to take it easy when I can. My life has returned to my pre-surgery normal. I was almost deaf in my AN ear before surgery and I did not lose my hearing in that ear as the nerves were not damaged, but I can't hear much with it anyhow. You learn to adjust and you ask folks to repeat things a lot. Life goes on and it is good.
My hospital stay was 5 days. The first 2 days my mouth was so dry and I was nauseated and couldn't keep any liquids down. On the 3rd thru 5th day my toothbrush, toothpaste and mouthwash (don't forget the mouthwash) were my best friends. Most of the food and drinks left a bad taste in my mouth and I was glad to be able to brush my teeth and rinse my mouth. My appetite was gone for probably 7 days before I really wanted anything much and gradually things began to taste good again. I had new pj's with button fronts and on the 4th day I actually felt like putting a pair on. I even wore pj's home from the hospital and we had a 2-hour drive. I wore them the first couple of days at home too.
I truly wish you the best on your surgery and will be praying for you and your family as will others from our wonderful AN group. Try not to think about it too much and just relax. Give yourself plenty of time to prop your feet up before surgery and after. Keep a positive attitude that things will be well and that you will get thru this, one day at a time.
-Mtn Gal
Title: Re: 10 day countdown til surgery
Post by: cinnamon on July 18, 2006, 07:07:44 pm
Wow Mtn Gal,
   I can't believe you went back to work after 23 days. You sound so much like me. I have never been away from work very long and i can't imagine it. I do want to try to give my body time to heal though. I realize this is a serious surgery so I don't want to push myself too hard. I am curious, do you have any headaches? I have so a big fear of them since my doctor scared me.
  You are an inspiration to me. I can only hope things will be good for me too. It is hard when you just don't know what to expect. Is your hair long? I work as an administrator in a dental office and I am concerned about seeing that hair is missing. My hair is long but it is hard to imagine what things will be like. I am ready to get this over with so I can share with you and everyone what this unusual experience is like. I will try to write more sometime. My husband will try to post for me as he is home. I am going to try to call Cheryl from the an group to let her know how I am doing. Maybe she can post for me. Anyways, thanks for the tips.Oh, I am doing some meditation with a life coach tomorrow and having a relexology massage. I have to see my brain surgeon first which is good that I get that out of the way. I am pretty much packed but I will go put my mouthwash in the bag. Funny, I work in a dental office but I almost forgot the mouthwash. Thanks again for your support. I am really looking forward to talking more with you.
       Lisa
Title: Re: 10 day countdown til surgery
Post by: Obita on July 18, 2006, 07:33:58 pm
Hi Lisa:
Best of luck to you on Thursday.ÂÂ
I had translab surgery on a Thursday at 7:00 am and was home by Sunday noon and never had a headache. I had muscle spasms in my neck instead which went away with a little valium.ÂÂ
You gotta hear the good stuff!!ÂÂ
Kathy
Title: Re: 10 day countdown til surgery
Post by: nipanddale on July 18, 2006, 08:26:07 pm
Hi Lisa,
I read your post and my heart and prayers go out to you. My husband and I just got back last week from Los Angeles where he had his 3.5 cm AN removed at House Ear Clinic on July 28th. I can tell you that the only thing that helped my husband and I through this was prayer. I don't know if your spiritual or have a religious affiliation and trust me I don't want to offend, but I can tell you our story. We don't have a church or religious home so to speak, and we don't practice a whole lot of anything, but none of that really mattered. The night before the surgery I literally spoke to God and handed this over to him, I cried a little and confessed how scared I was and amazingly I felt better. My husband woke up a little while later, he had been very restless, and I told him about my prayer and that I felt somehow it had already been answered. He hugged me and tried to sleep, he told me the next morning that as he laid there he did the same thing and a certain peace came over him as well. And God did answer our prayers, Dale is recuperating so well, I'm surprised to look at him sometimes because if you didn't know about the surgery you wouldn't guess that he had one. He has some facial weakness right now and a little dizziness now and then but that's really it.
Lisa, I know how difficult this is for you and your family, I will pray for you. It's the new thing I do.
As for the hospital, here is what I would suggest:
A thin robe if you have one is nice to have. Definitely something that reminds you of your pet, we missed ours so much. Soft Kleenex Comfy underwear or loose pj shorts that you can wear without underwear The squisshy neck pillow that they sell at places like bed, bath and beyond.
Other than that everyone is right, you will most likely wear the gowns, but after a couple of days you will want something on underneath.
Tell people no smelly flowers, they will bug you. Your head and body will get hot from laying in bed so the squisshy pillow helps because you can support your neck and I think it's cooler than hospital pillows.
I would suggest slippers, but they usually want you to wear those socks that have the rubber on the bottom.
Typically you will want the room cold so tell others to dress in layers
That's really it. Good luck and God Bless,
nip
Title: Re: 10 day countdown til surgery
Post by: Mtn Gal on July 19, 2006, 12:52:21 pm
Hi Lisa,
Don't worry about your hair. I have short hair and they pulled it up and only shaved a small section underneath. The layers on the top and sides were long enough to fall back down over the incision. I had to push my hair back away from my ear in order to see the scar. The worst part is they don't want you to get the incision wet until the staples or stitches are removed, so it is a few days before you can shampoo your hair. I had a family member take a wet wash cloth and soap and washed my hair that way while I was in the hospital. When I got home and was able to get in the shower, my mom helped me by tying a gadget around my head above my ears (honestly it looked like a plastic shopping bag); I held it in place and placed a wash cloth over the incision to keep it dry and she washed my hair. Necessity is the mother of invention.
I haven't really had any headaches. My head hurts a little from time to time, usually when I have turned my head too quickly or if I've bent over several times. It sometimes throbs for a minute or two and then it subsides. When I first got home from the hospital, I took a prescription pain pill the first and second night, thinking it would help me sleep better, and then a day or two after that I may have taken tylenol once or twice. The steroids kept me awake at night and caused me to feel odd, so I was glad when I finished taking them. Be sure to go off of the steroids gradually.
Good luck on your surgery and your recovery. I hope it will be as good as mine. In a few short days you will be able to be back on here telling us your story. Each day will bring an improvement; just be patient and take it one day at a time. I will be thinking of you.
Hugs and prayers, Mtn Gal
Title: Re: 10 day countdown til surgery
Post by: staypoz on July 19, 2006, 02:17:31 pm
You might want to take a picture of your pet to have by your bed in the hospital. A friend gave me a small stuffed animal to take to the hospital and I can't tell you how that little stuffed puppy made me and the nurses smile!! You may also want to get some of the dry or shampoo-without-water to make yourself more comfortable. I used it every day until I got the go-ahead to wash my hair. It cleaned my hair and made it smell nice.
Good luck!
staypoz
Title: Re: 10 day countdown til surgery
Post by: cinnamon on July 19, 2006, 03:44:49 pm
Thank you all for your such caring support. Mtn Gal, I do believe in God but I don't attend a church regularly. I have done my best to come to peace with god and that i have opened myself up for him to take control. I had some wonderful reflexology today and we talked about holistic healing. I also met with a life coach to help me have postive energy and to let the fear go. It practically took up my whole day. I am believing that everything will be fine therefore it will be fine. I can't wait to get it over with and tomorrow will be here soon enough. I will try to get back on soon, but meantime my husband will hopefully put in a post or two. I have my suitcase ready to go. I am finishing some laundry and then plan to take a nice long bath with my new energy salt. I am signing out so thanks again for everything and may god be with us all in this journey we call life.
Lisa
Title: Re: 10 day countdown til surgery
Post by: cookiesecond on July 19, 2006, 05:08:27 pm
Lisa. You are in my thoughts and prayers. I pray for wisdom and guidance for the doctors, peace for you and your family and a quick,complete recovery for you. I look forward to hearing your good report. Lynn
Title: Re: 10 day countdown til surgery
Post by: ppearl214 on July 21, 2006, 05:32:25 am