Surgery Dec 17th

[Valeriel23]

Hello Everyone,

Had my AN removed on Dec 17th at Johns Hopkins. I'm told it was removed completely. So grateful! I'm 32, mom of three children. I have a fantastic family and a ton of support.

Before surgery, I didnt have any "symptoms" to complain of. No loss of hearing or facial numbness. I found the AN in 2008 with an MRI because of headaches, which I think were stress related more than anything. I did the wait and watch, and discovered in Sept '10 it doubled in size and so Drs wanted to remove it.

After surgery, I'm going to be careful to not sound "poor me" here because I know in the spectrum of this issue and many other health concerns I'm very lucky. I just want to see if anyone else's experience is somewhat similiar, looking for someone to relate to.

After surgery, my doctors sent me to rehab for 10 days. My left eye isnt tracking like it should, some facial weakness and I cant swallow very well. The first few days were so tough. My left side hearing is gone, which I expected would happen. It is difficult to adjust, everything feels so loud yet 'uneven'. Feels like a ton of air is blowing into my left ear. When more than 3 people are in a room, its overwhelming to be around. Normally, an extremely social and lively person this is definitely a change but I feel like just being in a quiet environment all the time. Hope that changes.

I'm sure lots of us feel this way but goodness it's hard depending on someone for EVERYTHING. I can't see straight, and having these balance issues make it so others are making my every meal, walking me to the bathroom, watching me eat, its tough because you have to ask for what you need but, feel so bad asking for what seems like endless requests.

Anyways...I am taking it day by day, doing my best to stay positive and thinking about what I can do, not what I cant do. I'm on the computer! That's a good thing.

Some questions if anyone could chime in. Did you cough alot after surgery? for how long? feels like I have so much stuff to cough up?  Did your eye(s) experience trauma? How long till it came back? How did you cope? Any thoughts on keeping spirits up? I dont want to be a downer to all these sweet visitors that are here to help me, I just feel tired and kinda anxious to heal.

Thanks for the support, Happy New Year.

Valerie

[Mark241]

Hi Valeriel123, and welcome! All of your post-op symptoms sound completely normal, given that your surgery is still very recent. Everyone is anxious to heal quick, and some do, but your body heals on its' own time, like all of ours did and are still healing. Not feeling social is exactly how I felt post-op also, that will change when your body starts to heal, remember your body and your mind, are recovering from a pretty traumatic experience. Hearing is something you just get used to, I have to turn off the TV or radio when I'm on the phone for example. I also coughed up a lot, but that passed, some deep breathing exercise helped a bit. My advise is just rest, and plan something fun with your family when you get to feeling a lot better. Prayers to you for a speedy recovery.   

[Tod]

Hi Valerie, Welcome to our little community here. I am glad you had a successful surgery and are at home.

I had a very long and difficult surgery back in February. Immediately post surgery I had bad double-vision, a paralyzed vocal cord, difficulties swallowing, and facial paralysis. The double-vision is gone....that took about six-months and was aided by the use of a series of prisms on my glasses. My facial movement is about 85-90% of normal, basically unnoticeable by any normies who don't know what they are looking at.

My vocal cord is still paralyzed (in part because I ended being intubated for six days). The difficulties in swallowing are lessened, but remain. The same is true for the coughing, which is related to both the swallowing and the vocal cord.

I am not a doctor, so all I can suggest is that you talk to your docs about what might be causing these problems you experience. They are not unheard of with brain tumor patients and I believe are related to the location of the tumor and proximity to the trigeminal nerve. In my case, the smooth muscles of the throat are not working and thus the normal autonomic peristalsis is not happening. This means that the normal mucous that protects the sinuses, airway, and throat just kind of gets to beginning of throat and stops. Eventually I have to cough this stuff up and out. Throughout the day, carbonated drinks help me.

Again, pay attention to your body, try to understand what you are experiencing, and talk to your docs.

This stuff does get better over time - especially if you stay positive. I am a firm believer in the impact of maintaining a positive attitude on healing.

I hope this is helpful. Do keep us apprised of your progress and know also that this is a safe place to ask questions and to vent.

Good luck,

Tod

[Jim Scott]

Hi, Valarie - and welcome ~

Congratulations on a successful AN removal surgery!  Please don't feel a need to minimize your frustrations with the post-op issues you're dealing with.  This is a support site for AN patients and we can empathize with your struggles, both physical and emotional, because many of us have had a similar experience.  

I don't have much to impart on the coughing issue because I didn't have to deal that particular issue.  My recovery was rapid and near-complication-free, which was fortunate because I have little patience.  I can tell you with some degree of credibility that the coughing and eye problems as well as the emotional fatigue that often accompany these kinds of post-op issues are usually temporary, so you do have 'a light at the end of the tunnel', as it were.  I would suggest keeping your focus on the future and being free of these problems, living a relatively normal life.  This is what I did and voilà!... before I knew it I was back to my normal activities (about 2 months in all).  I'll bet that you will be, too.  Just keep looking toward your future with as positive attitude and you'll get there.  

Thanks for posting and even if I couldn't add much to the previous responses, I'm glad to be able to add my welcome and wishes for a quick and complete recovery for you.

Jim

[leapyrtwins]

Hi, Valerie and welcome to the Forum (little smiley face icons don't appear to be working yet, so picture a grinning smiley face here).

Congratulations on being a postie!

I had eye "issues" in the form of double vision for a couple of days post op and found that they went away on their own.  In fact, most of the side-effects I had post op (balance issues, metallic mouth, fatigue) went away over time.  You just have to be patient - which, I know from personal experience is hard.

Your surgery was only a few weeks ago and I'm confident that in time you'll be feeling more like yourself. 

Keep the faith!

Jan

[Valeriel23]

Thanks everyone, this has been such a scary experience. Prior to surgery, I was anxious but excited to get it taken care of. I was being strong, ignoring the fear for the most part in order to help my kids and my family not worry. I guess the reality is setting in, the hearing loss, the balance issue, etc.  It's only been 2 weeks and 3 days, I know...and I'm doing my best to be patient.

The hearing loss is just starting to feel real. Its hard keeping up in conversations. I can hear the TV fine, and can do one on one convos well. Its just when there's several people in a room that it gets overwhelming. I havent been out yet, pretty much been home since I got out of rehab. Wondering how it will feel to be out in other settings.

I just wish I could eat. I'm stuck on wet food. Chef BoyArdee, spaghettio's etc. My doctors are going to do a collagen injection in my vocal chord (anyone had that done?) I'm waiting on them to schedule it. I dont have a voice at all, thats supposed to be an instant fix. I dont know if it will fix my dry mouth and the fact that nothing tastes the same. Thats driving me nuts. How long does that last?  I am dreaming of just biting into something crunchy, a turkey club sandwich or something! So tired of soup. haha. The injection may/may not help with swallowing food? The doctor just says "hopefully".  My left eye not tracking/moving seems to be bothering me less than not being able to eat regular food.

Thanks for letting me vent, with all of my family here taking time out of their everyday busy life to be here with me, I feel so bad whining. I know they love me and they'll listen, iI just feel guilty. countdown to feeling better...any tips to cope apprecatioed!

[Tod]

Valerie, if it is any consolation, when I left the hospital, I could only have thick liquids and pureed food. I had to have a vocal cord injection before I could eat or drink somewhat normally. In fact, I have had three injections...the first two were done with gelfoam which was supposed to last 3-4 months. They did not last that long. The third (and I can't remember the name) is supposed to last 12-18 months. These have had limited effects with me because my vocal cord still has a small deformation. Answers are often short in coming about what the future holds.

However, this is my experience and it may well have very little similarity to yours after a short period of time.

I hope your swallowing difficulties will be improved with the injection as it could well be just a question of the cords not closing together and causing you to choke or cough when bits of food irritate the cords.

Don't worry about venting, this is a safe place. There is a small handful of us with voice and swallowing difficulties, and we certainly understand what you are experiencing.

As for coping tips:

1. Be very intentional - no "Casual Eating." In other words, you probably should not pickup a cookie or a handful of cookies and start munching as you walk through the house. Sit down with a drink.
2. Small bites, very well chewed.
3. Keep a drink with you all the time. Carbonated drinks tend to help me the most.
4. Learn to be very aware of the eating/swallowing process. Try to understand what your throat is doing.
5. Experiment carefully with dry foods, especially breads.
6. Nuts and chips can also irritate the vocal cords very easily, so chew them very well with small sips of beverage.

I hope this is helpful.



-Tod

[catlover]

Hi Valarie,
Welcome to this fantastic forum! I got so much help from the wonderful people here. Without them I don't know how to coupe with everything. For me, the worse time was before the surgery, really, because I thought of everything that could go wrong. Even the fact that I would die during surgery and loose my three teenagers came to me. Thank God it didn't went that way! I also had eye problems after surgery. I had double-vision and wore an eye-patch for some days. After having visiting an eye expert on the hospital the double vision just went away! I think that all the difficult exercises I had to do with my eyes somehow fixed the double-vision. Can't tell you how, but I'm so greatful it went away on its own. I'm sure your double-vision also will disappear in a few days. I also lost my hearing on my right ear, but 1 1/2 years after surgery I don't very often think about that I only have hearing on one of my ears. You will adjust, but it takes some time. Balance issues are also tiring! I remember that it felt like I had borrowed somebody else's head. I was dizzy and blurry, but it slowly went away. As soon as you can I suggest that you try to take small walks. I experienced that the dizzyness was worse in the morning before I had my walk. It was like the brain "woke up" and adjusted after the walk. Have you got balance exercises to do? I know that they are terrible to do, but they do help.

If you are interested in my post-op story, you can search for "catlover" and you can read about my recovery. My dear hubby reported a lot about my recovery on the forum.

Today, I feel great and my life is even better now than before the surgery!

Rest and take one day at a time and you soon will be fully healed.

Hugs from Catlover (Helene in Sweden) 
 

[kathleenanna]

  Hi Valerie       Congratulations...happy to hear that the surgery is over for you.  I hope you get as much comfort, information and support from the people on this forum as I did.  I truly couldnt have gone thru this AN journey without them.  I am 4 months post op and I know every single thing you are feeling.  I also lost all hearing, on my left side, had and still have slight balance issues, dry eye and "heavy head" feeling.  But, I will say that I have come so far since my surgery that I do feel so very lucky.  I am also a very active, independant woman and was blessed with a great support group of family and friends.  I had the guillt issue from the minute I was diagnosed with the tumor.  I felt guilty complaining or being so afraid because I knew that it could be a worse diagnosis.  Then after the surgery, I felt guilty some more for the same reasons!!  And I kept thinking that I should be feeling better than I did.  And the word patience just wasnt in my vocabulary, even though thats the advise given by everyone.  I was my own worst enemy!!!  But looking back, I can say that time is what truly heals.  So if I can give you any advise, please be patient with yourself.  Let yourself heal.  There will be days when you feel great, and then you will have some not so great days.....and thats ok.  Just go with how you feel.  People tell me that six months is a turning point in the recovery process.  I can't wait to see if thats true!  And yes, being in crowds is very overwhelming for me also.  I have a hard time processing all the noise and so I find that I avoid crowded, loud places.  I remember right after the surgery feeling that I didnt really want company because my head just hurt to talk!  That feeling does go away and I found I did enjoy the company.  My biggest complaint at this point is how tired I get and the heavy head feeling.  I went back to work full time last week, and I am so very exhausted when I get home that I just want to go to bed.  So, I keep telling myself that the stamina will come back, in time.   And I go to bed!!!  The heavy head feeling, I am told, diminishes with time also.  So I think that after all is said and done, patience is my lesson to be learned from this!    I'm sorry that I am going on and on, but I just want you to know that you are not alone.  This is one heck of a ride......Please take care and take one day at a time!.........................Kathleen Anna

[Valeriel23]

Kathleen Anna, (and everyone!!)

Thank you so much for your reply. Wow, that makes me feel so much better, its nice to be able to relate to someone. My family loves me, as all of ours do I'm sure but, as you know it's not always easy to explain how we feel or what we are going through. This forum helps me SO much. I find myself on here daily, just reading others opinions and issues and its so nice to be able to exhale and say "yes, exactly...me too" I've made it to the grocery store a few times, and slowly but surely trying to do more for myself but, it's exhausting. Today, I had a melt down because my kids are home from a snow day (ages 10, 5 and 4) and I couldnt take them out sledding or to build a snowman because my head is just so heavy and my vision being so blurry. I keep telling myself its about what I CAN do not what I CANT do but, in all reality that doesnt always stick with me and I get frustrated with myself. Even taking a shower is such a task. ugh.

Ya know, I was thinking today...before surgery, I didnt think much about recovery. I was just "ready" like, lets get this tumor out and get on with life. I truly didnt read much about side effects or symptoms and maybe that was a good thing but, now...I feel like I didnt prepare adequately. I didnt prepare my family adequately. I have guilt about that. I'm a single mom of three girls and I just feel like their days and schedules and routines are all crazy and that I owe it to them to get better quickly. Does that make any sense?

Anyways, back to being thankful. Your reply really helped me Kathleen, it made my day in fact. Thanks for understanding and replying with your own experience. Helps me to feel normal.


Hugs to all of you, thanks for helping to maintain my sanity.

[kathleenanna]

Hi Valerie.....one more thing in common besides the AN and the insanity.....I am also a single mom!!!  Although my kids are much older than yours, all three are in their 20"s.  So they were my biggest support.  My middle daughter even moved back from her apt at college to help me recoup!  She now commutes.  I give you alot of credit having such young ones to take care of as well as taking care of yourself.  Don't be too hard on yourself, its just one season that you arent building snowmen.  There will be many more that you will.  My new word for the week is "temporary"!   Thats what I kept telling myself all day today........this is only temporary.  I heard on the radio that Elton John is coming to Philadelphia.  I would love to go see him again, but my first reaction was "no way"  could I handle being in that atmosphere!!  So I had to make myself feel better by saying next time he comes I will go,.,,,this is just "temporary"!   When my three kids were little and we couldnt go out (for whatever reason), the next best thing was staying in our pajamas, blankets and pillows on the floor and watching movies all day.  And eating whatever we wanted.  Enjoy and have fun with them!!   They grow up way to fast!!!  Take care.............Kathleen

[leapyrtwins]

I'm a single mom also - boy/girl twins almost 15.

I don't think I'm insane, although others on the Forum might disagree with me 

Jan