ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: swhite on October 17, 2009, 05:53:31 pm
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I had an approx. 7cm AN removed 7 weeks ago (behind right ear) after being rushed to William Beaumont Hospital in Royal Oak, MI (friend called 911 - I thought I was having a stroke). I had no symptoms prior to this. I found myself in OR within 24 hours since the AN was bleeding on the brain. I am 47, full time working mother of 2 teenagers and a wonderful husband of 23 years. I was an active athlete and totally surprised by this sudden change of life for me and my family. I have obvious balance issues, facial paralysis, no hearing in my right ear and my right eye is not working in conjunction with the left eye (I often have double vision). I have PT/OT 3xweek and determined this will get better with time and prayer. I am seeking help and advice as we struggle through this. ANA was brought to my attention by my therapists and my loving sister. I hope to find local support too. Struggling :(
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SW, wow. Welcome, and I'm happy you're alive! Goodness on the size and emergency nature of your AN.
You've come to the right place -- browse around and before long I'm sure you'll have a long list of welcome messages here, and some answers on how to find support groups and specialists.
At only 7 weeks out, you are sure to have significant improvements still to come. Then you'll have to deal with the issues that remain one by one. Particularly the balance and double vision I would think are expected to improve with time and balance therapy? Was your facial nerve severed, or might it improve simply with time also?
I'm sorry for what you had to go through, and hope the forum will be a help to you.
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SW
one step at a time, one day at a time. I'm almost 7 months post op but my AN was small...wow on the size of yours....keep faith and exercise daily, even a little is better than nothing
Jo
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I am stunned by the size of your AN. Thank goodness you are ok. There is so much information on this site and so many people who will have shared similar experiences and can help you in your recovery and healing. Just keep asking questions and people will share their journey. You will find tremendous help, support, and most importantly people who truly understand what you are going through because they have been there. Day by day, baby steps and you will heal. Hang in there!
Cheryl
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Wow, how incredible! So glad you sought medical help quickly - unbelievable that you had no symptoms. What a shock for you and your family. You have definitely found a great resource in this forum. I see that there is a support group in MI, in West Bloomfield. Is that near you? If you haven't contacted the ANA office, you may want to ask them to send you info they have, including a Willing to Talk list of AN patients around the country.
In the meantime, ask any questions you may have - someone out here will have some good advice or idea for you, I'm sure. We do wish well!
Cindy
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Thanks goodness you connected with this group! The recovery process can be long and frustrating but this site will be a tremendous help. I don't know how to type a cyberspace hug but know that I'm sending you one now. Hang in there and I'll be praying for a complete recovery for you!
Cyndi
(also 47 and an athlete)
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Hi SW, You have really had something to deal with. Herei s hoping the harder part of it all is over. Wishing you a speedy recovery. Prayers are with you! Mickey
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Hi SW,
I also would like to welcome you. While most ANs are smaller, 7cm is not a record; Satman had an 8 cm one removed a year or so ago, also by way of a surprise trip to the ER. Collectively there is a lot of experience here with facial, balance, and eye issues, so I am sure you will find some useful information. I know you will find some very supportive new friends. Please make yourself at home.
Steve
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SW~
Hello and welcome to the group that we don't want anyone to have to join, but are glad you found us. I would LOVE to chat with you sometime. PM me your number, if you would like and when is a good time to call. I am here to tell you that it will get better and your life will go on - maybe a little different than before - but it is still good on the other side! Check out my blog - click on the world on the left...
Hope to hear from you soon!
K ;D
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S: So glad you found this site too ! ! I'm sure this has thrown you for a loop - you didn't even know you had an AN ! ! Geez louise ! !
Please ask us anything you have questions about. We are all ears (well, at least 1 per person !).
Always good thoughts, Nancy
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Hi, welcome I to am new to this site and since I received so many messages from others who are going through the same thing I cannot tell you how it helps. It is amazing with the size of yours that you did not experience anything prior. I see that you are going to a PT/OT, I have been going to a Vestibular Therapist who I feel has helped me tremendously I just would like to suggest maybe looking into that also. It is going to be a slow process and we are all here if you have any questions or just to vent our friends and family are helpful but do not completely understand what we are going through....
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SW
I cannot imagine how your world must have been turned upside down with the way your AN was discovered! You've had a tough surgery for a big AN-you are still in the early phase of recovery-I know it probably seems like forvever already. I had no comprehension that recovery would take so long but here's the good news....it does get better-gradually. This forum is a great resource for information and support-use it often. Take care!
Erin
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SWhite .....
Just want to add my welcome to this Forum. You are an amazing case. Sort of mind-boggling that you did not have symptoms until it was urgent. Thank goodness you sought and received immediate care!
Although most of us are not medically trained, we have collectively experienced a multitude of AN related issues and thus have done extensive research. Keep posting and expressing any concerns you may have ..... we are here to be another source of information and support. You are not alone!!
My thoughts and prayers as you continue with the recovery process. Rest, exercise as you are able, and stay in tune with what your body is telling you so you do not overdo during these early weeks.
Clarice
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Wow! That's a whopper of an AN! I know things are difficult right now, but just remind yourself you are lucky to be alive - although sometimes I'm sure it doesn't feel much like luck, I'm sure.
7 weeks out is still very early - I'm sure you have lots of improvement to look forward to. Unfortunately, sometimes it comes more slowly than we'd like.
The fact that you are an athlete will probably help a lot in your recovery - you were probably in good physical shape before surgery and will be more motivated to return to that level of activity.
It does get better - in the mean time - your new AN family will be here to get you through.
Lori
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Welcome! I'm new here, too.
I'd like to echo what everyone else has said with "wow!" :o. I can't imagine not having any time to "prepare" for what you're now facing.. though I don't know if there is any way to fully prepare for it. :(
I hope you find the support you need here!
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Wow! That was a big one! Welcome to this forum and I hope you find all the support you need. I understand that your life just turned upside down but as people here can attest, after some time, it begins again. It's great that you are an athlete. You are used to strenuous workouts and that undoubtedly will help your recovery.
Eve
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WOW - what a warm welcome from all of you. It is so very comforting that I am NOT alone and this forum definitely is reassuring for support. I am a newbie at using forums and I have a feeling as long as my vision is ok, I'll be on the computer alot from now on. I know I am very lucky in that I am walking and talking and able to do some daily household stuff without being too exhausted. Learning my limits has been a challenge only because I'm not the most patient person. My head no longer feels like a jar a marbles and I haven't had much headaches. My 3-4 inch incision is all healed but still achy some days. All the doctors told my family I was a walking miracle. Ten of the 12 cranial nerves were traumatized, but not severed. Only one was, the vestibular nerve and I've been told the body can usually compensate for some of the loss of this nerve over time. Having been a national level racquetball player, my goal is to get back on the court some day! My physical therapist does specialize in vestibular issues and is hopeful. I remain hopeful and am a good PT patient doing all my homework. My emotions are at an all-time high. Not only am I dealing with all that comes with having an ANA removed, I am also dealing with oral surgery from two teeth I had gum surgery in March. We're finding out that the surgery in March didn't work, so now the teeth have to be extracted. Nobody likes sitting in a dentist's chair, and I am emotionally taxed with this. My tooth pain is on the same side (right) as my facial paralysis. It is very difficult to identify the exact pain level from the teeth. Has anyone else experienced this? At least my sister is a dental hygeniest (I bounce things off her) and a good friend of mine is an oral surgeon.
As soon as I learn how to, I'll likely contact some of you individually. I found myself crying just knowing how many wonderful people posting such wonderful and supportive replies in less than 24 hours. I do plan on attending a local ANA meeting in West Bloomfield in December. Thank you all
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I want to add that you need to check out stoneaxe's post under postop/balance on Paddleboarding. I finally read the entire thing yesterday (it is 15 pages!) and it is so inspiring that he can do all that post-op. Since you are an athlete, this will really show you what you can do...there is also another thread that addresses exercises post surgery and one under AN community with Keri who just ran a marathon after having surgery in Jan. It may take awhile, but I am betting you get back on that racketball court.
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SW
I have no doubt that you will see improvement and get back to the exercise that you love. Like you, I was pretty active pre op. I was so shocked at how much that surgery took out of me! I remember just walking around the block wiped me out. I was determined that I would get back to the fitness level I was used to. My love is yoga and I was determined that I was going to get back to my regular practice. I started out with walking like my Dr suggested and gradually added on from there....by about 4 months I was back at yoga class. I held back until I was sure I was not going to hurt myself and now I'm back to doing everthing I used to do (except headstands). My yoga teacher told me the other week that it was like I had never had surgery! I think that yoga did help rebuild my strength and balance. My point is, even though you probably feel weak and discouraged, you will gain strength. Just do what your PT and Dr tell you to do....faithfully. This recovery process is tough and long but with determination you will be back on that court!
Erin
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Welcome, welcome! What a lot you have been through, but you sound determined and I have a feeling you are not going to let this beat you! You're taking the right steps, and joining in on this forum will be a great source of information and support. Best wishes as you continue on your AN journey!
Denise
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SW -
I had the exact same problem with my teeth too! I knew I had a toothache - but I couldn't figure out which tooth it was! The x-rays didn't show anything and my dentist and I were doing everything we could to try to pinpoint the problem. We eventually narrowed it down to one of two teeth, but he sent me to an endodontist to try to figure out exactly which one it was. We thought we had it right, so I had a root canal. Guess what? It was the wrong one and I wound up having the root canal for nothing! :o Had to go back and eventually had to have the tooth next to it extracted. Ugh!!!! So, I feel your pain! :( I hope they have better luck with your teeth!
You'll be back on the raquetball court before you know it. There are so many forumites that have gone on to do things most non-brain surgery survivors haven't done. And if you ever need to feel like a real pro - I'll come play a game with you - I'm really bad at raquetball! Haven't played since college, but I loved it - even though I have never mastered the art of hand-eye coordination! Trust me, no matter how off your game is - you'll beat the pants off of me! :D
Lori
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Again WOW!
You are not alone. Knowledge is power. As your eye can handle it search old threads - there is lots of great information from people who have experienced an AN.
Ask lots of questions we are here to support you! You have come to a great spot... I may never leave.. this is my AN family!
BIG CYBER HUGS!
Welcome.
Michelle ;D
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sw -
tuning in late here, but wanted to say hi and welcome.
As lots have said 7 cms is very large - and 7 weeks post op is very early. Things should improve in time. Attending your local ANA meeting is a great idea; you'll find it very helpful.
Here are a few links that another NY postie mentioned:
http://anausa.org/forum/index.php?topic=8379.0
http://anausa.org/forum/index.php?topic=10721.0
Hope this helps,
Jan
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I want to welcome you too.. I am so glad you were referred to this forum. You are dealing with a lot right now, I am glad you are taking things slowly. You still have a month before swelling is completely gone - so you will see improvements I'm sure.
People here are so giving of their time and feelings. It is a true comfort knowing how many people are on this forum.
On the bright side of your AN journey...at least you did not have to struggle with the diagnosis/treatment option ;) You just jumped in with both feet and went straight to recovery! You will make it back to the courts - I just know it! Alicia
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Hi SW and welcome. Well, that was certainly one heck of an AN you had there but... it's gone :) Now, onward to the road of wellness. Nothing I can add to what others have noted, but.... I'm cheering you on, I send wishes for speedy recovery and good health to you... and again, welcome :) glad to have you here.
Phyl
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SW ~
If you can accept yet one more (slightly belated) welcome, I'd like to offer mine. :)
Your AN 'story' is remarkable and I thank you for taking the time and making the effort to post it here. Like the others, I look forward to reading more from you and of course, my hopes and prayers go out for your continued healing.
Jim
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I believe I've already posted a "thank you" to all of you for your well wishes during my recovery. I'm now 9 weeks post-op and realize I need to pray for patience. I just phoned one of the local ANA "willing to talk" individuals and it was good to talk to someone. I think not being able to get out of the house this week (because of dental issues) and go to PT has put a damper on my spirits. I'm hoping to get back in the swing of things Monday :)
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swhite -
patience is very hard to have post op. I know all about that. It can be very frustrating not to be able to go about your normal routine due to fatigue, balance issues, etc., but in time you'll "get there".
I'm glad it was helpful to talk to someone on the WTT list. I'm on the list also, if you ever want to call me.
Jan B
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SWhite,
WELCOME to our group.
I am sorry for the reasons you eventually found us but nevertheless glad you survived surgery after the extraction of such a huge tumor… and you are here with us in “postie landâ€.
I am into my 3rd year of recovery since surgery of an XL (although not as XXL as yours and my buddy Satman’s) and it seems I am still seeing improvements this far out. Even this month more of a smile in my upper lip is evident than last month… so healing can happen.
The first overwhelming thing to me, in my AN journey, was all the medical terms thrown at me (Latin? Greek?) that I did not know the definitions for… but it is amazing what my learning curve became for physiology …in a few years. This forum has been invaluable to me- as the ANA (which I now make sure corporate employee match funds go to). I was taken aback with my diagnoses of a large tumor… and wish I had gone to a support group meeting before my surgery. However I had ANA buddies, Marg & Jeff, on the end of a cell phone (or e-mail) giving me tips from my recovery room… this was very beneficial. I am glad you have someone from the willing-to-talk list.
No doubt you are having follow up with an ENT. The quick discovery I figured out is that the “E†in ENT does not stand for “eye†care. Please make sure you see and an ophthalmologist (or neuro-ophthalmologist for double vision) for your eye. If you are having double vision it could be from post operative swelling and sometimes shaking of the eye, know as nystagmus, can cause this “if “the cranial optic nerve is involved.
Cranial Nerves
Here is a very good link that explains the cranial nerves. I found this to be an invaluable chart. The bigger the tumor the higher chance that other cranial nerves were involved besides the acoustic nerve (VIII).
http://en.wikipedia.org/wiki/Cranial_nerves
EYE
Here is some links on this eye issue
Video to show how nystagmus is tested
http://video.google.com/videoplay?docid=-6201505057633350143&ei=bLzlSqmjCoeWqAOboszuBA&q=nystagmus&hl=en&client=safari#
Definition
http://www.answers.com/topic/nystagmus
There are exercises that you can do during recovery- such as gaze stabilization exercises.
http://www.dizziness-and-balance.com/treatment/rehab/gaze%20stab.html
I took a medication during my recovery that relieved the swelling and know as diamox- and the double vision went away. (Nasty knock out drug that I recommend you take only at bedtime)
http://en.wikipedia.org/wiki/Acetazolamide
If you are experiencing any dry eye or eyelid paralysis you will need to discuss this with a ophthalmologist about getting an eye weight – at the very least eye drops or lubricant. Too many people here ended up with cornea damage that could have been prevented “if†they had been seen to in time by a qualified care physician.
Here is a good link to read about eye care
http://www.bellspalsy.ws/eye.htm
Face
This website is also a must read for any facial paralysis
http://www.bellspalsy.ws/symptoms.htm
Balance
The fact that you are already connected with a vestibular physiotherapist is very good news. You may want to invest in a few pieces of equipment. For me the best things were starting off on a stationary bike and using a palates ball. If you are a racquet player you may want to invest in a Wii to help you to get back to what you want to do. This way you can practice in a safe environment in case you are still tipsy. (I started on my palates ball surrounded by sofa cushions- in case I toppled- which I did) I was told “no more contact sports†so you may want to check this with your doctor.
Here was my post… However know the same doctor who said "no contact sports" also said I will never be able to ride a bike and sight see at the same time- again. (I proved him wrong!)
http://anausa.org/forum/index.php?topic=5584.0
Please do not compare yourself to others in your recovery. You may take longer to heal due to the size of your tumor. Your brain stem and cerebellum would have been pushed over for a long time- and it will take a while to go back to shape. The trick is you will have to preserver at moving and keep at it- no matter how much nausea you have.
Dental
This is not uncommon. With facial palsy it is very important that extra care is taken with oral hygiene. Many of us use an electric toothbrush. Also food can either fall out or get trapped. Also if you had tinnitus before the diagnoses you may have been grinding your teeth at night as a result. This is known as bruxism.
Definition
https://www.google.com/health/ref/Bruxism
It also can happen if the facial nerve is involved and your jaw muscles were not working properly. Also if your nose is pulled over due to the facial paralysis this can accentuate a deviated septum. If your sinuses are not draining properly, due to the paralysis side, you could have the sinus backed up- causing para-nansl sinus issues. One of the symptoms in para-nasal sinus disease is tooth pain. (Maxillary sinusitis)
I was amazed that by taking Sudafed- that this helped me with the tooth pain. You should talk to your ENT about your sinuses. Blocked sinus will show up on follow up MRI’s.
Teenagers
Having teenagers and brain tumor recovery simultaneously will be challenging for the entire family. Be sure to have lots of open dialogue … and reach out for support not just from the teens at home- but also from your community. Having kids in high school is challenging enough- not to mention iced with brain tumor removal surgery recovery. (BIG hug of empathy there).
Emotional
Know that you just had a big blow to the head… even if it was on the form of a controlled craniotomy. You were also given a cocktail of drugs: anesthesia, steroids etc… it is normal to go through a down period once you are at home and trying to figure out what the new “normalcy†is. Grieving the loss of hearing is part of it- and then people reacting to facial paralysis. Know that many have gotten through this without antidepressant drugs but know that there is a time and place for these meds “if†you find yourself getting very depressed by all of this. The best thing to do is to do what you are doing, go to physio and also reach out. No need to go through this on alone with this great forum. This forum was a saving grace for me as I could be having a bad hair day, still in PJ’s, awake at an odd morning hour… and could write to people… and get some very good answers resources (resources not even my follow up doctors were aware of)… and suggestions.
You have teenagers, just had brain surgery and are in midlife (where the menopause hormones can have us already in mood swings)… I am close to your age, have a teen and a tween, was XL with great hearing before surgery… and a couple years ahead of you (on the tumor removal) . Know I survived, had to work very hard at recovery and life goes on. Now I think my occasional fatigue and exhaustion is actually not from the tumor as it is from the rebellious and highly intelligent (too smart for her own good ::) ) teenager. Throw on there aging parents and this could send us totally loopy (as a sandwich generation)… but it won’t if we take on the “keep moving forward†attitude.
Community
You will discover here on the forum some people of amazing determination and emotional strength. It is really the most amazing virtual place I have experienced. Many of us often refer to each other as our “AN family†as they are the only one who truly get this wild acoustic neuroma journey… and believe it or not we even laugh a lot (perhaps more than others not affected by a “brain booger†thing)
http://anausa.org/forum/index.php?topic=10063.0
I know you have been through the mill with the shocker of this 7cm :o AN tumor- but know there is a very understanding and empathetic community here on the forum.
Again- Welcome.
Daisy Head Mazy :)
P.S.
Know that these very helpful (and inexpensive) booklets are available through the ANA. I found these to be very useful.
https://anausa.org/items_for_sale.shtml
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DHM -
I thought the booklets from the ANA were free for the asking - am I incorrect about this?
At the time I got my booklets - and the WTT list - I also joined the ANA, so maybe that's why my booklets were free (?)
Someone please clarify this for me - and sorry for the hijack.
Jan
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"Individual copies of ANA patient information booklets are available at no cost to members."
I think they also include one or more of them in the "Free ANA Information Packet" that you can get without becoming a member. Otherwise they are $1.50 to $3.00.
Steve
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Thanks for the clarification, Steve. I always mention the brochures to newbies because I personally found them extremely valuable.
If they didn't come free of charge, I wanted to know that so I could mention that also. Don't want to lead anyone astray ;)
Jan
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Hi SW,
Just read your post on the facial nerve issue topic, so came to this post to meet you!
You really are a walking miracle. I've never heard of such a thing- no symptoms whatsoever (at least no symptoms that you knew about )
It will take a while to get back on track, but you can do it, I'm sure, with your athletic skills.
Make sure to do something special for yourself every day, no matter if it is a nice bath, a chocolate, a pedicure.....it really helps!
Maureen