ANA Discussion Forum
Archive => Archives => Topic started by: wind6 on February 11, 2006, 04:48:29 pm
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Hi everyone,
Well I have a new "something" happening lately and was wondering if anyone here has had this kind of problem. As you all probably know, my tumor was on my left side and surgery was last August. I am recovering really well...much better and faster than my docs thought. Anyway, my new problem is, occasionally my RIGHT arm starts shaking. I can barely control it enough to even type. I feel fine but am beginning to worry about this shaking stuff.
If anyone has a clue what this might be or if its connected to my surgery, please let me know.
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This is probably one of those things that you need to bring to your doctor's attention to find the cause. I don't have a clue as to what it could be, but i think it's significant enough that you really need to see your Doctor.
My husband had some shaking of the hand that was tumor side that was related to the AN and outcomes (6cm). Being yours is the opposite side of the tumor it would be a concern. Please make an appointment soon and let us know what the doctor says.
Thinking of you.
Raydean
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I think I will do that Raydean. I think the peace of mind makes it important for me to find out what is going on. Thank you.
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Hi
Yes, I would see the Dr.
As I remember, the left side of the brain controls the right side of the bodies motor functions and vice versa. Your AN was reasonably large.
Best wishes!
Russ
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Hi Russ
We were told following Chet's treatment that due to where these tumors are located in the brain the right part of brain affecting the left side and left side of brain affecting the right side of body does not apply. This is true with a stroke and other brain injuries, but the location of the AN is in a different area. Any problems would be tumor side ( in Chet's case) right side only. In Chet's case physical problems such as facial paralysis, hand coordination, shakiness, gait change in walking and weakness are limited to the tumor side. He has no left side of body impairment of any type.
I'm not a doctor and could be wrong, but it's a statement that I remember different doctors making over time when I took Chet in for evaluations.
Maybe someone else on the board has more information on this.
Best to all
Raydean
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I feel I need to add my two cents to this thread. My AN was large and located on my left side. My left side was affected due to the size of the tumor. I had trouble controlling my left arm and hand, actually my entire left side immediately after surgery. I went to physical therapy and occupational therapy which has helped quite a bit. Sometimes when I am tired I find my left hand is shakey. I guess I just figured this was a normal side affect of my surgery. It does not happen to me on a regular basis. I am doing exercises my PT gave me and they help, once again patience is required to get through this life changing event.
Also, I would like to comment on the Right Side/Left Side comments previously entered. When I got home from my two week stay in the hospital and rehab. We discovered I could not feel hot/cold or pain on my entire right side, also my blood pressure was slightly elevated. When I spoke with my surgeon, he said my tumor was so large, that when they removed it they tapped my brain stem (he called it a brain stem insult) and that is why I am having trouble on my right side. So yes, the left side does control the right and even though the location of the tumor should not affect your functions, things can and do happen in surgery that can affect your outcome. I am now 9 months post-op and just starting to feel hot/cold in my right hand only, my blood pressure has returned to normal.
Denise
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Denise,
Pleased to hear that things are coming right for you.
I do get angry though when, and there are too many posts to list on this issue, we (patients) go back to the doctors afterwards and mention an issue to be told "oh yeah during the op........
I for one, was not told of a number of issues re my op and do get annoyed by it. Sorry guys, but that feels better.
Larry
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Larry  I think that's why it's important that all patients request their doctor's surgical report after their surgery. In the report your doctor gives a sort of a narrative of what happened in the surgery  including any unexpected things, how much of the tumor was gotten or not gotten, whether the patinet got blood, any involvement with the brain stem, etc. We got reports from both surgeons and it was interesting that they mentioned different things in their reports. A lot of it was written in medical-ese, but I sat down with a medical dictionary and went through it. We had to ask for these reports, it was not offered, but when we asked, they readily provided it. Just a note to anyone who is getting ready for surgery that you may want to request these reports just for your own information.
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Thanks for that. I will write to my ex surgeon to get this report.
cheers
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Becknell, thanks for the advice, I didn't know there was such a thing. Thanks!!! I am going to contact my surgeon too.
Denise
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Thank you all for the info. I am going to ask for mine too. I didnt realize doctors would give that info. I think it would be kind of interesting to know what was going during the surgery.
The shaking subsided after I got a little rest but was back tonight for a short time. I'll let you all know what the docs have to say.
Hope you all had a loving Valentine's Day. Sherry
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Becknell--You could not be so right!! I received my surgical report 6 years after my surgery. My wife and I were numbed by what was written by both the surgeon and the neurologist! I had middle fossa approach and the retractors holding the frontal lobe let go not once but TWICE. Then to top it off, the artery was nicked and the surgery was halted until they could stop the bleeding!! Precisely at that time both docs reported my hearing went flat line. NEVER, did either doc mention that to my wife or any family member present. Unbelievable!! No wonder I have ben plagued by ever increasing headaches.
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I had to request my records when I went to see a new doctor. They can charge you for the information but it was very interesting reading. It also has been helpful for follow up visits with local doctors as my surgery was done across state.
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Well all, I went for my appointment which by the way, is an hour and a half drive(grrrrr), only to be told that my doctor was called away to surgery. Now I will wait until April or May when I meet with the rest of the surgical team. The shaking seems to have resolved itself, thank God. I'm not sure what that was all about. I have a terrible cold right now but otherwise I am doing very well. My facial function is almost back to normal...YEAHHHHHH.
I do have a question about this cold if anyone cares to share. Since my surgery the whole left side of my face has been really dry, meaning my eye, my nasal passage, even the left half of my mouth. Now with this cold my nose is running like water on the left side only. Could this be some normal function returning? My eye almost feels like its beginning to tear too. I will cross my fingers and hope this is further indication of return to normal. I have to say tho, I have never had a cold that hurts in my face so much. Anyone else experience this? Thank you all for your input.
Love and Hugz 2 You all, Sherry
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Don't you just hate when they are so rude to our schedules? I drove 3 hours for my last appt and in the middle of my appt I was dismissed as the doctor had a call from anothe doctor...Hey I'm just as important I just don't make the big bucks!
I too just had my left eye tear after 5 mos of it being dry. I so loved crying out of one eye...which seems to occur more often than ever before I can't handle hallmark commericals! let's up our faces are waking up! I'd love to feel my tongue again!
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Hi, I recently had a  cold and on my left side (AN side) my nose ran all the time, I looked like a two year old!
I think my face is alot dryer on that side, I just use lots of moisturizer. I also took a non-drowsy cold tablet, that really helps with the runny nose. Also, my mouth is always dry.  I drink lots of water, since my the left side of my tongue does not salivate.  I feel like I have cotton mouth all the time. I have drank more water in the last 10 months, than I probably have in my entire lifetime. ÂÂ
I still have no function in my face, which pisses me off. But, I am coming to terms with the fact this might be it.  My facial nerve was severed during surgery.  All I really want is to be able to smile again.  I hate that I look sad all the time.  I am not a sad person!!  I love to laugh and smile and I used to have a great smile.  8)
Denise
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Wind,
My left eye and left side of my tongue have been dry since my an symptoms started (my husband told me I started snoring also). I had GK in August. But in the last couple of months, I've actually been waking up with moisture in my left eye!! And I don't feel anywhere near as thirsty as I used to. Could things be getting better? There is so much I don't understand. I too have an ugly cold right now and my nose is running freely on both sides. My husband says I'm still snoring (whatever - he snored since the day I met him!).
Anyway, just a little in-put for you.
I go to see the oncologist on Monday and I believe she will schedule an MRI. I'm really hopeful that the GK worked and that's why I'm not as dry as I was.
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Great news minnkris...it sounds like things are returning to normal for you. I am really hoping that my nose running is a good sign for me too. Who would have ever thought that a runny nose could give pleasure??? :D
Denise, Have your doctors said anything about possible help for the severed nerve? I know that makes you so sad to lose your smile. I feel the same way. For my whole life most of the compliments I received was "what a pretty smile you have" or "what beautiful eyes"...I felt like I lost the external characteristics that made me attractive. What a blow to my self esteem. I feel so very fortunate to have facial function returning.
Princess, I hope my left eye will cry soon. I know that sounds strange but, before my surgery I didn't cry because I was so involved with trying to make sure my daughters, grand babies, and mother didn't worry or see me as scared. Now I wish I could let the tears go but, my eye hurts so bad I don't dare allow myself the luxury of crying. That is so hard for someone as sensitive as me. I am one of those that cries when I see even a stranger cry! Oh well...maybe soon.
Thank you all again for your feedback.
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Wind,
My doctor says it could take 12-18 months before anything happens, but no guarantees.
I had no idea about the complications from surgery. I only had 34 days from the my MRI to my surgery. Then during surgery the surgeon told my family "the Denise you saw go into surgery is not going to be the same Denise coming out". Talk about freaking everyone out!!!
I guess i will just have to wait and see what happens, then see what my options are down the line. I don't know if I am brave enough to go through plastic surgery. All the horror stories!! Also, I don't want to look like "The Joker" just so I can smile again. :P
Denise
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denise it sounds like you had the fast track to surgery too...I wasn't prepared for what to expect until after it was all said and done. The surgeon just seems like ho hum when I ask about things like it will get better just be patient...well patience has never been my middle name or in my vocabulary lol
When the surgeon mentioned nerve grafts to fix the numbness I just laughed. I can't see myself willingly going through what I consider the same surgery again..>NO THANKS I think once in a lifetime is enough for me I dont' know where some of you get the strength to do it twice (I'm sure if I was faced with a life or death scenario I'd pick life but I wouldn't be happy about it lol)
wind6: I wish I could stop getting so emotional! I too cry when someone else cries. but lately I cry just watching tv. Maybe it's from all the pent up emotions from before surgery..I never cried after diagnosis just pushed up my sleeves to do what needed to be done to make sure things were ok for my son. Delayed reaction maybe? ::)
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Princess,
I know what you mean, about being emotional. Only I am not crying. I get so freaking pissed off at my inability to do things or look like I used to. Sometimes, it all seems so surreal, and I will wake up and it will all have been a horrible nightmare. But I know that will never happen!! I am pissed, at myself for not going to the dr. sooner, when I realized I was having hearing loss and headaches, I am pissed because my dr. made it sound like I would be okay and the same after my surgery. I am pissed that facial paralysis was not even discussed at any of my appts. with the nuerologist/brain surgeon. I am pissed that I don't look like I used too. I am pissed because, I can't ride my motorcycle in the spring/summer anymore. I am pissed because my energy level has not returned. I am pissed from feeling self-conscious.
Thanks, I needed to vent. >:(
Denise
Denise
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As I read the posts and see what we all have in common, and how many of us there are out there, why can't we get more professional emotional help. Why is all of this such a flippin mystery. I have also experienced all of the same emotions as many have listed here, but I can't cry out of my right eye, and it's been 2 years. Sometimes it all builds up at the wrong times and I get so emotional over something I shouldn't, andother times I just get mad and then there's the times I just want to scream. My inability to type well on my daughter's laptop at this particular time is pissing me off right now too! ???
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I think I spent two months so pissed I felt like my head was spinning. I'm trying to put things in perspective. I had to have a 4 hour test done at a lab yesterday and got to see a variety of people come through the door. There were quite a bit worse off than me. It's just so hard sometimes. I need deseparetly to get some new work clothes but find shopping to be such a taxing chore. I didn't much care for it before surgery and now I absolutely hate it. It's too hard to focus on stuff and turn my head so fast while walking. Hoping the clothes fairy will visit while I nap....think it will happen? ;D
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Gosh.....we all sound so much alike its scary. I get sooooooo frustrated just trying to complete ordinary tasks like re-arranging my refrigerator!! I feel half blind and clumsy as a two year old. Shopping is finally getting a little bit easier but still wears me out. I started dating a man just before Christmas and I can see already that my disabilities are going to get in the way. I don't take the blame for this tho...he is a Corrections Officer and is very controlling and unsympathetic. He actually had the nerve to sit me down and tell me that everything I have a hard time doing isn't about my surgery!!! How would he know......he didn't know me before!!! Okay...I didn't mean to get off topic so bad but I guess I just let a little of my anger and frustration show huh...oooops ::) Somehow I think I should wait a bit longer to try and add a personal relationship to my already stressed out life. :P I will shut up now and listen for a while...thank you all for just listening and understanding how difficult this is at times. Loves 2 U all, Sherry
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Sherry as much as I'd love to have a man in my life I'd run from the hills from that one. I did controlling and frankly we need kind loving understanding honely let me help you with that right now! It's def. the not being able to do what I used to that gets me down and realizing that if I had to work full time right now, keep up with my house/yard, and manange my kid I'd be a baketcase zombie running around. I can barely keep up with laundry, remembering to throw food at the kid once day and the ten hours I'm working which the doctor advised against but keeping the health insurance one out on. CALGON TAKE ME AWAY!
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Sherry,
This guy sounds like a creep actually. We are not all like him but I must say (in no defence) that guys are not usually very sympathetic creatures. We don't have the same emotional levels as women. However, we can understand issues better when "it happens to us" - sad but true. For example, Around 25 years ago, I put my back out. I went to the GP (man) who wasn't really interested - take two asprin every 4 hours was his remedy. I actually had a very tight verterbrae which caused muscle spasms. The cure (as I later found out) was to get some physio to loosen the muscles. A few years later, another GP I'd seen at the same centre told me that this other GP had put his back ouit and was now very good with patients who did the same - interesting.
Anyway, more specifically maybe you should come straight out with your issues right at the start before you go out on a date. The initial body language of the guy or the tone in his voice will tell you whether he is worthy of your company or not.
good luck
Larry
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Right on LARRY!!!
I consider myself very very lucky to still be with my boyfriend, from pre-op. He actually has been great. I think sometimes he could be more understanding of my frustrations. But, he still doesn't quite get it. He can still piss me off and be annoying. He does try to help me. But I also know I send him mixed signals. Like don't help me I need to do it on my own, then why the hell aren't you helping me? I can't believe he is still around. I am very happy he is but not sure I would have stuck around. Anyway, I now sound like a total jerk. But, I don't handle stress very well.
Thanks everyone for letting me vent. You know I never found this website before my surgery. I only discovered it after I had returned to work, but, I feel better knowing that its not just me.
Thanks, Denise
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Denise, you are so right about finding a level of comfort in knowing what you are going through is not abnormal. I always find people here that understand what I am going through.
Larry thank you for the info from a mans point of view. I think what made this hard is that in the beginning this guy was wonderful to me. He told me my little crooked smile was charming...oh how that one struck a needy nerve in me. I now feel like he knew exactly what to say to get to me and I fell for it... :-\ Now after a couple of months dating he doesnt want to hear about my surgery or related after-effects, he doesnt want me to talk about my children, and he doesnt want to hear about my classes!!! I am asking myself...what is it I am allowed to discuss with this guy!! Anyway you all can stop worrying...I have removed him from my life now. I do so much better feeling bad alone.. :D
Hope you all are doing okay. Good to hear from you all. Muaaahhh, Sherry
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Sherry, I know tough to be alone as I am now and probably will be forever at the rate I'm going. But I'd rather be alone than with someone who wants to control me or deny my son. Trust me after 10 years of dating I've seen quite a bit lol. Hang tough!
We def. need a big singles girls night out!
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Hi all, Well Phyl I decided to do the girls night out but, it has turned into a girls week out... :D I am going to Florida next month after school is out and I am going with 5 other women friends!!! I am so excited. I worry a lil bit that I find the most peace in my world when I am alone but this is much better than the stress of trying to figure our a relationship...at least for now.
You all are so affirming for me. I am really grateful that I can bring my issues here and find the support that is hard to come by in my daily life. Thanks everyone. LUvs, Sherry
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Hey Sherry when are you coming to fl? where are you going to coming to? I'm on the east coast in the same county they launch the shuttle from. You will have fun, just remember in summer it's hot hot hot...shorts and tshirts is the daily attire for most places! We like to be comfy here :o)
Enjoy your girls trip!!! You deserve it!!
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I will be in Orlando on May 18th and staying till the 21st or 22nd. I am driving so some of my week will be spent at a girlfriends house in Tennessee. We are going to spend early Saturday driving to the Gulf coast(Anna Maria Island)...then back to Orlando and Universal Studio and the clubs so my friends can witness my new wobble, wobble dance....hehehe. ;D
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I'm an hour east of orlando.
Lots to see and do...Jelly Rolls used to be a great hang out at disney boardwalk and universald studios has a plethera of bars on their city walk. I haven't been to any. I have friends over that way if you need some ideas.
The weather's been awesome warm during the days, cool at night!
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So any good ideas on how to dress? I would love to get really decked out but I'm not sure how much walking we will have to do. I have been practicing walking in heels around the house... ;D
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Main attire here during the day is shorts, tennies or flip flops :o) Night time it would depend on where you go and what you're comfortable with. You know hot slut outfit to jeans and sandals. You tend to see it all here, especially in the tourist areas. ;D Universal daytime comfortable shoes! Universal or Downtown disney night time be prepared to walk so make sure you have on something comfortable shoe wise. Just going to a bar locally (or downtown orlando) you can pretty much park close by so less walking.