ANA Discussion Forum
Archive => Archives => Topic started by: nannettesea on May 07, 2006, 09:50:31 pm
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Hello, all-
Nan here. I'm in shock. I just got the reports from my brilliant doc in Chicago and his first theory is that my dizziness was actually caused, not by the AN, but by a rare condition called Mal de Debarquement. It's motion sickness that occurs when you get off a cruise ship (most often) or plane and the body keeps thinking it's still on the boat. I had just finished my honeymoon cruise and a horrendous rocky-boat dive. It's basically sea legs, but lasts months to years.
He has never had anyone with both conditions and says I am one/million. The surgery could actually have made me worse, because I now have one less side to compensate. But then one could ask, would I ever have improved with the presence of the tumor, was the tumor the reason I got the syndrome in the first place, etc. etc.
But MdD (abbreviated) is really frightening. There is no cure, and the average recovery time is 3.5 YEARS. Also hits women in their 40s.
We're working on two other theories, also, but this one feels the most likely. Goes to show when docs see an AN, that's all they see.....
Sigh. I'm rather numb. Kind of relieved, but overwhelmed, wondering where I go from here....
Thanks for listening.
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I had that for a couple of weeks after a 3 day cruise. It lastsed maybe 3 weeks at the most. It wasn't real bad for me, but it felt like I was still on the ship! This was in 1996, so I had my AN then, but didn't know it. Hope yours goes away quicker than what you are saying. Don't know if it would have anything to do with how long your stay on the ship. Mine was just a short trip...don't know if that makes any difference or not.
Sue
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Nan,
Sorry to hear it might take awhile to get through the MdD, but you are tough and can handle it. You will prevail and get through it, I a sure about that!!!
Denise
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Oh Boy Nan! Sounds like a long time to heal but I've been told it can take up to 3 years to heal completely from this an. You need to get a copy of his report and send it to you caseworker for ssd!
hang in there!!!
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Nan...yes you are one in a million....in many ways, and some of them are good! ;)
Looking forward to seeing you this weekend!!
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Thanks, everybody. Don't know what I'd do without you. I'm really depressed today. My doc just said in his experience with people with MDD and VN (vestibular neuritis) recovery usually takes years....
Kathleen...SOOOO happy to be seeing you. Hubby may be around--darn! Thought it'd be just us girls, but maybe we'll do a picnic in the park by the water.
Batty, you're right, just got my appeal stuff from disability, but they'll probably want something more definitive from him which he will probably help with.
Denise, don't know if I'm all that tough, but what choice do we have, eh? How did your appt go?
Sue, you're lucky it lasted only 3 weeks. Your tumor was probably a lot smaller 10 years ago, probably an advantage. How are you doing?
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I'll bring my "No boys allowed" sign. Getting out, if you're up for it, will probably be good for you anyway!!!!
Found an interesting website www.vestibular.org . It's an organization based in Portland and it had more info on MdD than I've seen.
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Nan,
I am sorry you are having a tough time.  I hope your dr can help you feel better and sort through all of this.  I wonder if he could help you find others(which I understand are rare) with the same condition? Perhaps they could share, compare, and offer advice?  Is there much research available online?
Please keep us updated, and if there is anything I can do for you - please ask!
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Nan,
I really am rooting for you!! My appt. went well, really helped my attitude. I am still pissed off, but hopefully directing it in the right direction and not at my family.
I have my one year MRI tomorrow, kind of anxious, but doing okay.
Denise
P.S. I still think your tough!
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Good luck with your MRI Denise.........Mine is coming up Thursday.
Paul
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I was going to respond to the other posts to wish you both well with your upcoming MRIs - but I'll do it here since you both posted back to back.
Good Luck to both of you!!! Hope your scans go well and you have excellent results! :) I'll be watching to read your results - and I'll keep my fingers crossed for you.
:) :) :)
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Sue, you're lucky it lasted only 3 weeks. Your tumor was probably a lot smaller 10 years ago, probably an advantage. How are you doing?
I'm doing okay, thank you for asking! Every day is different! Some days I have more energy than others, but I'm taking it easy and it will all be better soon. I know I'm one of the lucky ones because I don't have the severe balance issues that a lot of you have. At least, so far. I am hoping I dodged the bullet on that one.
Sue
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Hi, I went on vacation last year to Lake George. We rented a boat all week and every day I was on it with my girls. By the end of the week, I could not shake the feeling of sea legs and very dizzy. I ended up going to my AN specialist in New York and told him that these symptoms are not going away and he mentioned to me your diagnosis and that it could possibly linger for years. I have a very small AN (8mm) not treated as of yet and he said that it could be a possibility because of my AN, I am at greater risk of developing this constant motion problem and to try to avoid boats or cruises that could aggravate it. Thankfully mine lasted about two months longer and went away completely. It was mild compared to what you are experiencing. I hope it goes away like mine did. Try to stay positive and keep busy. I found the more I focused on the problem, the worst it appeared. I hope this helps.
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Thanks, lthompson. I just wish I had ridden it out--ha ha-- a little longer before jumping into surgery. But the doctors didn't tell me they thought it was MdD....
Nan
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 I am at greater risk of developing this constant motion problem and to try to avoid boats or cruises that could aggravate it.ÂÂ
Well, shoot, there goes that trip on the QEII!! :(
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Hay Nan,
Looks like we'll have to drop you off at the next port on the good ship PBW!
It must be annoying but the good news is that you know there is a light at the end of the tunnel.
Laz
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Yep, no more cruisin' for me, could be one Looooong tunnel, Laz.
Nan
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NO Nan is NOT allowed to get off the PBW...it's a special ship that will accomodate all our various needs! So Nan gets to stay!
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Nan, you ARE one in a million and we love you for it! :-*
HUGGLES!!!!!!!!
Phyl
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Hi Everyone-
I have been discussing Nan's dizziness with her off line but wanted to share my story.  I am not so sure of the MdD diagnosis.  I was diagnosed with an AN in my left ear in 11/03 (1.0 x0.9 cm but growing out of the EAC towards my brain stem). I had it removed by Dr Fayad/Hitz at House Ear in Los Angeles, CA on 12/3/03 via Middle Fossa approach. I was in the hospital 6 days because I developed a CSF Leak on day 2 and required a spinal drain for 3 days.  No more clear fluid from my nose at that time.  I had the usual balance/dizziness/fatigue problems before and then more so post surgery.  I recovered and for several months I was doing quite well. I lost my hearing in the left ear but minimal facial problems. I had a BAHA hearing aide placed 4/04 which has considerably assisted in my recovery and my return to work.  My balance was functional, not perfect but very functional.  I returned to work 7/04 as a nurse case manager in a community hospital.  Then in January 2004 I started to feel progressive balance and dizziness problems resulting in my inability to function/work, I felt awful. I went on disability again 5/05.  I had vestibular testing that was negative except for some mild nystagamus.  My physician stated because I had a middle fossa approach and they tried to save my hearing (unsuccessfully) they did not cut the complete vestibular nerve (the vestibular nerve has an upper and a lower branch, the lower branch does not always respond to standard vestibular testing).  Because I was cotinuing to get worse my physician started me on gentamycin injections into the affected ear.  The first one lasted about 2 months and then the dizziness started again.  We tried 3 more gentamycin injections which were not as helpful.  After working with my neurotologist and my nerurosurgeion we decided to procede with a laybrynthectomy and vestibular nerve resection which was done 7/05. The belief was that I was growing a neroma on my vestibular nerve that was damaged during my original surgery and this  was giving off bad signals to my brain, causing my problems.  After surgery I was told that I had vestibular nerve fibers growing in my hearing nerve (quite unusual, they discussed my case at grand rounds, Dr Hitz/neurosurgeon states he had not seen this before and he as done thousands of ear surgeries, talk about one in a million). Therefore, they also resected my hearing nerve since I was already deaf in that ear.  I was significantly more dizzing with very poor balance post op with  nystagamus,  my physicians felt this was a good sign,  if the nerve was completely dead then cutting it should not have made my condition worse.  I went to vestibular rehab for 4 weeks and progressively improved.  I was able to return to work in September 1995 with minimal balance/dizziness problems.  A success!!!
However, in January 2006, I started leaking clear fluid from my nose, having headaches, nausea and dizziness again. This primarily happened only whenI was very active.  I had an MRI that was normal.  I then had a radionuceide cysternogram (this is a horrible test, they inject radioactive material into your spinal canal/CSF, then they shove cotton up your nose and into your eustacian tube, these cotton pieces are connected to strings that are taped to your face, cotton and strings are left there for 24hrs, very uncomfortable, I constantly felt like I was gagging, then on top of that I had to exercise after coming home because this was the only thing I knew would  cause the fluid to run out of my nose).  Anyway - an intermittant CSF leak was diagnosed and I returned to surgery on 5/1/06 one more time for a blind closure of my left EAC (this consisted of a tubal ligation of my eustasion tube, filled the area with fat, removed my ear drum and sealed my ear shut). I also had a spinal drain for 2 days after surgery. My head feels disconnected from my body again but improving everyday, headaches are gone, no nausea.  I have a doctors appointment today to remove the stitches in my ear and behind my ear.  I am concerned that this did not fix the leak completely because I still have salty fluid running down the back of my throat, but nothing out of my nose.  So I will see what my doctor says today. I am not able to lift, push, pull, bend over, strain, or anything else like that until further notice.
Howver, I must tell all of you - I still feel very blessed, my facial nerve is 90% intact, I have wonderful doctors that continue to work with me and resolve my issues and have never doubted what I was telling them.  I have a wonderful and understanding husband who loves me no matter what, a wonderful 16 year old daughter that is supportive and loving and an extended family that continue to support and pray for me.  I have a strong faith in God and that all of this has a purpose in my life.  I am a registered nurse and believe I will be able to return to the job I love. ÂÂ
Cheryl
PS - I love cruises and don't plan to give them up. In fact I went on a 7 day Mexican Riviera cruise before my most recent surgery. I took Bonine/Phenergan every 12 hours and felt wonderful. When I came home I returned to my same headaches/nausea/dizziness but no worse than before the cruise.