ANA Discussion Forum
General Category => NF2 => Topic started by: ppearl214 on May 27, 2009, 05:32:14 am
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Hi all,
Ok, I have to admit that I am not as "up" on NF2 and shame on me... but, I need to ask all NF2 patients that participate here an important question.
I am in contact with an NF2 patient that inquired to me about something that I am not knowledgeable, so I wanted to ask you all.
Backround:
Older (50's+) woman, bilateral AN's only (full body scans are not revealing any other growths, esp. in spinal column, etc.... only the 2 AN's). One AN treated with GK approx 4-5 yrs ago. GK successful as the AN is necrotic and not growing. The other AN in W+W, no growth shown in recent images.
Woman is now complaining of lower skull-based issues, dizziness and most of all, a "heaviness" feeling in the buttocks and legs. The "heaviness" feeling is the major concern.
Have suggested she may want to meet with a neurologist or neurosugeon re: the "heaviness" in the lower torso/legs to see if they can narrow it down to be possibly something different than the NF2 but... as I noted... I'm not all that versed in NF2.
So, my question is this... with all films only showing the bilateral AN's and no other growths (thank goodness!) and the GK (highly precise beam target) has worked on one AN and the other AN non-treated, could the NF2 be causing the lower torso/legs "heaviness" issues?
I don't want to make suggestions to her that may be wrong. She is following up properly on the dizziness issue, but as for the lower torso/legs "heaviness", I'm not sure and wanted to ask you all.
thanks for any and all help!
Phyl
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Hi Phyl, I am guessing that there is a chance that it could be from another cause for the heaviness. However, does she have balance issues which maybe could somehow be a possible cause also? I get lower back spasmy feel at times and never felt it was NF2 related. I also get some spasms on the upper outer thigh at times when walking like in a mall but doesn't last real long. That I feel is from the balance causing it. Is it a constant feel or just at certain times? I could seee a circulation issue causing the feel in the legs but probably not the hips. is there any swelling anywhere including the abdomen? I only have had the bilateral ANs and no radiation. My last MRI was negative for the spine thank heavens. Her dizziness too is also a question.
Just my thoughts here. Have anyone just Googled lower leg heaviness to see what you might find?
Just keep us updated as another curious happening. Cheryl R
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Phyl,
I have done alot of reading on NF2 and don't recall anything about what you are describing. Me personally, I do have 5 small tumors on my spine, my Dr. feels that they may never be an issue. I was diagnosed two years ago, I'm 50 now. I don't know what the difference would be in how one would feel between having one AN vs. bilatteral ANs. I have the balance problems, ringing in both ears, deaf in my left ear, but really know other problems. If I wasn't getting MRIs every 4 - 6 months I wouldn't even know I still had a AN on the right side.
Sorry I couldn't be of more help.
John
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Cheryl and John... thank you! Truly! I am aware of the "dizziness" issue with her, which, I believe, may enhance the balance issues. Could it be, due to dizziness issues that the body is trying to compensate in the lower torso/legs that may be causing the "heaviness"? I'm just thinking outloud..... With my balance issues, I know my lumbar spine and hips try to help compensate, even while I walk with my cane, but I'm not aware of the "heaviness" feel, even by my situation. Although I have very weak extremity issues (ie: legs), when tested, my legs are strong in muscle strength but weak in feel/action.
I am not aware of any swelling in her abdomen or the severity of the "heaviness" (ie: occassional vs. constant feeling) but am to speak to her tonight (she's also suppose to be lurking here...... I told her about this thread) and will inquire further the questions you all noted.
Appreciate you both taking the time to respond... more helpful than you know... and plu-eeeze... continued wellness to you both! :)
Thanks again,
Phyl
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Phyl,
I'm probably not the one to answer this, but she might want to check for lymphedema. My heaviness is not caused by my NF2, but I assume by the lymphedema and MS. Where is Tony, our NF2 expert? He knows more than any one person on this subject and I would trust whatever he has to say about it. Balance issues and dizziness, hmm, if anyone can get rid of that I would certainly like the "cure", because PT, meds and the Wii Fit are not the answer for me! I hope this lady finds the answers she is looking for and shares them with us.
Hugs,
Brenda
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Hi all (and to the "lurker" :) )
I spoke to her tonight and she is very appreciative of everyone's inputs. Brenda, I also noted Tony to her and want to see if he logs on early on Thursday (I hope so) but what you and all have shared is VERY helpful. Good to know about the lymphedema, as my downstairs neighbor also has it and yes, I could see that as well.
What I am gathering, thus far, from the inputs (and correct me if I am wrong) is that there seems to be a concensus that NF2 and the "heaviness" described usually do not go hand in hand... would that be a fair assumption?
thanks again all! Will continue to monitor (as I now confirm she is as well) to see other's inputs as well.
Phyl
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Sorry guys this one slipped through the net (or web ?)
Anyhow, Yes maybe NF2, - and maybe something else ?
The NF2 source may be covered by the MRI - but things do get missed
spine tumours are quite hard to spot
- they can sit quite tight in amongst the vertibrae (and maybe only 2-3mm?)
There is an all-over-body-check for NF2ers
A simple physical check touch/movement arms legs etc/ etc
-often little things that a patient might not notice
can be picked up when done by an expert - Simple things like
certain skin areas are numb to touch
or full movement is restricted (typical nerve compression issues ?)
(Heaviness is not often described - numb, poor movement/strength or control ?)
Though a misfiring nerve can create some very unusual symptoms
and poor gait/posture do to balance may then lead
to cramp/pain/strains even headaches
Normally a proper NF2 clinic would do such an assesment
The clinics are rare - bit a once a year assessment makes sound sense ?
I`d advise get it checked by an NF2 specailist clinic
- if only to eliminate the NF2 cause
(I make the point because while NF2 can cause 1001 symptoms
it does not cause every sympton ?)
I think it is something else - but until the full evaluation
you just never know ?
Best Regards
Tony
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Tony,
I always appreciate your knowledge and care. Thank you for chiming in. I knew you would have answers. I hope all is well with you.
Brenda
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tony,
thank you! I knew I could also count on you.
this woman has created a profile here... and also left me a phone message noting she wanted to extend a BIG thank you to you all! I hope she posts here shortly.
thanks again all!
Phyl
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Hi;
Was thinking a type of peripheral neuropathy combined with general unsteadiness associated with vestibular issues. That's what I was told by a Neurologist re, the lower leg "heaviness" I feel also.
In reading, about half the cases of those with NF-2, have a neuropathy or poly neuropathy ( several areas ).
I suppose nerve conduction velocity tests could be performed, but it doesn't seem likely even if abnormal, the person could be helped.
Of concern to me would be a developing hydrocephalic condition if mental status would become sluggish or altered in some way.
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Wanted to thank all of you ( a bit late I know) who responded to my query, relayed through Phyl, regarding heaviness in the lower limbs. Russcape, you said you had had this symptom. Has any body been able to help you with it? If so, how did they treat it? I'd appreciate any information you can share.
Cynthia
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cynthia, you did it! you're here and see, not as computer-challenged as you thought. ;D
did you have a chance to read what Tony wrote (I told you about him .... :) ) as his info should also be VERY helpful!
Great to (finally!) see you here and welcome! :)
Phyl
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I WANTED TO RESPOND TO THIS BECAUSE I DO HAVE NUMBNESS IN BOTH FEET AND I WAS TOLD BY MY NEURO THAT IT IS DUE TO NF2. I also looked this up on the Web and various Neuropathy of outer limbs can be associated with Nf2. I was told this can spread to the entire body or stay localized. My feet are always numb. I did have nerve conduction tests done and was told that the nerves just don'T fire like they should. I do not know if this is related to the question in mind-just wanted to let you know of my personal experience and it may help this lady out or not. Just Info-that's all-Thanks Ron
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It is the case that a compression of a nerve pathway by ( an NF2/any) tumour can reduce
the strength/power or feeling sensation in almost any part of the body
In the case of the original querry spinal type tumours appear to have been ruled out
- though they would normally be associated with the condition.
I still advocate a second look here - 2nd opinion ?
Treatment ? - if a tumour is discovered, surgery is the most likely option
to reduce the pressure - sometimes CK (cyber knife) can be deployed instead
Generally the spinal column is not a good place to mess with
- I had a neck tumour surgically removed - I got my neck movement back,
but lost the sense of touch on the skin in the top of my head
(On balance no further loss of movement , so good - but it needs
a good surgeon to operate in this area)
Options:
If you went down an exercise/yoga path
you may get better access for both blood stream and nerve pathways
which may return sensation to the area
If you added Tumeric/Circumn to the diet you may reduce the swelling
in the key area (ie less swelling= less compression= better nerve acesss)
If you tried the Bio 30 option, it may stabilise the growth
(may, yes things are looking good, but as yet unproven)
Finally stateside there are two medical NF2 treatments still at trial stage
Avastin and PC299, both seem to stabilise and in some cases
actually shrink the tumours
So try for the trials ?
a few options ?
Best Regards
Tony
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Hi Phyl, Ron and Tony,
Phyl, Thanks for the welcome and for your caring accessibility and messages.
Ron and Tony,
Are the symptoms you describe in regard to the lower limbs, always the result of a tumor on the spine or can they be caused by significant damage to the vestibular system. I had a full body MRI within the past year which didn't show any growths on the spine. Do you think it's time for another MRI? My doc is not particularly helpful. Says he'll see me for my next annual MRI (Nov.,
Dec.) when I ask for help with the heavy legs problem, seems completely unfamiliar with the symptom. By the way, numbness is not a symptom for me, as is the heaviness and great fatigue. Appreciate any thoughts you can share.
Thanks one again to all those who responded to my initial question.
Cynthia
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I understand your situation and some thoughts for you :
let me say again- it is not absolutely clear that it is an NF2 cause (in your case, possible
but not definately) You cannot easily/accurately diagnose from 3,000 miles away ?
The spine showed nothing ? but did your last MRI have the gallium (?) enhancement
- If they injected something into you just before/during the MRI - then yes it did
- no injection, then I dont think so (this injection improves the contrast of the scan)
Who checked the MRI scan - again, an NF2 specialist ?
My original MRI review missed a 3.0cms tumour - it took a second check to spot it
and yes, it is very hard to see. I mentioned before the "full - body - check" Have you had one ? - if not maybe time to dig out a special NF2 type clinic - they would do one
I am sure your Doc is a great guy - but NF2 is so rare - you are maybe only no 2 or 3 NF2 patients he has treated (again the special clinic has met 50-100)
In terms of damaged balance - a wonky balance may put different strains and stresses on legs
giving the sensation of pain or fatigue- but over time I would expect the body to adjust
regular exercise will improve it over time (yuck for a few days - but gets better ?)
Brain fatigue is definately a feature of damaged balance The whole system is working so much harder - I used to need to sleep mid-day
- but extra exercise over time has almost completely eliminated this
(along with proper rest breaks)
The process can take 6-12mths, 2-3 hrs per day
but it is worth it - the quality of life is so much better
Good luck and best regards
Tony
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Cynthia- I will give you alittle BG on my neuropathy and see if this can relate too you or not. Before I received radiation (FSR) 3 years ago-my right toe was always numb. A week after radiation my whole foot goes numb on both feet. I associated that with my radiation but was told no by Doctor's at Johns Hopkins. So I got into the web and did research myself. I found a study of 10 people with NF2 that had different levels of Peripheral Neuropathy to the lower extremities Some too the hands-feet-torso- etc. not always associated with tumors on the spine though. I did not retain or can remember the site where this was at. Then I had a nerve conduction test and was told my nerves do not fire like they used too-my current Neuro who does work with NF2 patients is the one who told me yes-this numbness of the feet is caused by NF2. I did have a full body scan 2 years ago with contrast and it showed no spinal tumors. I asked my current Neuro if I should have another scan-and he told me NO-if you can function-why bother. So I guess I can function but of course my feet are still numb. I also notice that when I consume too much sugar I mimic the exact symptoms of a diabetic but yet my blood work never shows high glucose levels. Wierd. I really cannot afford too check out with an actual NF2 center so I for myself will muddle along with my symptoms. I do work a strenous 40 hour job-which gives me alot of exercise-I still tire easy though after 3 years post radiation-by the end of the week I am just exhausted. Used too have more energy. Hope this helps you some.
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Hi Tony,
Thanks for all the suggestions. In fact I do see an NF2 specialist at Mass General Hospital. I can't say for sure if he did the full body check you referred to. I can only assume he did when I first went to him. However I did have a full body MRI which he checked and reported no tumors (done last April). I think it was with contrast, will check on that tomorrow. He's had no response to the heavy tired leg problem, indicates to me that he never heard of it. I wanted to see him about all the symptoms I'm having ( dizziness, heavy legs, buttocks and base of the spine, extreme fatigue, poor balance and more. I was told he wouldn't see me before my next annual exam (December). I've been given some exercises to do, but would like to know what your exercise story is. Do you exercise 2-3 hours every day? Who gave you the exercise regimen? Are you still doing it? For how long each day?
I feel up a creek, as though no one is in charge of this horrible condition, the NF2 guy can't be bothered. Don't know where to turn. Hence I'm turning to you. Am enormously appreciative of your sharing with me.
Cynthia
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Hi Dealy,
Thanks for your response. I considered neuropathy as an explanation, but no neurologist I've seen has suggested it and I don't have numbness, but heaviness and extreme tiredness in the legs, heaviness in my buttocks and the base of the spine in my head. One doc did say that these sensations do have to do with the NF2; I think they're connected to the pathology in the vestibular system and the propriocentric function. What have you found to help with the problems you have with your limbs?
Thanks so much for your time and suggestions.
Cynthia
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In terms of exercise
- it is usually best to go with something you actually like doing
lets say as a child you liked ballet, gym, dance etc etc
anthing that involves movement, balance, control
You can make your own one up
- based on your favourite activities ?
Basically create a space at home - for a safe landing if you fall
(dont take risks here - falls are common early on )
start small, one hour per day, and work up
Early days the harder you push the balance system
the more tired you will become (you will need to rest)
- but more importantly the better your long term strength/balance will become
For me it was Golf - initally an hour, working up to four, then six hours (in a day)
Two years down the path - I can work an 18 hr day and can
play a full 18 hole course (3-4miles walk)
(The stateside NF2 survivor - Becks, can now walk 31Ks
or run a half marathon- it can be done)
Check out my earlier posts for the cure/suppression suggestions
Final thoughts, NF2s get ANs (usually both sides)
On the spinal column - next most likely
but also elsewhere (rarely but it can happen)
The full body check is quite physical
involving strength and sensation checks by a doc/nurse
on your whole body/ hands /arms /legs /feet
- its not something I would forget having ?
Best Regards
Tony
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Tony
Thanks for your suggestion about exercise. I just got back from a yoga class and actually feel better than I did before the class. In fact I was feeling so horrible that I had to lie down and rest after doing any thing for more than 10 minutes and even questioned whether I could make it through the class. I guess exercise is at least part of the answer to my problem. Appreciate your knowledge and sharing.
Cynthia
Thanks to you too again Ron.
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Hi;
The original post to this topic is old but I wish to pick up here at "neuropathy".
I was Dx'd with 'Autonomic Neuropathy' as many systems from heart to stomach are now affected: Stomach ( slow gastric emptying ) to bladder ( bladder neck neuropathy ) to bowels ( outer spincter neuropathy ) to legs ( calves esp. ), feet, toes, and essential tremor. These things may be a byproduct of neuropathy of the Vagus Nerve which runs the full length of the body to at least the torso.
Hi;
Was thinking a type of peripheral neuropathy combined with general unsteadiness associated with vestibular issues. That's what I was told by a Neurologist re, the lower leg "heaviness" I feel also.
In reading, about half the cases of those with NF-2, have a neuropathy or poly neuropathy ( several areas ).
I suppose nerve conduction velocity tests could be performed, but it doesn't seem likely even if abnormal, the person could be helped.
Of concern to me would be a developing hydrocephalic condition if mental status would become sluggish or altered in some way.