NF2 and lower extremity issues

[ppearl214]

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

[Cheryl R]

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

[Raven]

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

[ppearl214]

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

[Brendalu]

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

[ppearl214]

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

[tony]

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

[Brendalu]

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

[ppearl214]

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

[russcape]

   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.

[cynthiaweisbord]

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

[ppearl214]

cynthia, you did it! you're here and see, not as computer-challenged as you thought. 

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

[Dealy]

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

[tony]

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

[cynthiaweisbord]

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