scalp and facial numbness??

[reg]

o.k. iam aware of the symptoms of this thing (an) at least some of them but i am experincing these symptoms constantly, some days are worst than others my facial features look normal and i can close my eyes so i dont think i have any paralysis, this throws my balance off, i get very disoriented my ? is (are there any meds for it and is anyone else experiencing the something similar) 

[epodjn]

I think there are plenty of us having the same experiences as you are. As far as I know there are no medications that help. I find sleep and exercise to be the two biggest componants to my over all well being and balance. If I don't exercise every day my balance is off. If I'm tired EVERYTHING, balance, memory, etc. is bad.

[Joef]

If I don't exercise every day my balance is off. If I'm tired EVERYTHING, balance, memory, etc. is bad.

thats the key ... when your tired .. its the FIRST thing to go .. balance.     The stronger (or the better shape your in) you are, the longer you can go before it hits ya

I remember working in the yard after surgery ... it was the balance... an almost drunk type feeling ... (a feeling I know well ) long before I felt tried... I would just take a break ... watch TV for a while... and try again .. little by little... I could go longer periods before I needed a break...

[heidi g]

i just had surgery july 28, went home august 1. the surgery went well & my recovery has been phenomenal...BUT (there's always that, eh?) i am with you about the facial numbness. mine comes & goes in location & severity. i am trying different things to see if they help. for instance, i spoke with the ENT at the OSU medical center this past saturday, when suddenly, within an hour i regained all of the total numbness that i had right after surgery & then some more! so, yes i spoke with the on call ENT, hoping this was normal & apparently it is. HOWEVER, my doctor (dr. b welling from OSU, that's ohio state univ) is doing a research/clinical study using anti-virals. long story short, they may help stop late-onset facial paralysis, muscle weakness, & numbness. last thursday, at my 10 day check up, he took me off of this anti-virals b/c they were giving me a rash...2 days later, within 1 hour, more than half of my face was totally numb. so i was told to go back on the anti-virals (who cares about a measly rash?!) & i am now regaining feeling & having less numbness.
also, the ENT mentioned that sitting/laying in the same position for a long period of time can gather fluid & then when you move, the fluid shifts, putting or taking pressure off the nerves, which would cause them to suddenly spasm, so to speak, & give more numbness.

i dunno if all this is making sense, i'm no doctor here...but it IS good to know that others have gone through this & even though it may take a few months, the numbness will get better & maybe even go away indefinitely.

i hope this helps...

[reg]

thanks for the info i am sorry for not getting back to the thread sooner, been preparing for the symposium(very excited), maybe the physicians there will have some answers

[4cm in Pacific Northwest]

I had scalp numbness months 2 & 3 post surgery. Then it was gone.

I never had any facial numbness.

Everyone is different depending on what cranial nerves were involved or close to the tumor. Also different branches of the facial nerve respond differently.

Movement (#7) and feeling sensation of the face (#5) are different nerves and have extending branches

Here is a diagram of the facial nerve branches
http://en.wikipedia.org/wiki/File:Gray790.png

Sensation to the face actually comes form the trigeminal nerve. http://en.wikipedia.org/wiki/Trigeminal_nerve
Here is that diagram
http://en.wikipedia.org/wiki/File:Gray778_Trigeminal.png

Here is a chart of the cranial nerves and their functions
http://en.wikipedia.org/wiki/Cranial_nerves

Click on the hyperlinks to learn more and also the illustrations to get a close up.

There are you Gray’s anatomy lessons for today.

DHM (today call me  MTL "Marian the librarian"  )

[saralynn143]

Cheri, not to worry. Late-onset paralysis occurs one to three weeks post-op. The nerve is not damaged, it just kinda needs a rest, so to speak. It happens a lot after hemifacial spasm surgery, and nearly always resolves completely, as opposed to immediate paralysis which may take years to recover, and then usually only to HB II or III.

Sara

[4cm in Pacific Northwest]

Heidi is correct in that fluid build up can create nerve compression too. It is called hydrocephalus.

I had hydrocephalus post op being that a XXL was removed and the fluid was pooling where the tumor had been. The brainstem and cerebellum were slowly decompressing after being squenched over for so many years by the tumor. It takes a while for the fluids to settle down and the brain to go back to shape.

This explains hydrocephalus
http://en.wikipedia.org/wiki/Hydrocephalus

Mine became extreme, days after surgery, and I started to have significant nystagmus as that cranial nerve was being compressed and the brain was swelling.
Here is a link that you can also see has a video
http://en.wikipedia.org/wiki/Physiologic_nystagmus

If you are having these symptoms come and go -the dura fluid should be closely examined in a MRI. I managed to get through this without a shunt (to drain the excess fluid) but there are some days I wonder if I am still showing some symptoms of this.)

I was placed on an extreme diuretic medication (Diamox  generic name "Acetazolamide") when the nystagmus started to show up. To this date I avoid all water retaining foods (salts etc) and make it routine to eat natural diuretic foods (asparagus etc) because when I have water retention I get really weird.

If you are having other symptoms with the scalp and facial numbness (confusion, gait issues) you really need to discuss this with your physician, in more detail, because you could be having cranial pressure from excess fluid.

Here is a video about hydrocephalus I think is worth being aware of.

 http://www.youtube.com/watch?gl=GB&hl=en-GB&v=fm0CZh_X-vM

DHM

[reg]

heidi g whats the name of the anti-virals that the doc prescibed?