Meningioma post-op oddness

[saoirse1]

I am 47yr old F. I had a craniotomy on 5/12/05 . This to remove  a meningioma, right frontal convexity, about 3cm.  Had no symptoms till 4/20/05, when I lost feeling entirely in almost entire left side. Called 911,  rushed to Presbyterian Hosp. here in Charlotte. A stroke was suspected but ruled out.  MRI found this thing.  Saw Neurosurgeon 5/4/05. Was placed on dilantin 300 mg and the dreaded decadron to be taken for 3 days prior to surgery. Weaned off steroid before release from hospital 5/16. Dilantin raised to 400 mg because level discovered to be at 8.   Pathology found tumor benign, post-op MRI showed tumor  a goner.  Am very grateful for both these bits of good news.  
Discovered after surgery , profound weakness in my left arm. Have been working hard with in-home  therapist to regain use; this has been very successful so far.
Once in hospital, and several time since, have had what I am being told are "sensory events/phenomena". Periods of numbness that  briefly strike various portions  of left side .
Reported more about  this at F/U with NS 5/23/05. Doc explained that the tumor sat directly between sensory and motor function areas for left side. That my brain is quite irritated from surgery.  These events are what he  believes  to be a part of the recovery process. Assured me these events would not impede the physical progress I've made thus far, which was a big  worry. Expects they will dissipate.   Dilantin level that day, btw, was at 16 and they were pleased with that.  I have also had tingling/pins & needles in both hands. Legs feel "

[CCF-Neuro-M.D.-PW]

It sounds like you did have seizures arising from the area of the tumor that involved sensory symptoms on the left side (the right side of the brain controls the left side of the body_

The specific area that the seizures come from is not within the tumor itself, but from irritated brain around the tumor (in the immediate vicinity). Most of the time, with complete resection, this area is removed also. But ther is a chance that some irritated brain remains. Also, the irritation from surgery in this area can increase the risk of postop seizures, but this effect is usually only in the first week or two. Whether seizures will continue or not it is too early to tell, and time will tell over thenext few weeks. In they do, there are other antiseizure medications that may be more effective than dilantin such as carbazepine or leviteracetam.

Pins and needles that occur bilaterally are usually not due to seizures and may be from another cause ie electrolyte disturbances, hyperventilation, peripheral neuropathy, pinched nerves like carpal tunnel etc. If this persists you should talk to your neurologist about it.

although the seizures seem brief and sensory only, there is a chance that they could spread to involve other areas including loss of consciousness (although less likely on medication). So do not miss your medication, or stop it suddenly. Be careful in anysituation where having a seizure could be dangerous like heights, operating heavy machinery, swimming. you should take showers rather than baths. If you have no furhter seizures you could consult with you neurologist about coming off anitseizure medication in 6-12 months.

Good luck

[saoirse1]

Sorry, My copy/paste partially failed . Below is the rest of my post;
"heavy" about an hour after I take the dilantin, improves next day as I move about more and more.
I am trying to accept  the recovery theory <G> . Went 4 days last week with none of this.  Then numbness in left side neck and chest,  several times Sunday and Monday.  Tuesday,  5/31, left hand  and then most of arm went numb. Went away in about 15 minutes.  Upset because left arm is what I am  working on so hard to "get back".
Called doc with this and other questions. He is actually encouraged because now these "events" seem to be intermittent, 4 days w/o any  a good sign. I am still worried. Very upsetting when these things happen.
Asked also should I see a neurologist. Am told if this all persists, changes, or worsens, would be referred at that point to a neurologist.

Any thoughts/comments greatly appreciated.  Thanks very much for your time.

[saoirse1]

I appreciate the response, but am perplexed now as to how to proceed. I was just told by NS and his PA just the other day on the phone, they don't think these events are seizures...but sensory "events" from irritation due to the surgery.  Told should subside in 4 weeks or so. NS seems quite sincere and competent, yet I was concerned all along these were in fact seizures. Will call Monday, ask for sure to be referred to a neurologist, as have only really seen NS since first release from hospital.

[tweeta]

I had also a non cancerous tumor removed onthe right side of the meninga, four years ago. Had an MRI one year after and there was no sign of recurrance.  I have chronic sinusitis and have suffered from headaches for a long time.Two years ago, I had bad headaches and my Dr. sent me to have another MRI it also came back negative.  Now I'm having bad headaches on the left side of my temple and on top of my head, including the left ear area and all the way back to my shoulders.  I see an allergiest for the allegies and sinusitis andhe prescribed Sedapap for headaches, it takes about three days for this headache to go away.  Before he prescribed this drug he took x rays of my head.  I recently had surgery on my right foot, a neuroma was removed along with correction of bunion and correction of the central toe that stoop up for being so long misplaced with the bunion.  I'm a little nervous about the headache, but the neuorologist that performed the surgery four years ago, reassure me that he got all of the tumor and that he did it in away that this one, is not coming back.

[tweeta]

I forgot to write that since my foot surgery, I have being experiencing some weired stuff with my nerves. My toes move by themselves, and I have involuntary muscle contraction on y right foot all the way to the lumbar area. I have also being having involuntary streches, my entire body streches without me telling it to do it.  Specially when I'm sleep, this keep waking me up at night.  It does not happens while awake though. The nurse that looks after my general health, wants to send me to have an MRI.

A little bit concern. Oh yes, I mentioned it to the podiatrist that did the surgery on my foot, and he said this was normal.

[TIFKEN]

I HAD AN AVM REMOVED IN AUG OF LAST YEAR RIGHT FRONTAL LOBE I STILL HAVE THOSE STRANGE SENSATIONS THAT YOU ARE TALKING ABOUT IT,I WAS TOLD THAT THEY WERE SEIZURES.I had one seizure a few weeks after my seizure a big clonic tonic seizure.I have never had another one and have chosen to go off my meds.I to was told my ns that this would all get better with time and it was fromt he surgery.All I know is that some weird things have happened since my surgery and it has been very hard to belive that it has not returned  ( they say that it cant) but you know when it is your head you do wonder....I hope you start to feel better it will take longet then a few weeks I was told it could take up to ytwo years for you brain to heal that it what my ns told me.How are you? I am 29 and live in Washington

[saoirse1]

Thanks for asking :)

It seems the "events/seizures"  (lol)  are backing off somewhat. Limited to a very specific and small area of my left neck/chin.  Lasting much longer, though. Up to an hour at a time/ maybe 2x day. Nothing yesterday or day before, which was nice.  Neck hurts on and off as well, taking motrin 600 for that. And my legs still feel odd and "heavy".  

Left arm still getting those pins/needles, a little bit on the right, but mostly the left arm/hand. Still worried this will impede my progress as to regaining use and muscle strength in that arm, which was quite useless directly after surgery.  Had first outpatient P/T  yesterday; in-home therapist "graduated" me last week, saying I had made a remarkable recovery.

I asked her about a possible recommend to a neurologist; these people work with them all the time.  This because have definitely decided to pursue care from a neurologist as well as NS, for the less surgically-related component of care...She can't directly recommend, but said will take inforaml "poll" as to who fellow therapists would see if needed. Then I will call NS to report these continuing symptoms, and get recommend from their office. Then we shall see who is best for me.  I am in NC, looking forward to getting back to at least a half/time schedule @ work in the next 2-3 weeks.

Thanks for your input, and how are you doing of late?

[TIFKEN]

Well my little things only last a few sec or about 1 min but that is about it.I have never suffered from a clonic/tonic one like I had after my surgery nor do I ever want to.It has been the hardest year of my life and their were times when I never thought I would get through this.I Work in A Doc office at the hospital so I see sick people everyday.It is very sad and I was so scared that I was going to end up that way.Seizure meds are no fun and I have oppted to not take them. Some think I am doumb but I hate the way that they made me feel.

I hope that you continue to heal and feel better it is such along process. Where did you say that you were from?

[saoirse1]

Hiya,

I'm living in North Carolina, since 1990. Originally from NY.  

As of this morning, I feel as though am coming back to myself, if you know what I mean. Despite odd weird occurences ( yu r so right there!)  and a bit of difficulty with the Dilantin, I simply feel stronger and more "in control" of this adventure now.  And, I just helped my daughter sort laundry!  LOL.  The PA of the NS said to me last week, after giving me in depth answers to some of my questions:  You know what? You are just going to have some weird things going on after brain surgery.  Takes time.  

She's right, I think :) But still going to be shortly established with a neurologist , as well as the NS.

Hope all goes well with you.

[sterling694]

A related discussion, Meningioma and pins and needles was started.