How Long Before I Feel Better After a Schwannoma in the Torso?

Hello again all!  This is the next in our series of blogs exploring the question of how long recovery takes...in this case recovery from a Schwannoma in the torso of the body.  The common Schwannomas of this sort include Retroperitoneal Schwannomas, Brachial Plexus Schwannoma, and a number of others.  We decided to put the question out somewhat loosely, attempting to explore what recovery was like for those with Schwannomas anywhere along the torso of the body (not including the spinal column - we did a string of blogs on those as well).  Here are the responses we received from the Schwannoma Survivors group and we hope they are useful to you! - Neil
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Answer 1

My first Schannoma was located on the nerves on T5-T7 ( I believe ), it was the size of an orange. That was in 1994. The surgery was quite extensive. The surgeon cut 9 inches below my scapula, split my latissimus dorsi muscle , expanded my rib cage, extracted a rib , collapsed my lung, then removed the tumor. It was summertime and if the room temperature was not set at 70 or lower, I would labor with my breathing and start hyperventilating. I did not gain complete range of motion , of my right arm ever, bit was about 90% 7/8 months later. I still get numbness across my right breast/chest area and tightness/pain in right shoulder, chest, and ribs after tennis, bowling, football, etc. I also feel random " jolts " shooting within that area.

January 28, 2015, I had a rate gastric schwannoma( grapefruit size), stemming from my esophagus attaching to my outer stomach wall.  
I am still waiting to feel "normal." The heat and humidity slow me down and I feel pressure in my upper abdomen. My spine often feels weak and pained. Funny, this second schwannoma was not too far from my 1st schwannoma.
My incision site still feels like it is " being pulled" and has pain. I was walking very briskly , about 2/3 miles , every other day, in May, but my body had other plans. So, I listen to my body. Walk 3 miles , but not AS briskly and I started using the Total Gym again.
I still suffer terribly with acid reflux and bowel movements ( sorry if that is too much ).
I'm going for genetic testing tomorrow. We ( my mom's side), we have breast cancer in the family. Grandmother and aunt died. Another aunt has been in remission for 15 years. Her daughter ( my cousin June), lost her 3 month battle with stage 4 triple negative breast cancer , on 12/18/2014. She was 50. My mom has been in remission since May; she is stage 4.
My mom, cousin June and June's sister( Karen) all tested positive for the same BRCA 2 mutation.
They are having their ovaries and other reproductive organs removed.
I have requested to be tested for Schwannomatosis, as well.  So, I know I am still recovering . And I know I need to be patient and positive . Let's see what a year post-op brings. 

Answer 2

To date no pain and I am on watch and wait. One year duration between MRI Scans. I can see the chest tumor - thus it is difficult to not focus on the fact that they exist and if growth continues - surgery.

Answer 3  (Brachial Plexus Schwannoma)

The recovery was really a breeze. I only had minimal pain the first few days after the surgery. They told me not to lift heavy objects for several weeks, but eventually I was able to lift pretty much everything I could before the surgery.  More of an issue in recent days is that I’m not able to hold my 14-month-old daughter for very long. This week I had to take her to the doctor and didn’t want to put her down where she could get germy. I could tell my neck was beginning to hurt so I asked a family member to hold her some of the time. That helped a lot but for the next few days I couldn’t hold her with my right arm for very long at all. It isn’t quite the same feeling as a pulled muscle but I guess it’s similar. It’s a very dull, deep ache along the nerve where the tumor had been attached. But I’m more than happy to deal with this discomfort as long as the schwannoma is gone for good.

Answer 4  (Retroperitoneal Schwannoma)

It was difficult to walk and move about for a few weeks and having a bath was extremely difficult as my leg felt quite numb and I had a lot of abdominal pain.   However, after about five weeks the abdominal pain was very intense and disabling.  To go out I had to be in a wheelchair as I just couldn't walk for longer than a few minutes.  On Christmas Day I was in so much pain I couldn't even walk to the next room, my two sons had to carry me!  I saw my GP and he said he would admit me to hospital.  I did not want this so I had yet another scan which proved to be ok.  I was referred back to the Surgeon and he said the pain is more than likely to be adhesions/chronic scar tissue. He told me given the nature of the surgery I could realistically expect it to be up to two years before I really started to feel better.  He then referred me to the Pain Clinic at The Royal Marsden where they altered my pain relief which helped.  It was not until about April/May time that the pain started to subside and walking became much easier and I felt I was getting back to normality. As each day passed I increased my activity to a comfortable level.
I feel I have made a positive recovery, although a very slow process.  I still have the same symptoms in my leg although they are no where near as bad as they were before surgery.  I found the recovery during the first four months to be quite depressing as I was so frustrated at not being able to walk and do everyday things such as driving (I was told prior to surgery I would not be able to drive for three months), lifting the laundry and basic things and being able to go out when I wanted.  I had to rely on being taken out in the wheelchair but I use to look forward to those trips out.  I think you have to be positive and literally take one day at a time,  and don't think about tomorrow, that's what helped me psychologically. 
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How Long Before I Feel Better After a Schwannoma in an Arm or Leg?

Hello all!  This is the next in the series of blogs we are doing which seek to answer what recovery times can be like for people who have had schwannomas in particular parts of the body.  In this posting we seek to answer what recovery time was like for anyone who had a schwannoma anywhere in the arms or legs.  We thank, as always, friends of the Schwannoma Survivors & Schwannoma Fighters Facebook page who contributed their answers to this question - and we hope you find them useful! - Neil
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Answer 1

I have schwannomas in my legs and feet. I had one taken out from my thigh and it only took a week to recover. The others cannot are causing a lot more pain than the first one. I am seeing my neurologist on Monday to see if they can be removed or not. The one on the bottom of my foot is excruciating, the one in my calf only causes pain if I hit my leg against something or touch the area.

Answer 2

Right Arm dec. 2013 and returned to work in feb. 2014. Pain until mid january. Still numb in 2 fingers and hand. Consistent cramping hand even now cannot hold items long time without cramping even typing writing at times cramps up and at times cramps up no reason. Where removed still tingling but no pain.

Answer 3

Right thigh November 2008. Prior to surgery I was unable to walk or bear weight. I was better IMMEDIATELY after surgery. I would say I had aches and "surgical" pain for 1-1 1/2 weeks after surgery but compared to the presurgical it was nothing!! Currently I have one in my right upper arm and left lower leg confirmed with MRI--surgeon is out of country for a month so waiting to schedule next surgery.

Answer 4

I had one removed from the bottom of my left foot in February of this year, 2015. It spanned 2/3 of my foot and was 9 cm by 4 cm long and a smaller growth in my second toe that was 2 cm by 4 cm. I was off my foot for seven weeks total. I had stitches in the bottom of my foot and couldn't apply any pressure for the first six weeks. I had to go weekly for them to change the bandages and check my foot. The seventh week I could slowly start to put weight on my foot. Even after I could walk again and resume regular activities it still hurt for several weeks. I had numbness in my big toe for almost three months after the surgery. Every once in a while I still have some pain that shoots through my second toe. It's just a sharp pain, but quickly passes over.

Answer 5

I had one egg sized removed thrugh the bottom of my left foot in July of 2014. I could not walk at all for six weeks. The pain was excrurtiating. It continued to hurt for several months. Pain from the scar and the nerve for up to six months. One year later the scar causes minimal discomfort but I do get shooting pains randomly from the nerve. It feels like a sharp pin is stickining up my foot and shoots to my knee.

Answer 6

Just coming off of removal of a cluster of schwannomas in my calf. Had one removed many years ago and a cluster grew back (5) Hurt terribly when I would bump it. (You become so protective of your lumps and bumps because the pain is awful )! Still have some residual nerve pain, but 80% better. So happy I had them removed and will go back to same neurologist to have an acorn sized one in my forearm and multiples on my hand .

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How Long Before I Feel Better After Lumbar Spinal Schwannoma?

Hello all!  This is the fourth installment of our series as we have been asking members of the Schwannoma Survivors Facebook group how long it took for them to recover normal life functions after having had various kinds of Schwannoma surgery (by various we mean Schwannomas that were in different parts of their bodies.)  In this blogpost we have asked our friends with Lumbar Spinal Schwannomas this question - how long before they felt better, i.e., could resume normal life functions - and here are their responses.  We hope you find them helpful! - Neil
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First Answer:

I had my tumour out at L4/L5 and a nodule above that. Both were schwannomas. They were inderdural extramedulary. My surgery was 9 weeks ago so I'm still recovering. I had back and pain pain for lots of years before they finally did a MRI and found the tumors. I'm on lot less tablets now than before surgery and only get pain when I over do it. My leg pain is better i would say 80% and I do have few other issues with back as well so know that will take longer to heal.


Second Answer:

Oct 2013, L3L4. Still not doing well. Seeing pain management. Nerve pain is a kill joy, people



Third Answer:

One week after surgery I broke out in a bright red "rash" over the entire ribcage on one side, front and back. That same surgeon misdiagnosed it as shingles, and it was only several years later when I was turned down for insurance that I found out it was post thoracic neuritis. While the recovery for the surgery itself probably wasn't too terrible the neuritis was horrible. I returned to work after 6 weeks but it was months later before the almost unbearable pain from the neuritis lessened, and I still feel it in my ribs with every breath. Having been misdiagnosed with and treated for shingles, there were several mis-starts for treatment. Finally as a last resort I tried acupuncture and fortunately it worked immediately for some relief. I strongly suggest to anyone that they keep looking for a surgeon until they find one with specific experience with schwannomas.



Fourth Answer:

I had a 2cm schwannoma at L4-L5 removed 10 months ago. After 10+ years of intermittent sciatica and back pain, my back feels great. Spent 2 nights in the hospital and went back to work part-time after 4 weeks. It took about 3 months before I could bend over comfortably. For 5-6 months, I felt like there was a rock inside my back at the surgical site. Acupuncture was a great help with this. My tumor did not have a nerve running through it as my surgeon had suspected, but it was stuck to the nerve and had to be peeled off. The left side of my leg and foot have been numb since the surgery, along the S1 dermatome. The numbness isn't a big deal, but my foot aches considerably if I stand too long or walk a long distance. It's been very hard to exercise because of this. Taking neurontin now, which has alleviated the occasional shooting nerve pain, but not the discomfort. Follow-up care has been very lacking. My advice is to ask lots of questions, including how often and who you will be seen by in the months after surgery.



Fifth Answer: 

I now have my second spinal schwannoma between L3-L4. It is currently 3 mm so they will not remove it. The first one before discovered got as big as a golf ball before found. I got down to 80 pounds and couldn't use me right side of my body (leg and arm).... I had a full recovery with minor symptoms. I now have a list of symptoms again and told the tumor is to small to remove. I am going to try a spinal block next month to hopefully return to normal life. It is so hard feeling like the crap all the time and just trying to be normal.... I appreciate this web page to know I am not alone. I wish I could have surgery now instead of them allowing it to slowly grow, I also battle scoliosis and going ongoing physical therapy to correct this thanks to the schwannomas.



Sixth Answer:

(Schwannoma) 11cm at L2/3. Two surgeries and total resection. I suffer terrible nerve pain and limited movement in left leg. It had grown some into my psoas muscle.



Seventh Answer:

I had 99% of my intradural extramedullary schwanomma removed which was located at my L4-L5 about a year ago. I felt immediate relief after surgery but went back to doing my norm in about six months. I still feel some nerve pain but it's minimal. Other than that I can do almost anything now.



Eighth Answer: 

I had my "ancient schwannoma" removed from my L4 vertebrae 6 yrs ago today actually! Took about 30 days to be able to fully get out of bed without vomiting. I still have a pocket of fluid right there that they supposedly can't do anything about. I still to this day have pain and an 8lb lifting restriction. I have nerve damage in my right thigh and also behind left knee from surgery. It wasn't my first and unfortunately not my last schwannoma.



Ninth Answer: 

Had a Schwannoma L5/S1 discovered during August 2012. Had surgery and it was removed. Terrible nerve pain and total numbness of left leg. Left leg very weak with several muscles not functioning. 3 Months ago it was discovered after back pain that the Schwannoma has reoccurred. Neuro Surgeon wanted to remove and give up the L5 nerve root. I did some investigation and went to India Bangalore for Cyberknife treatment. Had 5 sessions and a very good examination with full blood, MRI and CT (PET) scans. Stayed for 2 weeks and only came back the day before yesterday. However the results are not immediate and will take time to get smaller. Now for the wait - 6 months to do another MRI. The HCG Oncology center is actually very good in what they do and the dr's very experienced. Will report back in 6 months time.



Tenth Answer:

Having read peoples experiences here I count myself very fortunate. I started pain in my left leg and groin 2 years ago, it was diagnosed as probably sciatica and prescribed low dose cocodamol. Over time pain increased and was bad at night when flat on my back. Eventually my GP sent me for an MRI scan, this revealed a 17mm spinal tumour. The surgeon was surprised that I could still walk as the tumour was crushing lower body nerves. He told me to expect a numb leg after removal of tumour. In December 2014 I spent one week in hospital following laminectomy of L1, L2 and the complete removal of schwannoma. Thankfully the leg has no numbness, there is a small numb area at base of spin on left buttock. After three months I was able to split logs with an axe and the only reminder of the surgery is some back ache from time to time. Life is completely normal now with no symptoms. May be I have been lucky, may be the tumour will return only time will tell.



Eleventh Answer:

I had surgery for my tumor in February of this year. I had a large schwannoma from L4-S1. My neurosurgeon conducted a laminectomy and was only able to do a partial removal of my tumor because of a great risk of paralysis. After surgery, I was feeling much better and was able to do physical therapy and I also completed 5 weeks of radiation therapy for the remaining tumor. I had no side effects from the radiation throughout the treatment. Two weeks after completing radiation I developed severe diarrhea and skin burns to my back that blistered pretty bad. Pain has also returned to my back and is actually worse than before surgery. Nerve pain radiating down my right leg has also returned with a vengeance. I had a follow up MRI last week and discovered that the tumor had eroded the dura on my spinal cord. So, the spinal fluid has pushed the pia and arachnoid out, creating a large cyst that is now putting pressure on the spinal cord and nerve roots. I am not able to work a full day because of the intense pain. I am now awaiting a second surgery to remove the cyst and repair the hole in the dura.



Twelfth Answer:

I was very lucky with my spinal schwannoma-at least so far. I was not having ANY symptons. This was found when I was being diagnosed with breast cancer via a CT scan. I had my surgery on March 31st. The tumor was the size of a large egg. They were in at my waist and did not get it all during the surgery. He cauterized what was there and, it appears from the MRI I had at the first of June, that it killed it. I will have annual MRIs to monitor this.

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How Long Before I Felt Better After Thoracic Spinal Schwannoma?

Hello everyone!  We are continuing our series of blogs where people with Schwannomas answer the question "How long before you felt better (i.e., able to resume normal life)?" After their particular kind of Schwannoma.  Today's installment were the replies that Schwannoma Survivors gave who have had Thoracic Spinal Cord Schwannomas.  We hope you find them helpful!  Neil
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First Answer:

My surgeon and hospital letters always referred to my schwannoma as being in the lumbar area but it was actually t10-t11.  I was in hospital for 9 days post op. I was off work for 12 weeks with a 6 week phased return after that. It was about 4weeks post op before I started to extend walking from what was necessary to trying to push my body. Lifting things took lots longer- simple things like lifting the kettle took about 6-8weeks before I could attempt.

Second Answer:

My tumor at T4-5 was removed last May. Since partial vertebrae had to be removed to get at it, I have a rod from T3-6 and screws. It was a difficult recovery. The first 3 months were challenging. I still have a great deal of right thoracic pain. Also, some weakening or slumping of shoulders. 

The one-year MRI follow-up showed what appeared to be scar tissue and a bit of hemorrhage.  I had an epidural 3 weeks ago, but haven't had much relief.
On the plus side, prior to surgery I had terrible cardiac-like pain. The removal of the tumor cured that.

Third Answer:  

I had a tumor in T12 removed in 2001. It took 6 weeks before I could walk a reasonable distance. I couldn't pick anything up or put any washing on for around 4 weeks. I was in hospital for 2 weeks including 3 days in intensive care as I had some complications. I also suffered a blood clot on my lung not long after surgery. Apart from all that I am 14 years down the line and I suffer with a lot of nerve pain but I do live a normal life. I have a full time job, go to the gym 4 times a week and have a great social life. The pain before tumor removal was unbearable but now I can bear the pain. 

Fourth Answer:

Thoracic Spinal cord schwannoma was the one that I had (Neil) and when I wrote about this process some time ago in a blog / article, here is how I put it " It was probably a year before I felt fully functional. I was able to walk, with difficulty, within a week or two after surgery. I was able to help take care of our infant son after about 2 weeks. I did have to use small amounts of medication, and still do occasionally. About 2 and a half years after surgery, I got up the courage to try jogging and found that I could do it. I still do struggle with back pain but I have to live with the fact that I have permanent softening of my spinal cord in the area where the tumor was...and that has resulted in pain and discomfort, and some numbness around my stomach." I do still have some nagging issues with stiffness, back pain, and electring tingles down my right leg...but these are manageable, and I still feel quite lucky to have come through the ordeal - Neil (page coordinator)

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How Long Before I Felt Better After Cervical Schwannoma?

Hello all!  We are continuing a weeklong series that seeks to answer, as well as possible, how long it took for people with certain kinds of Schwannomas to feel better after surgery and recovery.  In this blogpost we detail the answers given from friends of the Schwannoma Survivors & Schwannoma Fighters page who returned their feedback on how long it took them to feel better after cervical schwannoma surgery.  We hope you find these useful! - Neil
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Answer 1

 "I had surgery to remove a large schwannoma tumor from my cervical spine at the C3-C-7 level. It was completely removed, but because the tumor was so large and had compressed my cord for so long, it did permanent damage to my cord - that is a big problem. My neurosurgeon told me it would take about a year for me to recover from the surgery, that at the end of 3 years I would have all the function back that I was going to have, and at the end of 5 years, I would be to my "new normal" and feel as good as I was going too. I was able to slowly resume driving after about 4 months. I was very determined to be independent. They had to sacrifice the nerve that controls the lifting of my right shoulder, so my right arm was basically useless after surgery. It is much better, but it is still a disability for me. Working hard with OT and PT is crucial. My legs are very much affected today by the cord damage. I had a lot of help after surgery. Like many, I went from wheelchair, to walker to cane. I can now walk unassisted, but I am slow. There are times when I have to rely on a walker or cane because I have a lot of numbness, pain and weakness in my legs. I went to work after the first surgery after a year, not because I had too, but because I thought it would be good for me to focus on something other than myself. After I had worked a year, I had a multi level cervical discectomy and fusion. After the first surgery, my neurosurgeon had told me that I would have to have this surgery soon. Recovery from that was hard too, and I was never able to go back to work. My upper body weakness is pretty significant, despite years of therapy. Three years after that, I got more bad news. I had another cervical spinal cord tumor at the C4-C5 level. My neurosurgeon was not able to totally remove all of it, so I am monitored for growth. This tumor lies directly in the middle of my damaged cord at C4-C5. I believe that if I had been fortunate enough to have just had one surgery in my cervical area, I would be much better off today than I am. Multiple surgeries in the same area, plus another tumor, makes for difficult days and lots of pain. I honestly can't say that I feel better, but for now, I will consider myself a successful outcome because I am alive, walking and breathing on my own."

Answer 2

"Had schwannoma removed May of 14 from C2-C3. They did a laminectomy and a fusion as well. The tumor had eaten away at much of the vertebrae on right side, so a fusion on right side was impossible. They could only fuse left. My doctor was very cautious with my recovery, and kept me in a neck brace for 8 weeks. It took about a year for fusion to fully fuse. Nerve deficit wise, some came back immediately, some was sacrificed in tumor removal, so it's gone for good but mild, and some has been slowly coming back. As for pain, the pain I felt as result of tumor disappeared day one. I still ache nearly every day. Depends on what I do. I work on my feet, and holding my head up that long gets to me after about 7 hours. People say I still don't turn my head like I should, probably a force of habit since I can. Took about 9 months post brace for maneuvering to come back."

Answer 3

"After surgery I was in ICU for a couple of days, completely immobile in my neck region with breathtaking pain which the morphine didn't touch. They kept me in hospital for a week & then sent me home -- well I stayed with family but I still was in tons of pain and couldn't move my neck. The surgeon said they had to splice thorugh the entire neck muscle to get the thing out so ... pain. Crazy, crazy pain. But in a month after that the pain was dulled to an ache and I resumed most of the mobility, eventually all of it. I went back to work too soon though which did not help. Now several years later all I have is a sort of crackly feeling in my neck when I move a certain way, and sometimes a bit of "ghost sensation" across the suture line. The surgeon saved my life b/c the thing was pressing up my spinal cord against my skull and could have caused me to become paralyzed at any moment and lose consciousness. I actually ended up in the ER with "Bells Palsy" which is how I ended up with the neuro consult that led to the MRI when they found the thing. The symptoms of the Bells Palsy mimicked a stroke but Thank G-d all the feeling and mobility came back tomy face (medication and acupuncture). Anyway that is the short version of my schwannoma story."
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How Long Before I Feel Better After Acoustic Neuroma / Vestibular Schwannoma?

Hi Everyone!  Very often we get common questions at the Schwannoma Survivors page - many people understandably want to know what recovery times are like for the various kinds of Schwannomas located in different parts of the body.  We've received this question so many times, I thought I'd like to organize a series that would attempt to answer them using direct answers given by friends of the Schwannoma Survivors & Schwannoma Fighters page.

When we posed the question "How long before I feel better?" to those with Acoustic Neuromas / Vestibular Schwannomas, here are the answers that came in on the page...we hope you find them useful! - Neil
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Question: "How long before I feel better (or resume my normal life) after Acoustic Neuroma / Vestibular Schwannoma?"

Answer 1:

I had a VS/AN removed on April 7th of this year. I was very asymptomatic no vertigo, tinnitus, no balance loss that I was aware of(but a VNG showed I had 30% loss) and I only noticed that I was a little hard of hearing. MY hearing loss is asymmetrical which is what threw up the red flag. My tumor was small to medium, very dense and very very close to my brain stem. I had the Translabryrinthine procedure done. The procedure took 7 hours. Part of mastoid bone was removed and then belly fat extracted to fill in where the bone loss is, silastic put on top of that and then a titanium plate screwed on. My Neurologist and Neurosurgeon drained spinal fluid so brain would shrink and would not have to be touched during the procedure. I lost whatever residual hearing I had in my right ear, I have to agree that one sided hearing is very awkward but I am learning to cope. I have had temporary facial nerve loss which has not recovered fully as of yet. I feel bruised inside of my forehead, alongside my nose, upper lip and chin on the affected side. I guess that bruising will take e a while to heal. I have started to loose my taste sensation a bit and have a very dry mouth. I go back to the Neurologist in August. I also have a swollen cornea( surgical trauma?) and am dealing with that. Have to do eye drops every couple of hours and ointment in the eye at night with a patch over it as I can to close the eye voluntarily. Right eyebrow is much lower than left and my eyelid is not visible. It has improved a bit. I am driving again. Having difficulty with eating and chewing. I have to cut everything is small pieces. My balance is improving each day and I am back to walking for an hour a day without assistance. I am also looking forward to going on A European River Boast Cruise in around 30 days . MD gave ok ,phew ,as I has it paid up last year. I am a Baby Boomer so because of the age I am expecting this to take awhile. I am going on with my life and feel blessed to be here to talk about it. I live in Northern Virginia(Loudoun County). If anyone on here lives near me I would love to connect. Hope this helps.

Answer 2:

I had an acoustic neuroma removed in October 2014, I went deaf on one side and did return to work. I am struggling pretty bad, but I don't really have a choice, I must provide! Single sided deafness is hard and I have balance issues pretty bad, but j think I am getting better with time.

Answer 3: 

I had an acoustic neuroma removed through translab approach April 7, 2015. I returned to work (teacher) 5 weeks post op. I felt back to normal after 6-7 weeks. My tumor was 2 cm and my symptoms were loss of hearing in one ear, a change in migraines (20 year migraine sufferer), facial tingling, metallic taste in mouth, fatigue, and tinnitus. Post surgery I feel the best I've felt in years. Running roughly 6 miles 4x a week and will start lap swimming when we return from vacation. Deaf in right ear and a very low tinnitus, but feeling great!

Answer 4: 

My AN/VS (egg size) was pressing on my brain stem...They got all of it but left me totally dead (SSD) with loud tinnitus, equilibrium is better than pre op but still have issues, some facial paralysis and half of my tongue is numb (very dry mouth!). My vision is off a bit and i have a slight nystagmus when i look to the right. I can't look left and right (like looking for traffic) as i become very dizzy and can't keep focus - so i make alot of right had turns and do u turns. I went back to work 8 weeks after surgery, am in school and run as much as i can fit in my busy schedule. Still aware of my limitations but know it is just my new normal so i don't dwell on it. I feel blessed to still be able to do what I can, even if sometimes it is frustrating. Back to normal - I don't know if that will ever happen - but I got stronger each day after surgery - probably 6 months after is when I was really good physically.

Answer 5:

AN/VS of 3.45 cm removed March 2015 just starting return to work modified. SSD, tinnitus and grade 3/4 left sided facial paralysis but some improvement. Eye droop/dryness is frustrating as well as not being able to smile.

Answer 6: 

I had my AN removed a year and a half ago. I am a teacher. I came home from a 5 day hospital stay and was very proactive about my recovery. I had right side facial paralysis, mainly in the eye and forehead. I looked up exercises, on the internet, and did them 3 times a day. I also took pictures and video daily to mark my progress. This routine was was imperative in my physical recovery as well as my mental recovery. I drove within the first week after being home. I didn't drive far and I was always accompanied by my Mother. I am a teacher and was given an 8 week recovery period. I started to feel "normal" in the 6 week mark of my recovery. It took about 2 weeks to get to the point where I could sleep in my own bed, the neurosurgeon recommended sleeping sitting up, as to preempt headaches. I took medicine throughout the night for the first 2 weeks because I simply could not sleep through the pain. I felt as though I could go back to school and teach the little ones at the 6 week mark but was told to not push it and take the time I needed for my body to heal. What is important to convey is that you develop a "new normal" during this time. You learn to compensate for things that were taken from you during the surgery. I still have headaches from time to time and ringing in the ear. I am slowly regaining the ability to cry out of the eye that was on the same side as the AN. The facial nerve was intact but "stunned" and had to be given time to wake up. I went back to school and while I was very tired at the end of the day, I was ready to be back to my normal.

This experience has made me stronger and given me a more rounded perspective of things in general.

A New Q and A with Dr Christopher Moertel, Pediatric Neuro-oncologist at University of Minnesota Masonic Children's Hospital

Hello everyone!  Today I'm pleased to offer you a new discussion in our physician Q and A series - this one a five question Q and A with Dr Christopher Moertel, from University of Minnesota Masonic Children's Hospital.  A group member recommended Dr Moertel as he was a specialist in the medical management in conditions, including treatment for Schwannomas and Schwannomatosis.  He kindly agreed to come on board and do a Q and A with us, to answer a set of questions that I had had tabled for quite some time - some nagging issues and matters that needed more attention and physician insight.  We thank Dr Moertel for taking his time to assist us, and we hope you find this discussion useful! - Neil
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http://www.uofmchildrenshospital.org/Providers/Bio/D_121128

1)  Many patients with Schwannomatosis are very interested to know, is progress being made in the treatment and understanding of Schwannomatosis?  If you are aware of particular strategies, medications, or practices that are increasing the quality of life for those with Schwannomatosis, I'm sure our group members with the condition would be very interested to know.

There is significant research underway regarding schwannomatosis and Neurofibromatosis, type 2. The Children’s Tumor Foundation (http://www.ctf.org/Research/Synodos.html) has initiated an NF2 “Synodos” group that is focusing on effective treatment . According to CTF, “This group of talented researchers come from varying backgrounds – from basic science, to translational science, to clinicians – and have joined together to break down barriers, proactively leverage collaboration and shared knowledge, and work together to develop effective new treatments that will end NF2.”

In addition, there is a great deal of cross-fertilization among researchers studying the schwann cell disorders, including NF1, NF2 and schwannomatosis. We have elucidated some of the genes responsible for schwannomatosis. This is the start of a process that will eventually lead to the discovery of drugs that will effectively target these genes or their products. This era of “targeted therapies” is a very exciting time in medicine – people and families with schwannomatosis and related conditions should be very excited about what’s coming down the road. It is also an important time for effective advocacy – letting your legislators know about how important this research is to you, telling your human stories, will preserve or increase funding for important research regarding schwannomatosis.

2)  A group member with Schwannomatosis remarked recently that she had symptoms such as left side headaches, facial pain, and sensations like being stabbed with a knife above the eyebrows and on the neck.  These symptoms predominated on the left side, and to her surprise doctors found a Schwannoma at C1, C2 on the right side.  The tumor was removed and, surprisingly, her pain and symptoms were gone.  In your medical experience, is it common for referred pain or nerve symptoms to be present this way?  Her own surgeon found this quite unusual...

It is an interesting phenomenon that we see in NF2 and schwannomatosis.  As a result of nerve damage from schwannomas, some signals, such as pain, will be re-routed. We even have one young lady who sweats around her ear every time she eats starchy food! This phenomenon, known as Frey’s Syndrome is a result of the nerves stimulating salivation being rerouted to the skin around her ear.

3)  I think many people in our group would be interested to know, how common is it that you find that people need medication after having had even just a single schwannoma, even when the tumor was successfully removed?  For many of us, the pain, pressure, and post op nerve symptoms can be quite significant - and for some this persists almost indefinitely.  People express dismay at still needing pain relief.  Do you find that this situation is relatively common or uncommon?

This situation is extremely common. If a schwannoma is removed because of pain, the pain may frequently persist for months after surgery. We also know that schwannomas may grow at points of nerve injury because of the basic genetic defect in schwann cell growth. Attention to means of preventing tumor growth after nerve injury and effective treatment of post-operative pain is an intense area of research.  Surgeons dealing with patients with schwannomatosis should be extremely knowledgeable about the condition – an uncomfortable surgeon makes for an uncomfortable patient. Likewise, both patient and surgeon should have reasonable expectations for surgical outcomes. Don’t be shy about asking for second opinions – it’s your body and your life.

4)  We would be very interested to know if many of your patients have had radio surgical treatments such as Cyber Knife - and if you find that it is proving successful in the cases you have seen?

I generally discourage radiotherapy for my patients unless it is a last resort. Radiation can cause cancer and can complicate schwannomas – especially in young people (under 60).  Cyber Knife is another word for gamma knife – both are “brand name” forms of stereotactic radiotherapy. Tomotherapy, CMRT and proton beam therapy are other focused forms of radiotherapy.

5)  As you might expect, we have had group members who have suffered extreme facial paralysis as a result of surgeries for schwannomas - commonly experienced after acoustic neuroma surgery.  Do you find that there are particular strategies for regaining and strengthening facial abilities for people who exhibit these symptoms?  What are the medical management strategies that work best for those who have these kinds of facial paralysis?

Once facial paralysis occurs, it rarely recovers fully. Some patients get their facial nerve (the culprit) stretched during surgery and the post-operative facial paresis usually recovers fully. However, if the nerve is cut or sacrificed during surgery, recovery will not happen. The surgical statistics are pretty clear for patients undergoing surgery for vestibular/acoustic schwannoma regarding those who are at higher risk for facial nerve injury based on tumor size and pre-operative nerve function. The surgeon doing the procedure should be experienced and should be able to give you his personal statistics so that you can judge what risk you are exposing yourself to. I make sure my patients go to teams of neurotologists and neurosurgeons who are used to working together and have lots of experience. I am blessed to have great teams at my institution who provide patients with very clear evidence of outcomes. We also have a clear definition of who would benefit most from medical therapy, such as bevacizumab (Avastin) – and can offer other hearing preservation technologies such as cochlear implants or brain stem implants.

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Disclaimer: Dr. Moertel and University of Minnesota Masonic Children's Hospital  assume no liability whatsoever for the comments or advice offered in the content of this blog.  Dr. Moertel has offered his advice generally on the issues relating to treatment of Schwannomas - however Dr Moertel and the Schwannoma Survivors & Schwannoma Fighters group always insist that a person should make all major medical decisions in consultation with one's own physician.