How Long Before I Feel Better? Views on Recovery from Various Schwannomas

Hello all!  This post is the last in our series in which we attempted to determine what recovery time was like for people who have had various kinds of Schwannomas.  We did break them down into categories - various ones in the different regions of the spine, Acoustic Neuromas, etc.  But since Schwannomas do not fall into neat categories, and for the fact that they can be found along almost any nerve pathway in the body - I felt it was necessary to do a final blog post dealing with all other Schwannomas not mentioned in previous posts.  So this last one will have feedback from people with different kinds of Schwannomas, and I will label the person's comments accordingly so you can know what kind of Schwannoma they were recovering from.  This blog will tie up the end of this series - we hope you find them helpful and useful, and I thank everyone who took their time to share their stories! - Neil
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Answer 1 - Trigeminal Schwannoma

I have a trigeminal schwannoma. I had gamma knife surgery this past march. I am not seeing much benefit at the moment but was reassured that I would see a change by xmas. I feel that the procedure is relatively new and they're not sure of the long term outcomes so have nothing more positive to offer me. Sigh. I will definitely post any significant changes in my condition though. Meanwhile I have constant headaches and facial paraesthesia that are persistent.

Answer 2 - Trigeminal Schwannoma

Trigeminal schwannoma 6cm and brain stem compression 60 percent. 1 yr complete resection. Still with facial pain. Headaches. Tumor site pain, blurry vision, balance issues. However I am lucky to be alive.

Answer 3 -  Sacral Schwannoma

I had a sacral schwannoma removed 12 weeks ago was pretty large 9cm x 9cm still having many issues, right side from tumor sight down butt and leg giving me all kinds of issues,also defacating has been a challenge. Doctor says it is because of pelvic floor muscles, starting to lose faith in that as therapy is doing nothing, and from the type of pain i have i feel its nerve related.

Answer 4 - Presacral Schwannoma

I had a presacral schwannoma 6cm removed almost a year ago.  I still have the pain down my right leg I had before removal was so helpful I would be pain free...

Answer 5 -  Presacral Schwannoma

I had a 15cm presacral schwannoma filling my whole pelvis and affecting the nerves in my right leg and badly affecting my bladder and bowel. It was removed nearly 2 weeks ago and my leg seems to be ok and my bowel and bladder are better.Recovery has been good but have times where I still need a small dose of endone particularly first thing in morning and evening before bed..

Answer 6 -  Esophageal Schwannoma

I had 6cm esophageal schwannoma, was removed along with 1/3 of my esophagus through thoracotomy 3 months +10days ago. Was in hospital for over 2 weeks. Recovery has been smooth, had a feeding tube for a month,no pain with a little discomfort. Now I almost can have normal diet (no spicy food yet). Can't lie down within 2 hrs after meals. Sleep on a big bed wedge pillow... But I can swallow my food like normal people do which I'm really happy about it 

Answer 7 - Olfactory Nerve Schwannoma

I had a 3cm schwannoma removed from my olfactory nerve in Jan. It had grown through the skull and was pressing on both my brain and my eye. I was in the hospital for about 6 days, due to a CSF leak. Went back to work part time 5 weeks later, but it took a good three months before I felt that I had my normal level of energy back. Since they removed the right olfactory nerve, my sense of smell is quite diminished and I find that lots of foods taste very different from what I remember. At my three month check up, my eye was back to its normal shape (and I no longer had the tingling/crunching feelings in the eye socket) and the patch where they repaired the leak looked good. I still have the daily headaches that led to the discovery of the tumor in the first place, but they aren't as bad as they were either before the surgery or for the month or two after surgery. I would be interested in connecting with other people who have had olfactory nerve schwannomas....

Answer 8 - Sciatic Nerve Schwannoma

I don't even know what mine was called apart from it was on the sciatic nerve near my tail bone but I was back at work after 4 weeks. They told me to take 9 months and I wish I had.

Case Study # 19, Carol Jackson and the Story of Her Sciatic Nerve Schwannoma

Hello everyone!  We are pleased to present our 19th case study, this one is the story of our friend Carol Jackson and her Sciatic Nerve Schwannoma.  We very much appreciate Carol taking the time to tell her story - continuing the mission we have set to try to get case studies representing as many different kinds of Schwannomas as possible - and we hope you find this info useful and helpful! - Neil
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1)  How old were you at the time of your diagnosis?

55 years old in 2012.  Although at 50, I had a splenectomy where they noted a “mass” that appeared to be a nerve sheath tumor but I did not see the note in my files until we went back to review the file at my diagnosis at 55.

2)  Do you have any history of Schwannomas in your family?

Not that I am aware of.

3)  Where was your Schwannoma located?   

And what were the symptoms that lead to your diagnosis?

L1/L2 embedded in the psoas muscle on the sciatic nerve. 

I began having some back “issues” and some pain lifting my left leg.  An MRI showed a slight herniation at L4/L5 and a “mass” at L1/L2.  The pain in my back was not related to the pain in my leg and with PT, the back pain and herniation subsided.  The pain in my leg, however, continued to increase.  Lifting my leg started to feel like an electric shock going across the top of my thigh from my hip to my knee cap.  Oddly, I was still running with no symptoms almost until surgery. (I think because the running motion did not lift my leg high enough).

4)   Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)

Originally, I went to a neurologist in Jacksonville, FL who diagnosed it as a nerve sheath tumor, likely a schwannoma.  He explained that I would need to have it removed when the pain got intolerable and that I would need to go to a hospital where they had nerve grafting capabilities. He told me these were slow growing and might not need to come out for a few years.  He did not recommend a biopsy because 99% of these were not cancer-related.  He said that although he had not operated on such, he had observed several such surgeries in his time in residency at University of Miami. He recommended waiting for as long as possible because the outcome would likely leave me unable to bike or run.  He said I might also suffer from incontinence or intestinal dysfunction.  At most, he said that I may be able to swim.  He told me of a person my age who had one removed who could walk, but then would frequently stumble because his leg would just sporadically give way.  This was a huge disappointment to me since I have been actively involved in Triathlons and Marathons for 30+ years. Exercise was/is a part of my everyday lifestyle.  I also have a profession that requires a great deal of travel that includes running through airports and walking long distances with luggage.  I envisioned having to find a new home since my home has multiple stair levels. For the first 6 months, my life was turned upside down with worry and anxiety. I was afraid of losing my ability to exercise, work at my job and stay in my home.  I talked with my cousin, who was a general surgeon.  He had a friend whose father had a schwannoma that they had been “watching” for 10 years and said that there were doctors who specialized in only schwannoma surgery.  I decided to do my research and stop putting my head in the sand.  I found 3 renown doctors and selected to see Alan Belzberg at Johns Hopkins. 

After my first visit to JH and my MRI, I started to feel more comfortable.  Dr. Belzberg negated the previous neurologist’s post-op predictions and said that most of his patients return to doing the same things they could do pre-tumor.  He specializes in schwannomas found in the chest and spine (not neck and cranial – these are seen by his colleague at JH). He called my schwannoma “relatively uninteresting” compared to most he operated on but also recommended to operate only when the pain became intolerable.  Over the next 2 years, I had MRI’s every 6 months with a follow-up visit.  He was very accommodating for out of town patients so I could fly in and out in a single day to get all my appointments accomplished. Each subsequent MRI showed slight growth as predicted and it was growing towards the spinal column (almost touching it).  Finally, the leg pain was beginning to affect my lifestyle and I decided I was ready for surgery.  We scheduled the surgery for March 2015 and I was in the hospital for a total of 5 days.  Much to my surprise, the first day post-op (or actually about 18 hours), I walked up a flight of stairs in PT.  I might mention that the first week, my left upper leg and abdomen were completely numb from the surgery. 

Then on the first week home from the hospital, my leg “caught on fire”.  As the nerve “woke up” my leg burned to the touch and made sleeping difficult.  Each day after the second week, the burning area reduced in size.  The feeling in my upper leg returned and now I am mostly back to normal with just a very slight leg numbness. Needless to say the surgery was a great success!  Today I am 2 months post-op and I am running a 15 mile trail race.

I would rate the tumor removal easy, but I would not say as much for the actual surgery.  I will describe the surgery difficult part, but it pales in comparison to the success of my tumor removal.  Dr Belzberg only removes tumors.  I had another team of doctors (under Dr. Eckhaueser) who made the incision, removed my “gut” and exposed the tumor embedded deep in my psoas muscle so that Belzberg could remove it.  I had an incision from my naval horizontally across towards my back (10”).  With the 48 hour pre-op “prep” (clear liquids) followed by 3 days of clear liquids in the hospital, I was starving!  The reason for the fast was so my intestines would not have to work and could heal faster after being moved around.  He was definitely right because when I was able to return to a full diet on Day 4, everything worked great!  I had a VAC – for negative pressure wound healing – attached to me while I was in the hospital recovering.  When they removed it on my last day, the incision was already healed on the outside, no sutures.  That area, however, was very painful.  The recovery of the abdominal area was definitely the most difficult part of the post-op and now, 2 months post-op, there is still some slight discomfort in the region.   I have a large ridge that now protrudes like a “muffin top” on one side.  It may subside some, but nevertheless, is now only a cosmetic inconvenience.  

5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

Get the right doctor as soon as possible. Find a doctor who operates on schwannomas every day, not someone who has only done a few.  These are difficult masses in very delicate areas.  Some of the nerves running across the top of the tumor were some very critical nerves.  But because my doctor works in this area every week, he was able to lift the nerves without damaging them and expose and remove the tumor.  He was also able to access a tumor deep in muscle with as few cuts as possible.

I will also mention that JH has financial assistance for people who need help with travel and family stay while in the hospital.  They have negotiated very reasonable rates at local (good) hotels and can provide travel vouchers. The hospital is outstanding. All rooms are private, the staff is very accommodating and kind.  I was even able to see the operating room the morning of my surgery and it was incredible as a teaching hospital should be (I imagine).

6)   Can you describe what the recovery process was like for you – if you feel you  have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

I left the hospital with a 6 week restriction on exercise.  I was allowed to ride a stationary bike and use weights up to 8 pounds but was restricted from any core exercise.  So I did!  I also took long walks.  On the first day of my 7^th week, I went for a very slow jog.  It was painful but tolerable.  At 2 months, I am still not focused on core exercises, but am enjoying being outside and starting back running.

7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

The shocking pain that was in my left leg every time I lifted it to get dressed or moved in certain ways is completely gone.  My brain, however, anticipates the shock and still has me hesitate when I lift my leg.  I am confident this memory will not last much longer and aside from the numbness in my abdomen around the scar, I have zero ill-effects.