Physicians Who Have Taken Good Care of Us - Recommended Physicians for Acoustic Neuroma Patients

Hi everyone!  Today I'm pleased to offer a new blog that is directed specifically to our friends with Acoustic Neuroma/ Vestibular Schwannoma.  After speaking with members of other support groups on Facebook, we hit upon the idea of creating a page that would be a version of our general "Recommended Physicians Page" - except make this one specific for doctors that specialize and have experience in the treatment of Acoustic Neuromas.  So today, with the great help of our Page Assistant Mary Caspole, we are pleased to offer you this Recommended Physicians Page for Acoustic Neuroma doctors.  These doctors all have received a personal recommendation from someone who had been treated or had surgery for AN, and if you find yourself in the search for a knowledgeable doctor with this speciality - please inquire about one of these.

And I want to be very clear, by these recommendations we are NOT passing judgment on a physician's entire surgical career.   It is always up to the patient specifically to evaluate the doctor and decide who to trust with their situation.  Acoustic Neuroma surgery - like a great many Schwannoma Surgeries, is a very delicate neurosurgical procedure, and not all results will be predictable or perfect.  We have to grant that these treatments are challenging - but, at the same time, it helps new patients to know who might be a good doctor to speak with.  We hope this list is of assistance to you, and have a great day! - Neil

*Note we also have a general list of doctors experienced in the treatment of other kinds of Schwannomas, such as spinal cord Schwannomas, vagal Schwannomas, etc - you can find that list at:

http://schwannomasurvivorsandfighters.blogspot.com/2014/01/recommended-physicians-who-have-taken.html

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Dr. John G Golfinos

NYU Langone Medical Center

New York, New York

http://health.usnews.com/doctors/john-golfinos-16660

Phone: 212.263.2950

Fax: 212.263.168

*Dr Golfinos comes very highly recommended, by multiple sources - one of them also a neurosurgeon who has assisted our page.

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Dr J Thomas Roland

NYU Langone Medical Center 

New York, New York

http://health.usnews.com/doctors/j-thomas-roland-17474

Phone: 212.263.5565

Fax: 212.263.2019

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Dr Elizabeth B Claus

Brigham and Women’s Hospital  

Boston, Massachusetts 

http://physiciandirectory.brighamandwomens.org/Details/1679

Phone: 855.278.8010

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Dr Ian F Dunn

Dana-Farber Cancer Institute 

Boston, Massachusetts

http://health.usnews.com/doctors/ian-dunn-679627

Phone: 617.755.7150

Fax: 617-734-8342

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Dr Daniel J Lee 

Massachusetts General Hospital 

Boston, Masachusetts

http://www.massgeneral.org/doctors/doctor.aspx?id=18570

Phone: 617.573.3130

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Dr Ossama Al-Mefty

Brigham and Women’s Hospital

Boston, Massachusetts

http://health.usnews.com/doctors/ossama-al-mefty-9691

Phone: 617.525.9451

Fax: 617-734.8342

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Dr Carlos Acil David

Holy Cross Hospital

Burlington, Massachusetts

http://health.usnews.com/doctors/carlos-david-10670

Phone: 781.744.8643

Fax: 781.744.3160

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Dr Gregory Lesnik
The office of Thomas H Lesnik, Dr Gregory LesnikNorwich, Connecticut

http://www.lesnikent.com
Phone: 860.886.1947 FAX: 860.823.1644

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Dr. John Y Lee

University of Pennsylvania-Penn Presbyterian

Philadelphia, Pennsylvania

http://health.usnews.com/doctors/john-lee-22356

Phone: 215.829.6700

Fax:     215.829.6645

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Dr Sanjay Prasad 

Inova Fairfax Hospital

Falls Church, Virginia

Holy Cross Hospital

Silver Spring, Maryland

http://www.earsite.com/about-earsite-and-doctor-sanjay-prasad

Phone: 301.493.9409 (Maryland)

 Fax: 301.493.9429

Phone: 703.352.3758 (Virginia)

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Dr. Ashok R Asthagiri

University of Virginia Medical Center

Charlottesville, Virginia

http://health.usnews.com/doctors/ashok-asthagiri-621501

Phone: 434.243.2757

Fax: 434.243.2774

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Dr Bradley Kesser, ENT

University of Virginia Medial Center 

Charlottesville, Virginia

http://www.healthgrades.com/physician/dr-bradley-kesser-35qnn

Phone: 434.338.6960

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Dr Frederic Tovi Schawartz

Holy Cross Hospital

Chevy Chase, Maryland

http://health.usnews.com/doctors/frederic-schwartz-11296

Phone: 301.652.6621

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Dr Kenneth Hill, Jr.

Emory University Hospital 

Atlanta, Georgia

http://www.emoryhealthcare.org/neurosurgery/surgeons/kenneth-hill.html

Phone: 404.778.5770

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Dr Alejandro Rivas Compo, ENT

Vanderbilt University Medical Center

Nashville, Tennessee

http://health.usnews.com/doctors/alejandro-rivas-campo-768505

Phone: 615.936.3866

Fax:     615-343-9725

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Dr William F Friedman

UF Health Shands Children’s Hospital

Gainesville, Florida

http://neurosurgery.ufl.edu/faculty-staff/our-faculty/william-a-friedman-md/

Phone: 352.273.9000

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Dr Melvin Field
Orlando NeurosurgeryWinter Garden, Florida

http://www.orlandoneurosurgery.com/melvin-field
Phone: 407.975.0200

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Dr Michael Seidman

AdventHealth CelebrationCelebration, Florida

https://www.adventhealthcancerinstitute.com/meet-our-cancer-team/michael-seidman
Phone: 407.303.4000

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Dr Swaid Nofal Swaid

Brookwood Medical Center

Birmingham, Alabama

http://www.doctor.com/Dr-Swaid_Swaid

 Phone: 205.949.1800

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Dr Kelly J Scrantz

Women’s Hospital   

Baton Rouge, Louisiana

http://health.usnews.com/doctors/kelly-scrantz-323957

Phone: 225.769.2200

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Dr. Moises A Arriaga, ENT

Children’s Hospital

Baton Rouge, Louisiana

http://www.moisesarriagamd.com/

Phone: 225.765.7735

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Dr Jacob Hunter
UT Southwestern Medical CenterDallas, Texas

https://utswmed.org/doctors/jacob-hunter/
Phone: 214.645.8300

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Dr Paul William Gidley

University of Texas MD Anderson Cancer Center

Houston, Texas

http://health.usnews.com/doctors/paul-gidley-170800

Phone: 713.792.6920

Fax: 713.794.4662

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Dr Peter Roland, ENT

University Hospital

Dallas, Texas

http://profiles.utsouthwestern.edu/profile/16205/peter-roland.html

Phone: 214.648.3111

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Dr Franco De Monte

University of Texas MD Anderson Cancer Center

Houston, Texas

http://health.usnews.com/doctors/franco-de-monte-7738

Phone: 713.792.6161

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Dr. Wayne S Paullus

Northwest Texas Hospital

Amarillo, Texas

http://health.usnews.com/doctors/wayne-paullus-55042

Phone: 806.353.6400

Fax:     806.358.6766

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Dr Maroun Semaan, ENT  

University Hospitals Case Medical Center

Cleveland, Ohio

http://www.uhhospitals.org/find-a-doctor/semaan-maroun-10432

Phone: 216.844.6000
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Dr. Douglas E Anderson

Loyla University Medical Center

Loyla, Illinois

http://doctor.webmd.com/doctor/douglas-anderson-md-7ce52b58-7f63-4e40-a399-4695669f9947-overview

Phone: 708.216.3208

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Dr John Leonetti, ENT

Gottlieb Memorial Hospital

Maywood, Illinois

http://health.usnews.com/doctors/john-leonetti-9698

Phone: 708.216.9183

Fax:     708.216.4834

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Dr. Bruce Gantz, ENT

University of Iowa Hospital and Clinic

Iowa City, Iowa

http://health.usnews.com/doctors/bruce-gantz-9796

Phone: 319..356.2173

Fax:     319. 356.3967

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Dr Roukoz B Chamoun  

The University of Kansas Hospital

Kansas City, Kansas

http://www.kumed.com/find-doctor/chamoun-roukoz-b

Phone: 913.588.1227

            800.332.6048

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Dr Dennis I Bojrab, ENT

Oakwood Hospital and Medical Center  

Farmington Hills, Michigan

http://health.usnews.com/doctors/dennis-bojrab-3790

Phone: 248.865.4444

Fax:     248.865.6161

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Dr Michael Robert Chicoine

Barnes-Jewish Hospital/Washington University

St. Louis, Missouri

http://health.usnews.com/doctors/michael-chicoine-457211

Phone: 314.362.3577

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Dr Rick Friedman
UC San Diego School of MedicineLa Jolla, California

https://medschool.ucsd.edu/som/surgery/news-events/Pages/Rick-Friedman-and-Marc-Schwartz-to- Lead-Acoustic-Neuroma-Center-.aspx
Phone: 800.926.8273

*Note, Dr Friedman is repeatedly mentioned and received favorable reviews as being one

of the best, most knowledgeable neurosurgeons who treat and remove Acoustic Neuromas.  He 

comes highly recommended.

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Dr Steven L Giannotta

Keck Medical Center of USC

Los Angeles, California

http://health.usnews.com/doctors/steven-giannotta-351623

Phone: 323.442.5720

Fax: 323.442.7543

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Dr Derald E Brackmann

St. Vincent’s Medical Center

Los Angeles, California

https://houseclinic.com/brackmann

Phone: 866.478.8462
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Dr Jon-Paul Pepper

Stanford HealthcarePalo Alto, California

https://stanfordhealthcare.org/doctors/p/jonpaul-pepper.html
Phone: 650.736.FACE

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Dr F Chris Holsinger, ENT United States)

Stanford University Medical Center 

Palo Alto, California 

http://health.usnews.com/doctors/f-chris-holsinger-562048 

Phone: 650.736.1680
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Dr Nikolas Blevins, ENT

Stanford Hospital

Stanford, California

http://health.usnews.com/doctors/nikolas-blevins-44409

Phone: 650.725.6500

Fax:     650.725.8502

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Dr Steven D Chang

Stanford Hospital

Stanford, California

http://health.usnews.com/doctors/steven-chang-3947

Phone: 650.723.5573

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Dr William H Slattery 

Good Samaritan Hospital

Los Angeles, California

http://www.vitals.com/group-practice/california/los-angeles/los-angeles/house-ear-clinic/

Phone: 213.483.9930

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Dr Mark Schwartz

UC San Diego School of MedicineLa Jolla, California

https://medschool.ucsd.edu/som/surgery/news-events/Pages/Rick-Friedman-and-Marc-Schwartz-to- Lead-Acoustic-Neuroma-Center-.aspx

Phone: 800.926.8273

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Dr Manuel Ferreira

University of Washington Medical Center

Seattle, Washington

http://health.usnews.com/doctors/manuel-ferreira-277484

Phone: 206.744.9344

Fax: 206.744.9943

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Mr Rupert Obholzer
The Shard. London, England

http://www.londonbridgehospital.com/LBH/consultant-det/mr-rupert-obholzer/
Phone: 020 3457 6255
FAX: 0844 858 1122
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Dr David Edmond John Le Feuvre - neurosurgeon
& Prof. Alan Taylor
UCT Private Hospital, Cape Town
South Africa

(click on link for contact details) http://www.medpages.co.za/sf/index.php?page=person&personcode=82750
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*If you have had an excellent experience with a doctor specializing in Acoustic Neuromas, feel free to visit the Schwannoma Survivors & Schwannoma Figthers Facebook page, and click on the "Message" button to send us a message with your recommendation - and we will do our best to make sure it gets on the next update of this list.  This list will be updated as new recommendations come in. - Neil

https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters

Case Study # 21, Recovery from Schwannomas Removed From the Back of the Knee

Hello all! We are pleased to present our 21st case study - this one detailing the experience of a person who had two schwannomas removed from the back of their knee. We sincerely thank the person for sharing their experience, and taking time to write their story! - Neil
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1) How old were you at the time of your diagnosis?
28 Years Old
2) Do you have any history of Schwannomas in your family?
No
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
I have two Schwannoma’s in the back of my knee, and have recently had the largest removed. The symptoms that lead to my diagnosis were extreme burning and shooting pains from my ankle to thigh, especially at night, and eventually after exercise as well. This went on for a year and a half, and it was very difficult for me to get my diagnosis. I persevered with going to the doctor repeatedly for the same issues, but was diagnosed incorrectly various times. I was finally diagnosed with having Schwannoma’s after having two MRI scans. 
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)
I had my largest Schwannoma removed by soft tissue excision. I consider it very successful. The Schwannoma was confirmed benign and I can walk properly after a few weeks without a crutch. 
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?
I think that it’s important to ask about the risks. I had a meeting with my surgeon prior to surgery in which I asked extensive questions about all of the risks so that I could make an informed decision about whether or not it was worth having surgery. I was mostly concerned with walking properly again and the risk of not being able to feel my leg. However, though there was a risk of numbness, everything has been fine.
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)
Yes, I have made a positive recovery. I have had a lot of great support from my family and partner, and I found that this made a big difference at first because I needed a lot of help getting around. I also learnt quickly that if I didn’t eat a lot before taking my painkillers after surgery I would feel much worse. I was given exercises to do post-surgery and this was vital to my recovery. It was hard, but I did them twice a day and worked hard at practicing walking properly. I had a month off work and slept whenever I felt that I needed to, but I never gave myself a break from exercising daily. 
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)
Yes, I have one tumor left but so far it is not affecting me. I can do more than I could before, as the schwanomma stopped me from exercising, sleeping and being able to get on with my life pain free. Now I feel like I did a couple of years ago, I can sleep without painkillers and can move better than before.
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Case Study # 20, Recovery from Schwannomas at C 7 and at T 8

Hello all!  We are pleased to present for you this case study by an anonymous person who had a Schwannoma at C 7 and another at T8.  This person wanted to offer their story in hopes that it may assist others - and we thank them sincerely for taking the time to write it all down for us.  We hope you find this useful and have a great day! - Neil
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1)  How old were you at the time of your diagnosis?

27.

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

I don't know of any.

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

I had two schwannomas.  One was in my right C7 nerve, which is part of the brachial plexus.  It first appeared as a firm lump on the side of my neck, above my clavicle, with no pain.  I was told that it was just a muscle knot.  After about a year, I started feeling pain in the knuckles of my index and middle fingers whenever I tensed my arm muscles with my arm outstretched.  I couldn't do push-ups or chin-ups without pain.  I also experienced a lot of pain while typing as a software developer.  I assumed it was an overuse injury and bought a better mouse and keyboard.  Two years after I discovered the lump, I returned to the doctor because the lump was undeniably larger.  He diagnosed it with an MRI of the neck.

The other tumor was in my right T8 nerve, on the back wall of my chest, approaching my spine.  It measured 10 x 7 x 6 cm!  The neurosurgeon that I saw for the first tumor suspected it when I told him that I had a stripe of numbness along my side.  I had first noticed the numbness seven years earlier.  I had also felt weird sensations all around the right side of my rib cage and abdomen for at least the past fourteen years.  There were random shooting pains, muscle spasms, and muscle soreness.  These sensations did not change over the years.  None of the second tumor's symptoms bothered me much until I knew they were caused by a tumor.

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)

I had both tumors removed, and both surgeries went exactly as planned.  A neurosurgeon removed the neck tumor with a supraclavicular approach.  He used electromyography and other neural monitoring techniques to avoid cutting any functional nerve fibers while he removed the tumor from the nerve.  He also used general anesthesia, because electromyography works best with general anesthesia, and the tumor was too close to the neck for a nerve block.

The second surgery was more complex.  It was scheduled seven weeks after the first surgery to allow time for recovery and more tests.  A thoracic surgeon performed a posterolateral thoracotomy between the sixth and seventh ribs.  This exposed the tumor, and then the thoracic surgeon and neurosurgeon removed it together.  They removed the intercostal nerve with the tumor because it was a minor nerve, and it had already been damaged by the tumor.

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?

I can't think of any good general questions.  One thing that helped me was making a list of questions ahead of time and bringing them to the clinic on a clipboard.  Once, when I was too nervous, the doctor helped me out by taking the clipboard and starting to answer my questions.

Another piece of advice is to consider a second opinion with a neurosurgeon, especially if your treatment would have a less-than-perfect outcome.  For example, see if it is possible to have the whole tumor removed without damage to the associated nerve.

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 feel like I've recovered well.  The radiating pain from the neck tumor disappeared immediately after the tumor was removed.  For the first hour, my arm felt like it was waking up after I had slept on it.  It felt perfect after that.  I left the hospital early the next morning.  Three days after the surgery, I started experiencing every sensation on one side of my forearm and hand as pain.  If something brushed my arm unexpectedly, I'd think I was stung by a bug.  Once I could see that it was something harmless, I was able to ignore the abnormal sensation.  This hypersensitivity didn't really bother me, and it gradually faded over a month or two.  Besides that, I didn't experience anything unusual.  My neck felt swollen, and I felt more tired than usual for the week following surgery.

The second tumor was a different story.  I still don't know why, but I had trouble standing up after the surgery.  The thoracic surgeon said he had never seen that reaction in a patient before.  Every time I stood, bad sensations would increase until I lay down again.  I would feel dizzy, lightheaded, disoriented, and nauseous and get a headache.  I also experienced ear effects; normal sounds seemed to pulse in intensity with each step I took, and I felt like my head was underwater.  My thoughts were fuzzy, and I had trouble concentrating.  I also got a lot of stomachaches.  I vomited many times before I realized that my symptoms were linked to posture.  I left the hospital on the fifth day, as expected.  Then I spent most of my time lying on the couch, only getting up for a few minutes at a time.  My symptoms didn't improve for a week.  Then a nurse suggested that I try sucking in my abdominal muscles.  Sucking in my gut or wearing an abdominal strap allowed me to stand for much longer without symptoms.  I finally started to improve.  At one month after surgery, I only had to lie down for about an hour or two spread throughout the day, without even sucking in my gut.  At two months, I could remain upright all day.

A constant, low-grade headache started at five weeks after surgery.  I was worried when the headache showed no sign of going away.  However, it started improving after a few months and then disappeared at nine and a half months after surgery.

I didn't experience very much pain after the chest surgery, only an expanded area of numbness.  That numbness unexpectedly turned to pain on the seventeenth day.  The pain lasted for four days before numbness returned.  I haven't felt any of the weird, neuropathic sensations in my side that I had before surgery.

Other than difficulty standing and the headache, my recovery from chest surgery went well.  Breathing is much easier without the tumor, especially deep breathing.  At one year after surgery, the only remaining problem is minor loss of appetite.

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)

I am able to do everything I did before.  I've started running and doing push-ups again, and I haven't lost any range of motion.  My arm feels completely normal after the neck surgery.  Chronic pain can be a problem after chest surgery, but I haven't experienced any.
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*Bonus content...the person who did this case study wrote a longer, more detailed account of their story and if you wish to read it, here is the link:  https://schwannomacasestudy.wordpress.com/

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.

How Long Before I feel better? - Views on Schwannomatosis

Hello everyone!  We have been doing the series in which we sought to understand how long recovery times are for people with various kinds of Schwannomas.  Though we can't ask the question in exactly the same light - I wanted to also include our friends with Schwannomatosis.  Schwannomatosis is the rare condition that predisposes a person to multiple Schwannomas in almost any part of the body.  It is understood to be a rare offshoot of the genetic condition of Neurofibromatosis - and it can lead a person to have multiple Schwannomas along almost any nerve pathway in the body, except the auditory nerves where Acoustic Neuromas arise.  And there is a known variant of Schwannomatosis called "Segmental Schwannomatosis" where people can have sometimes many multiple Schwannomas in one part of the body - in a leg, or a single area of the spine, for example.  Though life with Schwannomatosis presents challenges unique to the condition - and there is not often something such as 'getting over' it...we did want to include the question to our friends with the condition.  Here are there responses...Neil

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Answer 1

I was diagnosed with this this past February. They found a second schwanomma in my body in six months. I am still new with this whole experience. Right now I have continued about my daily life, but fearful of finding another one. I definitely panic more when I feel a pain often wondering if it is another one in my body I didn't know about. (The one in my foot I went with for years before really getting checked out because i thought it was just a cyst in my toe. I didn't realize it covered the whole bottom of my foot.) I was never one to panic before about aches or pains, now I do have to be more aware. I was in the process of trying to get life insurance and was denied the life insurance due to my schwanommas. They told me if I do not have another schwannoma for five years I can apply again. That was hard to hear.


Answer 2

I was diagnosed with Schwannomatosis one year ago along with two of my daughters. My son has recently been tested all clear. Still have four more children awaiting testing for the SMARCB1 mutation. My journey began over 5 years ago when I developed stabbing pains in my foot. I was given an operation to correct hallux rigidus in my big toe and was told that it would cure my pain. It didn't obviously! After years of foot x-rays, foot mri scans, spinal manipulation, epidural injection a doctor decided to send me for a spinal mri. The results came back with several small nodules/tumours in my lumbar spine! Only a few weeks later my then 18 year old daughter suddenly became unable to walk properly. She was taken to A&E where they did various reflex tests and a rectal examination and kept her overnight. In the morning she had an mri scan which revealed two thoracic tumours, 52mm and 18mm. She was moved to a nearby university hospital where they removed both tumours during a 7 hour operation. For days afterwards she couldn't move anything below the waist. She was desperately unhappy and is was so upsetting as her mother seeing her go through this. She eventually got up and about with a zimmer frame after two weeks but kept falling so was confined to bed with a catheter. She was moved to a specialist spinal injury hospital which frightened the hell out of her as there were mostly paraplegics there. After 5 days she discharged herself as she didn't fee she belonged there. She said she would get better more quickly at home where she was happiest. Which turned out to be the right move. She started university 3 months after the operation on crutches. She walked as much as she could and was down to one crutch after a few weeks. By January, 6 months, after the operation she was walking unaided. She continued to improve and two years later she says she is 92% her original health. She still has very slight foot drop but hardly noticeable. Myself, the surgeons won't operate unless my symptoms change affecting my legs or bladder/bowel function! Similarly my other daughter in London. I now have all my fingers and toes crossed that none other of my children are affected.