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Thu, Apr 11 9:35am · Schwannomatosis (NF) in Spine Health

Hello, your post was shared with me because of NF and Schwannomatosis. I am familiar with the Mayo Clinic Rochester only. I see Dr. Robert J. Spinner, a neurosurgeon. My NF/Schwann is very mild and have had only a few tumors and a few surgeries. I know others with more serious cases like yours and I am sorry, I know from them it is very very hard. Dr. Spinner is one of their NF experts and also, with peripheral nerves. There is no cure for NF. There is no medication, unless a form of chemo, to shrink these tumors – to help with the fact that surgery is difficult, because they wrap so much into the nerves. I’ve heard the expression “haircut” in reference to tumors from friends who have had many surgeries. Because nerve damage is at great risk, quality surgery to reduce your tumors may be your best option. I learned from another NF friend that some chemo drugs can help with pain. I want to recall that the drug was Avastin, but you would need to inquire. Dr. Jashiri Blakely at John Hopkins is an expert in NF, Schwannomatosis and Avastin, also. For an opinion beyond general surgery/colon you could consider a good NF Clinic, NF speciality neurological surgeons for a second opinion. I wish the best for you, some choices, answers and less pain.

Thu, Feb 14 6:44pm · Schwannomatosis (NF) in Spine Health

Hi @keikowacko After 1996, I returned to Mayo in Rochester again in 2007. I had the possibility of NF in 1996. I also saw a neurologist first in 2007. With an MRI, I had confirmed spinal tumors. Then, I became a patient of Dr. Robert J. Spinner, a neuro-surgeon. I had two surgeries in 2008. He is an NF and Schwannomatosis expert there. Through Dr. Spinner, Schwan was confirmed by genetic testing in 2008. I return to see him regularly to monitor those tumors. I’m not an expert in the steps for appointments, but you may need to see the neurologist first. The neurologist could choose tests, perhaps MRI to look into a reason for pain. I felt pain in a particular area and that is how my NF had returned from 1996. Since Dr. Spinner is a surgeon, you would go on to see him if you needed surgery. Both times, my primary care physician made the arrangements for me to go to Mayo. I don’t remember the name of the neurologist I saw, a woman, who I saw just once. I know you can contact Mayo on your own, also, and request appointments or doctors. Sorry, that I cannot be more helpful.

Jun 4, 2016 · NF1 and Epilepsy related in Epilepsy & Seizures

Hello, as a person with a form of NF, I agree that café au lait spots are considered the first and most common indication of NF. I think the criteria says 7 or more spots. Since you both have spots, that would be something to definitely talk and show to your doctor. NF can be inherited (50%) or spontaneous. I belong to a Facebook group called NF Mom’s Rock and I recall posts about NF and epilepsy – others asking the same question as yours – is NF and epilepsy related?
I don’t know the answer but genetics could help you with that, too. I understand and share the feeling that NF alone is enough. While they talked of their children with NF and epilepsy, I don’t recall anyone citing any confirmed medical conclusion. I am glad to read that there is help for her seizures, little doll.

Mar 11, 2016 · Schwannomatosis (NF) in Spine Health

It sounds like your journey with NF has been more difficult than I could even imagine experiencing. Obviously, you have great strength. I am not a medically trained person but I belong to 4 NF Foundations and through them I have learned a lot about all forms of NF. The Children’s Tumor Foundation and NF Midwest are great information resources. 1993, at 39yrs, first surgery L2 – L4 and abdominal – NF barely known then. 2008, at 54yrs, second and third surgery – Schwannomatosis was a newly discovered form of NF. My genetic testing was through Mayo Clinic in Rochester. Insurance turned me down too, but Mayo Genetics Clinic and my neuro-surgeon re-applied and re-phrased the need for it 2X before getting approval. The first advice you will always hear is to find a clinic and doctors who are NF knowledgeable/experts. Some of the bigger NF Clinics have specialized pain centers. I love Mayo Clinic, this is where I have come since 1993. I have learned that NF is a genetic mutation, each form of NF a different mutation, there is no cure and no definitive way (yet) to keep tumors from recurring. Tumors grow on nerves, any nerves, anywhere there are nerves in the body. I can picture the tumor having a little root or foot to attach it to the nerve, like you described your surgeon saying. A tumor can be removed from the nerve and maybe it won’t return in that exact same spot, but the genetic defect can cause another tumor to grow right next to it on the same nerve or a nearby nerve. My surgeries did not involve removing any of the nerve. Thankfully, my L2 – L4 area does not hurt me. I incurred some nerve damage in 1993, but it is not in a painful way. Wow, you spent 2 years to walk again? I still remember the feelings and those I will never forget – how stunned, how grateful I felt when I literally walked out of those surgeries. Sadly, pain is one of the criteria most associated with Schwannomatosis. I so hope your last surgery in January was successful and is not causing you more pain. I can’t imagine being without my medical team and their support all these years! A connection, a bond, or just a friendship with them and caring for each other really makes a difference in helping to live with NF. I so hope you have found that too where you go for care. If you like this idea, there is a newly formed Facebook group called Adults with NF – Children’s Tumor Foundation where only adults share their experiences with NF and support each other. My thoughts and hopes are with you. I wish I could be more helpful.

Nov 20, 2011 · Schwannomatosis (NF) in Spine Health

Would anyone like to share their experiences with Schwannomatosis? I run, walk, bike, and snowshoe race with the NF Endurance Team and the Children’s Tumor Foundation to bring awareness and advocacy for Neurofibromatosis and Schwannomatosis. I’m passionate in my hope for a cure for NF. I’m a patient at the Mayo Clinic in Rochester, too.

Nov 20, 2011 · my 2 yr old just diagnosed with neurofibromatosis type 1. what should I know. in About Kids & Teens

You can also learn more about Neurofibromatosis at the Children’s Tumor Foundation at http://www.ctf.org. The NF Clinic at Mayo Clinic Rochester is excellent, and an affiliated clinic, too. Through the Children’s Tumor Foundation website, you can locate a supporting NF Chapter in each state. The CTF has a blog called “Mom’s Rock” where you can share and talk with other moms of children with NF. Yes, NF is scary, but there is a lot of hope, support, and medical advances today. Support and sharing, as well as medical care from a pcp who knows NF will help make your journey and your worry easier.