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Neurofibromatosis: Diagnosis and Treatment

Sandeep Dhanyamraju MD
Medically reviewed by Sandeep Dhanyamraju
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Sandeep Dhanyamraju MD
Medically reviewed by Sandeep Dhanyamraju

Neurofibromatoses are hereditary diseases. Doctors characterize them by the formation of benign tumors in:  


  • skin;
  • soft tissues;
  • nervous system;
  • internal organs. 


Doctors can diagnose this disease based on patient examinations. They can also detect tumors with MRI and CT scans of the spinal cord, brain, and internal organs. Neurofibromatosis therapy is symptomatic. Doctors treat it with tumor resection, radiotherapy, and chemotherapy. Neurologists distinguish six types of neurofibromatosis

Types I and II are clinically significant. Common symptoms include:


  • neurofibromas on the skin;
  • tumors of the spinal roots;
  • tumors of the auditory and optic nerves;
  • pigment spots;
  • bone deformities.


The disease’s prognosis depends on the disease’s degree of spread. But in most cases, it is relatively favorable. But, we should not forget that many skin manifestations can cause discomfort to a person. It is especially true for women anxious about their beauty and face. 

Thus, the development of tumors in the face can lead to depression. Psychotherapists must also correct it. Read our article to get more useful information about neurofibromatosis medication.


Neurofibromatosis Diagnosis

The basis for diagnosing neurofibromatosis type 1 is the presence of spots. Their number is more than six spots of light brown color. They occur during intrauterine development and in the first couple of months of life. The characteristic signs of the disease are pigment spots in:


  • groin;
  • armpits;
  • on extremities. 


Family history is of great importance in the diagnosis of the disease. Doctors also pay attention to the results of the general examination of the patient. A specialist can suspect neurofibromatosis diagnosis in the following cases:


  • the presence of more than two neurofibromas in the patient;
  • more than five coffee-colored pigment spots;
  • hamartomas of the iris;
  • presence of an optic nerve glioma or neurofibromatosis of the auditory nerve;
  • neurofibromatosis in close relatives of the patient.


There are many serious reasons for the neurofibromatosis treatment:



Before proceeding with the examination with diagnostic equipment, the physician should:


  • gather a medical history;
  • examine visible signs;
  • inspect skin pigment spots and tumors.


A neurological examination to assess the coordination of movements is mandatory. During the examination, doctors use the following methods for neurofibromatosis diagnosis:


MRI or CT scan

Doctors use magnetic resonance imaging and computed tomography to visualize:


  • the spine;
  • internal organs;
  • brain


These methods accurately determine the size and localization of tumors. Imaging techniques can identify the presence of a neurofibroma here. Bilateral neurinomas of the 7th pair of cranial nerves are diagnostic criteria.

Gliomas, schwannomas, and meningiomas are often detected. Neurologists characterize type I by the development of plexiform, normal neoplasms, and gliomas.



To determine the degree of scoliosis, doctors perform spine radiographs. Neurologists perform procedures for neurofibromatosis therapy to confirm and assess the severity:


  • scoliosis;
  • atrophy;
  • hypertrophy of bone tissue;
  • local thickening and erosion of bone structures. 


Physicians also observe:


  • thinning of the cortical layer;
  • false joints;
  • sphenoid wing dysplasia;
  • arched curvature of the tibia and fibula;
  • cysts of the long bones.


Electrocochleography and Impedancemetry

The examination allows you to determine the localization. Doctors will also see the cause of the abnormalities in the patient’s auditory system. They need it for giving neurofibromatosis medication. Electrocochleography and impedancemetry are useful when the auditory nerves have tumors. 

There are complaints of increasing deafness (hearing loss). The results show decreased hearing acuity and the presence of auditory neuropathy. They also determine the cause and location of the disorder.  



Ophthalmoscopy is a method of examining the eye fundus. It allows you to evaluate the retina and optic nerve. Neurofibromatosis therapy of type 1 has many consequences:


  • plexiform neurofibroma of the eyelids;
  • melanocytic hamartomas of the iris;
  • gliomas of the optic nerve fiber;
  • astrocytic hamartoma of the retina;
  • corneal nerve thickening;
  • neurofibroma of the conjunctiva;
  • ischemic lesions of retinal veins.


The pathognomonic sign is light-colored spots on the fundus and iris (hamartomas). In posterior subcapsular cataract type 2, doctors can notice the eye’s lens clouding.

It is one of the main diagnostic methods. Sometimes doctors use hardware tests, genetic screening, and genealogical analysis.


Treatment for Neurofibromatosis

Neurofibromatosis treatment

Only professional symptomatic supportive treatment is available to sick people. Since there are no effective cures for the disease. It helps to overcome the various symptoms and complications:


  • When tumors compress organs, surgical intervention can be necessary.
  • In 10% of cases, patients can develop cancerous neoplasms. In these cases, the use of chemotherapy is appropriate.
  • Patients with lesions of the musculoskeletal system use rehabilitation measures. That’s why some doctors recommend physiotherapy and physical exercises.
  • Supportive monitoring therapy also works well. It helps in cases of slowly progressing disease. There are cases where it stays in the same position for the rest of your life. 
  • Medication neurofibromatosis therapy can also show good results. But, it is important to understand that this is a symptomatic treatment. It works well for non-aggressive variants of the disease.


Read more about neurofibromatosis therapy below:


With this method, doctors constantly track the patient. The person undergoes all necessary procedures at regular intervals. It is necessary to determine the progress of the disease. Physical therapy can also be one of the supportive options. It works great with:


  • children;
  • people with mobility impairments;
  • patients with scoliosis.


Most optical gliomas are asymptomatic. So doctors need to check only size increases. Chemotherapy is the therapy of choice for:



Neurofibromatosis Medication

Doctors use medication to treat neurofibromatosis. But their prescription refers only to symptomatic treatment. They do not reduce the problem itself. Doctors use the following medications:


  1. Ketotifen. This drug refers to anti-allergic drugs and has a membrane-stabilizing effect;
  2. Fencarol. The drug does not depress the CNS. But you can observe a weak sedative effect in rare cases. The drug has a good antipruritic effect. Therefore, doctors prescribe it to people with itching in the disease clinic;
  3. Tigazole. This drug contains vitamin A. There are no contraindications to the use of the drug. People with hepatic or renal failure should take it with caution. And also, be careful in case of individual intolerance to the component;
  4. Lidase. It contains hyaluronidase as the active ingredient. It is an enzyme, the action of which goes at hyaluronic acid. The treatment for neurofibromatosis has many advantages:
  • it increases tissue permeability;
  • it Improves tissue tropism;
  • it increases the elasticity of scarred areas;
  • it promotes the resorption of hematomas and eliminates contractures.


The doctor prescribes these medications strictly on an individual basis. As it is not rational to use the above drugs in every case.



Since neurofibromatosis causes significant cosmetic defects, many patients need plastic surgery. You can quickly get rid of the growths with radiation neurofibromatosis therapy methods:


  • gamma knife;
  • cyberknife.


It is a modern non-invasive technique. It is based on the use of radiation in the optical range. The doctor’s medical laser is of the highest quality. The laser heats the affected cells at high temperatures. Then they turn into a jelly-like substance and die off. In addition to its effectiveness, laser treatment has a pronounced cosmetic effect.

Doctors can help you get rid of neurofibromas in just a few sessions. For patients, this neurofibromatosis therapy is completely painless. There are no side effects or complications after treatment.



Also, tumors and Lisch nodules are often treated surgically with cryoablation. Cryodestruction is a local method of removing neoplasms under sub-zero temperatures. Surgery for neurofibromatosis is necessary to relieve the patient’s condition and remove cosmetic defects.


When You Should See a Doctor

You need a genetic test for neurofibromatosis treatment. If you have the gene responsible for the progression of the disease, go to the doctor. However, it’s important to know that this is a very expensive test for neurofibromatosis diagnosis. If you don’t have the opportunity to have this test done, you may have the following symptoms:


  • The characteristic symptom of type 1 is hyperpigmentation. 
  • In type 2, highly differentiated tumors are formed. They are more aggressive than in type 1 disease. There are no pigment spots.  
  • Neurofibromatosis type 3 is characterized by many neurofibromas, accelerated neurolemmas development, and optic nerve gliomas, leading to visual impairment. 
  • In type 4 disease, the symptoms are similar, and the risk of damage to the optic fibers remains. 
  • Type 5 can cause pigmented dark spots and large tumors. They provoke asymmetry in the body.
  • Type 6 has only pigment spots. 


What to Expect From the Doctor 

You will hear positive prognoses with a high probability of success in neurofibromatosis therapy. Since science and medicine do not stand still. Scientists are making a lot of discoveries, so the chances of a good and stable life are great. 

Scientists are actively developing etiologic treatments for neurofibromatosis. Therapy with RAS inhibitors (tumor growth activator proteins) in people with neurofibromatosis type 1 is at the stage of clinical trials. Genetic engineering methods are under theoretical development. 

The efforts of geneticists are aimed at:


  • creating and introducing in patients the normal gene NF1. It is responsible for the synthesis of neurofibromin;
  • deciphering and introducing the gene FN2, which ensures the transcription of the schwannomas protein


Some medical centers are attempting to use neurofibromatosis treatment based on the combined use of mast cell membrane stabilizers, antiproliferative drugs, and enzymes that correct metabolic processes.


Сontact Lone Star Neurologists

First of all, you should make an appointment to see a dermatologist for a neurofibromatosis diagnosis. Ask for help at our Lone Star Neurology clinic. The doctor will examine you and prescribe further therapy. We have the best professionals who love their job!



  • How to stop neurofibromas from growing?

Use preventive measures to reduce the progression of the disease. Doctors do not treat neurofibromatosis because it is a mutation in a gene. There is only symptomatic treatment, which is tailored individually.

  • Is neurofibromatosis type 1 fatal?

Yes, there is a possibility of death with this type. But, if you go to a doctor in time, you will greatly reduce it.

  • Does neurofibromatosis worsen with age?

No, it will not worsen with proper treatment. So ask professionals for the right help beforehand.

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Edward Medina
Edward Medina
15:34 30 Jun 22
Just such an amazing staff that makes you feel like part of their family. I’ve been going there for over 5 years now... and each visit I get the very best care and treatments that I have ever received in the 20+ years that I’ve been dealing with severe debilitating migraines. Since i started seeing them the number of my migraines has dropped from 15-20 a month to 2-3 every 3 month. I highly recommend them …they will change your life!read more
Daneisha Johnson
Daneisha Johnson
22:20 19 May 22
Dr. Askari was very kind and explained everything so I could understand. The other staff were nice as well. I would... have gave 5 stars but I was a little taken aback when I checked in and had to pay 600.00 upfront. I think that should have been discussed in a appointment confirmation call or email just so I could have been more
Jean Cooper
Jean Cooper
16:54 29 Apr 22
I love the office staff they are friendly and very helpful. Dr. JODIE is very caring and understanding to your needs... and wants to help you. I will go back. would recommend Dr. Dr. Jodie to other Patients in a heart beat. The team works well more
Linda M
Linda M
19:40 02 Apr 22
I was obviously stressed, needing to see a neurologist. The staff was so patient and Dr. Ansari was so kind. At one... point he told me to relax, we have time, when I was relaying my history of my condition. That helped ease my stress. I have seen 3 other neurologists and he was the only one who performed any assessment tests on my cognitive and physical skills. At one point I couldn't complete two assessments and got upset and cried. I was told, it's OK. That's why you're here. I was truly impressed, and super pleased with the whole experience!read more
Leslie Durham
Leslie Durham
15:05 01 Apr 22
I've been coming here for about 5 years. The staff are ALWAYS friendly and knowledgeable. The Doctors are the absolute... best!! Jodie Moore is always in such a great mood which is a plus when you are already stressed. Highly recommendedread more
Monica Del Bosque
Monica Del Bosque
14:13 25 Mar 22
Since my first post my thoughts have changed here. It's unfortunate. My doctor and PA were great, but the office staff... is horrible. They never call you back when they say they will, they misinform you, they cause you too much stress wondering what's going on, they don't keep you posted. They never answer the phone. At this point I've left four messages in the last week, and I have sent three messages. Twice from their portal and one direct email. No response. My appointment is on Monday morning at 8:30am, no confirmation on my insurance and what's going on. What the heck is going on, this is ridiculous!I've given up... the stress her office staff has put me through is just not worth it. You can do so much better, please clean house, either change out your office staff, or find a way for them to be more efficient please. You have to do something. This is not how you want to run your practice. It leaves a very bad impression on your more
Ron Buckholz
Ron Buckholz
23:32 23 Mar 22
I was actually pleasantly surprised with this visit! It took me a long time to get the appointment scheduled because no... one answers your phones EVER! After a month, I finally got in, and your staff was warm, friendly, and I was totally impressed! I feel like you will take care of my needs!read more
Steve Nabavi
Steve Nabavi
16:28 16 Mar 22
It was a nice visit. Happy staff doing all they can do to comfort the patients in a very calming environment. You ask... me they are earned a big gold star on the fridge. My only complaint they didn't give me any more
Katie Lewis
Katie Lewis
16:10 10 Feb 22
Had very positive appointments with Jodie and Dr. Sheth for my migraine care. Jodie was so fast with the injections and... has so much valuable info. I started to feel light headed during checkout and the staff was SO helpful—giving me a chair, water, and taking me into a private room until I felt better. Highly recommend this practice for migraine patients, they know what they’re doing!!read more
Joshua Martinez
Joshua Martinez
16:02 10 Dec 21
I was scheduled to be checked and just want to say that the staff was fantastic. They were kind and helpful. I was... asked many questions related to what was going on and not once did I feel as though I was being brushed off. The front desk staff was especially great in assisting me. I'm scheduled to go back for a mri and am glad that I'll be going more
Isabel Ivy
Isabel Ivy
21:42 03 Nov 21
I had such a good experience with Lone Star Neurology, Brent my MRI Tech was so awesome and made sure I was very... comfortable during the appointment. He gave me ear plugs, a pillow, leg support and blanket, easiest MRI ever lol 🤣 My 72 hour EEG nurse Amanda was also so awesome. She made sure I was take care of over the 3 days and took her time with the electrodes to make sure it was comfortable for me! Paige was also a huge help in answering all my questions when it came to my test results, and letting me know her honest opinions about how I should go forth with my more
Leslie Luce
Leslie Luce
17:37 20 Oct 21
The professionalism and want to help attitude of this office was present from the moment I contacted them. The follow... up and follow through as well as their willingness to find a way to schedule my dad was above and beyond. We visited two offices in the same day with the same experience. I am appreciative of this—we spend a lot of time with doctors and this was top notch start to more
robert Parker
robert Parker
16:38 16 Apr 21
I love going to this office. The staff is friendly and helpful. The doctor is great. I am getting the best... neurological tests and treatment I have ever had. The only reason I did not give them a 5 star rating is because it is impossible to reach a live person at the office to reschedule appointments. Every time I have tried to get through to the office it says all people are busy and I am sent to a voicemail. If they could get their phone answering fixed, I would give them a strong 5 more
MaryAnn Hornbaker
MaryAnn Hornbaker
00:26 25 Feb 21
Dr. Harney is an excellent Dr. I found him friendly , personable and thorough. I evidently am an unusual case. ... Therefore he spent a Hugh amount of time educating me. He even gave me literature to further explain my condition and how to follow up. This is something you rarely get from your doctors. So I am more than please with my doctor and his more
Roger Arguello
Roger Arguello
03:05 29 Jan 21
Always courteous, professional. The staff is very friendly and always work with you to find the best appointment time.... The care team has been great. Always taking the time to listen to your concerns and to find the best more
Margaret Rowland
Margaret Rowland
01:12 27 Jan 21
I have been a patient at Lone Star Neurology for several years. Now both my adult daughters also are patients there. I... love Jodie. She is always so prompt whether it is a teleamed call are a visit in the office. She takes the time to explain everything to me and answers all my questions. I am so blessed to have Jodie as my more
Susan Miller
Susan Miller
03:01 13 Jan 21
My husband had an accident 5 years ago and Lone Star Neurology has been such a blessing to us with my husbands care.... Jodie Moore is his provider and she is amazing! Jodie is very knowledgeable, caring, and thorough. She takes her time with you, making sure your needs are met and she is happy to answer any questions you may have. Lone Star Neurology’s patients are very lucky to have Jodie providing their care. Thank you Lone Star Neurology and especially Jodie for everything you have done for us. Jodie, you are the best!read more
Windalyn C
Windalyn C
01:32 09 Jan 21
Jodie is wonderful. She is very caring and knowledgeable. I have been to over a dozen neurologists, and none were able... to help me as much as they have here. Thanks!read more
Katie Kordel
Katie Kordel
00:40 09 Jan 21
Jodi Moore, nurse practitioner, is amazing. I have suffered from frequent, debilitating headaches for almost 20 years.... She has provided the best proactive and responsive care I have ever received. My quality of life has been greatly improved by her caring approach and tenacity in finding more
Ellie Natsis
Ellie Natsis
15:41 07 Jan 21
I have had the best experience at this neurologist's office! For over a year I have been receiving iv treatments here... each month and my nurse, Bobbie is beyond wonderful!! She's so attentive, knowledgeable, caring, and detail oriented. She makes an otherwise uncomfortable experience much more pleasant and definitely puts me at ease! She also helps me with my insurance,ordering this specialty medication and dealing with the ordering process which is no easy feat.Needless to say, she goes above a beyond in every way and I'm so grateful to this office and to Bobbie for all they do for me!read more
Matt Morris
Matt Morris
15:39 07 Jan 21
Let me start by saying that I have been coming here for years. Due to my autoimmune disease, I am in this office... once every three weeks for multiple hours at a time. The office is very clean and the staff very friendly. My only complaint would be there communication via phone. They aren't the best at responding if you leave a voicemail and expect a call back. I understand that this is prob just due to the sheer number of alls they receive daily. What I can say I like the best about the office are the people. Bobby who handles my infusions is great. I never have any issues with her setting up my infusions. She is very quick to reply to messages sent via text and if she were to leave then my whole opinion of the office may change. I also enjoy people like Matt, Lauren, and Jodi. I appreciate all that they do for me and without this team I'm not sure I would be as happy as I am to visit the office as frequently as I have to. Please ensure that these folks are recognized as they are what makes my visit to this office so tolerable :).read more
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