Live Life Team
Diagnosis
Diagnoses are largely done with respect to family history and symptoms.
Nf1
In adults it is quite clear with the lumps, freckling and coffee coloured marks on the skin. It takes time to develop in children and before the age of five it will be impossible to diagnose.
Nf2
If both the ears have acoustic neuroma Nf2 diagnosis can be done. It is also possible with one ear. It can also be done if symptoms prevail in the family. MRI or CT scan of the brain is required to diagnose Acoustic neuroma. Similar can be done for spinal or brain tumours.
Genetics specialist
You can refer to a genetic specialist in you are planning to have a baby and have a family history of neurofibromatosis. Even if the parent case is mild, it has no concern with what condition the child might develop it. It is very unpredictable.
Treatment
Mildly affected Nf1 people live a healthy & normal life. Complications should be monitored by specialist at appropriate time. Treatment can relieve you from symptoms.
Tumours
Neuromas in unusual places can bother you as they become painful and itchy if infected, normally if present on the skin surface it doesn’t cause pain. Numbness or weakness, tingling and pain are caused if they grow on nerves deeper inside the body. Tumours can be removed surgically if they cause pain, if surgery is not advised due to size & location of tumours, painkillers prescribed by doctors should be taken. People who do not prefer either of the methods relax themselves by reflexology, relaxation, physiotherapy and acupuncture.
High blood pressure
It is recommended that Nf1 people having blood presure get themselves checked regularly. Blood pressure can be under control by change in lifestyle and medication.
Learning difficulties
Children with Nf1 do have behavior and learning problems which shall improve if monitored with right help. Few conditions are very similar to dyspraxia & dyslexia.
If tumours are causing problem treatment is given to children with Nf2, or else monitoring and regular test can be sufficient check the development or complications caused by tumours.
Acoustic neuroma
Lot of factors involved in treating acoustic neuroma like how far hearing is affected, how fast is the growth and the size. Surgery is not the only option, as it is difficult and hearing doesn’t improve or lost at time.
Few other options include:
Cochlear implant: without damaging acoustic nerve, the tumour should be removed.
Auditory brain stem implant (ABI), a computer chip implant to aid hearing (this is only available in specialist centres).
X-ray treatment to shrink the tumour.
Treatment is similar to Nf1 for tumours occurring in the body.
Complications
Few people with neurofibromatosis can also develop malignant tumours, however the risk is low. You should make out if there are any unusual symptoms if didn’t have neurofibromatosis like
