Suffering from this disease , mentally and emotionally broken 💔

My brother passed away yesterday 4.4.2023 at age of 34 fghting with NF2 all his life.

My husband is 34 with nf2 and he has no insurance in the state has pretty much just left him to die

It's so painful.

I am also suffer from acoustic neuroma nf2 ,with facial paralysis, a a less hearing loss and balance problem, since last 2 years , go threw gamma knife, but now micro surgery,is there complete recovery these problems after micro surgery or not please reply sir,

@performingartsphotography8783

6 ай бұрын

General info: Stereotactic Radiosurgery of various kinds has been reasonably successful on vestibular schwannomas aka acoustic neuromas since the late 90's though this method is often not successful in killing the blood supply to these tumors over 3.5 cm due to their proximity to the brain stem. Often, after medium success from this treatment, surgery is needed in an attempt to "de-core" the tumor. If there are bilateral tumors larger than let's say 3cm, then the added risk of pressure on the brainstem is present. Recently Harvard Medicine is looking into using Mifepristone, a drug currently FDA-approved for chemical abortion to kill the tumor cells. Damage to the trigeminal nerve is fairly common with invasive surgery protocols and this risk should be seriously considered when trying to mitigate the growth of NF2 tumors near the brain stem. Often, due to edema of the brain tissue following surgery, the suboccipital area of the skull is not replaced to reduce complications. It sounds to me like you have been through the stereotactic route based on your present problems so I would certainly look into the Mifepristone. Here is a link for more information on that. They may have a blind study going on at present. If your insurance balks at covering this by calling it "experimental" , please ask your surgeon to help you write a letter to the insurance company to challenge their finding. Insurance companies routinely reject new treatments as a matter of routine to save money so don't let them get away with this. Good luck.

Is it possible vestibular shwanoma shrinking without any treatment.?

@performingartsphotography8783

6 ай бұрын

Not as of the year 2000, Though some pundits of Chinese medicine say that certain prescriptions such as those containing scorpions can arrest the growth. This was not the case with my wife. That said, attempts to "de-core" the tumor have some success in killing the vessels that provide its blood supply with tools that create extreme vibrations. Schwannomas are dense and often send ganglia into the surrounding tissue, unlike an encapsulated tumor. Stereotactic Radiosurgery of various kinds can often produce the best result if the tumor is under 3.5 cm.

Stereotactic Radiosurgery of various kinds has been reasonably successful on vestibular schwannomas aka acoustic neuromas since the late 90's though this method is often not successful in killing the blood supply to these tumors over 3.5 cm due to their proximity to the brain stem. Often, after medium success from this treatment, surgery is needed in an attempt to "de-core" the tumor. If there are bilateral tumors larger than let's say 3cm, then the added risk of pressure on the brainstem is present. Recently Harvard Medicine is looking into using Mifepristone, a drug currently FDA-approved for chemical abortion to kill the tumor cells. Damage to the trigeminal nerve is fairly common with invasive surgery protocols and this risk should be seriously considered when trying to mitigate the growth NF2 tumors near the brain stem. Often, due to edema of the brain tissue following surgery, the suboccipital area of the skull is not replaced to reduce complications..

so today I found out that I have nf2

What hurts me people doesn't understand me.

@htube9417

Жыл бұрын

I understand because I am also suffer from the last 2 years

@christybrown3716

Жыл бұрын

@@htube9417 40 years for me.

@robertmckelvey3091

Жыл бұрын

My 13 year old son is going through nf2 now he is in radiation treatment no the Dr don't think it will work but they want to try anyway. They cut his head open a year ago now it is growing out of control he is trying to stay strong I don't know what me and his mother is going to do I am disabled and she got laid off the week we found out he was to start radiation I am trying to sell everything I have to get us a car even started a GoFundMe nothing is selling know one is donating

@htube9417

Жыл бұрын

@@robertmckelvey3091 after radiation,what symptoms are available in patient , Norma or critical

@htube9417

Жыл бұрын

@@christybrown3716 life is threating with nf2 ,😔😔