Multiple Cranial Neuropathy

[Tres139]

I have a daughter that is 17 and was diagonsed with Trigeminal Neuralgia and Multiple Cranial Neuropathy. She has the trigeminal neuralgia on the left side of her face. She is in so much pain it is unreal. We have been to see a Neurosurgeon in our state however he says that since there is more than one nerve effected that she is not a canidate for surgery and her meds do not even help. Within the last yr her hearing is going downhill real fast. She is now in hearing aides with amplifiers and her voice is begin effected now too. We have had several MRI's and MRA's and ct scans done all coming back normal. Several blood tests too, negative on Lyme disease, and some genetic testing too once again all normal except the ANA titer was slightly elevated. She has had a spinal tap too.
Her meds are Neurotin 1200 tid, Elavil 100 hs, Trileptal 600 bid, and others for diabetes and asthma and depression. For break thru pain she gets Darvocet and Flexeril .
Is there any place that deals especially with Multiple Cranial Neruopathy ? Trigeminal Neuralgia is so painful but if that can not be fixed cause of the other things then what are we to do ? She is loosing her hearing now ?? Can anyone help me ?

[Storm007]

Hello Tres139, I am Storm007, I am 48 yrs of age. I was so shocked to hear that your daughter has so much painful conditions at such a young age. Trigeminal Neuralgia is "THE Most Painful Condition known to man" I also have it and also Occipital Neuralgia.Both of these are of the just 2 of the 12 Cranial Nerves we have.
I do not know what state you live in..but I can tell you this. There are steps that CAN be taken to help with the Tri-Gem pain.
I am in Tucson AZ. I am seeing a Pain specialist thru the University of Arizona.
This past Thursday I had purformed on me  a C2 Occipital Nerve block,in order to bring my pain level down and then in a couple more weeks, I will have Trigeminal Nerve blocks procedure.
They so far seemed to have gotten control of the Right side however the left side He was unable to get to due to a huge blood vessel in the way. But 1 is better than none. I have had this condition since i was in my early 20's.I was in Emergency Medicine on my way to becoming a DDR myself.The pain kept me from my goal and finally I had to get on disability.But I also have Rheumatoid Arthritis(which is an auto-immune disease,I also have osteo arthritis in my neck and Fibromyalgia and last but not least myofascial chronic pain syndrome.
  Now back to your daughter.Pain blocks have proven successful on a great many people.Do not dispare. If you live in a state that has a University that is known for its medical programs,GO THERE!!!!!!. There are Drs out there that do know what can help.Also..Opiates..though not spoken of in certain circles are a good thing..I could not have made it this far in my life without them.They do not turn you into a "Junkie".
When your daughter can get into a GOOD Pain Management center,They can give meds that will help conciderably.Yes the body gets used to them but taken as directed..does wonders.There is no reasonI can think of that your daughter has to suffer in so mch pain.I was on 3800mg of Neurontin at one point,along with other meds.I went through the whole camet.When it came down to it,the only thing that really helped was the opiates,Now that I have a Dr who has the knowledge and skills to perhaps get me out of the horrific nightmare of the cranial nerve damage, I am so excited.
  I have no doubt you wouldn't do anything to make your daughter more comfortable,and live a better quality of life.Seek out these Drs,seek out Drs who are at Great Pain Management places.They are usually anethesologists.They know meds better than anyone.
  Go to others if you are not hapy with the way things are going.I went through a great many Drs before i found this gem.I was born and raised and worked in Michigan.I was in the medical field working with Drs of all types in the Trauma Units and they had no idea what was wrong with me.I suffered for 10 years before I went to the U of M.That is when Dr Upton dx me with the Trigeminal Neuralgia and got me into a pain clinic.
Do not give up hope.Tell your daughter not to give up hope.There is help out there.You must remember this..There are Drs who graduated at the top of their class and there are the Drs who ust barely passed......Please.write me ,I would like to know what state you live in....Storm.     Storm007