Hi, I really did like Dr. Brown alot. He was very thorough, but I was very bummed and teared up some when he said that he just could not take my case right now. It made him too “nervous.” Mine is not the ordinary case of just TN, but I had the TMJ prosthesis surgery that the doc really took things too far. We think something contaminated was implanted and I ended up with a deadly pseudomonas infection. But the fact that I got through it should show him that I have the will to live and get better! But I also tested positive for hypersensitivity to some foreign body materials like many metals and he’s afraid I might be allergic the Teflon. But then I had some more testing done and it turned out that I was hypersensitive to NOTHING. SO, we think that the first test had some false positives. But the fact that he found TWO BILATERAL TN TOUCHING THE CEREBELLAR ARTERY and he’d have to do two surgieries made him nervous. I told him that I realize he’s worried about infection and a foreign body reaction. I’m worried that if I do not have surgery, I will slowly wilt away. I’ve already lost 14 lbs and that may not sound like much but I was only 114 when I had the first surgery. I’m petite anyway and normal weight for me is about 108lbs. So, now I’m down to a bout 98! I cannot eat due to pain in every tooth, tooth roots, palate, lips, chin, etc. He thinks he can help me but is worried about the possible infection. I am hoping that if some of my other docs contacted him, the ones that have done recent surgery and I did just fine, maybe he’ll change his mind. Who knows? He wants to send me to some Harvard guy named Dr. Pasqual Leone something who does non invasive brain wrk but the last person he sent there did not get relief. Ideas??? Plan B??? Anyone??? Tinkerbell (I don’t know what this jibberish is on here…)
crashgirl said:
you are going to love him!! Good luck tommorrow
Wendy
Tinkerbell said:
To all…I have a appointment with Dr. Jeffrey Brown on Thursday, November 29 as a consult. Please pray that he can figure out how to fix my problem (the cerebellar artery contacts the trigeminal nerves V2, V3 and inferior alveolar). I pray that God guides his thoughts and comes up with the perfect solution to relieve the pain…which is atypical Type 2 TN. Dr. Carson referred me to him. I appreciate your prayers for Dr Brown and me.
I'm sorry things have been so difficult and on-going for you.
When you say that he said you'd have to have 2 surgeries, does he mean 2 MVDs?
I always hated when doctors told me my case was a little "complicated" or they no longer knew what to do with me. It completely made me lose faith in the medical practice. But then again, they were being honest and telling me that they really didn't know what else to do, so I'm ok with that. (This was all before my trigeminal neuralgia diagnosis, so now it makes sense why they couldn't fix my "migraines".) But anyway, maybe it's good that he's being honest and telling you that he's a little worried about working on you. I know it means more waiting time and for that I feel sorry for you. I know you've been dealing with surgery and pain for a long time and no one wants that for anyone.
If you don't mind coming here to NJ, I really liked my neurosurgeon, Mark McLaughlin. This is his group's website: http://www.princetonbrainandspine.com/. The group does invasive and non-invasive treatments for TN. Whether you see him or another NS, I wonder if you could send them some info about you and see if they feel they can take you on as a patient so that you don't waste time? I don't know if it will work, but it's an idea.
I really hope you find some relief soon. And I hope you can find a way to control your pain and get some food in you. We need you strong and healthy for surgery! I had an issue a while back with not getting enough nutrition and I started drinking Boost (I guess it's like a lighter version of Ensure). I think it helped. Plus I didn't have to chew! I thought the flavors were good. They didn't taste so fake.
You're in my thoughts. Let me know if there is anyway I can help.
I know many on the site are pleased with Johns Hopkins & Duke & you mightily there too. They have dedicated teams & perhaps have seen similar things before. Please try to drink supplements if you can’t eat. My thoughts & prayers are with you & keep positive thoughts.
hugs from a distance!!
I didn't read this posting before my surgery and should have it would have eased my vanity fears. My scar is slightly longer but the strip of shaved hair is also narrower. I took my own shampoo and conditioner to the hospital. Once I was moved to the surgical floor the Dr. allowed me to shampoo my hair. My nurse washed it with my shampoo and then combed it out once she had thoroughly lathered it with conditioner - all the glue, blood and whatever gunk came out easily and I felt human again. It may be a little gentler on the head than acetone.
On the hair - what it looks like after MVD: I'm just over 8 months since my successful MVD and the hair that was shaved has grown about 4-5 inches already. It's really in the perfect location to be completely unnoticeable when I have my long hair down. When I pull it in a low pony for workouts etc., I just use one of those inch-wide headbands that easily tucks it in underneath or without a headband, I just pin it with one of those hair colored barrettes. Most of it goes into the lower pony though already. It's funny that I was ever even so concerned about that as now it is really no big deal at all. I would have been willing to have had my entire head shaved, honestly, to live pain and med free as I am now :).
I have an appt on the 19th with my surgeon to schedule my MVD. I'm so glad I went to this site today because you've answered so many questions for me! Most of them I hadn't even thought of! And even the vain ones :). I have really short hair and I am worried about scaring my greatnieces and nephews. My surgery will be in early September and I'll see them in October. A scarf is the perfect solution and I have a closet full of them (just ask my husband) lol.
I went on the "official" TN site and asked for help there. No one answered for 8 days and when they did it was only to tell me what a bad idea MVD was. Four more people responded with horror stories. Finally one nice lady told how it had changed her life. I was seriously reconsidering until now. My MRI showed a blood vessel touching and at one point wrapped around the trigeminal nerve. No wonder my pain has increased and the meds have stopped working. I know this surgery won't be a picnic. I have had 2 cervical fusions, my last fused 4 vertebrae, I am prepared. There really is no choice for me. But your posts have given me the information and courage to go through with the MVD, I can not thank you all enough.
TN5+ . . I hit my 2 years anniversary since my successful MVD last month. I'm overjoyed to say I'm still 100% pain free and loving life. Please read my story if you want that I recently published. You can find by clicking this link: Trigeminal Neuralgia: How I Survived The Worst Pain Ever.
Very thorough - and encouraging - article. One question: did you see any of the surgeons at Johns - Hopkins? You mentioned traveling out of state...which state? (ok, that was 2 questions).
My surgery was done by Dr. Casey (who co-authored the book "Striking Back" for TN patients and trained with Dr. Peter Janetta). He is in Michigan (Detroit suburbs). I did not see any doctors at John Hopkins. Luckily though, Dr. Casey was just a 5 hour drive away. He is an outstanding neurosurgeon and a TN expert.
I just hit my 3 year anniversary of my 2nd MVD and occasionally feel “something” and hope it is my imagination… I started feeling pain at 3+ years after my 1st however the relief after my 2nd was immediate and my dr was much more experienced… I’m still positive but as each year ticks away I am aware that the results get less positive…let’s keep the faith!
…
mybell said:
TN5+ . . I hit my 2 years anniversary since my successful MVD last month. I’m overjoyed to say I’m still 100% pain free and loving life. Please read my story if you want that I recently published. You can find by clicking this link: Trigeminal Neuralgia: How I Survived The Worst Pain Ever.
Your posts hit my in box and reminded me that I had just passed my 3 year anniversary from my MVD and as promised it is time to post an update. As a brief reminder, my surgeon discovered that I had 4 veins pinching my nerve. I was blessed because since they were veins he could cut and cauterize them and the most they can do is 4! The advantage is I don't have the Teflon pad that can become dislodged and supposedly, the veins won't grow back.
As for the update - I can't tell you how many times I feel I am living a true miracle. I'm not 100% pain free - that side of my tongue burns at times but I'm told that's a different nerve and a different surgery - it seems to be more manageable than the TN pain. I can also feel a tightening of the muscles on that side of the face especially when it is cold or windy. However, I am doing everything I love to do and don't have to worry about extreme pain just hugging or playing with my Grandkids.
Like Linda, I sometimes worry that the results will go away but I keep telling myself I'm so blessed to have this new lease on life and to enjoy every moment because none of us know what is in store for us. I'm grateful for my surgeon and the results of my surgery - I have no regrets for choosing the MVD.
I guess I will update too. My surgery was Nov 5, 2012, so I just hit my 3 year anniversary. I had compressions on my 5th, 7th and 8th cranial nerves. I couldn’t and still can’t believe how well the surgery worked! My nightmare was finally over. About 6 months after surgery I started to get twitching on my face and some of the old pains again, but NOTHING like how it hurt before. I take Trileptal, 150 mg in am and 300 mg in pm and my pain is completely under control. I am always terrified that it’s going to come back, full force, but I try to ignore that. I know I’ll eventually need a tune up but, so far, 3 yrs later, I’m doing fine when it comes to TN (and the others) pain. I hope we all stay as pain free as possible for as long as possible. Take care everyone!
My surgery was Nov 5, 2012, so I just hit my 3 year anniversary. I had compressions on my 5th, 7th and 8th cranial nerves. I couldn’t and still can’t believe how well the surgery worked! My nightmare was finally over. About 6 months after surgery I started to get twitching on my face and some of the old pains again, but NOTHING like how it hurt before. I take Trileptal, 150 mg in am and 300 mg in pm and my pain is completely under control. I am always terrified that it’s going to come back, full force, but I try to ignore that. I know I’ll eventually need a tune up but, so far, 3 yrs later, I’m doing fine when it comes to TN (and the others) pain. I hope we all stay as pain free as possible for as long as possible. Take care everyone!
