Hi Scott3,
Thanks for the information. I’m so sorry for all that you are going through. I’ve changed course and am now heading into an experimental treatment/study at Stanford that has something to do with magnetic treatment (forgot the scientific words-- it’s one of those days, lol). I won’t bore you with any details until I find out whether it helps at all, but I should have some idea within a few weeks. If it’s good, I’ll certainly post about it on this site. My best to you, Scott. Soldier on, my friend.
Thanks for the reply. Please keep us informed good of if it doesn’t work for you., We should all make up our mind with any treatment.
I am looking forward hearing from you about it. I am always interested it new treatments.
I hope it works for you my friend.
Scott
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Thank you, Scott3. My neurologist said it takes 4 to 6 weeks after the treatment to know if it helped, so I’m still waiting to see. There was another very nice lady who was there during the same week I was having mine, but she was having hers done for deep depression. Apparently they have a 75% success rate for depression, so I certainly hope it helps her. They have less data on issues like ours. I’ll definitely post my results, pro or con. Thanks for the good wishes. How are you doing these days?
Hi ,
I am at what I call my new “norm”. morning are the worst. My Cranio sacral treatment helps the most. Unfortunately It is along ways to go to get to the treatments and expensive. I look forward to you success with your new plan.
My best to you!
Scott
My first thought was to write “RUN AS FAST AS YOU CAN FROM GAMMA KNIFE”
but I know it does help some.
My mom had it twice, the first worked for about eight months and then she had the second one. She ended up with Anesthesia Dolorosa. I strongly urge you to look it up, and please please go to their Facebook page. AD is a death sentence that makes TN seem like a walk in the park. (Well, not really but AD is a constant pain, burning, crawling, absolutely horrible nerve condition) Most people that get AD are advised against any other treatment. It’s taken my mom’s life away, she’s exhausted from constant pain. Cry’s a lot, can’t eat, it hurts plus nothing tastes good. Seven up feels good sometimes.
Naturally, her neurosurgeon washed his hands of her.
So please read all you can about AD!
Wishing you much luck and pain free days!!
I’ve had TN since 2005. Treated by one neurologist for 8 years until I got frustrated with him and left. I found a radiologist that treated TN less than 10 miles from my neurologist’s office with the Gamma Knife and he never mentioned it. So I went there. I saw another dr. and he asked me why I suffered with the TN for this long? The next week I had the Gamma Knife done. I not going to say the procedure was all fun, because it wasn’t. The spinal tap to map out the nerves in my face was extremely painful and I was sick for 2 days. And I was leaking spinal fluid so I had a positional
headache until they took plugged it. Then the actual Gamma Knife took about an hour half. They make a mesh mask to put over touch face. I hope you’re not closterphobic. You lay you head on a small head block that caused my facial pain to explode. You have to control your breathing. I started to hyperventilate. They almost stopped. But I pushed through. When I was done you noticed nothing different. The next morning I had no pain. I pretty much was pain free except for a few episodes for about 4 years. Med free for 4 years! But the bad pain came back. I’m back on my meds again. Then just last week I had a horrible episode the caused me to be off work for a week. The dr. Increased medications but it’s still there. It’s always there. The Gamma Knife worth it, heck ya.
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Loni, I just saw this post. I am so sorry for all your mother is going through. I know it must be hard on you as well, seeing her suffer so much. I will heed your advice. Take care.
Wow, I can’t even imagine 4 years med free! Are you considering having Gamma Knife again? Or is that a possibility? Also, have you suffered any ill effects from radiation? Thank you and I wish you all the best.
My reply is 5 years late, but yes it did for me. My NS in Birmingham, AL would not consider MVD for me at all. GK worked great for 9 years. Then TN returned so the same NS gave me the CK treatment. That was 10 yrs ago. Mostly pain free, but with a little hit occasionally that’s fully manageable. I only take 2 Lyricas a day for the numbness and neuropathy caused by the CK. I still function and go about my life thanks to the NS knowing what was best for me. I will say this, getting set up before the GK was a real pain. The “numbing shots” they gave me on my head liked to killed me it hurt so. Fitting the box on my head created tremendous pressure. I’m sure its all different now…that was 20 years ago.
Hollywood Girl, see my reply below . I had both GK and CK 10 yrs apart. Both worked for me. GK worked for 10 yrs with no meds,nothing. Then it came back so they did the CK. It worked too. I take no narcotics now. Only 2 Lyricas a day for lingering neuropathy.
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Thanks so much for getting back to me, Jimmy! What type of TN did you have? The constant kind? or the kind that shocks intermittently? Also, I’d love to know who your neurosurgeon was, since you clearly had a great one.
Sheila
Jimmy_Works, even though I live in Los Angeles, I could possibly travel to Alabama for a procedure. Would you mind sharing the name of your NS with me? Also, how long did it take you to recover from the procedure? Thank you so much for giving me hope!!!
Hi Sheila. I’m not 100% sure if mine was typical or atypical – I’ve never looked into that. I “think” though it was typical. It was on one side only, the right side; and the pain was intermittent. I don’t think I could have stood it and still be alive today if it had been constant. It usually was once per day in the beginning. Then later on it could be at any time. My feeling was (rightly or wrongly) it was, in my case, caused by one of two things: 1. very high stress because I had very heavy stress at the beginning and there was nothing I could do to alleviate the stress. My neurologist discounted that but said it could be a factor. 2. The pain began in a tooth that had had a root canal 4 or 5 years earlier. I discount this was the cause b/c it seems to me that if that was a factor it would have shown up immediately after the root canal.
The MRI of my head showed nothing. No compression by a blood vessel, nothing…according to a neurologist I saw. Years later, after I had the CK, I was on so much drugs and neuropathy pain I saw a NS in Erie, Pa. He said there was no nerve compression by a blood vessel on my right side (pain side) but there was definite compression on the left. But, I had no pain on that side. So…go figure. He was at a loss too. So, he offered no treatment for that since I had no pain there. Confused yet?
Time passed and I changed neurologists b/c I felt the first one wasn’t diligent enough. She took me off all the Tegritol (4/day). And I cut the Lyrica by 1/3. Bingo…started doing much better. This was about 18 months after the CK procedure.
My NS for both the GK in 2000 and the CK in 2010 was DR. SWAID SWAID in Birmingham. Neurological surgery, (205) 949 - 1800,
Yes, that’s his name. Both names are the same. He is a very caring doctor and has great empathy for TN patients.
Back in 2010 I asked him about MVD before he did the CK. He said No. He would not do that even though I, myself, was leaning toward that b/c of what I’d read. He said No. Sometimes they went in there and found a vessel compressing the T nerve and other times they went in and found Nothing! MVD is an invasive procedure, GK and CK is not. A lady in my church had MVD by another NS and she did great…she’s been pain free for 6 yrs or so. All I can say is I put a lot of faith in that NS b/c he was insistent that MVD was not for me. Other NS say differently. If you read people’s accounts enough you’ll see that nothing is 100%. Some work sometimes and don’t other times whether its GK, CK, or MVD. There is nothing (that I know of) that says this or that procedure works all the time. I was so desperate I just had to trust. Glad I did. I recommend Dr. Swaid. If I have to again I will go with Dr. Swaid.
Oh…one other thing. You asked how long to recover from the procedure. I assume you are referring to GK. Answer is 0. Procedure was 55 minutes. Then went home. No recovery at all. Its outpatient. I was on Tegritol at the time, so I kept taking that. If the GK worked it would be noticeable in 8-12 months. So I continued the med till 8th month and gradually scaled down over 4 months. At the end of 12th month I took no med at all. Done. Over with. As I said before, getting set up for the GK is not a fun thing. But…that’s temporary, just a few minutes. It was all clear sailing after that. You probably already know the GK is gamma radiation beams focused on the T nerve. It “hopefully” blocks the pain sensor part of the nerve from transmitting pain to the brain. For me it did. For 9 years. As I said earlier, it did (in my case) come back 9 years later.
Now, for the CK. Recovery time 0. Get about 45 minutes of treatment. Get up and go home. They told me ahead of time I would have significant facial numbness. I didn’t care as long as the 10+ pain was gone. I continued meds (Tegritol and Elavil). I was having such significant waves of sensations and numbness my neurologist upped the doses over time. I lost confidence in him and went to another neuro and told her my whole story. She culled out all other things and listened intently. At the end she told me she wanted to try getting me off some of these drugs. I was terrified at the thought. But I figured I’ve lived through this so far so I’ll try. I was on 4 Tegritols/day, 1 or 2 Elavil/day, 3 Lyricas/day. I stopped the Elavil immediately. No increase in pain or discomfort. Over a period of about 2 months I gradually scaled down the Tegritol by 1 pill/day. I found that as I reduced the meds I was doing about the same as I was on the heavy dosage. That seemed to indicate the CK was working. After the last Tegritol I was doing as good , in fact better, than before. I still had numbness. But NO pain. I thought ….big deal. People complain about the numbness but what do they want ? Numbness or pain? Numbness in the right side of the face and lips…or pain in both. No brainer. My feeling is the NS profession is doing the best they can with the the terrible scourge of TN. Treatment today is infinitely better than just 30 years ago. You learn to deal with the numbness and tingling (like novacaine wearing off after a dental procedure). The brain adjusts and you go on. That’s far better than lightning strikes in my face. All that I just described was about 8 years ago. Numbness (from the CK) today has gradually reduced to about 10-20% of what it was. I take 2 Lyricas / day now. That’s all. AND…whereas it was super expensive , it is now in generic and works great. Very inexpensive now.
Well, I’ve given you my history. And my NS is Dr. Swaid. If you do decide to see him I think you won’t be disappointed. And if you do, let me know. Your insurance will probably cover it nicely. I don’t know what you have for insurance. The first time I saw Dr. Swaid I asked him about how much this would cost because I was concerned about what would be left for me to pay. I could see the empathy in his face. I will never forget what he said. Shaking his head he said “Don’t worry about that, I will treat you even if you have no insurance”. He understood the total consumption of a TN patient. I felt I could cry right there ! Somebody understood. The first GK treatment was about $46k. I think I paid around $250. Insurance (BCBS of Alabama) covered the rest. The CK treatment in 2010 was around $26k. Costs had come down. Again, I paid about the same, insurance covered the rest.
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Sheila, I just reread your post and see you are in LA. That makes me think of Kaiser since you are in California…I don’t know. You would want to check to see if your insurance coverage applies anywhere. I use to work in insurance. If your plan is a HMO it may apply only in CA. Checking with your insurance is the first step – see where it applies. 2nd step (if you decide to see Swaid) is call his office about your insurance. I would tell them you have TN. Remember…no recovery time. You get up and go home. That’s it.
I have wondered too about the root canal angle. I too had a root canal. When TN showed up it started in that tooth. But it was 4 or 5 years later. So, I don’t know.
Hi Jimmy_Works, thanks so much for giving such complete and helpful answers. My TN is the constant kind and it is maddening, but the severity of pain is lower than the type you have, otherwise it truly would be impossible to go on.
I’m very fortunate in the insurance area, in that I have Writers Guild insurance, which is quite good, plus my mother-in-law has been an angel and has covered all additional medical costs in an effort to get me well. She is well off financially and insists, which is amazing! I wish every person could be so lucky in that regard. I’ll do some more research and circle back. Again, thank you!!!
Dr. Swaid Swaid sounds like a dream. I already have numbness on most of the left side of my face as the result of a botch radiofrequency ablation at UCLA. Dr. Nader Pouratian got the wrong branch and even numbed my left eyeball. Strangely enough, it did not decrease the pain and somehow managed to even make it worse. So I’m not worried about numbness, but just concerned that the next doctor will have to consider the damage done by Dr. Pouratian.
By the way, I did want to ask whether you have any side effects from radiation? My neurologists does not recommend gamma knife because she says she finds herself treating patients who had it 5 or 10 years ago and they can lose hearing, vision, stability, etc. To be honest, I’ve reached the point where I’m willing to risk it. Have you had any ill effects? Thanks again. Speaking with someone like you is a lifeline.
By the way, mine started in a root canal tooth as well. There were other factors-- an upper jaw surgery that caused nerve damage. I’ve also had Lyme disease which took a couple of years to diagnose, and there are lots of us with TN who’ve had Lyme, so that could have been a factor. I’m pretty sure my medical history would drive most doctors insane because there are so many possibilities, including mold exposure due to a stubborn leak in our dining room (apparently mold is a strong neurotoxin). Anyway, I thank you for all your information. I am seeing an ENT in February to make sure this constant burning/aching sensation isn’t something in my left sinus (it never is), then I will follow up with likely Dr. Swaid Swaid and/or the Mayo Clinic. I can’t imagine how wonderful it would be to stop hurting, even for an hour. I wish you continued relief and a wonderful life to go with it!
Molly I agree on the shots. They were awful, but temporary compared to TN. And the pressure from the screws was tremendous till it evened out. My 2nd treat was CK instead of GK. Thats what the NS chose. 10 yrs ago
Hollywood, I know this is a big decision what to do. I will be praying for you about this. May God bless you and find relief for you regardless which way you decide to go – the Mayo Clinic or Dr. Swaid or both. Whoever you see I would recommend typing it all down and print it out, proof read it, and alter if necessary to keep it as concise as possible covering the main points. If you desire to, give them the printout. Also, when you visit them have the whole history in mind from start up to the present time. I did this, making it as brief as I could but still covering all the drs I had seen, etc. I just told him the facts without going on and on about a pain he already knows. My summation to Dr Swaid probably took 5 to 10 minutes in order for him to get the picture.
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