So my very cutting edge neurologist wants to inject platelet rich plasma in my supraorbital nerve. He tells me he has a lot of success with this with all trigeminal neuropathies .
He has helped me achieve 90% remission from full body reflex sympathetic dystrophy /complex regional pain syndrome ( for the second time !!!) so I tend to trust him more than most doctors 
.
Any thoughts or experiences with this ??
Thanks so much
It would be a great help if you would say where you live....and if anyone else has had success with this procedure, please list your city and state. Or list where the doctor is that gave you treatment.
I just saw 2 neurologists in Chicago who did absolutely nothing. I am so tired of researching and bringing treatment suggestions and new therapies to these doctors only to be cut off in mid sentence. I was concise, articulate and in no way whiny. They both said come back in 3 months....for what? They did nothing!
$200 a night hotels, Amtrak trains cancelled on the way up and back 4 times; these trips are not good when you're in pain and praying and begging for relief. Sorry for venting. So tired of doctors sending you home in such a disabled state without the least bit of concern or compassion.
Waiting for the credit card bill to come. Oh boy.
Perhaps you could ask if some of those āsuccess patientsā would be willing to talk with you. I had a doctor make similar promise with a different therapy. When I contacted one of his āsuccess storiesā I got a very different response than what I heard from the docās office. Just a thoughtā¦
p.s. PSP is considered a ābiologicā - these are typically rather expensive. Just FYI
Re platelet injection therapy, Iāve only ever heard of this for athletic type injuries to muscles, etc. and I understand the jury is out on the efficacy of this. I have a friend who was ātalked intoā having this by another friend, and it did no good at all for her injured knee. I wouldnāt dare do this to a nerve, as I donāt believe nerve fibers contain blood normally. It sound too ātrendyā and, perhaps, risky as an experiment with such a tricky disease as TN. You might want to try to contact Dr. Ken Casey through the TNA Assān. to see if he can shed any light on this before you jump into this.
Iāve been on vacation. Sorry for the delayed response . I posted an update on the "stem cell prp " thread as this one was fading quickly at the time .
I had the prp in my supraorbital nerve about 5 weeks ago. The first few days were pretty painful . Now, I am experiencing about 30% relief . I will take it !
Itās still there, but not 24/7 all the time ,like before. The intensity is down a notch or three too.
After I experience real life again after 3 weeks off ,I will see how much of my pain relief has to do with vacation buzz and how much is the prp . I am thinking of doing another one in a couple weeks again .
I am in Southern California so if anyone needs some more info please message me
I want to message you, but sorry to say I don't know how and have too much pain trying to figure it out. Could you please guide me? Thanks a million.
Jay jay said:
I've been on vacation. Sorry for the delayed response . I posted an update on the "stem cell prp " thread as this one was fading quickly at the time .
I had the prp in my supraorbital nerve about 5 weeks ago. The first few days were pretty painful . Now, I am experiencing about 30% relief . I will take it !
It's still there, but not 24/7 all the time ,like before. The intensity is down a notch or three too.
After I experience real life again after 3 weeks off ,I will see how much of my pain relief has to do with vacation buzz and how much is the prp . I am thinking of doing another one in a couple weeks again .
I am in Southern California so if anyone needs some more info please message me
I AM ON NUMBER FOUR. I THINK NEUROLOGISTS HIT THE WALL WHEN YOU RUN THROUGH THEIR MEDICATION LISTS WHICH HAPPENS WITH ALL OF US. MY BEST RESULTS CAME FROM PAIN SPECIALISTS! THEY CAN DO YOUR MEDS AND HAVE ALL KINDS OF OTHER PROCEDURES TO TRY AND CONTROL YOUR PAIN.
ohjohnny1943 said:
If you have a neurologist you trust and has helped you go for it. I have had three and the best I got was nothing but a long wait time.
RD said:
It would be a great help if you would say where you live....and if anyone else has had success with this procedure, please list your city and state. Or list where the doctor is that gave you treatment.
I just saw 2 neurologists in Chicago who did absolutely nothing. I am so tired of researching and bringing treatment suggestions and new therapies to these doctors only to be cut off in mid sentence. I was concise, articulate and in no way whiny. They both said come back in 3 months....for what? They did nothing!
$200 a night hotels, Amtrak trains cancelled on the way up and back 4 times; these trips are not good when you're in pain and praying and begging for relief. Sorry for venting. So tired of doctors sending you home in such a disabled state without the least bit of concern or compassion.
Waiting for the credit card bill to come. Oh boy.
Hi RD,
Don't be sorry for venting! I think it is good to vent, especially with all you have been through. Don't hesitate to see a nurse practitioner who specializes in neurology if the opportunity presents itself. They can prescribe medicine the same as MDs but possibly more compassionately and be more open to alternative treatments.
Hello RD,
After all you've been through, you've earned the right to complain. I hope you can find a neurologist who will provide you with relief. Would you be able to travel to the Mayo Clinic? Dr. K. Singh Sanhi of Richmond is good about sending responses to patients who e-mail him. He chaired the National Facial Pain Regional Conference in Richmond, VA two years ago, and he showed great insight and willingness to ask the right questions to get a full clinical picture of the TN sufferers who were able to question him at the end of the conference.
Janet
RD said:
It would be a great help if you would say where you live....and if anyone else has had success with this procedure, please list your city and state. Or list where the doctor is that gave you treatment.
I just saw 2 neurologists in Chicago who did absolutely nothing. I am so tired of researching and bringing treatment suggestions and new therapies to these doctors only to be cut off in mid sentence. I was concise, articulate and in no way whiny. They both said come back in 3 months....for what? They did nothing!
$200 a night hotels, Amtrak trains cancelled on the way up and back 4 times; these trips are not good when you're in pain and praying and begging for relief. Sorry for venting. So tired of doctors sending you home in such a disabled state without the least bit of concern or compassion.
Waiting for the credit card bill to come. Oh boy.
RD, I really don't think it's venting because we all feel exactly how you feel and the sad truth is the only people who truly understand the magnitude of this pain and the frustration we feel are people who go through it themselves. Props to you for trying to get help and I pray that one day there's a cure for all of us!
RD said:
It would be a great help if you would say where you live....and if anyone else has had success with this procedure, please list your city and state. Or list where the doctor is that gave you treatment.
I just saw 2 neurologists in Chicago who did absolutely nothing. I am so tired of researching and bringing treatment suggestions and new therapies to these doctors only to be cut off in mid sentence. I was concise, articulate and in no way whiny. They both said come back in 3 months....for what? They did nothing!
$200 a night hotels, Amtrak trains cancelled on the way up and back 4 times; these trips are not good when you're in pain and praying and begging for relief. Sorry for venting. So tired of doctors sending you home in such a disabled state without the least bit of concern or compassion.
Waiting for the credit card bill to come. Oh boy.
Dear JustKeepSwimming
You are so right. Thanks for the kind words. I just picked up one of my cats and that was a mistake. Pain set off in my face bigtime. TN people miss out on so much in life. Have relatives in town, but I'm too sick to go out to dinner. So I will sit home and try to keep my mind off the throbbing pain. 2 MVDs and still very little relief. I pray without ceasing for relief for us all. At least this community is so supportive and that gives me comfort.
JustKeepSwimming said:
RD, I really don't think it's venting because we all feel exactly how you feel and the sad truth is the only people who truly understand the magnitude of this pain and the frustration we feel are people who go through it themselves. Props to you for trying to get help and I pray that one day there's a cure for all of us!
RD said:It would be a great help if you would say where you live....and if anyone else has had success with this procedure, please list your city and state. Or list where the doctor is that gave you treatment.
I just saw 2 neurologists in Chicago who did absolutely nothing. I am so tired of researching and bringing treatment suggestions and new therapies to these doctors only to be cut off in mid sentence. I was concise, articulate and in no way whiny. They both said come back in 3 months....for what? They did nothing!
$200 a night hotels, Amtrak trains cancelled on the way up and back 4 times; these trips are not good when you're in pain and praying and begging for relief. Sorry for venting. So tired of doctors sending you home in such a disabled state without the least bit of concern or compassion.
Waiting for the credit card bill to come. Oh boy.
Hmm yes the simplest of actions feel like a mountain of pain...I hope there's at least some medical management that might provide some relief for you because I know exactly how frustrating it gets watching life pass by while you're debilitated by pain. I myself am considering MVD as I'm failing medical management but I'm a little scared to take such a big step especially as I've heard lots of stories of it only lasting a short period of time. Sigh...just keep trying to find that magic combination of meds to keep the pain at a bearable level and never give up on yourself even though it seems like doctors already did. We all have to do whatever we could to survive :)
RD said:
Dear JustKeepSwimming
You are so right. Thanks for the kind words. I just picked up one of my cats and that was a mistake. Pain set off in my face bigtime. TN people miss out on so much in life. Have relatives in town, but I'm too sick to go out to dinner. So I will sit home and try to keep my mind off the throbbing pain. 2 MVDs and still very little relief. I pray without ceasing for relief for us all. At least this community is so supportive and that gives me comfort.
Dr. Mark Linskey has been having tremendous success with patients who present in various ways. He's done everything from serial MVD's (when he finds multiple compressions) to Gabapentin to ketamine-induced coma. The man will do whatever it takes to get you to a state of pain relief. I may be wrong, but I believe that Dr. Casey is now retired. Dr. John Tew in Cincinnati, Dr. Jeffrey Brown in Great Neck Long Island, and Dr. K. Singh Sanhi in Richmond, VA, are among today's leading lights.
The National Facial Pain Research Foundation (www.facingfacialpain.org/index/php?options.com) is quite confident that they can develop a cure for TN through their DNA research by 2020. The lead researchers are Drs. Marshal Devor, Kim Burchiel, and Ze'ev Seltzer. The lead researcher for the myelin/glial cell investigation is Dr. Nottepek. The genetics researchers are hopeful that their findings will yield results, not only for TN, but also for other forms of facial pain. The myelin research is uncovering some remarkable findings. They recently announced that myelin does not merely coat nerve fibers; it is also a constituent of cytoskeletons (the fibers that give individual cells their internal structure and shape). I would not be surprised to find that this research ends up reflected in Biology 101 textbooks throughout this country. They have also discovered that, when a person is in pain, neural tissues send signals to glial cells, which respond by reducing production of dopamine (one of the "feel-good" neurotransmitters). For years, neurologists have prescribed amitriptyline (Effexor) for TN pain. It is a dual-action anti-depressant that inhibits the re-uptake of both serotonin and dopamine. So, research into nerve coatings has revealed why it is that an anti-depressant can be an effective component of TN pain management and also suggests ways to combat both depression and anxiety. It is likely that this avenue of research will also lead to treatments for multiple sclerosis. Excuse me while I geek out. It's absolutely incredible that the research avenues proposed in the past couple of years are finding such ground-breaking, textbook-re-writing, new treatment suggestive findings in so short a time. It's enough to make a brain science junkie (guilty as charged) salivate.
Jay Jay-
I came across an article on PRP, in one of my peer-reviewed journals on pain. It is a physician journal, but I believe it is written in language that is fairly understandable by a layperson. If you are interested, please private message me, and I can email it to you.
Just Keep Swimming, if you are no longer getting adequate management of pain through your medications, then it probably is time to go for a consult with a neurosurgeon to see what option might be best for you. If you and your consulting neurosurgeon agree that MVD is the best option for you, please be assured that the statistics for successful surgeries are going up -- the surgeons have more experience, some of the imaging techniques have improved. They key is to find a surgeon who has performed 2,000+ of the operation you are considering.
Excellent advice Janet! Thanks a lot for your concern and much appreciated :)
Janet McGee said:
Just Keep Swimming, if you are no longer getting adequate management of pain through your medications, then it probably is time to go for a consult with a neurosurgeon to see what option might be best for you. If you and your consulting neurosurgeon agree that MVD is the best option for you, please be assured that the statistics for successful surgeries are going up -- the surgeons have more experience, some of the imaging techniques have improved. They key is to find a surgeon who has performed 2,000+ of the operation you are considering.
Where is Dr. Linskey located? And I hope and pray with everything I have that one day there's a cure for this dreadful disease, hopefully sooner rather than later!
Janet McGee said:
Dr. Mark Linskey has been having tremendous success with patients who present in various ways. He's done everything from serial MVD's (when he finds multiple compressions) to Gabapentin to ketamine-induced coma. The man will do whatever it takes to get you to a state of pain relief. I may be wrong, but I believe that Dr. Casey is now retired. Dr. John Tew in Cincinnati, Dr. Jeffrey Brown in Great Neck Long Island, and Dr. K. Singh Sanhi in Richmond, VA, are among today's leading lights.
The National Facial Pain Research Foundation (www.facingfacialpain.org/index/php?options.com) is quite confident that they can develop a cure for TN through their DNA research by 2020. The lead researchers are Drs. Marshal Devor, Kim Burchiel, and Ze'ev Seltzer. The lead researcher for the myelin/glial cell investigation is Dr. Nottepek. The genetics researchers are hopeful that their findings will yield results, not only for TN, but also for other forms of facial pain. The myelin research is uncovering some remarkable findings. They recently announced that myelin does not merely coat nerve fibers; it is also a constituent of cytoskeletons (the fibers that give individual cells their internal structure and shape). I would not be surprised to find that this research ends up reflected in Biology 101 textbooks throughout this country. They have also discovered that, when a person is in pain, neural tissues send signals to glial cells, which respond by reducing production of dopamine (one of the "feel-good" neurotransmitters). For years, neurologists have prescribed amitriptyline (Effexor) for TN pain. It is a dual-action anti-depressant that inhibits the re-uptake of both serotonin and dopamine. So, research into nerve coatings has revealed why it is that an anti-depressant can be an effective component of TN pain management and also suggests ways to combat both depression and anxiety. It is likely that this avenue of research will also lead to treatments for multiple sclerosis. Excuse me while I geek out. It's absolutely incredible that the research avenues proposed in the past couple of years are finding such ground-breaking, textbook-re-writing, new treatment suggestive findings in so short a time. It's enough to make a brain science junkie (guilty as charged) salivate.
Hi all,
I was on a silent retreat. I have really found these modalities helpful for pain management . I am not my pain .
While I was away I did an experiment with my diet . I have been eating a high raw vegan diet for years . I had some dairy for the first time in many years and the next day my orbital nerve was going crazy ;the most pain Iāve had in ages . Good to know! My friend just completed the 30 day elimination diet to find out what foods triggered her pain and it was most enlightening and informative for her I think we can do so so much with our food.
Low dose naltrexone has also been used a lot in chronic pain management . It seems to inhibit glial cell activity
Have any of you tried it?
I am in remission from full body reflex sympathetic dystrophy so Iāve had low dose ketamine infusions and many other modalities including Ldn . I had positive results with it
I am still positive on the prp . I am not sure now of Iāll do it again. Iām going to give it more time.
Considering my pain levels I function pretty well and I think my lifestyle modifications are a big part of pain management
Lmk what I missed .may you all be well