Thanks, Lee, I'll check it out right now.
**Went to the site and this is actually the doc I'm going to see: http://www.fpa-support.org/providers/provider_page.php?i=429
I was having severe, lancinating pains on the left side of my throat between my tongue and tonsil. This would be brought on by talking, laughing, coughing, drinking cold liquids, as well as just randomly for no apparent reason. I was taking so much medication that I couldn't function, but it was becoming less and less effective at controlling the pain. I'd lived with the symptoms off and on for about 6 years, with each episode lasting about 3 months and separated by about 9-12 pain-free months in the early years, but in the last year and a half, the episodes were occurring about 3 months from the time of one episode subsiding and another beginning, with the last one lasting about 5 months (with no sign of subsiding) before making the decision to see a neurosurgeon and have the surgery in order to get my life back.
Lily said:
KayJay,
What kind of specific symptoms did you have prior to surgery?
Maybe there is another help rather than just Botox for some areas of your pain. I have tried multiple seizure meds . They affected my memory so badly that twice I almost burned the house down from leaving a pot on the stove . Another time I went out to my car to shop, went back in and 3 hours later found my purse sitting on the front seat of my car facing a major road...anyone could have stolen it . So for me the seizure meds caused more problems than they helped . I was a Physician before neuropathic pain took over my life. Topical meds have helped on top of the pills I take . EMLA cream in my ear helps the ear pain and an NSAID eye drop helps the eye pain. When the eye pain is unbearable I also benefit from a compounded nasal spray using Tetracaine 2%. These are NOT the main treatment but they do add relief . And I also occ.use a 5% compounded Lidocaine type cream over pain I get in my mandible ( dental pain ) ...I found out that helped after putting a Lidoderm patch on my face one day out of desperation . This all has to be done under a doctor's supervision b/c too much of a med. like Lidocaine can be dangerous . A young woman in our community died from inappropriate use of these meds before a cosmetic procedure. There is also the issue of finding a fairly priced compounding pharmacy .. I saw a neurosurgeon who is touted to be the best in the world and after he interviewed me he dictated I had a normal physical exam without DOING a PE . No one can say that about a patient without actually putting them through the motions ( "stick your tongue out " etc ) . My neurologist has advised me to stay away from surgery as long as we can so those are the two reasons I have avoided surgery . My friendly Postal Clerk had surgery and has done well for for the past year . You have to follow your heart instincts on some matters b/c one size does NOT fit all ! FM
I'm exhausted and stress exacerbates my pain. I see the neuro on Tuesday so I anticipate more waiting around for some kind of treatment or surgery.
FM, I'm sorry for all your trials and tribulations. Surely your medical experience makes your journey even more frustrating. For most of my life, my medical background has helped with all of my past medical issues. Having ATN/GPN is the worst experience that is made more stressful with the incompetence of medical personnel. With us being more attuned to the 'going through the motions' care, I believe it is on the edge of cruelty.
Former Medica said:
Maybe there is another help rather than just Botox for some areas of your pain. I have tried multiple seizure meds . They affected my memory so badly that twice I almost burned the house down from leaving a pot on the stove . Another time I went out to my car to shop, went back in and 3 hours later found my purse sitting on the front seat of my car facing a major road...anyone could have stolen it . So for me the seizure meds caused more problems than they helped . I was a Physician before neuropathic pain took over my life. Topical meds have helped on top of the pills I take . EMLA cream in my ear helps the ear pain and an NSAID eye drop helps the eye pain. When the eye pain is unbearable I also benefit from a compounded nasal spray using Tetracaine 2%. These are NOT the main treatment but they do add relief . And I also occ.use a 5% compounded Lidocaine type cream over pain I get in my mandible ( dental pain ) ...I found out that helped after putting a Lidoderm patch on my face one day out of desperation . This all has to be done under a doctor's supervision b/c too much of a med. like Lidocaine can be dangerous . A young woman in our community died from inappropriate use of these meds before a cosmetic procedure. There is also the issue of finding a fairly priced compounding pharmacy .. I saw a neurosurgeon who is touted to be the best in the world and after he interviewed me he dictated I had a normal physical exam without DOING a PE . No one can say that about a patient without actually putting them through the motions ( "stick your tongue out " etc ) . My neurologist has advised me to stay away from surgery as long as we can so those are the two reasons I have avoided surgery . My friendly Postal Clerk had surgery and has done well for for the past year . You have to follow your heart instincts on some matters b/c one size does NOT fit all ! FM
I wish you well WotV. I know people that surgery has helped . One lady has some residual numbness but is happy with that outcome and one had repeat surgery after a year and done great since then .
Regarding your comment GOASKALICE I have been so disappointed in the direction Medicine has taken . We were taught to listen to the patient and THINK. These days I feel like I am in the fairy tale of the Emperor's Clothes .I keep telling the truth but no one can see b/c of their fears and misconceptions .Once day I went to a major Medical university and the Fellow I saw that morning actually had beer on his breath . Pure incompetence ..but as patients we have to be careful to not burn any bridges .Stand up for your self but always try to be nice . Being labelled " difficult " may be more of a problem than you already have . Right now the Medical Community is in a fix b/c on one hand they are being told to treat pain as the " 5th Vital sign "and on the other the DEA is going after docs they deem to be criminally prescribing pain meds so that the average doc often is afraid to treat severe pain . Maybe that will help someone here understand why their docs are reluctant to help . Its a rare disease and its requires pain relief . Two areas in which modern docs may not receive adequate training . There seems to be a common belief now that Neurontin fixes everything ....NOT . ' Just keep telling yourself ----"One size does not fit all . I am not crazy " . FM