Venting out my ear ;)

1

Good Morning all.

Got a call that I wasn't expecting this a.m. After seeing a Gamma Knife specialist 2 weeks ago and hearing from him that "he" has never done GK for Geniculate Neuralgia. He would confer with his colleagues but would suggest going back to the Pain clinic for either meds or some kind of electrical procedure? I have made these appointments but a bit of research has me wondering if I want to undergo such a procedure with multiple procedures linked to it? Sounds like a long route to relief.

Anyway...they called from Mid Michigan to tell me that Dr. Copeland did in fact confer with his colleagues and a Radiation Oncologist would like to meet with me and if the appointment goes well they would proceed with Gamma Knife the following day.

Now, I and my husband had pretty much nixed the idea of GK because of the possible side affects. Now, I am getting back to that hopeful stage again.

In the last 2 weeks I have been in more pain than I have been in the last 2 years. This is because I have had to go off all NSAIDS. I've developed a disease called Lymphocystic Colitis and in the process of trying to find relief and a new handful of medications prescribed I took it upon myself to try not taking the handfuls of ibuprophen I usually take with my Norco to handle the GN pain I am in constantly.

Ridding myself of the Ibu calmed down the colitis big time and now I am not willing to take any more of it because I have been miserable with the colitis for 3 months now. You can imagine!

The Ibuprophen really helped with the break-through pain. Now I have constant pain, all day, at about a nagging 3-4 then within 3 hours of the Norco it breaks through to a 7-8 that I have to deal with while it climbs to 10 and beyond before the 6 hour mark when I can take more Norco. My Neurologist has prescribed 2400 mg of Neurotin along with up to 12 10-325 Norco a day and I have to be really careful not to go over this amount...I do though...often. I also take xanax and flexeril to try to calm down the beat down inside my head. I am also on Tegretol 600mg. My GP suggested Methadone to be added to try to get me some sleep. NOthing seems to work so far except the Norco in massive amounts and my heating pad.

I am a 57 year old Grandmother that lives in a household of 10. I take care of my G-Babes while my daughter, her husband, and my husband work 5,6,and 7 days respectively. Two of my 3 sons live with us also...one (25) to help and he does so, amazingly. The other son, we all take care of since he was the victim of a hit and run accident last Oct. suffering massive leg injuries and a TBI and has a long road ahead of him. There is soo much stress in the house and I feel like my troubles are the least of what all is going on. The accident my son had is really placing a financial burden on the family until the lawyers can get him some money. The driver of the car had no insurance and his license was revoked...he is now in prison. Stress is high, I have no place to go to get away from the stress. I don't go anywhere anyway, save medical appointments. Meds have me walking around like a drunk person, rather embarrassing. I don't know how long this procedure will have me down if I choose to have it. I do my best to carry my weight around here and I hope I can take care of myself with this and not have to have too much care from family involved. Luckily, my husband is on standby for a while and my son Colin will be back from Hawaii in time for this procedure so he can take care of the kids in my stead but I'm still worried sick about leaving family in the lurch to have my problems taken care of. Feel kind of selfish.

Now while writing this I get a call from Mid Michigan and they want to see me tomorrow with the procedure possibly the following day! I guess I'll post this and get to a new set of arrangements huh? I'm sorry to do things this way. I'd appreciate any input on Gamma Knife for Genicular Neuralgia. I do have a heartbeat of sorts mixed up with the ice pick pain and I believe this to be the offending blood vessel. This is why I'm even considering this procedure. I'm okay with hearing loss, not so much on facial paralysis but the face is't involved at all right now so I'm praying that is a big plus on the pros side. Love ya'll for taking the time. Be back in a few hours! <3 Laurel

2

Laurel, I am so very sorry for your pain and all that goes with it. You are a very busy grandma and that makes it all that more difficult. I wish for you some calmer days.

I do need to put in my two cents when it comes to Gamma Knife. That is because I live with 24/7 of horrific pain that was caused from Gamma Knife. This was not necessary. I could have had the MVD surgery instead and it would have not damaged my nerve. I did have MVD after the gamma. It got rid of my TN; but not the worse pain. Anathesia Dolorosa is caused from the nerve being damaged from the Gamma Knife. I have painful numbness, burning pain, shocks, and painful teeth all day long. It never goes away. No meds help it at all. I am on very strong meds and they only help a tiny bit.

I hope you have talked to the docs about this. It is very common. Especially since they have not done one for GN scares me too. But I do realize that you are ready to do anything because of the pain. I was the same way. The sooner the better. Within a month the pain started. Sorry to give you bad news. Maybe one of the members can give you better news as we are all so different. Take care and good luck. I will pray for you.

Cheryl

3

Please send a note to RED LAWHERN for his opinion. All the best!

4

Hi Laurel, I kinda agree with Cheryl. I had Gamma Knife. I had severe pain in my eye tooth and would have done jussst about anything to get rid of it at the time. In speaking with the oncologist after the procedure was done, she told me that most people complain about gettin a numb tongue... which I did develop from the procedure.. I also developed loss of taste on that side as well. I had tenderness and numbness on my ear too. The outer portion, made sleeping on the right side very difficult. I really regret doing it because of the numb tongue and taste loss... :( I did get 3 years of relief from the intense pain(but still had dull aching) but when the pain came back, I went into more depression, and had to switch my meds, because of it. Hope I'm not scaring you. I just wanted to be honest and give you my story..

I wish you the best and hope everything works out for you.

Min

5

Min is right. The burning pain is not only my entire right side of my face; but inside my nose, inside my mouth. My entire tongue and pallet and cheek inside my mouth burns all the time. My teeth feel like a vice is on them and keeps tightening as the day goes on. The only relief I get is to sleep. I sleep 16 hours a day just to get rid of the pain. This is not living at all. The depression like Min said is very real. You can't help but be depressed when the docs tell you that you will have it forever and it only gets worse. Sorry for the bad news. Hang in there.

Cheryl

6

Hi Laurel and Min and Cheryl

Wow, my heart is so sad and heavy for each of you. I have not had this experience so I cannot comment, but I want you to know that I am praying for each of you for some sort of relief! I do not know how you do it Laurel with such a full household and many burdens. Gentle hugs to you. I agree with Jackie to do a check-in with Red Lawhern - he seems to me the master of finding the most recent and accurate information. All the best to each of you. ~ Valarie

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Thank you, all of you for taking the time. As things go, the Clinic called again and are conferencing on me Wednesday and will call me that evening to tell me what they have come up with. Maybe a conference and procedure next week. They are not rushing and really checking into my particular symptoms, history etc so that makes me feel better and there are many many specialists at Midlands facility...that's all they do is neuro stuff...it's 2 hours away instead of 2 days.

I am so sorry for your pain, depression, that the procedures were minimally effective or not at all. My heart breaks for all of us. For a moment after reading your replies I feel like just staying on meds, in bed with my heating pad. I walk around with my finger stuck in my ear all the time...real attractive but I don't care about that much because the whole family validates me and my pain and have for a long time with other ailments that keep me from giving 100%. (severe scoliosis, Fibro, RLS, Chronic Migraines) All I have ever wanted from my body is to be able to still do the things that I love to do. Geniculate Neuralgia is robbing me of my chances of that. I HAVE to do something and I am so fearful of invasive surgery. Again, I so appreciate your replies and will confer with Red on this subjects as well, now that I have some time to gather info of my own. Right now, family agrees that Gamma Knife is something to explore anyway and I do let them read your replies so no one is in the dark...I'm just praying that GN is different enough from TN (different nerve and area) that I might have a fighting chance of some relief and 3 years with just "dull aching"..well.....I'd take that, I'm tough! Love to all...off to find Red :) <3

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I hope sooo too. You never know it just may work really well. One thing to note that same pain I have that came back is now controlled with Effexor. I also have GN and IT is controlled by Trileptal, mind you I am on the strongest dose and do have a little breakthru pain at times. But I do pretty well.. Good Luck!! Let me know how you doo..Min

9

I will, thank you.

Min said:

I hope sooo too. You never know it just may work really well. One thing to note that same pain I have that came back is now controlled with Effexor. I also have GN and IT is controlled by Trileptal, mind you I am on the strongest dose and do have a little breakthru pain at times. But I do pretty well.. Good Luck!! Let me know how you doo..Min

10

Am set up for a consult on the 19th, then if all are in agreement they will do the procedure on the 20th. They do a thin slice MRI to "try" to see all the bad guys but I have to be realistic about this whole thing. The Radiation Oncologist is well versed in the geniculate neuralgia so I am happy about that. Didn't want to be a guinea pig just to get pain relief, but I really do want pain relief, Yesterday!

In the mean time my Neuro gave me enough pain meds to get me through all of this, successful or not or just kinda.

Prescribed a NSAID pain patch so that I'm not taking so many opioids but my insurance company doesn't have it on their list so my pharmacist (love her too!) is working with my Neuro to get the patches approved because they are highly expensive. I'm hoping that goes through today because I have company coming up from Kentucky this weekend and I don't want to be lying on the heating pad all weekend. I have to put in a call to my Mom as well and try to explain all this to her. She just had her leg amputated a week and a half ago and is already in Rehab, she's amazing! Anyway, I was supposed to go back down and spend some time with her the weekend following my procedure and I just don' know if I will be up for all that or not. I will try to explain it all to her but she is 85 and just had a stroke prior to her amputation.

My main thing right now, and I can't find anyone who can tell me, is what to expect for recovery. The Gamma Knife is outpatient but they told me I could need another nights stay following the procedure. I don't know why, pain probably. I know I could be in the GK machine for up to 5 hours! What is the 2 1/2 hour ride back home gonna be like? Should my daughter take FMLA? She thinks so, just in case. I just don't know. I think I could walk out of there with no pain and be ready to get concert tickets for Bob Seger! LOL!! Well....why not, it could happen :) I am supposed to go downstate 3 days after the GK. Am I gonna be up for that? I hope so, I really need to see her again and my son who was hurt badly in a hit and run last OCT. is going down with me to see her and to show her what rehab and therapy can do because he, as well, is amazing and is walking now with the help of 3 braces. It would do her so much good to see him for he almost lost one leg to this injury. Anyway, I'm in the dark about these things. Won't get too many answers until I meet with the surgeons I suppose and then at that point it's off to surgery. We'll make it all work I suppose. We're a strong group!

But if anyone has any experience I would so appreciate a reply. Thanks so much you all. PeacenLove Always~Laurel

11

They took me off Effexor because of a rare colitis that I have. It's been hard to control this and that because of drug interactions. I've been fainting, been feeling sick generally from all the meds. My question to you is, have you have any procedures or are you controlling the pain purely by meds and if so, is that pain control good enough for the rest of your pain term or are you considering something else in the future? I, personally, can't take it anymore and can't keep up with what I need to do as a functioning part of this household. The pain is taking me down a bit more each day and with other ailments, it's just too much. I'm afraid to live like this for too much longer...it's affecting the whole family and the little ones don't need to be exposed to this kind of thing. Grandma gets ornry too often. Grandmas are supposed to be different from that. I hate it! Seems like we're all baring our teeth lately...and it's not the wee ones fault. It just sucks! :(

shinglesdidit said:

I will, thank you.

Min said:

I hope sooo too. You never know it just may work really well. One thing to note that same pain I have that came back is now controlled with Effexor. I also have GN and IT is controlled by Trileptal, mind you I am on the strongest dose and do have a little breakthru pain at times. But I do pretty well.. Good Luck!! Let me know how you doo..Min

12

Cheryl, could you tell me what to expect on, during and after the Gamma Knife procedure? I am trying to make plans for that day and the trip to and from. If it goes good, what do they tell you to expect that day and the days after.. I'd appreciate any info and I do appreciate hearing both the good and bad about this gamma knife. I am sorry it didn't work for you very well and I hope you are getting better relief now with meds. Thank you! Always~Laurel



Cheryl said:

Laurel, I am so very sorry for your pain and all that goes with it. You are a very busy grandma and that makes it all that more difficult. I wish for you some calmer days.

I do need to put in my two cents when it comes to Gamma Knife. That is because I live with 24/7 of horrific pain that was caused from Gamma Knife. This was not necessary. I could have had the MVD surgery instead and it would have not damaged my nerve. I did have MVD after the gamma. It got rid of my TN; but not the worse pain. Anathesia Dolorosa is caused from the nerve being damaged from the Gamma Knife. I have painful numbness, burning pain, shocks, and painful teeth all day long. It never goes away. No meds help it at all. I am on very strong meds and they only help a tiny bit.

I hope you have talked to the docs about this. It is very common. Especially since they have not done one for GN scares me too. But I do realize that you are ready to do anything because of the pain. I was the same way. The sooner the better. Within a month the pain started. Sorry to give you bad news. Maybe one of the members can give you better news as we are all so different. Take care and good luck. I will pray for you.

Cheryl

13

Laurel, I do get good pain relief and lead a reasonably normal life. I get down once in awhile, mostly because my face is numb on the right side. That was there before the Gamma knife tho. the gamma just added the tongue and taste loss. The only thing that happened to me is, I was sitting at my desk and all of a sudden I went to turn my head and it was like I was going in slow motion and I got vertigo really bad. It only lasted a few moments,,( felt like I was going to fall off of my chair in fact..) but boy it was freaky and I've never experienced anything like it. I know it was from the surgery. Just don't know why. Never asked and it never happened again. I have one scar pretty visible on my forehead from the screws. The one on the right side is there but hard to see. The Gamma tube is pretty tight soo if you are clostrophobic,, be prepared. Keep your eyes shut. I did ok and I am. I wanted out of the pain. So I don't think that will be a problem for you!! I didn't have any other problems. Other than the numbness I told you about.

I don't plan on have any more procedures or surgeries. I live day by day and pray the meds continue to work well for me...

Min

14

Can you tell me where you had the GK surgery? My surgeons are trying to make contact with others who have done this for genicular neuralgia. I would be most appreciative!

Min said:

Laurel, I do get good pain relief and lead a reasonably normal life. I get down once in awhile, mostly because my face is numb on the right side. That was there before the Gamma knife tho. the gamma just added the tongue and taste loss. The only thing that happened to me is, I was sitting at my desk and all of a sudden I went to turn my head and it was like I was going in slow motion and I got vertigo really bad. It only lasted a few moments,,( felt like I was going to fall off of my chair in fact..) but boy it was freaky and I've never experienced anything like it. I know it was from the surgery. Just don't know why. Never asked and it never happened again. I have one scar pretty visible on my forehead from the screws. The one on the right side is there but hard to see. The Gamma tube is pretty tight soo if you are clostrophobic,, be prepared. Keep your eyes shut. I did ok and I am. I wanted out of the pain. So I don't think that will be a problem for you!! I didn't have any other problems. Other than the numbness I told you about.

I don't plan on have any more procedures or surgeries. I live day by day and pray the meds continue to work well for me...

Min

15

Shinglesdidit, I didn't have the GKRS for GN. I developed GN last year. I had the surgery on 2-29-08 for the type 2 pain I was having ...very bad intense burning and aching pain. I had the surgery in St. Louis, Mo. at Barnes Jewish Hospital. I take the Trileptal now for the Geniculate neuralgia..In January of 2012 I had a shot on the left side of my mouth to numb me at the dentist for work on the opposite side of my TN. This caused electrical shocks and then jaw pain and then eventually the Ear pain and so I am now Bilateral type 1 and 2...

Min

16

I have read about the facial paralysis happening but it eventually goes away, the hearing loss, I don't know. I have read MVD is the successful, I would not get GK, try another specialist, I am seeing an ENT neurosurgeon, neurotologist. Still need a new scan, one MRI only shows something for one side, I have this on both sides.

Does your pain take on a constant boring intense pain after a stabbing onset? I too take some narcotics, they do help but not for very long, but even a few hours is worth it to me. I take some percocet and time-released morphine. I don't think the morphine really helps, I wanted to just have the doc up my percocet as I believe you need to just hit it with a full dose but they would not do that. Methadone is strong, I was on alternating doses of methadone and dilaudid going through 10 plus failed back surgeries but oh my, I did not have my wits about me.

Incidentally, I am also 57, widowed though, but very involved with helping my daughter with my grandchildren. I think it is admirable of you to be what appears to be the primary caregiver of not only your grown younger children but all those grandchildren. Stay busy, yes the stress can get to you but it will make you tired and perhaps fulfilled at the end of the day and hopefully a night of better sleep awaits you. Sharon