If you are in doubt or trying to make a decision about Gamma Knife, do it! I feel like a new person and it has only been 16 days. I was in a slight period of remission from the pain when I had the surgery but the side effects from the drugs were more than I could handle. The procedure was more than I has expected. It hurt but in comparison with the pain of TN it was nothing. The anxiety was the worst probably. Now the night after the procedure, I constantly asked what have I done. The wound sites from the halo hurt and continued to bleed. I could not lay down at all. The lidocaine was draining and my face was swelling. The icing on the cake was that I was shocking even more than before the surgery. Each day I began to feel a little better. The pain of TN had stopped in about four days. The soreness, headache and shakiness got better each day. I have been able to eat anything that I want to eat. I can brush my teeth, wash my face and put on makeup without crying. I can talk and laugh with my family and friends. I have even been able to exercise. I feel like I have my life back. I am down to one Baclofen a day and still full dosage of Lamictal but plan to cut out the Baclofen tomorrow and then start weaning off the other. I know I may still have an occasional pain and require meds from time to time but I can LIVE again! I am so thankful for a caring neurologist and a skillful surgeon. If you have not already, ask if you are a candidate for GK. It was well worth it for me, I’d do it again in a heartbeat!
Sharon,
I am truly happy for you! Trusting that you will continue with your recovery and keep us posted. Thanks for sharing happy moments, bob
Sharon,
I am so glad your pain is better. I am praying that you will continue to improve.
Liz
Hi Sharon, I was just out here looking at members in NC and also ones that have had GK. I had GK in Dec. 08, also by Dr. S. Tatter. I’m lucky to live in W-S where I didn’t have to travel to have the procedure done. My neurologist is Dr. Richard Bey. I’ve had TN for about 8 yrs. Like most others, I first thought it was dental, then sinus, and even had sinus surgery, but the pain came back less than 1 yr, so I was referred to Dr. Bey, who dx. me within minutes. I did different drugs for yrs. but eventually drugs no longer kept the pain away. I was referred to Dr. Tatter, who wanted to do MVD, but I opted for GK. Now, post yr and a half I have sensory loss and constant tingling, but it’s worth it to be pain and drug free. I do follow up with Dr. Bey every 3-6 mos.
Hi Jennifer! I am glad you found me. For the past few days I have had a feeling like spiderwebs on my face that has progressed to a tingling sensation. I planned to call Dr tomorrow to ask if this is normal and permanent. I am still on Lamictal and just got off Baclofen. I have been wondering if I am getting off meds too quickly. It helps to hear the experiences of others. Do you notice any less tingling when on meds?
Jennifer said:
Hi Sharon, I was just out here looking at members in NC and also ones that have had GK. I had GK in Dec. 08, also by Dr. S. Tatter. I’m lucky to live in W-S where I didn’t have to travel to have the procedure done. My neurologist is Dr. Richard Bey. I’ve had TN for about 8 yrs. Like most others, I first thought it was dental, then sinus, and even had sinus surgery, but the pain came back less than 1 yr, so I was referred to Dr. Bey, who dx. me within minutes. I did different drugs for yrs. but eventually drugs no longer kept the pain away. I was referred to Dr. Tatter, who wanted to do MVD, but I opted for GK. Now, post yr and a half I have sensory loss and constant tingling, but it’s worth it to be pain and drug free. I do follow up with Dr. Bey every 3-6 mos.
For the first several days following GK the pain was horrific and my meds were upped, but I did eventually wean off all meds. It was very slowly. I’m not sure when I really became aware of the tingling, spiderweb feelings. I think the first thing I noticed was my left ear, feeling like something flew in there and crawling around, and it itched a lot. Then I noticed that the left side of my tongue and lips tingled. Then the numbness in my upper left gums, eventually the left side of my nose, cheek and eye. It’s not completely numb, but more of a sensory loss, itching all the time. I’m not always sure I’m feeling if my nose is running or I’m drooling. But I will take sensory loss over the horrible pain any day. I’ve had 2 MRI’s, since GK to make sure nothing else is going on. The radiologist (Dr. McMullen, I think) at Baptist said I have MS and that’s why I’m not a candidate for MVD. Dr. Bey and his associates said I do not. A spinal tap didn’t show anything pertaining to MS and I’m too old to be showing symptoms (59) now, according to Dr. Bey. Hope this informatino is useful. How are you now? Any pain?
Hi Jennifer,
It has progressed to a feeling like tiny bubbles now. It is sort of like when you pour peroxide on a caut and it bubbles up. It is not painful but weird. I have noticed today that my ear itchs alot. I talked to Rich yesterday and he said to wait it out. By the time I started on a drug the sensation would had changed or maybe gone. He seems to think it will be only temporary. I certainly hope so. I have also been back and forth on the MS diagnosis. I do not have any other symptoms and only one lesion on my brain stem so by definition alone I do not have MS. But because of the similarity to MS I could not have MVD either. It has been 6 weeks since surgery and I am not scheduled to go back until October unless these sensations continue or get worse. I have very little normal TN pain (shocking) and so thankful for that. I can handle these weird creepy crawlies alot better that the horrible pain that I was in before! Have you gotten any relief from heat applied to your face or any other home remedies?
Jennifer said:
For the first several days following GK the pain was horrific and my meds were upped, but I did eventually wean off all meds. It was very slowly. I’m not sure when I really became aware of the tingling, spiderweb feelings. I think the first thing I noticed was my left ear, feeling like something flew in there and crawling around, and it itched a lot. Then I noticed that the left side of my tongue and lips tingled. Then the numbness in my upper left gums, eventually the left side of my nose, cheek and eye. It’s not completely numb, but more of a sensory loss, itching all the time. I’m not always sure I’m feeling if my nose is running or I’m drooling. But I will take sensory loss over the horrible pain any day. I’ve had 2 MRI’s, since GK to make sure nothing else is going on. The radiologist (Dr. McMullen, I think) at Baptist said I have MS and that’s why I’m not a candidate for MVD. Dr. Bey and his associates said I do not. A spinal tap didn’t show anything pertaining to MS and I’m too old to be showing symptoms (59) now, according to Dr. Bey. Hope this informatino is useful. How are you now? Any pain?
My Mom is going to have the gamma Knife procedure in a month or so. She is in the process of just getting it scheduled. I was hoping you could just summerize what the procedure entitiles?
Was it in and out? Was there any actually cutting? I know its been a few months since you had it, but any info would be great?
How are you doing now?
Why did you go the route of Gammy Knife, compared to the many I hear having the MVD surgery?
Was your pain consistently bad all the time, or did it have varying degrees?
Thank you so much for sharing. Very helpful.
Sarah
Sharon,
Yes! Congratulations on what seems to be a wonderful success story. Thank you for sharing this inspiration with us all. Best wishes and prayers for continued relief coming from this corner. If I am reading correctly, you began with a “shocking sensation”, and the ache followed? I am asking because I am trying to discern whether you are a Type I, or Type II sufferer ( or were rather, yay!) in the beginning, when your condition originated.
I am so happy when I find out anyone has beat this!
Stef
Just published to my personal blog here at livingwithtn.org...
The following link will take readers to one of the more extensive and current references I have seen on outcomes and practice standards for Gamma Knife, Cyber Knife, and Liniac radio surgery. It is published by the International RadioSurgery Association -- a group which we must understand has a vested interest in seeing this procedure validated and accepted widely. The 16-page article is current as of January 2009. It does not reflect or reference considerably less optimistic results reported on the TNA website. But I still believe it is worth reading for the extent of the information and its extensive references.
See http://www.irsa.org/TN%20Guideline-UpdatedJan2009.pdf
Regards and best to all:
RedSorry it took so long to get back to you. I haven't been on in a while. I am doing really good right now. I have had ups and downs since the procedure and I am still on low doses of meds but the pain is almost not there. I have the dull achy pain and the spider sensations alot but not the shocking pain. I am very pleased with the results.
The actual procedure included the positioning of the halo. THe doctor gave me shots to numb the sites. He then inserted the four screws that hold it in place. I can't tell you that it did not hurt and the tighter it got the worse it hurt. After it was in place I had a MRI and waited for my team to design the plan of treatment for me. When the procedure began, the machine was confortable and quiet. I didn't feel anything. THe night after the prodecure and the next couple of days were rough but overall it was worth it. Good luck to you Mom!
Jennifer Ruotolo said:
My Mom is going to have the gamma Knife procedure in a month or so. She is in the process of just getting it scheduled. I was hoping you could just summerize what the procedure entitiles?
Was it in and out? Was there any actually cutting? I know its been a few months since you had it, but any info would be great?
How are you doing now?
Sarah Hilton said:
Why did you go the route of Gammy Knife, compared to the many I hear having the MVD surgery?
Was your pain consistently bad all the time, or did it have varying degrees?
Thank you so much for sharing. Very helpful.
Sarah
Sarah,
I was not a candidate for MVD because I have a lesion that resembles MS. Gamma was the best choice for me.
Sharon,
about a year ago you posted about your success with the Gamma Knife procedure. How are you doing now may I ask? I am considering having it done and I am scared. I have Atypical Post Herpetic Trigeminal Neuralgia. So the results may not me as good as they were for you. Has it lasted? What kind of Tn do you have Classic or Atypical? Any info would be so appreciated. Thank you
God Bless
laurie
"I am truly happy for you! Trusting that you will continue with your recovery and keep us posted. Thanks for sharing happy moments" - Oh yeah, I said that last July!-:P)
Having had 3 of them applied, I like "halo" jokes, Sharon!
"Red", when this discussion picked-up again in February, I shoulda, coulda responded, having read and living with my mutated, off-the-chart version of one of the best links in the house:) Thank you!
http://www.irsa.org/TN%20Guideline-UpdatedJan2009.pdf
How is your Mom, Jennifer?
Sarah, your April 24th comment - "Hello Fellow TN Survivors: I am off for MVD surgery, I love my neurosurgeon; he understood. Any suggestions for a quick recovery?" ---- Yes, YOUR GREAT ATTITUDE!
This is nice:) bob
Bob,
thank you for the excellent link. I will be studying it for the next few days.
God Bless
laurie keil
sharon i was wondering since its been almost a year does it seem a lot has really changed i know the halo hurt but two days after the gk my face burned on my cheek bone from ear to corner of my lip it hurt so bad they told me to wait a couple of weeks see if it got better it got to burning so bad when i went back to my neur he was out with knee surgery the nuer standing in for him said gk possibly gave ad i would of give any thing to go back to lighting bolts due to the burn num crawling my eye even itched but so thankful to the ones it helps we all want to be pain free thanks i hope you reply