Total Left Side Numbness

1

Good evening, all.

I have posted this information before, but am reaching-out again, as I want to know if what I am experiencing is happening with other TN patients and those who have received GK and/or CyberKnife.

I would so appreciate your feedback, suggestions, and/or help regarding my current situation.

I had Gamma Knife in October of 2011, Cyberknife in April 2012, and most recently an SPG Block.
After the Gamma Knife, there was no relief initially. Then I had approximately 4-6 weeks of no pain. Then my pain returned with a fury. I opted for Cyberknife the second time, as the holes in my head from the halo took a long time to heal.

I had a host of symptoms that were very unpleasant; burning in my mouth/face, sores that appeared in and around my mouth, thrush, etc. My neurologist suggested that an SPG block would be helpful with the neuropathic pain (non-electrical shock type), which I elected, as my shocking pain was virtually gone.

While I had numbness and burning before the SPG, it was limited to my mouth. Now my eye has felt weird ever since the Cyberknife procedure, though it is not dry; just feels like someone's finger is in there or cotton is stuffed in it somehow. Now, my numbness consumes the entire left side of my face and head; including my jaw, throat, tongue, lips, nose, eye, cheek, eyebrow, and forehead - even continuing up into my scalp.

While this is better than the pain (I suppose), it presents a host of problems; including food and beverages falling out of my face, which is very uncomfortable emotionally. If my husband is not around, I have to rely on others to tell me things are stuck to my chin :-( It is affecting my speech, I can not feel my mouth, and things are often in my eye, as there is no feeling there, either.

Has anyone had these symptoms post-Cyberknife/SPG? Can I expect the numbness to dissipate and eventually go away? I have heard that nerve damage in your brain is very different than nerve damage elsewhere in the body. Can I do anything to improve the chances of the healing of the nerve bundle in my brain/brain stem?

I can not imagine having the symptoms I have now for the rest of my days :-/ Obviously, my relationships are affected and my mood is quite erratic.

Thank you for reading and for any help you can offer.

Christine

2

Hi Christine,
I feel very sad reading your post. I heard that there is risk doing this surgery and this is what I fear most - numbness . Some even have pain on top of the numbness . I hope someone here can give you good advice and also pray that your symptoms are temporary.

Warmest regards.

3



Seow W said:

Hi Christine,
I feel very sad reading your post. I heard that there is risk doing this surgery and this is what I fear most - numbness . Some even have pain on top of the numbness . I hope someone here can give you good advice and also pray that your symptoms are temporary.

Warmest regards.
4

Christine,

It grieves me to read your post. I, too, am a victim of the gamma knife. I had a successful MVD many years ago. When the pain returned, I opted for the gamma knife after reading about how wonderful it was. Unfortunately, many of us were not told the bad outcomes that could happen. I don't have the numbness, but I do have constant pain in all three branches of the nerve and TMJ. I have several friends who have the numbness that you described.

Although there is no cure now, research is being done that could bring permanent healing. Please go to

http://www.facingfacialpain.org/ and scroll to the bottom of the page to the video. My heart really goes out to you. I will keep you in my prayers. There is always hope.

Bronwyn Cowell

5

I am sorry to hear your pain has returned, I am trying to decide between MVD and Gamma, can you tell me how long your relief was from the MVD and also from the Gamma procedures.

Thanks John

Bronwyn said:

Christine,

It grieves me to read your post. I, too, am a victim of the gamma knife. I had a successful MVD many years ago. When the pain returned, I opted for the gamma knife after reading about how wonderful it was. Unfortunately, many of us were not told the bad outcomes that could happen. I don't have the numbness, but I do have constant pain in all three branches of the nerve and TMJ. I have several friends who have the numbness that you described.

Although there is no cure now, research is being done that could bring permanent healing. Please go to

http://www.facingfacialpain.org/ and scroll to the bottom of the page to the video. My heart really goes out to you. I will keep you in my prayers. There is always hope.

Bronwyn Cowell

6

Christine,

While I did not have any of the procedures you mentioned- I did have a MVD and a stroke very close to the brain stem, ie, damage in the same place you mention. I was numb for a VERY long time ( parts of my face chin and mouth still are). I used to have to rely on my hubby as well to tell me if there was food on my face. The sensations did pick up with coming back, but not all the way. I had trigger point therapy and scar tissue lesions massaged in the back of my head ( look up trigger point therapy) and that MAY may have been what helped a bit of the numbness. I had the feeling someone had shoved cotton in my ear and was holding their finger onto it. That eventually resolved. Somedays, oddly, it comes back ( like today).

I am sorry you are going through this all, my best wishes to you.

7

John,

I had atypical trigeminal neuralgia in 1983. A friend told me about Dr. Jannetta, who was in Pittsburgh before he retired. He performed the MVD, and I was pain-free for about 21 years. I had the gamma knife in 2006, and I never became pain-free. New pain came a few weeks later. A few months later I had pain in all three branches of the trigeminal nerve. My dental bite changed, and I ended up with TMJ. Be sure you have a good neurosurgeon with many success stories. I wish you all the best.

Bronwyn

John said:

I am sorry to hear your pain has returned, I am trying to decide between MVD and Gamma, can you tell me how long your relief was from the MVD and also from the Gamma procedures.

Thanks John

Bronwyn said:

Christine,

It grieves me to read your post. I, too, am a victim of the gamma knife. I had a successful MVD many years ago. When the pain returned, I opted for the gamma knife after reading about how wonderful it was. Unfortunately, many of us were not told the bad outcomes that could happen. I don't have the numbness, but I do have constant pain in all three branches of the nerve and TMJ. I have several friends who have the numbness that you described.

Although there is no cure now, research is being done that could bring permanent healing. Please go to

http://www.facingfacialpain.org/ and scroll to the bottom of the page to the video. My heart really goes out to you. I will keep you in my prayers. There is always hope.

Bronwyn Cowell

8

Thank you, Seow. Your kindness means a great deal.
C

Seow W said:

Hi Christine,
I feel very sad reading your post. I heard that there is risk doing this surgery and this is what I fear most - numbness . Some even have pain on top of the numbness . I hope someone here can give you good advice and also pray that your symptoms are temporary.

Warmest regards.
9

Thank you, Bronwyn. Sorry to hear of your pain and constant symptoms. I wish that I would have been more informed by my doctor. The perception is "numbness is better than pain", which is true to some extent. BUT, it is still very uncomfortable and the meds I am on make me feel terrible.

You are also in my thoughts and I love your name~

Christine

Bronwyn said:

Christine,

It grieves me to read your post. I, too, am a victim of the gamma knife. I had a successful MVD many years ago. When the pain returned, I opted for the gamma knife after reading about how wonderful it was. Unfortunately, many of us were not told the bad outcomes that could happen. I don't have the numbness, but I do have constant pain in all three branches of the nerve and TMJ. I have several friends who have the numbness that you described.

Although there is no cure now, research is being done that could bring permanent healing. Please go to

http://www.facingfacialpain.org/ and scroll to the bottom of the page to the video. My heart really goes out to you. I will keep you in my prayers. There is always hope.

Bronwyn Cowell

10

Audarah,

I so appreciate you getting back to me and for your feedback. You are one of the few people I have heard from who I believe is going through nearly the exact same thing as I am. I know that the base of the TN nerve bundle (all three branches) shows significant inflamed tissue.
I have also been told that the nerves in the brain do not heal like other nerves and that I can not count on total recovery. They tell me it MAY happen, but not likely.

Do you know how to cope with that? Do you work? Has your speech been affected?

Looking forward to hearing back and hope you get better every day.

Christine

Audarah said:

Christine,

While I did not have any of the procedures you mentioned- I did have a MVD and a stroke very close to the brain stem, ie, damage in the same place you mention. I was numb for a VERY long time ( parts of my face chin and mouth still are). I used to have to rely on my hubby as well to tell me if there was food on my face. The sensations did pick up with coming back, but not all the way. I had trigger point therapy and scar tissue lesions massaged in the back of my head ( look up trigger point therapy) and that MAY may have been what helped a bit of the numbness. I had the feeling someone had shoved cotton in my ear and was holding their finger onto it. That eventually resolved. Somedays, oddly, it comes back ( like today).

I am sorry you are going through this all, my best wishes to you.

11

John,

I did not have the MVD, as it seemed too extreme for me; open brain surgery and long recovery, etc. I did have Gamma Knife in 2011, which provided me with approximately 4-6 weeks of relief. Then my pain came back with a fury. I decided to follow that with Cyber Knife, as the halo used with Gamma knife required screws into my scalp, which were long to heal.

Now, I have the symptoms mentioned above, which are no fun, but I am not falling to the ground in pain these days.

Do lots of research and find out if your doctor has performed these types of procedures - mine had very little experience.

Best wishes and let me know which you pick, if it works, etc.
C

12

Christine,

I hope as time goes by, things improve for you, I can understand how the numberness leads to a hole set of other challenging issues, as you have been dealing with. Can you shed some light on the differences between the gamma knife and cyber knfe procedures, I seen these reference here and other articles about TN and wrongly assumed they were pretty much the same procedure. Thanks for sharing your experience

Christine P. said:

John,

I did not have the MVD, as it seemed too extreme for me; open brain surgery and long recovery, etc. I did have Gamma Knife in 2011, which provided me with approximately 4-6 weeks of relief. Then my pain came back with a fury. I decided to follow that with Cyber Knife, as the halo used with Gamma knife required screws into my scalp, which were long to heal.

Now, I have the symptoms mentioned above, which are no fun, but I am not falling to the ground in pain these days.

Do lots of research and find out if your doctor has performed these types of procedures - mine had very little experience.

Best wishes and let me know which you pick, if it works, etc.
C

13

John,

Sorry for the delay in getting back to you. I haven't been feeling great and keeping-up with work, home, family, etc. is sometimes all I can handle.

With regard to your question: Gamma Knife is concentrated radiation to the nerve. You have to have your head in a halo, which for me was very uncomfortable. Then they deliver the radiation to the nerve(or as close as possible, using an MRI) while you lay down and are secured into one position with the halo.

Cyber Knife is also very concentrated radiation, but you are not wearing a halo. You are fitted for a "mask" of sorts, which holds your head still and you lay on a table for approximately one hour while they deliver the radiation to the nerve. I opted for the Cyber Knife the 2nd time, as it was less invasive. In my hindsight, I wish I had done the Gamma knife again, as they told me cyber knife is not as precise.

This is why I believe I am having the discomfort and numbness I have now.

Let me know what you decide and be well,
Christine

14

Since my Gamma on March 20th the right side of my scalp is numb. I also have a weird soreness on the right side of skull where the pin was placed. Hope this goes away. Strange little rushes of I don’t know what. Those are my present issues. I do hope that the feeling returns for you. Best wishes. I do however feel better than I did.

15

Hi, Lou.

I didn't have any of this weird total left-side numbness until I had my second procedure (the CyberKnife). I did have pain from the halo after the Gamma Knife and believe this is common, since they have to screw it into your head.
I hope you feel better soon and please keep me posted on thoughts, ideas, etc.

Christine

16

Hi Christine. I have had Gamma Knife ...the first time was 10 years ago which was very successful ..I was pain free for 10 years. Last June I went to a top Nueraligist and he told me to have GK again. Now like you the left side of my face including my tongue and lips down to my chin is totally numb. Recently I went to another Nueraligist and he stated that had I come to him ... he would never had me get GK the second time .He prescribed Lyrica which helps with the burning but I feel like I have worms crawling under my skin along with the numbness. I have TN since I was 34 years old .. I'm now 72 so I know the suffering we go through. Please do not get GK the second time . I wish you the best. Regards Mappy

17

Hi, Mappy.

I appreciate your response. Unfortunately, I had Gamma Knife with little success; I was pain-free for about 5-6 weeks, then my pain came back worse than before. I elected to have Cyber Knife the second time, but was not properly informed as to the possible side-effects. I have been suffering since. I have no feeling on the left side of my head. I have injured my eye a number of times, as I can't feel it. I have tried every medicine known to man, but can not get any relief.

I now am in the process of getting my medical records so I can pursue legal action. It won't help me heal, but I do feel the doctor was irresponsible in my treatment.

Thanks again and I hope you are feeling as good as possible. Please let me know if you hear of anything new or ideas.

Christine

18

Good for you Christine.. I'm in the same process fo obtaining my medical records . The Nueraligist who did the GK never disclose the side efffects of having the procedure the second time . My new doctor told me my nerve didn't like the amount of Radiation I recived. Now I have to live on Nuerantin and Lyrcia which makles me feel like Hell.Noone knows what it feels like unless you've been there . I will keep you posted. Mappy

19

Hi Christine: I had surgery to remove a benign tumor which was causing trigeminal neuraligia. The tumor was stuck to the trigeminal nerve and even though they had two doctors to be sure nothing caused numbness when they saw the tumor direct (as opposed to MRI) the surgeon opted to free me of pain but leave the right side of my face numb. Yes, it is not pleasant to have your friends constantly telling you with gestures or whatever, that you have food on your chin and mouth.

It is kind of like one hour from the dentist except it is 24 hours a day rather than one of 24 hours. However, what I have observed is after 3 months and a couple of days I have had some diminishment of numbness. At this rate, I estimate that if it clears it will be 10 to 12 months. My surgeon is optimistic that much of the numbness will go away over time--he even mentions "years"..

Yes, I agree that numbness is it's own form of minor irritation and pain--and although my sister and others who have seen me before the surgery are jubilant that the pain is gone, numbness is another kind pain and I agree it is hard to live with. However I* am taking a new path with perception and my numbness. , I haven't been able to do it YET but I have had success in the past with "mindset" where I just decide something or someone is not going to "bother" me. I just decided 2 days ago that I should try the mind set approach. No success yet, might take me 6 months or so to find the mind "key" but that is what I am working on at the moment. If I get to a different place in my "perception" I will let you know. And I will tell you what worked for me. Anne

20

Hello, I am so glad to have read your post. I am completely new to this site. I had MVD surgery on my right side, and now have no feeling on the right side of my face, eyelids/vision doesn't quite work right, I cannot speak or eat well, but I am single mother so my children enjoy telling me im drooling or have food dribbling. my ear feels plugged and just recently had it hemorrhaging because it was badly infected and I could not feel it. I am sorry for they symptoms you suffer as I can relate. I have not read all the replies you've received, but have you received any relief yet, any good advice, has it gotten better??

I wish you well.