Really Struggling

I am really struggling lately. MY TN has been flaring badly. Meds really are not helping. I have had a failed MVD and a failed Balloon Compression. I am currently looking in to stimulators, but my consult is in June and I don't know if I can take the pain until then, only to possibly find out I am not a candidate and/or my insurance won't cover it. Another option presented to me is microsurgical sectioning. That can be done where I live (the stimulator can be done at a closest, 5 hours away). I need relief! Looking for input and suggestions. I have other issues that prevent me from taking a lot of the meds and the ones I can take have to be taken at low doses.

Have you tried topical lidocaine? It doesn’t work for very long but gives temporary relief during bad flares. Capsaicin cream has also worked well for me. Aromatherapy sometimes works as a temporary soothing measure.

I’m sorry to hear that your pain isn’t well controlled. Please try to remain positive and distract yourself as much as you can.

I need more than temporary relief. I’m looking surgical.

If you’re looking for surgical relief, you’re best served by consulting with your neurosurgeon. It’s not a decision that you want to make lightly since surgery can sometimes worsen your pain. It did for me. My family doctor told me to always ask the surgeon:

  1. How many of the particular procedure he/she has performed and how often
  2. His or her personal success rate and the duration of pain relief
  3. What are the complications and how often they occur for that surgeon

And if you’re not satisfied with those chances, don’t be afraid to ask for a referral to a more experienced surgeon. Surgery is technique dependent so success rates in studies won’t necessarily mean that your particular surgeon will have the same chances of success with you. Temporary relief can give you some improved quality of life while you’re ruminating on surgery and waiting for appointments.

Good luck!

I am so sorry to hear you are in such distress...as a suggestion, lets get through the week. Ask your Dr for a medication eval, so you can get through this flare up.. Perhaps, you can add a muscle relaxant or a non opiate med like tramadol. Then the next step would be a more invasive intervention like the stimulator or balloon compression which goes to the source of most pain: the ganglia.

The other argument would be to do what Dr. Jannetta would say to do, go back in and see what happened or what was missed (This was stated in Dr Casey video on our site)

Stay strong

~E

I have another condition which makes a lot of the main medications used unsafe :(

I have an appointment with my neurosurgeon on Monday to discuss options. I am hopping for some good answers. I still have my appointment out in Kansas City in June. So there is a back up. I just much prefer my guy here in St. Louis.


I have had a balloon compression! It messed me up royally! Due to it, I have anesthesia dolorosa around/in my left ear/cheek and a fourth nerve palsy which causes double vision in my left eye. The latter is slowly improving. I wish I would have NEVER done that procedure and would NEVER recommend it to anyone! I know of no success stories with it!


Edster said:

I am so sorry to hear you are in such distress...as a suggestion, lets get through the week. Ask your Dr for a medication eval, so you can get through this flare up.. Perhaps, you can add a muscle relaxant or a non opiate med like tramadol. Then the next step would be a more invasive intervention like the stimulator or balloon compression which goes to the source of most pain: the ganglia.

The other argument would be to do what Dr. Jannetta would say to do, go back in and see what happened or what was missed (This was stated in Dr Casey video on our site)

Stay strong

~E

Hmm,

This sounds limited...I would explore very comprehensively the sectioning procedure very careful because once it is done there is no turning back. As for medications, a good Neuro can create a combination for you that might keep the pain in check

Please keep us posted

~E

These are very good questions and need to be asked. However, you will not get a straight answer from the surgeon. I asked these questions to my prospective surgeons. The surgeons financial livelihood depends on convincing you to agree to surgery. They have been asked these questions thousands of times before. They are very skilled in answering in such a way as to get surgeries performed. That is how the real world of surgery works. I was trained as an attorney and used to make my living by asking questions. I found the surgeons answers to be extremely nuanced to the degree that there was not much value to them. In some way it sounds hopeless, however...

I found that I got some very good information by asking the surgeons questions about the different kinds of surgery. They were very forthcoming with good information about the risks for types of surgery they did not perform in their own practice. Once you get that information from that doctor, then you can ask the surgeon that does perform that type of surgery more pointed questions.

toothache said:

If you're looking for surgical relief, you're best served by consulting with your neurosurgeon. It's not a decision that you want to make lightly since surgery can sometimes worsen your pain. It did for me. My family doctor told me to always ask the surgeon:

1) How many of the particular procedure he/she has performed and how often
2) His or her personal success rate and the duration of pain relief
3) What are the complications and how often they occur for that surgeon

And if you're not satisfied with those chances, don't be afraid to ask for a referral to a more experienced surgeon. Surgery is technique dependent so success rates in studies won't necessarily mean that your particular surgeon will have the same chances of success with you. Temporary relief can give you some improved quality of life while you're ruminating on surgery and waiting for appointments.

Good luck!

That's very true, Don. Medicine is a profession where you're paid per patient and per procedure, so there is an issue of financial interest. However, I think getting asked these questions would make me think twice if I were the surgeon, especially liability wise. I hope the OP finds a surgeon of good character.

Don said:

These are very good questions and need to be asked. However, you will not get a straight answer from the surgeon. I asked these questions to my prospective surgeons. The surgeons financial livelihood depends on convincing you to agree to surgery. They have been asked these questions thousands of times before. They are very skilled in answering in such a way as to get surgeries performed. That is how the real world of surgery works. I was trained as an attorney and used to make my living by asking questions. I found the surgeons answers to be extremely nuanced to the degree that there was not much value to them. In some way it sounds hopeless, however...

I found that I got some very good information by asking the surgeons questions about the different kinds of surgery. They were very forthcoming with good information about the risks for types of surgery they did not perform in their own practice. Once you get that information from that doctor, then you can ask the surgeon that does perform that type of surgery more pointed questions.

toothache said:

If you're looking for surgical relief, you're best served by consulting with your neurosurgeon. It's not a decision that you want to make lightly since surgery can sometimes worsen your pain. It did for me. My family doctor told me to always ask the surgeon:

1) How many of the particular procedure he/she has performed and how often
2) His or her personal success rate and the duration of pain relief
3) What are the complications and how often they occur for that surgeon

And if you're not satisfied with those chances, don't be afraid to ask for a referral to a more experienced surgeon. Surgery is technique dependent so success rates in studies won't necessarily mean that your particular surgeon will have the same chances of success with you. Temporary relief can give you some improved quality of life while you're ruminating on surgery and waiting for appointments.

Good luck!

Well, if you don't ask the questions, you have no one to blame but yourself. Ignorance is not bliss, in fact, with TN it can be quite painful.