Update and Asking for your help again. :)

1

Hi all,

I thought i would give you all an update on what has been happening to me. I have been at an all time low as alot of you must know from all the thoughtfull messages everyone has been sending to me. Thank you so much to all of you. I have begun to feel a little better since the Doctor changed my medication.

I went to see my consultant today. !!

He said that the MRI i had done, showed clearly a loop. !!

So now he is arranging for me to be seen by a neurosurgeon. He says he will fax my details etc over to him and ask for an urgent app for me to be seen like yesterday . LOL

After talking to him about what he thought might be suggested, He said he thought in his opinion, it would be best to have an MVD done, But to take a notepad with me and ask as many questions as possible that i can think of when i see him.

So guys your help is needed once again if you all dont mind. :)

What questions should i be asking, yes i have thoughts of what to ask but twenty etc heads is far better than just one half fogged one.

So... Can any one help with any suggestions as to what i should be asking. All ideas welcome. :)

Sending all my love to you all and hoping that we all have better days in the not so distant future...

Nita x x x

2

Anita it's great that things have picked up for you. Really good news. :-)

I'm in the same position as you - due to see the surgeon in around six weeks after my MRI showed a compression. So I'm going to be taking notes here as well.

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Nita, [and over-the-shoulder, Emmy]

In your original profile, you described your medical history in these terms:

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I don't know where to start, I got diagnosed with TN, put on Gabapentin, but it made me ill. Put on Carbamezapine, Its been ok till the last few months where now its getting so bad dont know where to put my head. My Doc last week gave me Nerve blocks but they only work for about 4 hours, tried to up my Carbamezapine, but he decided to change it to Tegretol... But he lowered the dose. Then when i rang up in agony. That's when he gave me the nerve block.

He has said i need an MRI, put me back on my carbamezapine again and sent me home. Where do i go from here. My MRI isnt until 5th June. The Pain i have is like electric shocks ,on the right side of my face, above and below my lips and all up the side of my nose if that is any help ...

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FYI: Your reported symptoms seem to line up pretty well with those reported by other patients diagnosed with Typical Trigeminal Neuralgia.

FYI: Tegretol is a brand name for Carbamazepine. I'm a little surprised that your reactions to these two forms of the same drug were so noticeably different. Was there a reason your doctor gave for reducing your dose rate when he put you on the brand name of the drug?

Y0u've also asked for help in setting up questions for the neurosurgeon. I would offer these:

1. How long have you been in neurosurgical practice, and where were you trained?

2. How often do you perform MVD surgery?

[note: once per month is not a very deep experience curve. I'd be more comfortable with a surgeon that does two or three operations per WEEK].

3. What rate of initial success in total relief of pain have your patients like me -- with Typical TN -- had from MVD? What additional fraction of patients get relief while continuing medication?

4. What rate of significant side effects such as facial numbness or Anesthesia Dolorousa have your patients had? Have any of your patients lost hearing or the tearing reflex of the eye?

5. How many years should I expect relief from pain to last -- and how do you know?

6. Do you track long term outcomes by periodically surveying your MVD patients? If not, then how do you know your success rates?

7. If I have pain recurrence, what are the statistics on successful re-operation by MVD?

If your doctor voices any concerns about your age or other health factors as disqualifications for MVD surgery, you might ask him as nicely as you can, whether there are studies published in medical literature, that would justify denying you the most effective surgical treatment for this disorder.

These ought to get you started. I likewise suggest a reading of the "Help with Research" tab on any of the pages here on the site. Apart from the fact that I wrote most of it, there's a lot of information there that you may find useful in your discussions with specialists.

Do let us know how this consultation comes out.

Go in Peace and Power

Red

4

Oxcarbamazepine is Trileptal, not Tegretol. Different drug. That explains the change in dose. And for whatever it's worth, I'm just one of "the gang" around here, despite having talked with a lot of patients over almost 17 years -- I encourage others to weigh in with their own experiences, and to correct my mistakes when I make them (which I do).

Go in Peace and Power

Red

5

This is the place to have a moan Nita! :-)

You've got your appointment through much more quickly than I have - I still don't see my neurosurgeon until the beginning of August. Apparently he has long waiting lists but has a very good reputation so I guess I need to be patient. My TN has settled in a pattern lately, one week where I am not too bad (relatively speaking - it's amazing how your pain tolerance increases over time), the next week where it all starts to build up again, the following week/ten days when it is horrible and I can't eat, talk or sleep properly then it all calms down again and then the cycle repeats. So at least I get the odd reprieve from the really horrible stuff every so often.

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Hi Nita

I just spent time time on Google finding out about the surgeon I'm seeing. Conveniently he has his own web site at Nik Patel so I was able to learn quite a bit there. TN is one of his specialisations and he has been involved in various research projects. I have also seen comments from a couple of users on here speaking highly of him which reassures me too.

So as so often Google is your friend I think. :-)

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Nita: send me a name and location, and I'll see what I can dig out on the surgeon you are to see. You might be surprised how much you can learn by searching Google on just his name and location, plus the word "Vita".

Regards, Red

8

Nita, I’ve been sniffing about to locate what I could on Dr. Singh. Your difficulty in locating data wasn’t “just you”. The name is common, even in medicine. However, I was able to find just a bit on him. His areas of specialty at the hospital are listed as

  • Degenerative Spine
  • Trauma
  • Tumor / Infection

I don't see anything there on face pain issues at all. However, he appears to have gone through a week of training at the University of Pittsburgh in 2008, for minimally invasive endoscopic surgery and MVD. How many of them he's done isn't obvious. There are a few papers in neurosurgery and spinal issues associated with that name and Staffordshire, but again, none that I saw which appeared pertinent to your primary issues.

While doing this snooping, I also ran into some hospital reviews which somewhat took me aback. This hospital impressed some patients as poorly equipped and not altogether clean; one review that I read indicated that the patient intake people took three hours to triage a patient who presented with cardiac symptoms. I realize that your NHS system has a deserved reputation for this kind of unacceptable performance, despite the desire of many professionals within the system to do well by their patients. So I don't want to come across as unfair or negative in any reflexive way. I merely suggest that you be prepared to be quite assertive in any relationship you establish with these folks or with Singh.

There is a section of the Help with Research tab on the menu at the top of each page on Living With TN, which may be useful in preparing for your interview with Singh. It addresses establishment of a good doctor-patient relationship. I suggest you read it and feel free to come back with additional questions or comments.

Go in Peace and Power

Red Lawhern, Ph.D,

Resident Research Analyst, LwTN

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Hi Anita, is the doctor that you mention JS Singh? In 1994 I saw a locum neurosurgical registrar at the same hospital. Please be very careful,
Lyn

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Lyn, it may be useful for you to expand upon your specific concerns in a private message to Nita. As Ben sometimes reminds us, it is site policy that we do not criticize doctors publicly, though it's fair game to recommend one that we've had a good personal experience with...

Regards, Both...

Red

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Hi Red, I have done so :-)

Am very aware of not saying toooo much on the boards. A very happy birthday for yesterday, I hope that you enjoyed your day,

Lyn

Richard A. "Red" Lawhern said:

Lyn, it may be useful for you to expand upon your specific concerns in a private message to Nita. As Ben sometimes reminds us, it is site policy that we do not criticize doctors publicly, though it's fair game to recommend one that we've had a good personal experience with...

Regards, Both...

Red