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Dear Dr. XXXXXXX I'm A Patient In Toronto. You've Been
Question: Dear Dr. XXXXXXX
I'm a patient in Toronto. You've been answering my 2 questions thoroughly regarding my non-stop, heavy, weird throat symptom in the last several days. It is definitely not sore throat. It is a weird sensation of pins & needles, or feeling like if there are broken glasses there. The location of the sensation switches in between the right side, the middle side and the left of my inner throat/neck along the lining of larynx or the back of the tongue but it never stops. Due to that the strong intensity of this sensation and that it is constantly there, I am completely disabled that I can't lead normal life at all. As a mother with a 9-year old daughter to take care of, this is really a disaster.
I'm impressed that you carefully read all of what I wrote to you, and your detailed, professional answering to my questions as well as other thoughts you raised. Yes, you've guessed correctly of what I'm facing. I do not have a clear diagnosis. The most accurate diagnosis I believe is the one I got from an experienced ENT doctor in Illinois I saw in Jun who diagnosed me as laryngeal sensory neuropathy. I won't talk about all those disappointing experiences I had seeing doctors mainly in Toronto and also several US doctors for whatever reasons. I understand that my situation is very rare and hard, and don't blame any doctors.
The reason I only wrote my symptoms without telling the cause here is that many doctors don't want me to talk about the medical history. They just want me to describe the current symptom, and then tell me to try a medication, or say that they have no idea what's happening with me, and then dispatch me.
I have done a neck ultrasound, a head MRI, blood test recently, and some GI tests of upper GI endoscopy, esophageal motility test, 24hour PH study repeatedly two years ago. All these tests didn't reveal abnormalities.
Thank you for offering to examine me using an interdisciplinary team of specialists and see me. I would appreciate very much if you can let me know the details so that I can have an idea and prepare for it. I fully agree with you that I should get a good diagnosis which almost sounds like mission impossible to me. I'm willing to travel to XXXXXXX to see you for my problem. However, with my current symptom, I need to be accompanied by my family to take care of me who is now waiting for renewing his permanent resident card since his current PR card expires on Nov 7th, and it delays because his photo submitted didn't meet the requirement and he had submitted it again to line up again. Sure his renewed PR card will come sooner or later, and we can then go to XXXXXXX to see you.
I've provided more information regarding my medical history this time. I apologize if I wrote too much in this question, and I appreciate if you have any further thoughts or advice regarding my problem.
Joyce
I'm a patient in Toronto. You've been answering my 2 questions thoroughly regarding my non-stop, heavy, weird throat symptom in the last several days. It is definitely not sore throat. It is a weird sensation of pins & needles, or feeling like if there are broken glasses there. The location of the sensation switches in between the right side, the middle side and the left of my inner throat/neck along the lining of larynx or the back of the tongue but it never stops. Due to that the strong intensity of this sensation and that it is constantly there, I am completely disabled that I can't lead normal life at all. As a mother with a 9-year old daughter to take care of, this is really a disaster.
I'm impressed that you carefully read all of what I wrote to you, and your detailed, professional answering to my questions as well as other thoughts you raised. Yes, you've guessed correctly of what I'm facing. I do not have a clear diagnosis. The most accurate diagnosis I believe is the one I got from an experienced ENT doctor in Illinois I saw in Jun who diagnosed me as laryngeal sensory neuropathy. I won't talk about all those disappointing experiences I had seeing doctors mainly in Toronto and also several US doctors for whatever reasons. I understand that my situation is very rare and hard, and don't blame any doctors.
The reason I only wrote my symptoms without telling the cause here is that many doctors don't want me to talk about the medical history. They just want me to describe the current symptom, and then tell me to try a medication, or say that they have no idea what's happening with me, and then dispatch me.
I have done a neck ultrasound, a head MRI, blood test recently, and some GI tests of upper GI endoscopy, esophageal motility test, 24hour PH study repeatedly two years ago. All these tests didn't reveal abnormalities.
Thank you for offering to examine me using an interdisciplinary team of specialists and see me. I would appreciate very much if you can let me know the details so that I can have an idea and prepare for it. I fully agree with you that I should get a good diagnosis which almost sounds like mission impossible to me. I'm willing to travel to XXXXXXX to see you for my problem. However, with my current symptom, I need to be accompanied by my family to take care of me who is now waiting for renewing his permanent resident card since his current PR card expires on Nov 7th, and it delays because his photo submitted didn't meet the requirement and he had submitted it again to line up again. Sure his renewed PR card will come sooner or later, and we can then go to XXXXXXX to see you.
I've provided more information regarding my medical history this time. I apologize if I wrote too much in this question, and I appreciate if you have any further thoughts or advice regarding my problem.
Joyce
Brief Answer:
Thank you for the details which help clarify potential causes
Detailed Answer:
Once again thank you for your kind words and I did appreciate the detailed explanations of your history and medication history.
I will not go into exhaustive detail of what I'm thinking but suspect your doctors have also thought along the same lines with respect to potential causes to your problem. I'm imagining that most of the throat pain and discomfort you describe (NEUROPATHY) initiated following the thyroidectomy at some point. In some cases it can occur quickly while in others it takes longer to develop. Throat pain is a recognized complicated of thyroidectomy and one of the mechanisms thought to be a complication of the thyroidectomy involves damage to the laryngeal nerve and it is likely through this that pain and paresthesias (feeling of pins/needles and glass you mention) ensues.
With the additional history you've provided I see that an U/S of the neck was done which is a good thing.
There is another possibility that I see in the case which is an uncommon cause of throat pain and neuropathy but it should be considered and that is something called GLOSSOPHARYNGEAL NEURALGIA or GLOSSOPHARYNGEAL NEUROPATHY.
If you may be interested in coming to XXXXXXX for a workup I am happy to do my best and be very happy to talk to you about additional aspects of your case that would otherwise become very lengthy and longwinded in this response.
XXXXXXX is on the same time zone as Toronto. You are welcome to call me this evening after 9p at 440.842.3816 and we can have a chat about things. Given the fact it seems that you've had a number of diagnostic done it would be very helpful for you to get together the results of those studies to bring along so we don't end up reinventing the wheel so to speak. The list of medications you've been taking is impressive to say the least (though not surprising) since this form of neuropathy is very challenging to treat.
Having said that, I can tell you that I note several medications missing from what you've tried that I tend to you up front and have had good success in several patients with similar problems.
I look forward to chatting with you this evening if that's convenient for you.
Cheers!
Thank you for the details which help clarify potential causes
Detailed Answer:
Once again thank you for your kind words and I did appreciate the detailed explanations of your history and medication history.
I will not go into exhaustive detail of what I'm thinking but suspect your doctors have also thought along the same lines with respect to potential causes to your problem. I'm imagining that most of the throat pain and discomfort you describe (NEUROPATHY) initiated following the thyroidectomy at some point. In some cases it can occur quickly while in others it takes longer to develop. Throat pain is a recognized complicated of thyroidectomy and one of the mechanisms thought to be a complication of the thyroidectomy involves damage to the laryngeal nerve and it is likely through this that pain and paresthesias (feeling of pins/needles and glass you mention) ensues.
With the additional history you've provided I see that an U/S of the neck was done which is a good thing.
There is another possibility that I see in the case which is an uncommon cause of throat pain and neuropathy but it should be considered and that is something called GLOSSOPHARYNGEAL NEURALGIA or GLOSSOPHARYNGEAL NEUROPATHY.
If you may be interested in coming to XXXXXXX for a workup I am happy to do my best and be very happy to talk to you about additional aspects of your case that would otherwise become very lengthy and longwinded in this response.
XXXXXXX is on the same time zone as Toronto. You are welcome to call me this evening after 9p at 440.842.3816 and we can have a chat about things. Given the fact it seems that you've had a number of diagnostic done it would be very helpful for you to get together the results of those studies to bring along so we don't end up reinventing the wheel so to speak. The list of medications you've been taking is impressive to say the least (though not surprising) since this form of neuropathy is very challenging to treat.
Having said that, I can tell you that I note several medications missing from what you've tried that I tend to you up front and have had good success in several patients with similar problems.
I look forward to chatting with you this evening if that's convenient for you.
Cheers!
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Dear Dr. XXXXXXX
You're really very very kind and responsible, apart from being professional. I've uploaded a doc named "summary written by patient 0000" that you can have a clearer and more detailed idea of my medical history & situation. Besides, I've uploaded my head MRI report done on Oct 21 at UPMC(University of Pittusburgh Medical Center) when I went to see a neuro surgeon there. My family arranged me to see this doctor and I think there were some miscommunication. The doctor told me that he is a neuro surgeon who mainly does surgery and is not familiar with my illness, and he has no experience with lyrica. He said that I didn't have glossopharyngeal neuralgia according to head MRI. However, I am not sure about the conclusion. My most recent neck ultrasound done in Toronto on Sept 28 shows no abnormalities. I have the images of both the head MRI and neck ultrasound in case you want to have a look of the original images by yourself instead of only reading the reports.
I will try to call you this evening.
Greatest thanks,
Joyce
You're really very very kind and responsible, apart from being professional. I've uploaded a doc named "summary written by patient 0000" that you can have a clearer and more detailed idea of my medical history & situation. Besides, I've uploaded my head MRI report done on Oct 21 at UPMC(University of Pittusburgh Medical Center) when I went to see a neuro surgeon there. My family arranged me to see this doctor and I think there were some miscommunication. The doctor told me that he is a neuro surgeon who mainly does surgery and is not familiar with my illness, and he has no experience with lyrica. He said that I didn't have glossopharyngeal neuralgia according to head MRI. However, I am not sure about the conclusion. My most recent neck ultrasound done in Toronto on Sept 28 shows no abnormalities. I have the images of both the head MRI and neck ultrasound in case you want to have a look of the original images by yourself instead of only reading the reports.
I will try to call you this evening.
Greatest thanks,
Joyce
Dear Dr. XXXXXXX
I forgot to tell you one thing about my symptom. When I have a big/deep burp, my symptom is much more reduced at the moment of that burp. I'm not sure if it can indicate something.
Thks a lot,
Joyce
I forgot to tell you one thing about my symptom. When I have a big/deep burp, my symptom is much more reduced at the moment of that burp. I'm not sure if it can indicate something.
Thks a lot,
Joyce
Brief Answer:
Hello again and thank you for the additional information
Detailed Answer:
Glossopharyngeal neuralgia (GPN) is a clinical diagnosis which is not made by imaging studies. Imaging is generally normal in such cases. There has to be an index of suspicion for the diagnosis which then, will lead to plausible treatment. Surgery is almost never the first step unless imaging and other testing definitively points to neurovascular bundle involvement. Often times neurosurgeon will simply explore based on nothing else working.....That may be an acceptable LAST STEP....but not until all other avenues of conservative treatment have been exhausted.
I really believe that GPN is a possibility in your case.
I am not finding the uploaded MRI report nor your patient summary just to let you know. If you are having difficulty with the uploading process please try and contact TECH SUPPORT and they will help you navigate.
Also, I may still be tied tonight at 9p....things are progressing slowly in the hospital tonight.....but PLEASE feel free to give a call around that time. If I cannot answer I will send you a text message if your number comes through to my caller ID then, I will call you back later this evening when I am free (if that is not too late for you).
Looking forward to chatting....Cheers!
Hello again and thank you for the additional information
Detailed Answer:
Glossopharyngeal neuralgia (GPN) is a clinical diagnosis which is not made by imaging studies. Imaging is generally normal in such cases. There has to be an index of suspicion for the diagnosis which then, will lead to plausible treatment. Surgery is almost never the first step unless imaging and other testing definitively points to neurovascular bundle involvement. Often times neurosurgeon will simply explore based on nothing else working.....That may be an acceptable LAST STEP....but not until all other avenues of conservative treatment have been exhausted.
I really believe that GPN is a possibility in your case.
I am not finding the uploaded MRI report nor your patient summary just to let you know. If you are having difficulty with the uploading process please try and contact TECH SUPPORT and they will help you navigate.
Also, I may still be tied tonight at 9p....things are progressing slowly in the hospital tonight.....but PLEASE feel free to give a call around that time. If I cannot answer I will send you a text message if your number comes through to my caller ID then, I will call you back later this evening when I am free (if that is not too late for you).
Looking forward to chatting....Cheers!
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Dear Dr. XXXXXXX
Thanks a lot for you reply which makes sense to me. I don't think a head MRI can rule out GPN which I believe should be diagnosed more based on symptoms, medical history and other medical situations like medication treatment effectiveness etc.
I've successfully uploaded the 2 documents I mentioned for your review when you have time.
Really appreciate very much of your kind help in such busy schedule, and feel lucky to reach you. I will try to call you this evening at 9pm, and we can communicate anyway if can't get through this time.
Joyce
M: 1-647-518-2699
Thanks a lot for you reply which makes sense to me. I don't think a head MRI can rule out GPN which I believe should be diagnosed more based on symptoms, medical history and other medical situations like medication treatment effectiveness etc.
I've successfully uploaded the 2 documents I mentioned for your review when you have time.
Really appreciate very much of your kind help in such busy schedule, and feel lucky to reach you. I will try to call you this evening at 9pm, and we can communicate anyway if can't get through this time.
Joyce
M: 1-647-518-2699
Brief Answer:
Throat Pain and Next steps
Detailed Answer:
Good afternoon once again and as always thank you very much for the additional clarifications you've provided. I look forward to our chatting at which time I will be happy to explain the proposal for trying to bring this problem under better control by coming up with a firm diagnosis (i.e. GPN, LSN, complex regional pain syndrome secondary to mucosal damage from acid reflux, etc. etc.).
I reviewed the MRI and once again must mention that not only is an MRI NOT diagnostic of an entity such as GPN, the one performed didn't actually scan anything but a very small portion of the glossopharyngeal nerve as it lay in its normal anatomic location in proximity to the cerebellum and brainstem. Although these areas are where we most frequently find anomalies....a negative scan (which is MOST of the time) far from rules out a diagnosis of GPN, especially if the clinical features are present. And in my opinion, your symptoms are more consistent with GPN than LSN.
I look forward to speaking with you this evening if you like, HOWEVER, I will not be done with my work at the hospital until around 11pm. Since you've provided your phone number to me in the previous message, I am happy to the place the call when I am available (possibly even before 11p) but in all probability I will still be rounding with patients at 9p and would not be able to answer the call.
Shall I call you this evening when I am free or would you like to set up a time for let's say FRIDAY EVENING around 9p. Tomorrow evening I will be busy on scheduled consults from Europe and because of the time differential I believe I will not be done until rather late to be calling you her on this side of the Atlantic! LOL....
I also read your personal summary and will likely try and read it once more as I tentatively plan what sorts of diagnostic tests I'd like to recommend if you were to come to XXXXXXX for consultation since I don't want to repeat things that have been done. I will say, however, that it appears the initial MRI was WITHOUT GADOLINIUM CONTRAST and typically, when looking for neurovascular bundle anomalies we do use gadolinium contrast and order an MRA in addition to an MRI.
We shall see as we progress. Once again you may dial 440.842.3816 any time after 11p or allow me to call you at the earliest moment I become free to chat following work.
Cheers and looking forward to meeting you by phone this evening.
Throat Pain and Next steps
Detailed Answer:
Good afternoon once again and as always thank you very much for the additional clarifications you've provided. I look forward to our chatting at which time I will be happy to explain the proposal for trying to bring this problem under better control by coming up with a firm diagnosis (i.e. GPN, LSN, complex regional pain syndrome secondary to mucosal damage from acid reflux, etc. etc.).
I reviewed the MRI and once again must mention that not only is an MRI NOT diagnostic of an entity such as GPN, the one performed didn't actually scan anything but a very small portion of the glossopharyngeal nerve as it lay in its normal anatomic location in proximity to the cerebellum and brainstem. Although these areas are where we most frequently find anomalies....a negative scan (which is MOST of the time) far from rules out a diagnosis of GPN, especially if the clinical features are present. And in my opinion, your symptoms are more consistent with GPN than LSN.
I look forward to speaking with you this evening if you like, HOWEVER, I will not be done with my work at the hospital until around 11pm. Since you've provided your phone number to me in the previous message, I am happy to the place the call when I am available (possibly even before 11p) but in all probability I will still be rounding with patients at 9p and would not be able to answer the call.
Shall I call you this evening when I am free or would you like to set up a time for let's say FRIDAY EVENING around 9p. Tomorrow evening I will be busy on scheduled consults from Europe and because of the time differential I believe I will not be done until rather late to be calling you her on this side of the Atlantic! LOL....
I also read your personal summary and will likely try and read it once more as I tentatively plan what sorts of diagnostic tests I'd like to recommend if you were to come to XXXXXXX for consultation since I don't want to repeat things that have been done. I will say, however, that it appears the initial MRI was WITHOUT GADOLINIUM CONTRAST and typically, when looking for neurovascular bundle anomalies we do use gadolinium contrast and order an MRA in addition to an MRI.
We shall see as we progress. Once again you may dial 440.842.3816 any time after 11p or allow me to call you at the earliest moment I become free to chat following work.
Cheers and looking forward to meeting you by phone this evening.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Dear Dr. XXXXXXX
Thanks a lot for taking your time to reply me with constructive input. I really appreciate it. I usually go to bed with my daughter at 9:30pm everday. Could you pls call me at 9pm this Friday?
All the best,
Joyce
Thanks a lot for taking your time to reply me with constructive input. I really appreciate it. I usually go to bed with my daughter at 9:30pm everday. Could you pls call me at 9pm this Friday?
All the best,
Joyce
Brief Answer:
I have marked in 9p this Friday as the time to call.
Detailed Answer:
Thank you very much for your return message. Let us make an appointment for this Friday Nov. 9 at 9p (or thereabouts taking into consideration your 9:30p turn in time) to chat briefly about possible next steps.
All the best.
I have marked in 9p this Friday as the time to call.
Detailed Answer:
Thank you very much for your return message. Let us make an appointment for this Friday Nov. 9 at 9p (or thereabouts taking into consideration your 9:30p turn in time) to chat briefly about possible next steps.
All the best.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Dear Dr. XXXXXXX Greatest thanks. Talk to you soon, Joyce
Brief Answer:
On the calendar
Detailed Answer:
It's a date for sure! Looking forward.
Could you do a favor by closing this particular consult request and we will cover more bases and discuss the possibility of your getting to know our Fair City (albeit at a time of year when the weather's not the greatest...preaching to the choir probably.....HA!) in the near future.
On the calendar
Detailed Answer:
It's a date for sure! Looking forward.
Could you do a favor by closing this particular consult request and we will cover more bases and discuss the possibility of your getting to know our Fair City (albeit at a time of year when the weather's not the greatest...preaching to the choir probably.....HA!) in the near future.
Note: For further follow up on related General & Family Physician Click here.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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