I will write occasionally about my experiences here to record what occurs so if others want to know about or experience this condition they can reference it. I've also consolidated the entries so one can more easily read this ;)
Thursday, September 1, 2011 -
Noticeable symptoms occurred for me Thursday night. Upon arriving at work I started eating a burger and when I opened up my mouth to eat I felt a pain like I stretched a muscle or tendon too much in my neck. During the night as I worked, I started to feel numbness in the right side of my face and my right eye started to become dry.
Friday, September 2, 1011-
I went home and went to sleep as I normally do and figured that whatever was wrong might correct itself while I slept. However, when I woke up I realized that the problems did not go away and in fact had become more pronounced so I made an appointment with my primary care doctor and saw him Friday afternoon.
By the time I had the appointment I realized the following was wrong:
1. Could not blink my right eye lids.
2. A mild numbness on the right side of my face, almost like Novocain wearing off.
3. I could not smile normally.
4. Mild pain behind the ear.
5. I could not drink or eat normally, the right side of my lips would not adhere to the glass or cup completely and chewing food became more difficult. Brushing my teeth also felt funny on the right side of my mouth.
6. My right eyebrow was not as symmetrical to the left.
7. Creases in my forehead were only present on the left side of my face, on the right side they were smooth.
8. I could not whistle.
9. The right corner of my mouth/lips droops and the left side appears to be more pronounced.
After speaking with the doctor, I mentioned I had a mild head cold starting on Tuesday and had stopped shortly before the noticeable symptoms occurred. I realize now that this could have been a precursor to the condition, however, most people like myself would have thought nothing of it and went about their daily lives making a very reasonable assumption it's just another cold and it would eventually pass, it's a part of life.
The doctor diagnosed me with Bells Palsy and indicated maybe I should have seen him sooner or have gone to the Emergency Room to rule out a stroke. He ruled out a stroke and I do not have any conditions that would be triggers for stroke, just having completed and completely passed a physical examination just a few months ago.
The doctor prescribed Valacyclovir 500mg ( X2 tablets) 3 times daily for 10 days and Prednisone 20mg 3 times daily for 3 days. I was also advised to buy eye drops and an eye patch to use as needed and to especially use the eye patch at night. I have since found it very helpful to use the eye patch while working on the computer and watching TV. I wear glasses otherwise and found that to be very helpful when not wearing the eye patch. While researching Bells Palsy I discovered that taking vitamins B6, B12 and Zinc have been proven to help nerves heal so I started taking 1 tablet once daily of One-A-Day vitamins. I have an appointment this Thursday for follow-up, which would be 7 days.
I found that my right eye will tear up enough to keep itself moist and only need to use the eye drops from time to time.
Saturday, September 3, 2011 -
The symptoms progressed a bit more earlier in the day but during the evening the numbness pretty much subsided and I am able to eat food and chew on the right side a bit better. I also felt a little twitching of the muscles below my chin halfway between the chin and the front of the neck.
Sunday, September 4, 2011 -
Nothing new to report today except the eye is not producing as many tears on it's own as before and I'm having to use eye drops more frequently. The eye is much more sensitive to air around it, especially from air conditioners and ceiling fans. The eye patch helps greatly to keep air away from it.
Monday, September 5, 2011 -
The right eye is now producing more tears on it's own and I'm not having to use eye drops nearly as much. I worked for several hours outside wearing prescription sunglasses without needing anything else. Back to work tonight and anxious to see how things go using multiple computer workstations and bright florescent lights.
Tuesday, September 6, 2011 -
I felt "popping" in my right ear and mild pain inside my right ear. Conditions at work are less than ideal as whatever the environmental conditions are in the room is affecting my right eye. I have to use the eye patch for my entire work shift. I also have to use eye drops several times during the work shift. It helps to take a few naps (15 - 30 minutes) to relieve stress on the eyes.
Wednesday, September 7, 2011 -
Conditions are the same at work. At home there are times when I do not need to use the eye patch while working on the computer or watching TV since the house is humidity controlled.
Thursday, September 8, 2011 -
I had a follow-up appointment with my doctor today and we discussed all the options available: MRI, Cat Scan, decompression surgery...he is convinced the condition will clear itself within 2 to 4 weeks so we left it at that. Another follow-up appointment is set for September 29th.
Friday, September 9, 2011 -
Eye is more sensitive today.
Saturday, September 10, 2011 -
Eye is really more sensitive today.
Sunday, September 11, 2011 -
No change today.
Monday, September 12, 2011 -
I was able to use the eye patch less today, no other changes.
Tuesday, September 13, 2011 -
No change today.
Wednesday, September 14, 2011 -
I'm experiencing more pain behind the ear but managing it OK by will power. Tylenol is not helping.
Thursday, September 15, 2011 -
The pain has pretty much subsided. I recorded a song today too, lisp and all, I just felt like doing so! :)
Friday, September 16, 2011 - Saturday, September 17, 2011 -
No change.
Sunday, September 18, 2011 -
I am able to keep the eye patch off! No change otherwise.
Monday, September 19, 2011 -
Have to wear the eye patch again frequently. No change otherwise.
Tuesday, September 20, 2011 -
Once again I was able to keep the eye patch off until I got to work, then I had to put it back on. No change otherwise.
Wednesday, September 21, 2011 -
I am sensing some very subtle changes...at work I am not needing to wear the eye patch as much and I'm starting to feel some different kind of on and off mild pain more towards the rear of the head and not behind the ear as I have previously experienced...maybe perhaps this is the nerve regrowth starting? Hopefully I'll know soon enough :)
Thursday, September 22, 2011 -
Most of the pain has subsided, changes occurring *may* be subtle...hopefully during the next few days they will be more profound...
Friday, September 23, 2011 -
I've not needed to wear the eye patch for more than 24 hours and my facial features are appearing to be a little more symmetrical - ironically my right eye is more sensitive to light.
Saturday, September 24, 2011 -
No changes today. I'm very happy about not needing to use the eye patch :)
Sunday, September 25, 2011 -
The eye is now a little bit less sensitive to light (but still much more than usual). Third day without needing the eye patch! :) I sang a duet on-line yesterday with a lisp but it was not as pronounced :)
Monday, September 26, 2011 -
No changes today but I am very grateful the eye patch is no longer needed :)
Tuesday, September 27, 2011 -
The eye sometimes has more than abundant tear production and sometimes it's dry requiring eye drops...I'm noticing blinking sometimes works and sometimes it doesn't work and sensitivity to light varies.
Wednesday, September 28, 2011 -
No noticeable change today.
Thursday, September 29, 2011 -
Had my follow-up with the doc - improvement has come but recovery is not yet complete - he indicated it could be another 6-9 months until I am fully recovered.
Friday, September 30, 2011 -
It seems I go one little step forward and another little step back - like it's a see-saw battle - no noticeable change.
Saturday, October 1, 2011- Sunday, October 2, 2011-
No noticeable changes.
Monday, October 3, 2011-
Eye is a little bit drier today.
Tuesday, October 4, 2011-
No noticeable changes today.
Wednesday, October 5, 2011-
The dryness in the eye has pretty much gone away.
Thursday, October 6, 2011-
Take that back - the dryness came back towards the end of my work shift and cleared up after resting...
Friday, October 7, 2011-
The dryness in the eye has pretty much now again gone away :) It appears to be a see-saw battle :D
Saturday, October 8, 2011-
Nothing new to report today, I sang three songs still with a lisp but not as noticeable.
Sunday, October 9, 2011- Monday, October 10, 2011 -
Nothing new to report.
Tuesday, October 11, 2011 -
My right eyelid throbbed for quite some time and I've noticed it's blinking on it's own intermittently.
Wednesday, October 12, 2011 -
Unfortunately my condition has taken a step backwards with the eye - it's not blinking at all now. In addition I'm intermittently hearing popping noises and low-level rumbling noises in my right ear, almost like I have to yawn after descending down a steep mountain, hill or airplane.
Thursday, October 13, 2011 - Sunday, October 16, 2011 -
Nothing new to report.
Monday, October 17, 2011 -
During the early evening my right eye started to intermittently blink again.
Tuesday, October 18, 2011 -
There is some improvement in the appearance of my smile.
Wednesday, October 19, 2011 -
The right eye is not blinking as much again and there has been some regression in the appearance of my smile - it's like it's a see-saw battle right now.
Thursday, October 20, 2011 - Monday, October 24, 2011 -
Nothing new to report.
Tuesday, October 25, 2011 -
The right eye seems to be more dry today.
Wednesday, October 26, 2011 -
Nothing new to report today.
Thursday, October 27, 2011 -
The right eye seems to be better today and the rumbling noise inside the ear is not as loud.
Friday, October 28, 2011 -
The appearance of my smile has improved! The rumbling inside my ear continues.
Saturday, October 29, 2011 -
The rumbling has let up somewhat...no other changes...
Sunday, October 30, 2011 -
The right eye seems to be more dry today. What a roller-coaster ride this thing is!
Monday, October 31, 2011 - Friday, November 4, 2011 -
Nothing new to report.
Saturday, November 5, 2011 -
I decided to see if taking the B-12 vitamin Methyl cobalamin will help me; this is a more concentrated and direct form of vitamin B-12. It came in a bottle of 120 - 1 mg tablets to take by holding under the tongue and the dosage is from 1-3 mg per day so I decided to take one tablet every 8 hours and see what happens. This is in addition to the One-A-Day tablets I have been taking.
Sunday, November 6, 2011 - Monday, November 7, 2011 -
Nothing new to report today.
Tuesday, November 8, 2011 -
It seems to have reverted a little bit - again, the see-saw battle.
Wednesday, November 9, 2011 -
Some improvement noticed today - I hope this continues.
Thursday, November 10, 2011 -
The improvement is continuing...
Friday, November 11, 2011 -
The improvement is continuing...I think taking the Methylcobalamin is helping me :) I feel so good about the improvement that I scheduled to perform an on-line music concert on Sunday, Nov 27th! :)
Saturday, November 12, 2011 - Tuesday, November 15, 2011 -
Nothing new to report.
Wednesday, November 16, 2011 -
There's subtle improvement with the eye and I hope this continues. I think taking the Methyl cobalamin is helping me :)
Thursday, November 17, 2011 -
Nothing new to report today.
Friday, November 18, 2011 -
Ever so slight improvement - I really feel the Methyl cobalamin is helping me :) .
Saturday, November 19, 2011 - Tuesday, November 22, 2011 -
Nothing new to report.
Wednesday, November 23, 2011 -
No doubt the the Methyl cobalamin is helping me! I got another bottle today and the store clerk remembered me from the last visit and noticed the improvement and so do I - it's a subtle improvement but nevertheless it's improvement and I'm very grateful for that!
Thursday, November 24, 2011 -
I worked 18 hours at work and no doubt I would not have been able to do this just a few months ago without significant discomfort.
Friday, November 25, 2011 - Saturday, November 26, 2011 -
Nothing new to report.
Sunday, November 27, 2011 -
I performed at a concert and afterwards I felt much improvement! I was surprised :)
Monday, November 28, 2011 -
The air is really dry at work - progress is evident and the rumbling in the ear is lessening somewhat.
Tuesday, November 29, 2011 - Saturday, December 3, 2011 -
Nothing new to report today.
Sunday, December 4, 2011 -
Things seemed to have regressed a little bit today - part of the battle still going on in my body to overcome this thing!!! I'm NOT giving up!!!
Monday, December 5, 2011 -
Nothing new to report today.
Tuesday, December 6, 2011 -
Some improvement!!! The biggest thing is now being able to completely close the right eyelid so soap does not get in the eye while taking a shower :) My smile is also almost completely symmetrical :)
Wednesday, December 7, 2011 -
Nothing new to report today.
Thursday, December 8, 2011 -
For the first time in a long time some of the rumbling in the ear is going away intermittently :) I'm continuing to take 8-10 1mg tablets of Methyl Cobalamin B-12 subliminally daily and no doubt it's helping :)
Friday, December 9, 2011 - Sunday, December 18, 2011 -
Nothing new to report.
Monday, December 19, 2011 -
The B-12 Methyl cobalamin is not providing any additional therapeutic effect for me now. I have stopped taking it.
Tuesday, December 20, 2011 - Thursday, January 12, 2012 -
Nothing new to report.
Friday, January 13, 2012 -
After a long period of no improvement my eye is finally tearing less - this could mean it's blinking more often - let's hope so!
Saturday, January 14, 2012 -
It's reverted back a bit.
Slight improvement today - looks like this is a battle going on internally.
Monday, January 16, 2012 - Sunday, February 5, 2012 -
No change in status.
Monday, February 6, 2012 -
For the first time since January 15th my right eye is not as bothersome and is not tearing as much - let's hope this is lasting improvement :)
Tuesday, February 7, 2012 - The eye problems have appeared to have reverted ever so slightly - no other change.
Wednesday, February 8, 2012 - As soon as some additional progress is made it reverts back.
Thursday, February 9, 2012 - Thursday, March 15, 2012
No change in status. At this point I do not think any further improvement will occur and I plan on seeing a specialist who can diagnose the residual effects with my eye and proceed accordingly whether it's therapy or other treatment.
Thursday, August 23, 2012
After many months of no further progression I decided it was time to see a doctor who specializes in Bell's Palsy. I saw a doctor at the Cleveland Clinic for this and the following will be performed over the next month or so:
- Physical therapy to learn how to do exercises for raising the eyelid.
- An EMG test to check the nerves involved.
- An MRI test to rule out any growth in the brain and to look at the nerves involved.
- Consultation with a plastic surgeon for raising the eyelid as ptosis (drooping eyelid) may have developed due to the Bell's Palsy.
Thursday, August 30, 2012
Had my first appointment with the therapist and found out there are some issues with using some facial muscles - she's having me perform four different facial exercises 2-3 times daily, 10 reps each and will return next week for another appointment.
Friday, August 31, 2012
Had the EEG test and unfortunately there is confirmed facial nerve damage. An MRI will be performed on Tuesday, Sept 4th and this should definitively validate the EMG finding with the damaged facial nerve. Once this is done this information will be assessed by the surgeons in the neurology department to determine what surgical options I'll have.
Thursday, September 20, 2012
I'm now devastated as the doctor directing all of these activities informed me the Bell's Palsy is permanent and cannot be repaired - she told me that my only option is face lift surgery to correct the droopiness in my eye and perhaps the corner of my mouth and that I will have to live with this for the rest of my life. I have an appointment with the plastic surgeon tomorrow to discuss cosmetic options.
Friday, September 21, 2012
Consulted with the plastic surgeon and he indicated damage to the facial nerve is either behind the ear in the bony cavity (as previously suspected) or is in the brain. The degree of damage is severe, however the functionality of my facial muscles, though weak, is actually good enough not to warrant cosmetic surgery. Ptosis is present. The course of action here is to make sure there is no damage to the eye by consulting with an ophthalmologist, continuing with the facial exercises and electro stimulation therapy and the plastic surgeon will consult with two other neurological surgeons about the possibility of a muscle/nerve transplant from the inner thigh to the face. If this is performed there will likely be 12 - 18 months of therapy to restore function using the transplanted muscles/nerves.
Tuesday, November 15, 2012
I have been trying hard to fully recover from BP. After consultations with a neurologist, a plastic surgeon, an Ophthalmologist, Physical Therapist, an EMG and MRI test from the Cleveland Clinic nothing has really changed except for the co-pays and co-insurance I now have to pay - Merry Christmas LOL. Emotionally I feel better but the physical problems remain.
Thanks to the superb information found on the Bells Palsy and Facial Paralysis website http://forum.bellspalsy.ws/ I found and was able to see Dr. Barry Schaitkin (pronounced shake - in) at the Univ. of Pittsburgh Shadyside Medical Center in Pittsburgh, PA. It's about a 120 mile drive one-way from my home but it was so worth it to see him and his fine team.
At the appointment, his assistant asked me many questions about my BP and was extremely thorough and knowledgeable. She understood what I was going through and was able to help me articulate this very well.
After she gathered this information Dr. Schaitkin and another doctor visited with me and Dr. Schaitkin determined I am in the 15% category of BP patients who do not fully recover and I have synkinesis (which is incorrect or unusual muscle functioning due to incorrectly wired nerves). In my case eating, seeing at far distances without glasses, looking at computer screens (occurs occasionally when doing that), brushing my teeth or taking a shower all cause the facial muscles around my right eye to clench or tighten up. For this, Dr. Schaitkin is recommending a two step approach:
1. Every three months - one Botox injection in the muscles for the right eye to loosen the tightness as well as one Botox injection in my left check to improve the symmetry of my smile.
2. Work with his PT who is a BP PT specialist to ensure I am performing the correct exercises even though I have worked recently with a PT at the Cleveland Clinic. He indicated the PT treatment I've been receiving may not be correct for my situation so that would have to be evaluated by his PT.
Early on in my BP, between the 2nd - 3rd month on my own initiative and research I took Vitamin B-12 Methyl cobalamin in the sublingual form taking only the quantity recommended on the bottle and he commended me for that and indicated that definitely helped in the recovery I've had so far and he recommends this to his patients.
I asked him about the PONS or electro-stimulation device which was recommended by my PT and he told me that is not effective and is experimental in nature. I was only able to use that device for a 10 day period anyway since my insurer will not pay for it (because it is experimental).
I also asked him about surgical options the other health organization recommended (which was an eyelid lift or a muscle transplant from the inner thigh to the face) and he told me those would be 2nd and 3rd choices if the Botox and PT do not work.
Thursday, February 21, 2013
The day has finally come to begin a new journey - to learn the correct facial exercises and receive Botox injections. The goal here is to reeducate the brain to send signals to facial muscles which will improve my appearance and functionality of muscles in the face which are not affected by the damaged nerve causing tension in certain muscles around the right eye. The theory here is that the Botox will temporarily paralyze these tensioned facial muscles, causing the brain to send signals to other muscles around the area to pick up the slack. After a sufficient amount of time (a year or two) the brain will then subconsciously remember this and eventually the Botox will wear off and the muscles currently tensioned will not longer be tensioned to the extent they are right now. This is a marathon and not a quick fix.
The exercises learned were very simple and are vastly different than what I was previously instructed to do. Essentially it involves stimulating the facial nerves by making a slow sweeping motion across the face with the inside parts of the fingers from the center of the forehead outwards and repeating this for the eyebrows, down along the bridge of the nose and then outwards, along the lips and outwards and along the chin and outwards for four minutes twice daily. Exercises were also provided for trying to open the eyelid more while keeping the face symmetrical without raising the eyebrow and opening the eyelids without raising the eyebrows.
I found out that the muscles for raising the eyelids do not originate from the 7th facial nerve, they originate from the 3rd facial nerve. These tiny muscles are located in the upper part of the eyelid.
I also validated I fall within the 2nd tier of Bells Palsy patients - the 20% or so who have some return of function but complete function and experience synkinesis - where by the nerves are cross-wired - the signals sent by the brain are delivered to the wrong muscles in the face - and this is what is causing the tension around the muscles for my right eye.
After the physical therapy I received four Botox injections, three around the right eye muscle area and one in the left cheek. I was told they would further evaluate me and adjust the amount of Botox given if necessary as they want to err on the side of not injecting enough Botox compared to injecting too much Botox. I was also told it takes 3-5 days for the Botox to work.
Saturday, March 2, 2013
At this point I feel more Botox will be needed as the muscles around the right eye still have a great deal of tension - even though at times this subsides a bit...next appointment is March 21, 2013.
Fast Forward to 2018
My medical insurance changed to having medical care from the Veterans Administration. This greatly reduced my costs by several thousand dollars annually. I now see Dr. Karen Mente at the Louis Stokes Cleveland VA Medical Center for treatment. All the medical records from the treatment from UPMC were forwarded to her. The Medical Botox injections are administered similarly to the treatment provided by Dr. Schatkin. Dr. Mente initially decided a more conservative approach might be better, however, that proved not to be totally effective and so the dosing has been adjusted accordingly similar to the dosing administered by Dr. Schatkin.
I was informed as time goes by the dosing amount may need to be increased and at some point may no longer be effective.
So I continue on this journey and hopefully this information helps someone :)
I will post further as more progress is made.
Here's an extremely helpful website explaining this condition better:
http://bellspalsy.ws/
I am continuing treatment with Dr. Mente. There is some atrophy in the muscles in the right eye due to continued Botox usage, therefore we are going to reduce the frequency of Botox treatments to about every 4 months and see how that goes. I am also receiving a very small amount Botox near the left eye to help make the face more symmetrical.
