Hi Guys,
This week I finally had my long awaited appointment with an ENT. As you may already know, I unfortunately have been struggling with on going health issues relating to my teeth, jaw, nose, ears... basically everything from the neck up seems to be giving me some form of pain and discomfort every day. I have been having difficulties breathing through my nose and am suffering from a blocked ear (possibly Eustachian Tube dysfunction). At the ENT I filled out a routine patient form which required me to write down my previous surgeries. When I met the ENT she inquired about my Jaw surgery and asked who my surgeon was. When I told her who my surgeon was she paused for a moment and than excused herself from the room. She came back in shortly afterwards and proceeded to ask me If I saw my Surgeon often. I said I did and mentioned my upcoming appointment with him in 2 weeks. She paused again and asked If anyone had been in contact with me form his office. At this point, I really had no idea what she was about to say next. She went on to say "I'm really sorry but I have some sad news to tell you".... I was not expecting this news at all!! My surgeon passed away suddenly on April 4th. She didn't mention the details of how he died but she thought seeing as I was a patient of his that I needed to know. They had worked at the same hospital for many years so she knew him quite well.
You can imagine I was pretty shocked to hear this from her. He was a professor and very well regarded surgeon internationally and within Australia, especially for his work at the children's hospital here in Sydney. He was a softly spoken, caring man and even though I have had some complications resulting from my Surgery, I am still extremely thankful for his expertise and professionalism over the past 2 years. I am assuming I will now be in the care of his partner who also assisted during my surgery.
Moving on from hearing the sad news, the ENT performed a few routine procedures on me including a Nasendoscopy. She could clearly see enlarged adenoids at the back of my nose which are obstructing the air flow. Apparently adenoids are meant to shrink and disappear when you reach the age of 8 or children who still have them get them surgically removed along with their tonsils. Enlarged Adenoids can easily cause ear infections along with various other complications. I obviously had no idea I still had mine. She seemed surprised to see them there. The ENT also mentioned that I still have a slightly deviated septum which can be corrected easily. I need to have a routine hearing test done first before I can proceed with the surgery and will also have to go on her waiting list. I am hoping to have it done mid year.
The other complications that are occurring include my TMJ disorder which I am working on with the help of Physiotherapy and my on- going battle with numbness which I don't really know what to do about.
I have a significant patch of numbness which begins on the corner of my bottom lip, part of my chin and extends into most of my right cheek area. My back molars and gums on that side also have a really heavy numb feeling. It it really frustrating because the more I talk the more aware I become of how stiff, tight and numb that area is. It is their 24/7 and I can't seem to get any relief from it. If it was pain I would take something for it but the pain is the numbness which is annoying as HELL. Because of the numbness my cheek constantly feels fat, puffy and inflamed. It really does feel like someone has injected a wad of tissue into that side of my face and it's stuck there and I feel it when I talk or attempt to move the muscles in that area of my face.
I would consider anything to get some normality back to that area!!!! I know this is extreme but sometimes It feels like I've had a stroke on that side or possibly I have massive scar tissue buildup which is causing the heavy tight feeling. I wish I could just get my head around what is actually happening or what I could do to improve it. I've been really emotional about it for many months now and it's really starting to impact on my relationships with my friends and family. I know my mum is getting tired of me talking about it but it's a constant daily reality for me so of cause it's upsetting and frustrating.
Maybe I should see a Neurologist and see If there are any tests that will stimulate the nerves to determine the amount of damage. I just feel somewhat helpless at the moment. Can anybody relate to what I am experiencing or know of anything I can do about it?!?!?!?! I would love any feedback or suggestions :-)
I really hope everyone else is travelling a lot more smoother than I am.
Hi Rhianna,
ReplyDeleteI'm so sorry to hear about your surgeon's passing. That is very sad news. May he rest in peace.
I wanted to share, though I have no solution either, but I am experiencing the same type of numbness that you describe on my chin, lower lip, and the left side of my face and cheek area. It is exactly like you describe it. I've tried to keep telling myself that it's the same numbness that others talk about that's "not a big deal" but maybe it is different? It makes it hard for me to smile properly and to talk and it feels like something is stuck in there. It feels very tight when I press my tongue against my cheek, almost like something is tied together in a knot. According to my surgeon, I'm not supposed to have ANY numbness because "no nerves were severed" and the type of surgery he did (IVRO instead of BSSO) has much less chance of nerve damage. Basically, it is like he's saying "I did nothing wrong so that means there is nothing wrong." I have not seen an ENT, but maybe I should. Even though my airway increased I actually have more trouble breathing now because my sinus cavity on the left feels constantly blocked and inflamed and my nose is more blocked too.
I'm sorry I have no solution for you; nothing I've done has made it get better and I really don't want to go the rest of my life like this. Please keep us posted if you find anything that helps! This road is not easy. (For me, I relapsed AGAIN and need a 3rd surgery.) You'll be in my thoughts and prayers!
xo
Ellie
Hi Ellie. I can't believe you are experiencing this dreaded numbness too! It really is horrible and definitely does feel like my cheek is tied together in a know like you describe. I don't know how much of what I am feeling is due to internal scar tissue. My surgeon also told me that "no nerves were damaged" and that it will just take time for everything to feel normal. My check does feel thicker and I try to massage it to get some relief but nothing seems to change. Wow, you are so brave and have been through so much. Wishing you all the best with your third surgery.
DeleteHi there,
ReplyDeleteSorry to hear the news about your surgeon!
I wanted to say that I understand how you feel emotionally, and how it can affect relationships. I don't have any numbness from surgery so I can't give any advice about that (although I've heard vitamin B is supposed to help tremendously with nerve damage) but after I got my braces off in January I've been having a lot of pain in my jaw joints and jaw muscles, and my bite has shifted and opened up again. This has led to pain and sensitivity in my molars since they're now hitting awkwardly together when I talk and chew. Both my surgeon and orthodontist are baffled by the changes because it seems to be a tooth movement issue rather than a surgical relapse issue, even though I wear my retainer faithfully and it still fits. I will most likely need braces again, but hopefully no more surgery. I've been really depressed about the whole situation, not because I need more treatment but because no one understands what's going on and I'm afraid that my bite will never truly feel comfortable or stable. I feel like my joints are constantly battling with my teeth and muscles to find a comfortable position, and it has been like this to some degree since surgery. I am also still struggling to accept my appearance and this makes me feel like such a shallow and ungrateful person. I feel like no one really understands how frustrating and frightening this whole situation is. I know my parents are really sick of me moping around the house, and I'm having a hard time getting any joy out of fun activities or being with friends because this unresolved jaw/teeth issue is always on my mind. Plus, talking and eating both eventually lead to pain and discomfort so I've been tending to avoid them altogether. Who wants to hang out with someone who's crabby, depressed, focussed on their own problems, and doesn't want to talk or eat? I wouldn't want to! Haha.
I'm not sure whether I have any good advice since I'm battling with these emotions myself at the moment, but I think it's good to stay actively involved in seeking treatment and to try to figure out what's going on. Don't lose hope! I'm sure there are others struggling with similar numbness issues and there must be something that can be done about it. In my case I feel better after meeting with my surgeon or orthodontist and getting some perspective on the situation (it's not life and death, though my dark thoughts often insist otherwise) and knowing that they won't abandon me. Also, keeping a positive attitude has been proven to help the body with healing and overall function, though this is such a tough thing to do (I'm failing miserably at it).
I'll be keeping you in my prayers! Best wishes for your upcoming surgery.
Lindsay
Hi Lindsay. Thank you so much for your reply. It seems we are experiencing very similar emotions and worries. I am so sorry to hear that are also experiencing pain and changes in your teeth/bite.
DeleteI too am finding it very hard to keep a positive attitude through all this. You really summed it up perfectly when you mentioned, "Who wants to hang out with someone who's crabby, depressed, focused on their own problems, and doesn't want to talk or eat?" I have thought the same things many times. I have become so fixated on my own concerns and struggles that it really is taking a toll on my social interaction with many that I love. I am frustrated, angry, scared, anxious, depressed and generally not in a great place mentally at the moment. Thanks for you prayers and vise versa! Keep in touch x
I am so sorry to hear about your surgeon.
ReplyDeleteThat is very shocking.
I can relate to you with all the ENT issues. I was suppose to have surgery to remove my tonsils and adnoids prior to jaw surgery but backed out. It's probably something I will revisit in the future.
I have a lot of numbness as well.
My chin and lower lip have remained consistently numb since surgery. I am looking into doing acupuncture to help resolve this issue, I've heard that it works well.
My surgeon is constantly telling me that I need to wake my nerves up, eat lots of spicy and hot foods to try to stimulate them and move my lips around a lot to loosen scar tissue.
I'll let you know if any of this works for me and if the feeling comes back at all.
I really hope you get all these issues resolved. That's what scares me about the open bite. I've been in contact with a few speech therapists for tongue thrusting. Just trying to decide which one is most experienced in this field and will serve my needs best.
Keep us posted on how everything goes
I'm so sorry to read this post and to read the comments. We come out of this with goals of improvement and when things take a turn for the worse it is beyond discouraging.
ReplyDeleteRhianna, the news about your surgeon is so sad. I hope your ENT and physiotherapy helps. I also wanted to echo Terra's recommendation for acupuncture. I haven't tried it, but I've only heard good things. I know it won't solve your issues, but maybe it can bring some relief.
Ellie, I am so sorry to hear about your numbness and ESPECIALLY about your relapse. I can't imagine doing this twice, let alone three times. Is it the same issue you had the first relapse? And when are you going in? My thoughts are with you!