Maxine Posted August 18, 2008 Report Share Posted August 18, 2008 On Wednesday I finally get this tooth extracted. As you all know from previous posts we had problems with insurance coverage because I need it doone in a hospital setting due to the cervical/cranial instability, POTS, and sensitivity to local anesthetics. Then time passed by, and the oral surgeon wanted me to see an allergist who was afraid to test me for the local anesthetics because I'm on beta blockers, and this would affect ay measures that might need to be taken for an allergic reaction.So then he felt I should go a University Hospital. and see their oral surgeons. So far I have been ping ponged around 7 times now. first they were going to pull it, then a root canel, then pull it, then root canel-------------- .It's determined the roots would only be saved, as the tooth is necrotic. The NIH doctor from the EDS study was very concerned about the extraction because of my CCI, and didn't want me to have it pulled. With this informatin the oral surgeons started talking about having a halo for the CCI, or do a root canal to avoid pulling the tooth. However after seeing the oral surgeon that does the root canals, she set me up for a consult for an extraction---and it went back and forth until last Friday when it was finally decided they will extract it . The roots are very long, and the extraction may be difficult. This is the same university hospital that i just saw the arrogant and rude neurosurgeon hoping he could offer more insight on the instability, and offer other option other then a halo. He was so dismissive that I was sure the oral surgeons would read his notes, and not worry at all because this NSG said CCI did not exist.Well, when i saw them Friday they still insisted on a halo. My EDS doctor said my hard cervical collar, the dental protocol from EDS/EDNF brochure, and breaking the tooth, and pull smaller pieces would be fine. I also agree. however, the oral surgeon saw an old note from a NSG I saw in 2005 who has since passed away. This NSG was decent and respectful, but not think I had CCI either. This is very common for even some of the best NSGs to not be familiar with this type of CCI related to EDS. It does not always show on a plain x-ray. However the pannus growth on the odontoid bone prooves instability. My orthopedic surgeon confirmed the instability in 2007, and he continues to see me for followups watching for any further neurological issues. I'll see him again soon.Anyway, I don't think the oral surgeon takes me seriously now, but he is still using the collar. He didin't take the EDS brochure I offered, and neither did the resident. There was 5 other residents standing there with him, and they were all looking at me like I was an idiot. They are going to have a resident pull it, but the oral surgeon will assist. This oral surgeon is a jerk, and I'm worried for my well being. Yesterday I went to my Dad's son we could meet my son there with the granddaughters. My Dad's girlfriend has a granddaughter who is 4 1/2 like our first granddaughter, and they called us to see if they might want to get together for a swim in his pool. My husband took her in, as I was not up to it, and it was too hot for me. My son and I went to a local general store that has lots of yummy things to eat, and just about everything else for the home. Anyway, while walking around in the food section picking up things to make a pasta salad crashed. My Blood dumped---or at least that's what it felt like. It felt like a bucket of blood went around a curve, and dumped----then afew heart flip flops. I didn't panic, but knew my time standing was limited. We check out, and went back to Dad's whihc is around the corner. When I got ther it felt like my head was separating from me neck. I had so much pain, and was talking like a drunk. The slurring was mild, but I could not believe what happened. I know I have CCI, but what the heck happend just from walking slowly for a few minutes in a store. I've been struggling with the CCI symptoms for a while, but yesterday my symptoms took a sudden turn for the worse. Last night I couldn't sleep on my side without more slipping from the CCI, and when I layed flat it felt like my head was separating from my neck again. I have also felt a lump in my throat for about a week, and keep getting small electrical shocks in my tongue-----amoung other disturbing symptoms that have been here for a long time. Lately I have had more buzzing, and shakiness in my legs when ever I use the muscles. Even when I left the university hospital I was having trouble with walking, and loosing my balance-----and the whole time I'm thinking how obsurd is this------leaving a NSGs office who completely dimissed the seriousness of this.Well, this molar has been hanging in there long enough, and it's finally coming out, please pray that all goes well. sorry about the long vent, but I had to get it out----AGAIN......... Maxine :0) Quote Link to comment Share on other sites More sharing options...
Ernie Posted August 18, 2008 Report Share Posted August 18, 2008 Hi Maxine,I will pray for you. It is a looooong ordeal. Hang on it is almost over! Quote Link to comment Share on other sites More sharing options...
mom4cem Posted August 18, 2008 Report Share Posted August 18, 2008 I'll be looking forward to your next post that all went well and it's over!Hang in there. I'll be pulling for you...yes pun intended..bad one I know.. lol Quote Link to comment Share on other sites More sharing options...
pat57 Posted August 18, 2008 Report Share Posted August 18, 2008 I'm sure its very irritating and stressful ........good luck......andPlease post ASAP afterward. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted August 18, 2008 Report Share Posted August 18, 2008 You are in my nightly prayers as well. It is not up to him to diagnose you, just to TREAT you for what others have diagnosed! Just hold together a little longer, I know, it feels like pulling teeth (yup, all that was intended. ) Have someone post for you if you are too groggy to do it yourself...let us know!Jennifer Quote Link to comment Share on other sites More sharing options...
Maxine Posted August 19, 2008 Author Report Share Posted August 19, 2008 Thanks for your kind words, and support ------ I'm praying that I don't get a reaction to the carbocaine, my neck/CCI issues will be OK, and lastly----not too much pain. I say pain last, because I fear this the least. Of course I may change my mind, as the roots are deep, and hopefully I won't have a difficult recovery. I have a bridal shower to work on for this Sunday---- My son is getting married in Maryland. We are having a casual couple's shower at my Dad's------he's got a nice built in pool for anyone who wants to swim. My husband, and his sisters are doing the majority of the work---I feel bad, and wish I could do more.Thanks for your prayers---- Maxine :0) Quote Link to comment Share on other sites More sharing options...
ironsc Posted August 19, 2008 Report Share Posted August 19, 2008 Maxine,You have all my good thoughts and energy for your coming ordeal. I wish you the best, and a speedy recovery!Hugs,Cam Quote Link to comment Share on other sites More sharing options...
summer Posted August 19, 2008 Report Share Posted August 19, 2008 Maxine,I will pray for you too - specifically about the 3 things you mentioned. Summer Quote Link to comment Share on other sites More sharing options...
goldicedance Posted August 19, 2008 Report Share Posted August 19, 2008 Gollyl Maxine....I am hoping that your long awaited extraction will go smoothly. Ill be thinking of you!Lois Quote Link to comment Share on other sites More sharing options...
juliegee Posted August 19, 2008 Report Share Posted August 19, 2008 Maxine,I'm so sorry for the lack of support you are receiving. I had a few words that I thought might offer some comfort. I wore braces as an adult and needed a molar extracted prior to putting them on. I don't have many of your issues, different ones, but I was shocked at how easily the procedure went. I wasn't all of the way anesthesized and one little tug, there she was- long roots and all. Very painless & an imperceptible tug. There is no way it will impact your cranial instability. They use a huge tool & barely pull. Your worry about an allergic reaction is familiar to me. Can you premedicate with benadryl and/or prednisone?If your doctors were open to learning about your condition (which they should be!), you would feel so much better. Just know that every single person in that operating room will be fighting to keep you comfortable and safe on that day. Rest easily until then and put this in God's hands. Big Hugs-Julie Quote Link to comment Share on other sites More sharing options...
momofsara Posted August 19, 2008 Report Share Posted August 19, 2008 Maxine-- Hoping all goes well with your offending molar. I know its been a long, discouraging road, but maybe you are nearing a successful conclusion to your journey. I will be keeping you in my prayers and holding a positive thought for you. BTW, I can identify with your neck problems, even though its not exactly the same, Sara has cervical dystonia as a result of the surgery she had for Chiari Malformation. Her dentist always has been very cautious about that when shes in the chair. Best wishes and keep us posted on your recovery, we will all be anxiously waiting to hear your outcome(pun intended)... Susan Quote Link to comment Share on other sites More sharing options...
Sunfish Posted August 20, 2008 Report Share Posted August 20, 2008 good luck tomorrow!! i'll be thinking of & praying for you... melissa Quote Link to comment Share on other sites More sharing options...
Maxine Posted August 20, 2008 Author Report Share Posted August 20, 2008 Thank you all so much--- Julie, I think my problem with local anesthetics is that I absorb them either too quickly, or too much due to the poor vascular tone from the EDS. At least it sounds logical, and my EDS doc thinks that could be the problem. However, I did have a lot of it injected into me in 2005 to put this cardiac loop recorder in my chest. There was no recovery----just get off the bed and go. We didn't have enough time to see how my body would react from the minor surgical procedure, or the local anesthetic. When I went to the cafeteria to get something to eat I crashed.My body went numb, tachy, tremors, nausea ect. It was pretty bad---- I'm scared, but I'm getting it done.I told the resident oral surgeon that called me today that I felt the oral surgeon I saw last Friday thought I was being overly dramatic because he seemed like he was losing his patience with me. He apologized, and said they were there to handle things like this all the time, and that my problems need to be taken seriously. He said he would look at my chart, and make sure things we set up properly for me, and call me back. He was on call, and didn't have to do that----but he did.I still will have the doctor I saw Friday working with the resident who is pulling my tooth, and I'm not really happy about that.Thanks again for all your well wishes, good thoughts, and prayers. It helps to know I have your support and understanding.Maxine :0) Quote Link to comment Share on other sites More sharing options...
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