We saw my NS today, 4hrs round trip & I’m tuckered out! The Cine MRI shows the pocket created & it’s said that my surgery is a success. So, because I’m experiencing facial numbness, difficulty breathing, extreme pressure in my head, blurred vision, tingling in my extremities, weakness in my right hand, and tinnitus, the Dr is having me se a NL on his team, which means quite a wait list according to him. I just don’t know what to do. Every test up until now showed something that lead to an action. This time - nothing. But I feel something is wrong. Going wrong. Like there’s this bottle neck of pressure, for he’s, then finally when there’s so much, it forces it’s way through. But the Dr says it’s all good, no blockage. I’ve been to the ER. It’s getting worse. The last two months have been progressively getting worse. I’m scared. I don’t know what to do.
Hey Seabrooks, I really hate that for you! It scares us to death. My husband was Dxd in Feb. 2012 & MRI showed a 10mm herniation & he has the horrible headaches, ringing in ears, sensitivity to light & sound, depth perception problems , brain fog, face swelling & a slew of other symptoms. His CINE flow MRI is scheduled for June 12th but the NS sd he’s pretty sure how it will turn out. Then we’re going to get a second opinion by Dr Hampf but all these postings about symptoms coming back or worse than ever is making him think that he doesn’t even want the surgery. If his headache get to a 10, we just go to ER & get 2-3 bags of IV fluid & it gets better. You do have some symptoms that he doesn’t have & I thought he had them all. I would stay on the Drs to figure your problems out & I will pray for your improvement. I would be very scared to start running again! Maybe a fast pace walk? I have heard that decompression surgery is a treatment & not a cure but dad gum! That is crazy! It is good that your CINE MRI was good but they have to fond what’s causing your symptoms now. Haven’t heard of the trouble breathing. It would be hard to tell with my husband cause he’s already on Cpap & smokes too much. I hope they figure it out soon. If wait is too long on NL , I’d just find another reputable NL that could take you sooner. Maybe you could get some oxygen for shortness of breath activities til they figure u out. Please keep us updated.
Tnx For the support Jeri! My hubby & I have decided that we will get a second opinion. My family & I really thought going to Stanford meant the best possible care in our area, but my NS is not a Chiari Specialist. I wouldn’t lose faith in your husband having the surgery, there are so many successful stories for every one one unsuccessful. And a lot of times people move on with their lives at that point, never to look back. You’re sweet to share a kind word & advise. I was freaking out! But feel better with a plan. Please let me know how you & your husband are doing & what you decide if you like?
Jeri said:
Hey Seabrooks, I really hate that for you! It scares us to death. My husband was Dxd in Feb. 2012 & MRI showed a 10mm herniation & he has the horrible headaches, ringing in ears, sensitivity to light & sound, depth perception problems , brain fog, face swelling & a slew of other symptoms. His CINE flow MRI is scheduled for June 12th but the NS sd he’s pretty sure how it will turn out. Then we’re going to get a second opinion by Dr Hampf but all these postings about symptoms coming back or worse than ever is making him think that he doesn’t even want the surgery. If his headache get to a 10, we just go to ER & get 2-3 bags of IV fluid & it gets better. You do have some symptoms that he doesn’t have & I thought he had them all. I would stay on the Drs to figure your problems out & I will pray for your improvement. I would be very scared to start running again! Maybe a fast pace walk? I have heard that decompression surgery is a treatment & not a cure but dad gum! That is crazy! It is good that your CINE MRI was good but they have to fond what’s causing your symptoms now. Haven’t heard of the trouble breathing. It would be hard to tell with my husband cause he’s already on Cpap & smokes too much. I hope they figure it out soon. If wait is too long on NL , I’d just find another reputable NL that could take you sooner. Maybe you could get some oxygen for shortness of breath activities til they figure u out. Please keep us updated.
Hi Poptart! Tnx, I’m trying to stay away from the ER, simply from racking up the medical bills! It was gr8 for a few mos after surgery, then something chngd. Idk, blame it on the fall I had after mopping…whatever it was, I need help. My mother-in-law is helping me get a 2nd opinion w/another NS. I did get an appt w/the NL scheduled, in the mean time. It was all peaches & gravy for a while. Until then… Tnx for your advise! I’m not sure of what I’m doing right now, but I feel better that you said the same about keeping the NL appt for now…
Poptart said:
I would call my surgeon back and ask him to get me in immediately with the neurologist that is in his practice, and if not then to get me in immediately somewhere else. Under the circumstances, this is a very reasonable request. They probably eat lunch together or play golf together so surely he can get him to work you in. In the event that he could not get me in immediately then I would request that he continue to treat me as his patient and work to resolve my symptoms until he did get me in. Also, which neurologist referred you to your surgeon? You should be able to get back into the referring neurologist without a wait if you choose to go back to your referring neurologist. Also in the event that your surgeon is totally uncooperative and the neurologist in his practice can not get you in then keep the appointment( don’t cancel it at this time). However, try to find your own competent neurologist to get into to see sooner. In the event that you do get into a new neurologist and it turns out that you might need a repeat surgical procedure done then I would seriously consider as to whether or not I wanted that neurosurgeon to work on me again. It may take longer sometimes to get into a neurologist when you are a new patient. However, it is always be important for you to always be under the care of a good neurologist. Things like this unfortunately do happen after surgery. After you post op period is over then sometimes (or often) the surgeon will transfer back down for your routine care. This is the reason that I try to tell everyone that they need to have a neurologist and not just depend on a neurosurgeon to fix you. A neurosurgeon will only work on you if he thinks that you need surgery. It is entirely possible to feel like total crud and not need surgery again. You more than like only go back to surgery if you have something wrong or something needs to be fixed. You can have a ton of stuff wrong with and be treated by the neurologist if the treatments are not surgery. Also, if you get really sick and think that something is wrong and no one will see you, then I would go to the Er again. However, nerve damage or symptoms that you experienced before the decompession my not resolve after the surgery if they resulted from nerve damage to the central nervous system. Good luck
Hey Poptart! To the NS credit, he got me in with the NL sooner than he gave an expectation for. But I left the appt and up till then dealing with his staff feeling like I had bn patted on the head & sent on my way. I know my body, when something has gone wrong. That’s what prompted me to get help with this in the first place. When I left my appt, I fell apart. It took some time to pull it together, accept it. Then start a new action plan to get help. I love having this support group, I may not have found my resolve so quickly. I’ll take your advise & keep the NL appt. I’m new to the approach of medicine. I don’t even stick very well to muti vitamins. I’m pretty much in deep when I give in & take a pain pill. I’m hesitant cause a family member close to me has an addiction issue w/pain meds & addiction runs in my family.
Poptart said:
Sometimes you gotta learn how to play the doctors game. If he tells you that he can’t get you in with a neurologist in his practice. Try politely telling him that if he is a neurosurgeon in a practice with a patient in your shape that can not get a sooner appointment with another doctor in the same practice then what are you supposed to think about their practice’s patient care. Also from time to time, there will things that occur like injuries that will make you feel like you have broken your entire body and messed up everything that has been fixed. While this is entirely possibly, it is also possible to feel totally awful and just not have a lot of the kinks worked out. I can attest to the fact that because you feel like you are dying does not necessarily mean that you are. I have also learned that how I feel does not really have a lot of impact on how my doctors feel. They can feel totally fine when I am doing lousy. I have a joke about my doctors which I don’t know if anyone will think is funny. I’m not sure if my doctors think it is funny either but oh well. I write poetry and this rhymes, so I like it. I always wonder if they are going to heal me or kill me. I’m sure no one else found that funny but at times I just have had to laugh at some of the stuff that I have endured. I can laugh about stuff now because I’m mostly okay. After you get checked by a doctor to make sure that you are actually okay which should happen really soon. We all know that your neurosurgeon can do a lot better than what he offered. Then you can work on ironing out the kinks. The tingling and numbness may not subside totally but there are medicines what can be given that make that not really a problem. You may have to get your eyes checked, you may have had some change to your vision since your surgery. Tinnitus can be from several reasons, one of which is medications. Pressure can be from swelling that may not need more surgical intervention exactly but may need something else. By now, I’m sure that you have figured out that “fixed” to a neurosurgeon is in no way what you thought the word meant. Some things may not resolve but actually some things do eventually resolve. The important thing is to always check and make sure that you are okay. Then start looking at everything that you do from diet, exercise, caffeine, meds, etc. After you know that you are not critical then you start worrying about the residual. I’m been doing this a long time but every once in awhile, I have to cruise down to the ER to make sure that I’m not in any dire condition. Things will get better. It is perfectly okay to look at your neurosurgeon funny and nicely tell him that shoving you that far out does not say much for his practice, and that surely he can do better than that. What are you supposed to tell folks around town when they ask you for a recommendation on him. Good luck and get in pretty soon. Go to youtube and watch stronger by Kelly Clarkson a performed by the Seattle Childrens hospital, it will kick you in the fanny and energize you to not feel so deflated. Perk up because it can be really bad right now and turn around and get totally okay. We all strive to be a really good patient which is what we should be but you have to also sometimes tell your docs that what they are doing is just not really okay. Good luck. I’m pulling for you. Whatever you do, do not accept that this is how you are going to be forever but that just probably is not so. If your surgery was a success then you may just not be where you can be…yet.