Hey, I am 4 1/2 months post op from a decompression. I have good and bad days. I’ve noticed over the past two weeks that my head and neck pain, arm tingling, nystagmus, balance, etc… have all been getting worse again. I have seen I am sneezing a lot due to allergies and wondered if anyone else has more difficulties during allergy season and how to help. It gets to the point where the back of my head and neck feel like I’ve been hit with a 2x4, feel tight and 5x bigger than normal, even though that isnt the case. Like when our lips feel swollen from the dentist even though their not. I am seeing my PCP on Monday and have a follow up appt with the NS on Thursday. If I know what to ask for or get ideas. I am also going to ask about Ehlers Danlos and getting tested for it. Does anyone have suggestions for how to broach that subject? Thank you so much! I don’t come on here often because it always seems like someone is going through what I need to hear but I appreciate all the advice, wisdom and even the complaints because they make it easier to remember that I’m not alone either!
It seems that recovery can just be up and down,it’s been almost 10 months and it still happens to me too,just headaches,dizzy,still some pain.hopefully these symptoms will get better with time,it can take a year for things to settle down.I am glad you have an appointment so you can ask questions hope the Dr.can help you get answers.
I haven’t had decompression yet… And sneezing is the largest contributor to my head issues… Ill have to literally lay down for 30 min till my head relaxes… I was bummed to read your post cause my hopes are high that ill get relief one of these days lol
Sneezing is awful when you have Chiari. I agree with Jo ice can do wonders for some people. I resond better to heat. I use a microwavable flax seed pack that I would like to have a suit made out of. LOL It just takes trila and error to find out what works. Also Arnica cream can help with sore neck and face muscles.
As far as allergies and sneezing my family uses tinctures from Bioallers that really work. Thay make all kinds so if you know what you are allergic to it's easy. We have several for different times of the year. If you dont know one indicator is what ever is putting pollen into the air at any given time. You can Google that. My husband has a huge issue with dust and the dust one is great for that.
They are sold at alot of drug stores now and at almost all health food stores as well as the internet. If you have a Whole Foods near you they have them and they allow you to try things and return them for a refund if they dont help.
Allergies or sinus infections do make CM symptoms worse.Anything that influences the fluid levels in our heads throw things off. I read a great article Ray D'Alonzo wrote about CM and post op symptoms I was going to share and just remembered with your post. It has some great information. He wrote the book Contents under Pressure. and is a Chiarian.
Last year allergies about killed me with my CM. l do hope you feel better. I have an adult allergy specialist and gone through multiple skin & blood tests. Then allergy shots and every allergy medication to try & help. What helps me most is Astyline nasal spray. It is use it for seasonal allergies & environmental irritants....like perfume or chemical sensitivities...smells drive me crazy & I always thought it was allergies but no I was told they are "environmental irritants" Astyline opens up your sinuses & ears literally and is incredible. It is an antihistamine and does not work like Afrin which is a decongestant or sinus steroid sprays, but helps open everything up and stop the histamines. I never recommend anything I am not incredibly pleased with. It's worth trying or at least asking your Dr. about.
Dr.Henderson, neurosurgeon in MD is an expert.in EDS. He.diagnosed.my.daughter.on our first office.visit…And we.had.been.to.3.neuros.before him and they all.failed.to.diagnose it. one.was one.of.the.top.surgeons.for.chiari.who did.her.decpression.surgery. i dont.mess.around.with.surgeons anymore. good.luck
Thanks everybody! I will look into every idea offered! I have used arnica gel and cold packs. Just aren’t working right now. I am no sleeping well because the head and neck pain are so bad that the pressure of laying my head down hurts incredibly badly. If is sit up for too long, I get lower back pain or body parts go numb. Now I also am get shooting pain through my right eye, too. I had a string of very good days prior to this, so I know the good will come back. I think sometimes he good days can make the harder ones a bit of a shock at first. I have seven kids, with five starting public school for the first time in years. Trying to get all the required summer packets completed is not going well, so my stress level is high and that is another thing compounding every symptom. Please know hat everybody is different and I in no way wants to discourage anyone’s progress or pre-op hopes. Im grateful for the surgery for I believe it saved my life. This is just a rough patch and I needed some ideas/perspectives from people who understand. Thank you everybody! I hadnt really thought about allergy testing but that’d probably be a great idea. I grew up being told to “suck everything up”, so it doesn’t even occur to me to do what normal people do everyday - go talk to the doctor! My last MRI two months ago said my sinuses were blocked, I just haven’t gotten around to getting to the doctor. I was doing well then and I guess I was one of the memories my mind didn’t hang on to! Thanks again for all the ideas! You are all a blessing to me!
Randi
You poor thing seven kids and five starting public school this year ! Eeek no wonder your head is pounding with pressure and bad headaches, I am raising just two granddaughters with medical issues, the little one ( 9 yrs) has Chiari 1 Malformation, Syringomyelia, Severe Scoliosis, wears a Boston Brace, and has ADHD. The oldest one (12) has ADHD, CAP,Learning Disabilties, and is emotional at a age range of about a 6 or 7 yr. old. But I know that you have me beat, all of that and Chiari as well how have you done it? But really I know the kids are not the reason for your pain and other symptoms ( well maybe alittle right ) but I did watch a video the other night ( Northwest Regional Chapter Chiari Symposium and a Doctor Richard Ellenbogen was answering questions from Patients that have Chiari and Syringomyelia, as well as other doctors on other videos that spoke of Tethered Cord and other issues, it might be beneficial to you......Just a thought he addressed so many of my feelings and concerns ( of course not me but the other patients questions ) but each one that was asked and than answered by him helped me so much in putting things into prospective. Good Luck and Prayers ( Enjoy the new school year ) :) P.S. He did say also that when you sneeze, strain, cough, or strain, you briefly stop the cerebral flow which can effectively cause extreme discomfort to the patient. I don't know whether this help ( also allergys are running rampant all over the United States this year as well ).
For starters, i am getting a few ideas to try for myself. I have suffered from allergies since i was little. Second, being that i have not had decompression surgery, i can't relate too well with that. However, i DO have year long allergies and it is just brutal when i have a sneezing fit. Lately i have been having problems finding something to help with my symptoms as nothing seems to be working. I would suggest the ice and arnica gel but you said they haven't helped lately. My thoughts are heading towards something else. Maybe a pinched nerve? When i had my back injury a couple years ago, i got such huge headaches when i sneezed that i had to literally stop, hold my head, and sometimes sit down til it passed. i found out earlier this year that i had a pinched nerve when they were doing my mri last year (doctor didn't tell me until i started having major problems with soreness this spring). I had physical therapy for it and now its been ok but maybe you should see about that being a possibility. Nothing else seemed to help my pain until i went to therapy. Also, how has the weather been where you live? I have noticed that since having my back injury, my body really feels the weather changes and differing barometric changes a whole lot more. My best friend is a walking barometer thanks to her TBI and i start feeling it about a day after she does. You could be starting to do the same. But definitely talk to both doctors about it. You are mentioning most of the symptoms i had when i first found out about my Chiari so chances are likely that one or both of them may have some ideas. but make sure you tell them everything you have tried and what does or does not work! good luck! If all else fails, maybe see about getting a deep tissue massage, or a regular massage to help with the muscles. they seem to help me sometimes when its really bad.
I have allergies and live in california. After surgery i didnt sneeze for over a month. A very weird happening. I thought and hoped i had been cured of them. My sneezing came back after some time. Still sneeze over and over til i cant breathe. I forget to take any of my meds.
Thanks. I feel like a doll attatched with rubber bands, so when I sneeze, I feel like my body parts briefly explode apart and then spring back together. I’ve noted that my lower back and neck are in more pain than normal. I do hold my head in one hand and my neck in another, or else it feels like my head with get blown off my shoulders. Kinda funny to watch me, I’m sure, but it helps. I am a walking barometer, so when I remember that, it helps me understand my pain responses. The allergy thing is new, though, so I wondered about how everyone else handles it.
As I’m sitting here, I’m reminded of another question. When my kids lean on me, it is really painful. Painful like when someone uses boney elbows to push up on you to get up, but it isnt just boney parts that cause pain. I just wonder. It has gotten worse every year, so maybe it is just momness. My legs hurt and ache pretty constantly, even when I was younger, thinner and healthier.
Thanks again.
Randi
Wow the touching and sensation thing is a hugh struggle for me. It started with cold water like a pool or lake. I wasnt comfy if it was under 76’f in the pool. And now its touch even if people around me get excited it causes me pain. Been studying small bit with a dowest monk to see if i can control some of my degenerative nerve issues. Spinal issues are a small but big problem for me. Cracked a high vertibre and my chest plate. A tattoo is the only pain ive experienced simalar to the pain i have everyday. . No more tattoos either, i have realized lately
Its bizzare how many symptoms we all share. The blocked sinus, head flooding when i lay. I feel floaty in my head. I live on the beach too. So i notice the pressure from the water. Should i move (lol) im younger with no children. I really wish i could help you deal with your symptoms. Im no good at paper work. But, ACUPUNCTURE! I have to use this treatment on my neck skull and back. I am so much better AFTER. I was nerves at first, its not bad, painful. In fact. When the right area gets the right treatment it feels GREAT. Everyone is different and trained different, so trying more than one is the best idea. You will know when ONE person dies better treatments. Its very relieving, and helps treat stress as well. The oriental med dr i go to has also helped me with diet issues. Like no salad. Its raw. Kinda hard on the body. Like eating rocks. Everything cooked. No sugar, no alchol ( cause its sugar too). I couldnt say enough of how much ive improved in 4 months of acupoke.
mommarudy said:
Thanks everybody! I will look into every idea offered! I have used arnica gel and cold packs. Just aren’t working right now. I am no sleeping well because the head and neck pain are so bad that the pressure of laying my head down hurts incredibly badly. If is sit up for too long, I get lower back pain or body parts go numb. Now I also am get shooting pain through my right eye, too. I had a string of very good days prior to this, so I know the good will come back. I think sometimes he good days can make the harder ones a bit of a shock at first. I have seven kids, with five starting public school for the first time in years. Trying to get all the required summer packets completed is not going well, so my stress level is high and that is another thing compounding every symptom. Please know hat everybody is different and I in no way wants to discourage anyone’s progress or pre-op hopes. Im grateful for the surgery for I believe it saved my life. This is just a rough patch and I needed some ideas/perspectives from people who understand. Thank you everybody! I hadnt really thought about allergy testing but that’d probably be a great idea. I grew up being told to “suck everything up”, so it doesn’t even occur to me to do what normal people do everyday - go talk to the doctor! My last MRI two months ago said my sinuses were blocked, I just haven’t gotten around to getting to the doctor. I was doing well then and I guess I was one of the memories my mind didn’t hang on to! Thanks again for all the ideas! You are all a blessing to me! Randi
I’m wondering if anyone has had the same experience as myself,as soon as I woke up from surgery there was a big change in the pressure in my face and everything behind it.It took me a long time to get used to,just open space that had never been there before,it was amazing.Is this a normal change?I would like to hear if others have had this.
God bless you....not for sneezing but for having 7 kids and being able to speak and write coherently. I dont know how you do it. The homeopathic tinctures work really well and immediately if you know what you are allergic to. Stress doesn't help us either. Vitamin D, C and B help with immunity and may help you. They really help me. If the arnica cream isn't helping you might wnat to try the other cream I swear by (it has arnica in it) Hylands Leg Cramp Ointment. I wrote a post about it that I will bump to the top of the Discussion list. It is my go to muscle pain cream. I have tried everything over the past 17 years and it is one of the things I couldn't do with out. I hope you are doing better. you got some great advice and feedback. We are all here for you.
Wendy
mommarudy said:
Thanks everybody! I will look into every idea offered! I have used arnica gel and cold packs. Just aren't working right now. I am no sleeping well because the head and neck pain are so bad that the pressure of laying my head down hurts incredibly badly. If is sit up for too long, I get lower back pain or body parts go numb. Now I also am get shooting pain through my right eye, too. I had a string of very good days prior to this, so I know the good will come back. I think sometimes he good days can make the harder ones a bit of a shock at first. I have seven kids, with five starting public school for the first time in years. Trying to get all the required summer packets completed is not going well, so my stress level is high and that is another thing compounding every symptom. Please know hat everybody is different and I in no way wants to discourage anyone's progress or pre-op hopes. Im grateful for the surgery for I believe it saved my life. This is just a rough patch and I needed some ideas/perspectives from people who understand. Thank you everybody! I hadnt really thought about allergy testing but that'd probably be a great idea. I grew up being told to "suck everything up", so it doesn't even occur to me to do what normal people do everyday - go talk to the doctor! My last MRI two months ago said my sinuses were blocked, I just haven't gotten around to getting to the doctor. I was doing well then and I guess I was one of the memories my mind didn't hang on to! Thanks again for all the ideas! You are all a blessing to me! Randi
I really want your life to improve. My mom had suffered a lot when i was young. ( from the same issues i have now it seems) i would like to tell you about acupuncture. Cause it treats the location we are having trouble in ( ociput and neck. IF you had surgery you also have scar tissue. Which is numming and painful.) I started Acupuncture in april. By august I was well enough to go camping. I shouldnt have but it was very mentally benificial, and painful. I had two acupuncture sessions while camping. The big part tho. I have feeling in back of neck now sometimes. It even itches. Deep needles in that spot will relieve eye pain as well. All i worry about with you and acupuncture is FINDING the right person. ( it helps to have talent doing it)PLEASE try it more than once. And be vocal about our nerve problems or deep pain so they know where to treat best. I can educate you a little on how it benifits me, but ill save it. I may make acupuncture a full discussion. I went yesterday. Good luck.
Kyle said:
Its bizzare how many symptoms we all share. The blocked sinus, head flooding when i lay. I feel floaty in my head. I live on the beach too. So i notice the pressure from the water. Should i move (lol) im younger with no children. I really wish i could help you deal with your symptoms. Im no good at paper work. But, ACUPUNCTURE! I have to use this treatment on my neck skull and back. I am so much better AFTER. I was nerves at first, its not bad, painful. In fact. When the right area gets the right treatment it feels GREAT. Everyone is different and trained different, so trying more than one is the best idea. You will know when ONE person dies better treatments. Its very relieving, and helps treat stress as well. The oriental med dr i go to has also helped me with diet issues. Like no salad. Its raw. Kinda hard on the body. Like eating rocks. Everything cooked. No sugar, no alchol ( cause its sugar too). I couldnt say enough of how much ive improved in 4 months of acupoke.
mommarudy said:
Thanks everybody! I will look into every idea offered! I have used arnica gel and cold packs. Just aren’t working right now. I am no sleeping well because the head and neck pain are so bad that the pressure of laying my head down hurts incredibly badly. If is sit up for too long, I get lower back pain or body parts go numb. Now I also am get shooting pain through my right eye, too. I had a string of very good days prior to this, so I know the good will come back. I think sometimes he good days can make the harder ones a bit of a shock at first. I have seven kids, with five starting public school for the first time in years. Trying to get all the required summer packets completed is not going well, so my stress level is high and that is another thing compounding every symptom. Please know hat everybody is different and I in no way wants to discourage anyone’s progress or pre-op hopes. Im grateful for the surgery for I believe it saved my life. This is just a rough patch and I needed some ideas/perspectives from people who understand. Thank you everybody! I hadnt really thought about allergy testing but that’d probably be a great idea. I grew up being told to “suck everything up”, so it doesn’t even occur to me to do what normal people do everyday - go talk to the doctor! My last MRI two months ago said my sinuses were blocked, I just haven’t gotten around to getting to the doctor. I was doing well then and I guess I was one of the memories my mind didn’t hang on to! Thanks again for all the ideas! You are all a blessing to me! Randi
You are so right accupucture is wonderful when done by the right person. I have tried everything over the last 17 years to help my pain and acupuncture is one of the very few things that consistantly has helped me. I went to acupuncture for years before I knew I had Chiari. I would never have gotten through my second pregnancy without it. I was having severe issues with pain and balance problems because of Chiari but hadnt been diagnosed yet. I would have had a terrible time with my pregnancy without it. I was even induced for both my kids with acupucture and had them natural childbirth partially because of it. If I could afford to go all the time I would. I go when I can and I always feel better and the effects last for a while. It's one of the few therapies that have never made me worse and have have consistantly been a positive experience. You are right though it is very important to find a good one.
Wendy
Kyle said:
I really want your life to improve. My mom had suffered a lot when i was young. ( from the same issues i have now it seems) i would like to tell you about acupuncture. Cause it treats the location we are having trouble in ( ociput and neck. IF you had surgery you also have scar tissue. Which is numming and painful.) I started Acupuncture in april. By august I was well enough to go camping. I shouldnt have but it was very mentally benificial, and painful. I had two acupuncture sessions while camping. The big part tho. I have feeling in back of neck now sometimes. It even itches. Deep needles in that spot will relieve eye pain as well. All i worry about with you and acupuncture is FINDING the right person. ( it helps to have talent doing it)PLEASE try it more than once. And be vocal about our nerve problems or deep pain so they know where to treat best. I can educate you a little on how it benifits me, but ill save it. I may make acupuncture a full discussion. I went yesterday. Good luck.
Kyle said:
Its bizzare how many symptoms we all share. The blocked sinus, head flooding when i lay. I feel floaty in my head. I live on the beach too. So i notice the pressure from the water. Should i move (lol) im younger with no children. I really wish i could help you deal with your symptoms. Im no good at paper work. But, ACUPUNCTURE! I have to use this treatment on my neck skull and back. I am so much better AFTER. I was nerves at first, its not bad, painful. In fact. When the right area gets the right treatment it feels GREAT. Everyone is different and trained different, so trying more than one is the best idea. You will know when ONE person dies better treatments. Its very relieving, and helps treat stress as well. The oriental med dr i go to has also helped me with diet issues. Like no salad. Its raw. Kinda hard on the body. Like eating rocks. Everything cooked. No sugar, no alchol ( cause its sugar too). I couldnt say enough of how much ive improved in 4 months of acupoke.
mommarudy said:
Thanks everybody! I will look into every idea offered! I have used arnica gel and cold packs. Just aren't working right now. I am no sleeping well because the head and neck pain are so bad that the pressure of laying my head down hurts incredibly badly. If is sit up for too long, I get lower back pain or body parts go numb. Now I also am get shooting pain through my right eye, too. I had a string of very good days prior to this, so I know the good will come back. I think sometimes he good days can make the harder ones a bit of a shock at first. I have seven kids, with five starting public school for the first time in years. Trying to get all the required summer packets completed is not going well, so my stress level is high and that is another thing compounding every symptom. Please know hat everybody is different and I in no way wants to discourage anyone's progress or pre-op hopes. Im grateful for the surgery for I believe it saved my life. This is just a rough patch and I needed some ideas/perspectives from people who understand. Thank you everybody! I hadnt really thought about allergy testing but that'd probably be a great idea. I grew up being told to "suck everything up", so it doesn't even occur to me to do what normal people do everyday - go talk to the doctor! My last MRI two months ago said my sinuses were blocked, I just haven't gotten around to getting to the doctor. I was doing well then and I guess I was one of the memories my mind didn't hang on to! Thanks again for all the ideas! You are all a blessing to me! Randi