Aa
3 months post surgery
Really enjoyed reading the forum. It DOES help to know others understand what I go through on a daily basis. I was diagnosed when I was 12 yrs old with juvenile rhuematoid arthritis. (not sure if this has any correlation with chiari) I have been suffering from blackouts for over 25 years, starting when I was in high school. I was told I was getting up too quick or dehydrated. In college the fatigue, overall body pain, anxiety, dizziness was in full swing. I was diagnosed in 1995 with Fibromyalgia (the year it became known as a syndrome). Of course this was very frustrating because there weren't drs that understood this syndrome or there is no cure for it. Just managing.......the story of my life. In 1998 I was diagnosed with hypoglycemia. Joints began to deteriorate with injury so I've had a right wrist fusion and total rt hip replacement. The chronic pain began consuming my life about 10 yrs ago. The anxiety was out of control and no one seemed to know how to help me. My kids just knew to watch for the "look" if mommy was about to black out. I even resorted to making a HELP sign with my husband's phone numbers for my young children in case mommy passed out and didn't wake up. My kids developed terrible anxiety thinking mommy was going to die. Just terrible.
After years of struggling with "why me", I finally found peace that this might be how it is and I'm very blessed with the supportive family God's given me. I knew that all the specialists I had seen over the 25 yrs didn't have an idea how to help so I just trusted the Lord to get me through each day. I just had to get out of bed and put one foot in front of the other....without tripping if possible.
I was told to get an MRI and MRA over 2 yrs ago when I saw a ENT that specialized in vertigo/inner ear problems. He was a quack and I left there saying I was "done with drs".
2 yrs later the dizziness, fullness/pressure in my head and neck, overall chronic body pain, terrible memory, word scrambling, numbness in my tongue, ringing in ears, extreme sensitivity to sun light and persistent blackouts had worsened enough that I was willing to go forward with the MRI. I had an 8mm + tonsillar ectopia/herniation and was told to see and NS as soon as possible. I was recommended an amazing NS, Dr. Luis Mignucci in the North Dallas area of Plano. He was very experienced in Chiari and performed many surgeries. Since I had suffered so very long with no relief he said the only option for me was the posterior fossa decompression. two weeks later I was in surgery. I did have the tonsils carterized. I was in CCU for 5 days then sent home on the 6th. Wasn't easy but I knew I didn't have a choice and was willing and hopeful for better days to come. I have recovered incredibly well so far. I just passed the 3 month mark and struggling with occasional dizziness, fatigue, finding the right word, and nerve pain on the left side of my incision. So far my MRIs look perfect and I go back the end of august. I have completely off all my pain medication and muscle relaxants. That in itself is a miracle. I understand Chiari isn't curable but I'm hopeful in my future.
After years of struggling with "why me", I finally found peace that this might be how it is and I'm very blessed with the supportive family God's given me. I knew that all the specialists I had seen over the 25 yrs didn't have an idea how to help so I just trusted the Lord to get me through each day. I just had to get out of bed and put one foot in front of the other....without tripping if possible.
I was told to get an MRI and MRA over 2 yrs ago when I saw a ENT that specialized in vertigo/inner ear problems. He was a quack and I left there saying I was "done with drs".
2 yrs later the dizziness, fullness/pressure in my head and neck, overall chronic body pain, terrible memory, word scrambling, numbness in my tongue, ringing in ears, extreme sensitivity to sun light and persistent blackouts had worsened enough that I was willing to go forward with the MRI. I had an 8mm + tonsillar ectopia/herniation and was told to see and NS as soon as possible. I was recommended an amazing NS, Dr. Luis Mignucci in the North Dallas area of Plano. He was very experienced in Chiari and performed many surgeries. Since I had suffered so very long with no relief he said the only option for me was the posterior fossa decompression. two weeks later I was in surgery. I did have the tonsils carterized. I was in CCU for 5 days then sent home on the 6th. Wasn't easy but I knew I didn't have a choice and was willing and hopeful for better days to come. I have recovered incredibly well so far. I just passed the 3 month mark and struggling with occasional dizziness, fatigue, finding the right word, and nerve pain on the left side of my incision. So far my MRIs look perfect and I go back the end of august. I have completely off all my pain medication and muscle relaxants. That in itself is a miracle. I understand Chiari isn't curable but I'm hopeful in my future.
COMMUNITY LEADER
What is EDS?
Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.
What are the symptoms of EDS?
Clinical manifestations of EDS are most often joint and skin related and may include:
Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis.
Skin: soft velvetâ-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).
Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
I will PM a link on how they DX it~~
"selma"
Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.
What are the symptoms of EDS?
Clinical manifestations of EDS are most often joint and skin related and may include:
Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis.
Skin: soft velvetâ-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).
Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
I will PM a link on how they DX it~~
"selma"
I am so new to learning about Chiari since i was just diagnosed in early april of this year so please forgive me if I ask strange questions. :) It sounds like a great plan for your surgery. I haven't heard of the titanium plate, but seems sensible. I have quite a bit of titanium in my body with my replacements so we'll have even more in common. I didn't get a plate but bovine graph. sick I know. I pray it heals appropriately. Look forward to hearing of your surgery and recovery. Take care!
No I have never heard of EDS in all the yrs being treated and tested by numerous rheumatologist. It's very interesting though, I have never tested RH positive for rheumatoid, but the "look" of all the fluid drained from my joints as a child and the post op reports states "rheumatic changes in replaced joint". I have always wondered if I even had Juvenile RA...I've never responded to any RA meds & injections that I've tirelessly tried since I was 12 yrs old. What is EDS? I can look it up but interesting that it could be related.
Can you test for tethered cord or does it just appear post surgery? Also, what is IH and HA from your prev post? I'm so new, sorry.
I have over done the last two days with my kids & i'm paying for it big time. I know I have to listen to my body and to the "no no list". I guess feeling so much better so soon post surgery (which i haven't felt like since prob high school) I just assume I can go and do. Hearing from you the impt of slow pace and understand healing will take years brings things all in to perspective..especially since I feel like dirt right now.
Can you test for tethered cord or does it just appear post surgery? Also, what is IH and HA from your prev post? I'm so new, sorry.
I have over done the last two days with my kids & i'm paying for it big time. I know I have to listen to my body and to the "no no list". I guess feeling so much better so soon post surgery (which i haven't felt like since prob high school) I just assume I can go and do. Hearing from you the impt of slow pace and understand healing will take years brings things all in to perspective..especially since I feel like dirt right now.
COMMUNITY LEADER
The amount of bone removed is minimal and when done correctly should not pose an issue...and I have a great respect for Dr O...and all the other Drs out there, but we r all individuals that may need diff care...just as we all can not take the same meds.
Actually the older technique was to remove the tonsils completely...and there are some Drs out there still doing that....the cauterizing helps retract the tonsils to create room when there r issues of over crowding that may involve the odontoid and other conditions.
I will be having my skull portion removed, part of c1 and c2 shaved, dura cut into and a duraplasty with my own skin and a titanium plate for the muscles to re-attach to.. but I will not be having tonsils cauterized as my doc seems to think it is an older technique and that it is not usually needed and leaving the brain in tact as much as possible equals better results.. I am very comfortable with that... and he is very state of the art in his research and technology with the titanium plate to prevent the soft spot and the sunken effect and residual headaches some experience from having no skull there.
COMMUNITY LEADER
Plus, many chiarians develop other conditions post op...like IH, epilepsy...seizures....OR they had additional issues like myself I have tethered cord, which continues to pull down on my brain stem, I also have Ehlers-Danlos...so I have joint pain....and I still get HA's bcuz of the TC...so it is a variable on y someone may continue to have symptoms....and y someone may feel like they have none.
But u should continue to be careful just as u were pre op...as far as activities go....
PLUS u r only 3 months post op...that is when u may begin to have symptoms flare up as part of the healing process...until u r at the 2 yr post op point, u will not know for sure just what ur benefits r.
I have many more now, then at 3 months....so be patient.
And do not bend over..avoid those things so u heal!!!
"selma"
Oh GREAT!! I know there are many different emotions you must be going through pre surgery, but I pray mostly HOPE! Does Dr. Oro plan to go through the dura and zap the tonsils? my 2nd opinion said he wouldn't go through the dura but just remove the skull. I chose to go with my 1st opinion being that he trained under some of the best in Chiari over in europe.
I will be praying for a successful surgery and pleasant recovery!! Here's to better days!
Marcy
I will be praying for a successful surgery and pleasant recovery!! Here's to better days!
Marcy
Interesting. So even though part of the skull was removed and tonsils were zapped the cerebellum is still cramped? being that I'm almost 39 yrs and have had pretty bad symptoms since high school there could of been a lot of nerve damage I guess. I guess you never will know to what extent but I should expect there to occasionally be some symptoms around.
I still have frontal lobe pressure/discomfort when I bend over, squat down, look down or strain when having a bowel mvmt. It's not nearly as severe but still there to an extent. Before the surgery when I was constipated the front lobe pain was so severe I thought i was having an aneurysm!
Just thinking out loud.....being that I've had two joints completely deteriorate, total rt hip replacement and rt wrist fusion (post injury to the joint)...do you think there is correlation to the lack of circulation of CFS and my joints not healing which then led to rapid deterioration of the cartilage?
I still have frontal lobe pressure/discomfort when I bend over, squat down, look down or strain when having a bowel mvmt. It's not nearly as severe but still there to an extent. Before the surgery when I was constipated the front lobe pain was so severe I thought i was having an aneurysm!
Just thinking out loud.....being that I've had two joints completely deteriorate, total rt hip replacement and rt wrist fusion (post injury to the joint)...do you think there is correlation to the lack of circulation of CFS and my joints not healing which then led to rapid deterioration of the cartilage?
I do have a wonderful chiari specialist named Dr. Oro... I will be going in for decompression surgery by him on August 9th! a week from today. so wish me luck.
COMMUNITY LEADER
Hi...well first ur chiari is not confined to ur tonsils...chiari is the malformation of the skull....so, even tho surgery slows progression and restores CSF flow, we should feel better, it is still chiari no matter how u look at it and u can have residual issues such as nerve damage depending on how long a nerve was pinched.
And it will take time to see the benefits....I am now 27 months post op and can see much more of the benefits than I could at 1 yr.
I hope this helps, if not keep asking : )
"selma"
Hi Selma, I'm curious to know why chiari isn't cured if my tonsils were carterized? If the tonsils aren't herniated any longer shouldn't the CSF flow correctly which in then would reduce or eliminate the symptoms? I'm so new to understanding chiari even though I have already had the surgery.
thank you for your service and care on this forum. Marcy
thank you for your service and care on this forum. Marcy
thank you for your kind words. I truly believe, in my situation, I never had the "severe case of fibromyalgia" I was told I had for 16 yrs. The overall body pain, stiffness, fatigue, anxiety....described as fibromyalgia, I feel was totally the result of my chiari! When I read my MRI report and googled the results Chiari was the first thing that popped up. I had never heard of it but when I read the list of symptoms I knew I had finally found what was wrong with me. I was so hopeful and excited that there was an "answer" to so many of my problems. I have been told for 25 yrs that based on my blood/lab work I am as healthy as a horse BUT clinically I was a mess. Specialist were baffled on what could be causing the swelling, deterioration, chronic pain....I tried so many medications but didn't respond to any of them....at least positively. I don't know if the "lack of circulation" due to the blockage of CSF had anything to do with the deterioration in my hip or wrist, but it has me thinking it could of been the culprit.
If you have an 8 mm and 11 mm herniation you should REALLY consider finding a good NS that specializes in Chiari. I know the surgery has helped me so much. I never thought Id see the day that I wouldn't be in pain. My overall body pain is pretty much gone. I have lingering head pain due to the surgery recovery, but I know most is from the nerves regenerating and the healing of the surgery in general.
I pray this gives you more encouragement! Let me know if you have anymore questions.
If you have an 8 mm and 11 mm herniation you should REALLY consider finding a good NS that specializes in Chiari. I know the surgery has helped me so much. I never thought Id see the day that I wouldn't be in pain. My overall body pain is pretty much gone. I have lingering head pain due to the surgery recovery, but I know most is from the nerves regenerating and the healing of the surgery in general.
I pray this gives you more encouragement! Let me know if you have anymore questions.
Oh and I wanted to tell you also that You seem so strong and amazing for everything you have went through and that it amazes me to know that you managed your pain and your hip replacement and wrist fusion and all of that through just muscle relaxant, flexeral and 1 pain pill 2 x per day! wow.... that is amazing.. I don't know if I could do that so you are strong and I commend you.. and it sounds like you are still going through quite a bit of pain and fatigue and doing it without the pain meds when I know you don't have to because you do have a condition /multiple conditions besides chiari that warrant the use of narcotic pain relievers, but you are doing it by your choice... that in and of itself is amazing... most would chose to do it the easy way and just take the pain meds because they are there and offered. I again commend you and urge you to stay strong. I only hope to be as strong as you :)
That gives me a lot of hope as I have been diagnosed with arthritis and have inflammation causing me chronic daily pain on top of my chiari headaches and neck pain also.. my current primary does not think it is the chiari that is causing my fatigue or pain and thinks it is fibromyalgia.. I have been taking percocet 3 times per day at 10 mg for 9 months now and the pain is getting worse and it is not enough to even barely take the edge off my pain. I was hoping there was someone out there that had relief from body pain and similar type of symptoms that experienced enough relief from surgery to stop taking narcotics.... this excites me...I have read studies that links some fibromyalgia diagnosis to actually chiari.. but no real stories of it or releif stories from the surgery... yay... I found one..
I know everyone is different and that it does not mean that I will react the same way but it does give me hope... one side of my tonsils is 8mm the other is 11... so I am almost exactly the same boat as you.. it is very similar situation and story and it feels so good to hear a similar story and time-line as myself... so I am glad to hear your recovery story and diagnosis story.. thank you so much for sharing..:) You have given me some hope. I really hope to be off of my pain meds as I hate the feeling and the side effects they give me.
I know everyone is different and that it does not mean that I will react the same way but it does give me hope... one side of my tonsils is 8mm the other is 11... so I am almost exactly the same boat as you.. it is very similar situation and story and it feels so good to hear a similar story and time-line as myself... so I am glad to hear your recovery story and diagnosis story.. thank you so much for sharing..:) You have given me some hope. I really hope to be off of my pain meds as I hate the feeling and the side effects they give me.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Many will have a return of symptoms as we heal...so at the 3 month post op stage it is typical...
At 2 yrs plus post op, I found that I am doing better than I was at 1 yr post op.....u will continue to see changes in how u feel as time goes on......
As long as u do not feel worse or develop new symptoms u should be ok...recovery will be slow, so be careful to go slow in what u do....u still should not be lifting things over the weight of a gallon of milk....do not carry laundry up a flight of stairs.....
Pay attention to how u feel after an activity, if u feel poorly, avoid the activity or cut back on how much r u doing.
Thanks for sharing ur chiari journey thus far, u may want to post it in ur journal on ut profile page and add to it as time goes as a reference.
"selma"
That is a wonderful story. You are such a strong person to have endured what you did for so long. I am so glad you are doing so well after your surgery. Maybe you and your family can get the peace you need now.
YES! I'm completely off the one pain pill I took 2x a day and the flexeril I took at night. I have been taking something for chronic pain for probably 6 plus years. at about the 5 wk post surgery mark I was off it all. I pray this continues.
were you on pain meds and muscle relaxants before the surgery daily? and now you have found enough relief through surgery to be without them?
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