HI all. I had posted earlier this week about seeing yet another ns. I saw him Fri and he said, Yes you have low lying cerebral tonsils and yes the right is lower but I don't think 8-9 mm could even be considered a Chiari. He said he looked at the MRI and there was no crowding of the foramen magnum and that this wasn't causing symptoms. He did say I was pretty unsteady and I need to see an ENT, he thought maybe vertigo but he didn't know. He thought there was something going on but I needed to "give up the Chiari Quest". He said some radiologists have a loose interpretation when reading. He then went on to say that "if you go to the Chiari institute, I feel sure you will get surgery, but I have heard of alot of people getting it that didn't need it." Follow up with an ENT or your PCP.
I have seen more than enough of ENT's and my PCP, so I cried some on the way home, and decided to just give up. Life is hard enough and I am tired. I am giving up and will just continue to hurt and live a shell of a life with no one believing me. I am tired of trying to figure out if this is it, seeing doctors that think I am crazy, explaining it to people, etc etc. I think for me you can only be kicked so many times before you shut down and just don't get up. I don't mean this to sound depressing for any of you, much luck on your journeys.
I will continue to keep you all in my prayers and send good wishes on your journey. Much love and thanks for all the support and love and advice you have given. Jenn
I think that feeling of wanting to give up is experienced by so many people. It is hard to feel bad and have someone look at you and say you are fine over and over. I personally feel like when you have an appointment like that it is like a loss or a death. A hope for help and healing from that person dies. Grieve for that loss, but then move forward. There is someone out there that will help you and unfortunately it wasn’t any of the doctors you’ve seen. I’m sorry this journey for you is not easy.
Jenn, I am crying as I am reading your post. I know all too well that life is hard enough, but please please do not give up on your fight for your health because of the ignorance of the doctors you have encountered. I can tell you this…I set out to find out what was wrong with me over 15 years ago. I eventually gave up. Last year my chiari/syringomyelia was discovered on a fluke. Unfortunately, it is so far advanced now & I live every day in horrific pain awaiting my surgery. It didn’t have to be like this, & it could have been worse! There is always risk of organ damage, permanent nerve & spine damage, paralysis, & more. I don’t know yet what my chances are of making a reasonable comeback. I do know that it will never get better. I don’t know if it will get worse, but the younger you are when you are treated, the better your chances of full recovery. Please use the resources here to find reputable doctors & give yourself the chance at a long & pain free life. Oh how I wish there were sites like this back in the day for me! I don’t wish you to live in my pain. I hope you pick yourself up & fight. One day soon you will be so happy you did! BTW, I was never a big chiari Institute fan, but I strongly disagree with that statement. They do turn people away who legitimately do not need surgery, & there is an abundance of success stories from there right here! Please just think about this! - sending hugs
Thank you for the information, I appreciate your help and concern. I am just so tired. My PCP thinks I am crazy and I am starting to wonder if he is right. I will look into all the information that you have given me. I do not want surgery at all I just want confirmation that I am not imagining this and some help with ways to manage. God Bless, Jenn
Abby said:
Hello Jenn,
Please never give up. Your too strong for that. Having Chiari makes you a tougher than what your think you are my friend. Most of us have been told the same stuff and you get tired of hearing the same stuff. I have a 5 mm and have not had surgery yet. I thought everything was related to chiari, some of it is, yet, some of it isn't. My NL's assistant asked me what was my most troubling complaint, and I said overheating, blacking out, fatigue, brain fog, etc. She said, I want to send you for a tilt table test, what you have described to me sounds like dysautonomia, I was shocked, but went along with it. It was suppose to last 4 hours, but I was through in 8 minutes, 5 laying down flat, no problem, 3 minutes tilted upright, and that is about all I remember. I found out I had Vasovagal syncope, some call it POTS, Postural orthostatic tachycardia syndrome some other names. I was shocked and then my eyes opened wide, why did I have this? I started researching, this can be caused from Ehlers Danlos, or Chiari Malformation, I was evaluated for EDS a connected tissue disorder, and guess what, I have that too. You may have other related disorders that go along with the Chiari. You qualify with having over 5 mm, but be careful, having other disorders like EDS, can make your surgery outcome not successful. There are medicines to help you feel much better having Dysautonomia. I saw a big difference the first couple of days and can function more like myself. But, I will tell you, there are some days that one or the others act up and you feel bad, but our quality of life has improved. Not all of us are candidates for surgery and not all of us will have a successful one. This group is here for all of us to learn and learn from each other we do. You can have your regular doctor order some of the testing and evaluations too, if you are concerned. I am including some information for you, but please know your never alone, you have us and we need you too. You are cared for here.
Postural Orthostatic Tachycardia Syndrome (POTS)
Quick Identification
Symptoms: fainting, palpitations, nausea, lightheadedness, overheating, hyperventilation, vomiting, chest discomfort or pain, headache, loss of balance, loss of sweating or excessive sweating, weakness, tremulousness, neuropathic pain, and/or abdominal pain when upright
Diagnosis: A tilt table test is the standard method for diagnosing POTS. A change in the patient's heart rate of 30 beats per minute (bpm) along with the patient's symptoms should be used for diagnosis.
Individuals with this disorder experience loss of balance, lightheadedness, overheating, hyperventilation, palpitations, chest discomfort or pain, nausea, and/or fainting when upright. The autonomic nervous system cannot control heart rate, blood pressure, constriction of the blood vessels in the lower body, or respiration in individuals with POTS. When a person changes to an upright position, gravity begins to act upon their blood and pulls it to the lower half of their body. Most people's bodies adjust heart rate, constriction of blood vessels, and blood pressure to push the blood out of the lower body and up to the organs where it is needed. In an individual with POTS, this compensation does not occur and essential organs cannot get the blood they need while the individual is in an upright position. Upon returning to a neutral position, symptoms will subside, th
Do you experience any of these symptoms:
Severe headache and neck pain
dizziness
lightheadedness
nausea and/or vomiting
vertigo
palpitations
difficulty swallowing
visual disturbances
ringing in the ears
sleep apnea
impaired fine motor skills
and/or muscle weakness?
If you do, please continue reading.
You may have Ehlers-Danlos Syndrome and the resulting cranial settling.
Ehlers- Danlos Syndrome (EDS) is a genetic disorder affecting every connective tissue in the body. The body of an individual with EDS cannot properly form collagen, the "glue" that holds the body together. The resulting weakness causes many debilitating symptoms and an array of disorders may accompany EDS. Individuals with EDS can also have Cranio-Spinal Instability (CSI), a lack of stability of the neck and skull. Because of this lack of stability the skull may sink down onto the brain, forcing the cerebellum out of the skull creating a condition called cranial settling. This condition can mimic Chiari 1 Malformation (CM1). The resulting pressure on the cerebellum and the brainstem progressively damages both structures over time. In addition to this, the odontoid bone in the neck, due to lack of stability, may push backwards into the brainstem, causing further damage. The cerebellum controls the body's sensory processing center. The brainstem controls the autonomic nervous system, or all the body's functions that you do without thinking about. Dysautonomia, or the dysfunction of the autonomic nervous system, often results from damage to these vital parts of the brain. This can affect all of the body's organ systems. All of these disorders can occur in conjunction with each other, and combined they can cause all the sym
Ehlers-Danlos Syndrome(EDS) is characterized by a weakness of the body's connective tissues. Connective tissues act like "glue" in the human body, holding everything together. Collagen, a protein that adds strength to the connective tissues, is not produced correctly in an individual with EDS. The resulting weak connective tissues are too weak to hold the organs, ligaments, joints, ect. of the body in place.
Ehlers-Danlos Syndrome is currently separated into 6 major types. Individuals may have a combination of several of these types.
Hypermobility Type
Quick Identification
Symptoms: Hyperflexibility of the large and small joints, hyperextensibility of the skin, chronic joint pain, smooth and/or velvety skin, easy bruising, and/or recurring joint subluxations and dislocations
Diagnosis: Symptoms and family history may be used in diagnosis.
Pathology: No specific biochemical collagen finding has been identified. Inherited in an autosomal dominant manner
Classical Type
Quick Identification
Symptoms: Skin hyperextensibility, joint hyperflexibility, widened, atrophic scars, easy bruising, smooth and/or velvety skin, tissue fragility, recurrent joint subluxations and dislocations, pes planus, muscle hypotonia, delayed gross motor function development, hiatal hernia, cervical insufficiency, prolapse in childhood, and/or mulluscoid psuedo tumors (calcified hematomas) associated with scars
Diagnosis: Symptoms and family history may be used in diagnosis.
Pathology: Abnormal electrophoretic mobility of the proa1(V) or proa2(V) chains of collagen type V has been detected in some but not all patients. Inherited in an autosomal dominant manner.
Vascular Type
Quick Identification
Symptoms: Thin and translucent skin, certain facial characteristics (large eyes, thin nose, ears without lobes, short stature, and thin scalp hair), hypermobility of the digits, visual decrease in subcutaneous tissue in the face and extremities, extensive bleeding as a result of minor trauma, complications during and after surgery, early onset varicose veins, talipes equinovarus seen at birth,, acrogeria (premature aging of the skin), artiovenusfistula, carotidcavernousfistula, gingivalverecession, pneumothorax, pneumothemothorax, and/or spontaneous arterial, intestinal, tendon, muscle, or uterine rupture
Diagnosis: A skin biopsy can be used to diagnose this condition. Symptoms and family history may also aid in diagnosis.
Pathology: Structural defects in the proa1(III) chain of collagen type III encodes by COL3A1. Inherited in an autosomal dominant manner.
Kyphoscoliosis Type
Quick Identification
Symptoms: Easy bruising, atrophic scars, generalized joint laxity and severe muscle hypotonia at birth that leads to delayed gross motor development, Scoliosis at birth that is progressive, spontaneous arterial rupture, marfanoid habitus (Marfan-like features), micro cornea, and/or radiologically considerable osteopenia (diminished amount of bone tissue)
Diagnosis: A urine test may be used to diagnose this condition. Symptoms and family history may also aid diagnosis.
Pathology: Deficiency of the collagen-modifying enzyme lysylhydroxylase (PLOD). Inherited in an autosomal recessive manner.
Arthrochalasia Type
Quick Identification
Diagnosis: A skin biopsy may be used to diagnose this condition. Symptoms and family history may also aid diagnosis.
Pathology: Mutations leading to deficient processing of the amino-terminal end of proa1(I) [type A] or proa2(I)[type B] chains of collagen type I. Inherited in an autosomal dominant manner.
Dermatosparaxis Type
Quick Identification
Diagnosis: A skin biopsy may be used to diagnose this condition. Symptoms and family history may also aid diagnosis.
Pathology: Deficiency of procollagenI N-terminal peptidase. Inherited in an autosomal recessive manner.
ptoms listed above and many more.
Dysautonomia is the dysfunction of the autonomic nervous system. The brainstem controls the autonomic nervous system, and dysautonomia can be caused by the damage done to the brain stem by cranial settling or Chiari 1 Malformation. The autonomic nervous system controls everything that happens in the body that an individual does not have to think about, like respiration, blood pressure, temperature regulation, digestion, balance, and heart rate.
Dysautonomia is categorized into several types.
Postural Orthostatic Tachycardia Syndrome (POTS)
Quick Identification
Symptoms: fainting, palpitations, nausea, lightheadedness, overheating, hyperventilation, vomiting, chest discomfort or pain, headache, loss of balance, loss of sweating or excessive sweating, weakness, tremulousness, neuropathic pain, and/or abdominal pain when upright
Diagnosis: A tilt table test is the standard method for diagnosing POTS. A change in the patient's heart rate of 30 beats per minute (bpm) along with the patient's symptoms should be used for diagnosis.
Individuals with this disorder experience loss of balance, lightheadedness, overheating, hyperventilation, palpitations, chest discomfort or pain, nausea, and/or fainting when upright. The autonomic nervous system cannot control heart rate, blood pressure, constriction of the blood vessels in the lower body, or respiration in individuals with POTS. When a person changes to an upright position, gravity begins to act upon their blood and pulls it to the lower half of their body. Most people's bodies adjust heart rate, constriction of blood vessels, and blood pressure to push the blood out of the lower body and up to the organs where it is needed. In an individual with POTS, this compensation does not occur and essential organs cannot get the blood they need while the individual is in an upright position. Upon returning to a neutral position, symptoms will subside, though it may take hours for them to do so.
I am so sorry your journey has been so difficult for you. I am glad they found out and confirmed your diagnosis and pray that you will be blessed with a great recovery and life. I appreciate your encouraging words but I am soo tired. I am starting to believe like the doctors that I am crazy or imaging this. I haven't been able to work since November and I have been in healthcare for 25 years. I am so disgusted with the system and doctors right now that if I am able to return to work I don't think it will be for any more doctors.
You are still young and I know that you have had a more difficult time than most and that life for you must be extremely difficult but I know that you are strong and will prevail. Many hugs and much love. Jenn
jessica said:
Jenn, I am crying as I am reading your post. I know all too well that life is hard enough, but please please do not give up on your fight for your health because of the ignorance of the doctors you have encountered. I can tell you this....I set out to find out what was wrong with me over 15 years ago. I eventually gave up. Last year my chiari/syringomyelia was discovered on a fluke. Unfortunately, it is so far advanced now & I live every day in horrific pain awaiting my surgery. It didn't have to be like this, & it could have been worse! There is always risk of organ damage, permanent nerve & spine damage, paralysis, & more. I don't know yet what my chances are of making a reasonable comeback. I do know that it will never get better. I don't know if it will get worse, but the younger you are when you are treated, the better your chances of full recovery. Please use the resources here to find reputable doctors & give yourself the chance at a long & pain free life. Oh how I wish there were sites like this back in the day for me! I don't wish you to live in my pain. I hope you pick yourself up & fight. One day soon you will be so happy you did! BTW, I was never a big chiari Institute fan, but I strongly disagree with that statement. They do turn people away who legitimately do not need surgery, & there is an abundance of success stories from there right here! Please just think about this! - sending hugs