what to do when the expert blows you off

[kaykay1331]

Hi everyone. I need to vent a little here and then ask for any and all advice. My 21 yr old daughter has had lots of various issues over the years. I guess the first real issue which definitely didn't seem related(but now I wonder) was when on vacation we thought she got a case of sun poisoning. Here forehead swelled up like a cro-magnon man. It went down after a couple of days. She has had a few of these episodes but it has been a while. We thought it may be an allergy or reaction to something but along with it she had tingling in her hands and severe stomach cramping. I now wonder could this have been a temporary build up of csf? Another symptom in what appeared to be my slim, athletic, healthy daughter was high blood pressure. What teenager who is an athlete and is not overweight has high bp w/o an apparent heart condition? She is on meds for that and stays around the 140/80 mark. Not great but that may be an effect of her anxiety, yet another symptom. She also has had various other symptoms over time, not sure when they came along. Numbness/tingling in extremities, balance/coordination issues, tinnitus, severe headaches, memory/concentration issues, dizziness(does this go along with balance?) depression, fatigue and since Feb, and I don't understand this one but depersonalization/dissociactive disorder(self-diagnosed). She has gone to her pcp and he would do this or that but never anything I deemed aggressive. She ran out of meds for either her bp or anxiety(which didn't work anyways) so had to see the pcp for a renewal. He was not available but my pcp was so she saw her. Thank God. I know we are talking about chiari specialists on this forum but I would like to give a shout out to Dr Amy Hovermale with UC Physicians Group in Cincinnati. You may have to wait an hour and a half sometimes but that is because she takes the time and doesn't play. She saw Chelsea and during that appt discovered an irr heartbeat, put her on a ekg machine where Chelsea proceeded to have at least 1 pvc although I don't think she was on it long. With this and the other symptoms she ordered an MRI, EEG and EKG. I told you she didn't play(she's not afraid of the ins companies). The EEG and EKG came back normal which is great but still doesn't shed any light on the bp issue but the MRI came back with a finding of a displaced cerebellum. Well this was not her area of expertise so she referred her to a neurologist. I of course freaked when I heard displaced cerebellum and googled it and found only one thing - chiari malformation. Looked it up and the various symptoms and thought I would see a picture of Chelsea there. With that info I went past the neurologist referral and got her an appt with the Mayfield Clinic Chiari Center. They ordered a cine mri before they saw her. Saw Dr Theo and he said she does have some blockage but didn't seem to think it was that bad. Didn't seem too concerned with any of her other symptoms either with the exception of her headaches. When he found out they weren't the classic chiari headaches(brought on by sneezing, coughing) he basically told her he didn't think she was a good candidate for surgery meaning he didn't think it would be beneficial. I assume that means that he believes all these other symptoms must be related to something else. I asked if the herniation could get bigger and he said no and also could she develop a syrinx and he said it's possible but...appt over. We/I were the typical patients and didn't ask any more ?'s I think because we were in shock that here is a girl with all these symptoms and we were so encouraged going into this appt that there may be a light at the end and then BAM! We left with different emotions. My husband relieved that she didn't have to have brain surgery, myself conflicted knowing that surgery is the only real solution and Chelsea in tears that she had to continue to try and live like this. I called the center the next day and asked to have the director, Dr Tews, look over her file and after a week or more got a call from the office saying he agrees with Dr Theo's recommendation(do nothing - see a headache specialist) and if we wanted a second opinion we would have to go elsewhere. Have since been in touch with the Cleveland clinic but can't get in until Dec 11 at the earliest(finals week of course). The thought of waiting another 2 months for anything to happen is becoming too much for Chelsea to bear. This all just feeds into the depression/anxiety and probably high bp. I don't know how to help her and it's killing me. Sorry for the novel but wanted to get all the info out there. Any suggestions? I know there are people with much worse issues but this is my daughter and her issue, which really is negatively impacting her life and I am not just talking about the pain.

[selmaS]

  Hi and welcome to the Chiari forum.

While many of us do have a hiatal hernia, we also were DX''d with Chiari Malformation which is the reason for the above thread...since my surgery I do not have the same issues I had b4...so the surgery for the Chiari for many regardless if we have a hiatal hernia will be benificial.

We also tend to have connective tissue disorders as well as auto immune issues....and I agree conventional medicine most times is not a help and surgery may worsen the current condition IF they do not have a true Chiari specialist OR ALL related conditions were not ruled out and precautions taken b4 surgery is considered. Surgery should always be the last resort.

[Roydm]

I'll also add that Conventional medicine and doctors  most likely will not fix your problem. Consider autoimmune remedies. I've done a lot of research on Haital hernias and most everyone that's gone through surgery or conventional medicines worsened their condition.

[Roydm]

I've had the same pain in my head when bending over and coughing for well over 6 months. My Holistic Doctor said it's a Haitail hernia causing gas to go into the head under pressure as in bending over and coughing. It has also effected my hearing a lot.
Research or ask your doctor to check for this hernia.

[Sexybare]

I'm not sure what caused the blockage. I had first surgery aug 2011 and dr said flow was good after. Felt worse after surgery so sought out a specialist. I april my flow was turbulent(trying to get thru) by aug 2012 for my second surgery, when ns opened me up I had significan blockage. I am labeled as recurrent chiari, because it just keeps herniating. I will update ya fri after I see my ns for mri and 2 mo post op. I'm anxious to see if there's any change? Hugs,Dana

[Sexybare]

I too had a callous on my tonsils and dr electrocauterized that tonsil. But I don't remember talking to ns after surgery and my mom nor fiance remembered not much he said. Can't wait to talk to dr fri for 2 mo post op. But I'm not ready to return to work. I am an autoworker building gears on assembly line, extremly physical, fast paced and repetitve reaching and bending and lifting, ugh

[actressmouse]

In short, YES, you don't need to have an absence of CSF flow for it to cause problems...I'm the walking proof!!  

I am almost 4 months post op decompression and fusion skull to c2 done at TCI in New York.  My OR report indicates "scanty" CSF flow at the foramen magnum (the hole in your skull where the brain stem exits the skull and joins the spinal cord).  With a 6 mm herniation that was wicked fat,  I had horrendous pressure headaches, hearing loss and tinnitus, sleep disturbance, vertigo, double vision, and never ending back pain.   Interestingly enough, I also have the irregular heart beat (mine beats 3 times, skips a beat, beats twice, then 1/2 beat) that has stayed stable throughout my life (I did learn recently that I have a mild mitro valve regurgitation, but no prolapse).  I've also been dxd with a connective tissue disorder which caused cranial cervical instability and a retroflexed odontoid process that had created a pannus (callous) on my brain stem.  

I had my surgery 2 years after initial diagnosis only after exhausting every other non-invasive attempt to end the headaches and getting 4 opinions.  Definitely get another opinion.  I did, and I'm headache free now with improved sleep.  Still recovering, but back to work full time.  Good luck to you and your daughter on this journey!!

[linnielou232]

I 1st want to say welcome you have found a good place to come to find out info and for loving support.  We sometimes call what you and your DD are going through right now as the Chairi-run-around.  It is flustrating, but just to reassure you.  I went to 3 spec. before finding the one who sat down and explained things to me and gave me a choice of what to do.  It is a process because of insurance reason's, but Hooray to you mom for being persistant and getting answers for you DD.  Wishing you the best and just wanted to reasure you that it will all turn out for the good.
Linda :)

[kaykay1331]

thanks Dana. I believe the Dr we saw is supposed to be a chiari specialist or at least it is one of his specialties. We should be getting her medical file tomorrow so I will start shopping it around. Was there something specific that changed the flow of your csf?

[kaykay1331]

thanks Selma, we have considered the poss of POTS but the more we look at it the more we're thinking prob not. Mainly because she doesn't seem to have the increased heart rate upon rising which seems to be the main symptom. Same with EDS. I will ask about these two things though next time we are at the Dr. whichever that one may be. As far as a chiari specialist, the Dr she saw I believe is considered one. Def the one who looked over her file and agreed with him. we will just keep plugging away and continue to follow this forum for additional ideas and support.

[Sexybare]

Yes, I do believe any sort of blockage will cause these symptoms. For the longest time my flow was called turbulent by my ns. They didn't find it reason enough for surgery. Few months later it was significant blockage and I had surgery. A lot of times they will give meds and watch it for progression. I think u need a chiari specialist.....Dana

[selmaS]

  Hi and welcome to the Chiari forum.

First..as the NS said not all with Chiari are surgical candidates...and if these Drs did not do more testing shame on them....

I would suspect from the symptoms u mentioned ur DD may have POTS which affects BP and EDS as there r some that can have mitral valve prolapse and cause an issue with irregular hear beats.....

Many times these related conditions can cause many of the symptoms we suspect from Chiari...however, most NS's do not dx they only treat...and the ones u went to did not seem to have a NL there to offer help.

U really need a NS that is a Chiari specialist that will send ur  DD for more testing to rule this related issues out....that way she can find the best course of action.

Check around u may find a NL willing, or a rheumatoid Dr to rule out the EDS....as that is their area....it is best to know if she has these related issues b4 u even consider surgery as they can affect how she feels and heals post op.

I am happy to have u join us,but sorry for the reasons that bring u.... and it may help ur DD to join us as well so she does not feel alone.

[kaykay1331]

she had a reg mri and then a cine mri. Neither were full spine. Dr did say she had some blocked flow but didn't act like it was significant and no syrinx. With all your experience on this forum, can even a slight blockage cause so many problems? I don't believe her herniation is that large either(don't know the measurement but will be getting all her records on Mon) but it is obviously positioned poorly enough to cause some csf flow problems.

[Sexybare]

Def get that second opinion. A lot of chiari specialists will have us try diff things at first to see if it helps without doing surgery. I've been thru surgery twice and both times tried meds and nerve blocks before. GET THAT SECOND OPINION. what test has yout DD had, a mri of full spine? This will determine if she has csf blockage and or syrinx.?

[Threewheelmobile]

Clap your hands , go see someone else. This person didn't want to help or take you serious enough. Then he\she wouldn't be able to help you anyways. Saves you a lot of grief later.