Well, Since my surgery now a month ago, I have had a few new problems and every time I see a doctor they put their hands up and tell me there are Not going to do anything for me because of my surgery!! Well, I am searching for a New Primary Care Doctor and I see a New one tomorrow.. So please cross your finger's that he will be the one who will understand and be willing to help!! But so far I have been doing good.. =) It comes and goes, but now time will tell. I went to court yesterday for my Disability case.. and now I am waiting on the answer from the Judge, but he sounded like it was in my favor!! So hoping for the best.. Not only do I have Chiari, but many other medical problems too..
Has anyone had other numerous diagnosis that lead up to finding out you had Chiari? Thanks everyone for your support though this time =) HUGS XO
1st off.....In my opinion , since you are only 1 mth post op ...your NS should be helping you. Finding a good Primary is key..oh how I pray you find a good one....let us know how you make out.
Glad court is over..now it is the waiting game...I have other med issues as well as Chiari and I was approved...
Oh yes, I had other Dx's that lead to the proper Dx....NL's told me they knew I was sick but insisted it was NOT THE CHIARI!! I did indeed have Lyme Disease which can mimic Chiari symptoms...I was Tx'd for 3 mth of mega anti biotics and I felt as though the Lyme was gone. However, I still had the H/a's balance issues, visual issues, racing heat beat out of nowhere.....EVERY NL told me it was NOT THE CHIARI!!!! Thankfully my primary advocated for me and set me up with the Chief Neurosurgeon in Rhode Island(where I was living at the time)...I did get a 2nd opinion in Boston.....the Boston NS agreed with my NS....so I went with him...closer to home....
sorry for my long reply!!!! Let us know how things are going!!!!
I so hope that you have found a primary physician that will be willing to help you! We really need one that will be understanding and help order tests and such for us. Let us know how your appt goes:)
I agree with the individuals about: go back to your neurosurgeon. That NS should be helping you on your healing journey.
I also have other medical issues that prevented the Chiari coming to light. I ended up having a complicated migraine this past December where they said all the symptoms were from that and I would be better the next day. I was worse. The neurologist I was seeing said none of the symptoms I have are from Chiari. My primary said it was my posture, lol.
Now I have an excellent family care physician and an even more wonderful neurosurgeon!!
I wish you the best of luck on your case as well! Tina
Hey Lori, Well I still see my NS but now only for my 2 week follow post op and now next week for my 4 week post-op. I was telling him that the meds he was giving me for the headaches and pain was doing NOTHING for me what so ever, and he said he couldn't give anything stronger to me and for me to see a pain doc and or my primary. Well I have, for now a Pain doc and he gave the same meds my NS did but way LESS!! made NO sense!! I walked out barely and was crying, so looking for a new pain doc too.. Then I go to my Primary who I have been with for 2 years, but not knowing he left the practice and someone else took his place. So I gave him a chance, and WOW he saw my incision was hugely swollen and I told him my NS sent me to him to get help with that and the pain I was having with my Stomach at that time. He told me to go home because I just needed to rest and he was going to give me NOTHING!! Again walked out crying!! My mom was with me and she was in Shock!! I just couldn't believe it. I could of torn my muscle at that time when i hear the pops and tore, and he didn't care.
So Last week I found the GREATEST Primary Care Doctor!!!! =) YAY!! I am so happy with him and his whole staff. They even got me in the next day. The Doc walked in and I had all my records from everything I have ever been DX with and we talked about it all and he spent over 45 mins with me.. It was amazing!! So I am very very happy.. Finally Some one else on my side!! My NS is on my side, but he can only really do so much I guess.. In aug I go to a headache Specailist, so hopefully that doc can help with that.. Yeah thank God court is done.. I know it's in my favor.. Just got to wait.. Sure wasn't the life I had planned.. but it's GOD's Plan =) Thanks Lori HUGS XO
lori said:
Hi Mommyof3,
1st off.....In my opinion , since you are only 1 mth post op ...your NS should be helping you. Finding a good Primary is key..oh how I pray you find a good one....let us know how you make out.
Glad court is over..now it is the waiting game...I have other med issues as well as Chiari and I was approved...
Oh yes, I had other Dx's that lead to the proper Dx....NL's told me they knew I was sick but insisted it was NOT THE CHIARI!! I did indeed have Lyme Disease which can mimic Chiari symptoms...I was Tx'd for 3 mth of mega anti biotics and I felt as though the Lyme was gone. However, I still had the H/a's balance issues, visual issues, racing heat beat out of nowhere.....EVERY NL told me it was NOT THE CHIARI!!!! Thankfully my primary advocated for me and set me up with the Chief Neurosurgeon in Rhode Island(where I was living at the time)...I did get a 2nd opinion in Boston.....the Boston NS agreed with my NS....so I went with him...closer to home....
sorry for my long reply!!!! Let us know how things are going!!!!
Hi Tina, Yeah I have a ton of other medical problems too that lead up to Chiari… So bad that I am 29 single mom who can never work again! =( But Yes I did find an amazing Primary Care Doctor for my other needs… and I have a Wonderful NS as well… Thanks for your support =) God Bless
tinabrat said:
I agree with the individuals about: go back to your neurosurgeon. That NS should be helping you on your healing journey.
I also have other medical issues that prevented the Chiari coming to light. I ended up having a complicated migraine this past December where they said all the symptoms were from that and I would be better the next day. I was worse. The neurologist I was seeing said none of the symptoms I have are from Chiari. My primary said it was my posture, lol.
Now I have an excellent family care physician and an even more wonderful neurosurgeon!!
I wish you the best of luck on your case as well! Tina
Hi Carla… Well I did finally find a GREAT primary care doc and I am so so happy with him and the time he took to listen and care for me and about me! =) Thanks for your support and good spirits that I would find one… lol =) Take Care… HUGS
Carla Jo Stone said:
I so hope that you have found a primary physician that will be willing to help you! We really need one that will be understanding and help order tests and such for us. Let us know how your appt goes:)
Hi! Sounds like things are looking up for you. I am soooo happy for you! God willing, your disability will be approved and next month, the headache specialist will help too. You're moving forward.