Arthritis confusion; c3-c4 advanced and newly diagnosed

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Chloe Miller

Posted Friday, October 03, 2008 2:25 AM

Group: Forum Members
Last Login: Friday, October 03, 2008 2:40 PM
Posts: 4, Visits: 13

Hello Everyone,
I hope I find some answers here, because my doctors make me more confused. I know this may seem long winded, however, it is difficult to summarize such a painful past 11 weeks.

My Story,
On July 13, 2008, towards the end of a fantastic 3 week visit from my 20 something youngest daughter who studies in Australia, I started having vertigo type symptoms and a headache. Almost 11 weeks later that headache has not let up not once! Because I have a wonderful supportive husband and want to keep him, I moved into the darkest, most quiet room in the house and have stayed there constantly groaning and wrestling for hours on end with the pillows, bedding. heat pack, and a T.E.N.S machine contemplating my future.

• I bought every OTC medication and cried from the headaches in private while waiting to see my doctor who was on vacation for a month, (not having any faith in the other doctors in my Podunk town) and feeling like I should just ignore my severe dizziness after numerous comments from family and friends about everyone having vertigo at some time in their lives.

I had no idea that months later I would be desperately searching for answers from anonymous arthritis sufferers and supporters online, but here I am.

• My doctor originally felt that I may have Mastoiditis due to the pain radiating around the mastoid area behind the ears towards my forehead. She gave me a ten day course of Cipro antibiotic. I explained that I also had a neurological type pain all over the back of my head and extremely painful hot spear like pains every few minutes or so in five stable spots on the back of my head. She felt Mastoiditis could cause this.
• I chopped off my long hair because I could not stand even touching it.
• I had two MRI’s of the brain with contrast after the first appeared to be unreadable in areas; nothing remarkable
• Blood tests did not show a raised white blood count making me wonder about a mastoid infection
• I also had x-rays of my mastoid bones which indicated some chronic Mastoiditis, which was later negated by an ENT specialist.
• I was Rx’d pain killers all of which did not in the slightest relieve any of the headache, including Vicodin, Advil with Tylenol extra, Tylenol/codeine to no avail.
• My doctor went back to her country for a family emergency for another three weeks and I felt in a constant state of frustration during that time
• I did go to her fill-in doc who told me that there were thousands of reasons for headaches and all he could do is give me ultracet for pain and to see my doctor as soon as she came back.
• Spent eleven hours in the E.R one day when I could bear no more, and was vomiting and falling over from the dizziness and pain. After shots of morphine, an MRE, more blood tests, (no findings), I left there with no relief and a doctor who believed my headaches were migraines…(to which my husband said it was no such thing as plural headaches; it was one headache that had not let up for 8 weeks and a nurse who assured me that it was allergies because of the town I lived in. I implore anyone with a severe headache to avoid E.R’s at all cost… they are the noisiest places. I believe that all E.R’s should warn all visitors and staff to refrain from talking and laughing at 6+decibels.
• The Imitrex and percocet prescribed by the very nonchalant doctor did nothing for my pain and left me contemplating the emergency room bill with frustration.
• By this time I was suicidal from the pain, frustration and lack of sleep and spent days seriously contemplating the consequences of my death.

GP Visit
Visited my doctor on the day of her return, sat crying and was desperate enough to beg her to do something. She realized how much I had been suffering and swore to get to the bottom of my condition. She made emergency appointments with a neurologist and ENT specialist the next week and prescribed Oxycontin for the severe pain for five days until my specialist visits. I left with her apologizing profusely, knowing that I am the type to avoid doctors unless I was in serious distress.

Visit to Dr. Al the neurologist

• Dr. Al was either on drugs or was on the high side of bi-polar…okay, I am not a doc, but it was the strangest visit to a doctor in my 50 year memory. I was lucky my husband had to drive me and joined me in the doc office so he could help me understand what was said if I had difficulties due to my severe headache. One had to be in the room to understand the craziness of the consultation. On exiting the doctor's building I had one of the few laughs over this period when my husband burst out with, “omg I feel like I have just been RAPED!” The doc never let either of us get more than 4 words in at any one time and spoke in so many medical acronyms that half way through I burst into tears thinking that this doctor was not going to give me answers and the rest was a blur or was he?

• Dr. Al felt that the pain was coming from the neck and requested an M.R.I of the neck and more blood tests for different blood counts than I had in my previous two blood tests. He also requested a spinal tap (which I have refused thus far) in case there was some kind of uneven spinal pressure—intra-cranial hypertension

• I do remember him speaking of Neurontin for occipital neuralgia and Zanaflex for the frozen muscles of my neck shoulder area which at the time confused me because I had no pain (I believe that the severe headache helped me ignore any other pain) in that area at that time.
• He also felt my headache was like a migraine with light sensitivity, dizziness, nausea and spasms. I have never heard of a migraine lasting months, however I am the first to admit that I knew nothing about headache/migraine symptoms being one of those rare individuals who did not suffer from headaches unless it was from some common cold etc. He gave me Relpax, a migraine medication to try which did nothing.
• After a few days of slowly getting used to the Neurontin and Zanaflex my headaches went from a constant 9 to a 5-6 wow!
• Hmm, now I felt pain across my shoulders and up my neck and it was getting worse.
• My GP referred me to physiotherapy to help release tension in my neck area, which has helped me understand why my neck muscles are now so stiff and weak after so many weeks supporting this headache and the need to strengthen this area. I am religiously doing the prescribed exercises for this area with some results.

Neurologist Test Results Oct. 1, 2008

Moderate to advanced arthritis with narrowing of the spinal column at the C3-C4
Raised levels ??? in blood test indicating rheumatoid arthritis……………………….

Family doc and neurologist called me the day the results came through and made immediate appointments explaining that they feel they had the answer to my illness.

What I Need Now

Here is where I need help.

I visited my family doc who seemed to believe that anyone with advanced arthritis at C3-C4 with narrowing needed to visit a neurosurgeon. This comment sent me back to horrific memories of discussing many miserable lives after failed fusions with patients in a pain clinic 20 years previously. I decided to research spinal fusions knowing that technology may have come a long way, however;
• I can find almost no information on advanced arthritis of the C3-C4 vertebrae or treatment let alone finding anything that links it with occipital neuralgia.
• From my research it seems that any fusion is still not a surety of repair and relief.

If you are still reading at this stage of my post, hopefully you may have some insight into my condition. Any input will be appreciated.

Making lemonade out of lemons/on a Positive Note

My severe headache made me
• micro manage my diabetes
• almost forget my constant left shoulder arm hand pain with numbness in my fingers
• made me use my oxygen more often (needed for chronic bronchitis)
• Swear to myself that I would get fit and never again take for granted my ability to be a part of this world.
• Buy a total gym after watching chuck and Christie around 4 am each of my sleepless nights when only infomercials were on. It seems so easy to use BigGrin

• Lessen my PTSD flashbacks (I think because I could not concentrate on anything for more than a few minutes) that had been so numerous over the previous two year period that I had to quit my job teaching at a college and hug my couch.

Post #4162121

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Grandpavan

Posted Friday, October 03, 2008 11:03 AM

Group: Forum Members
Last Login: Today @ 12:42 AM
Posts: 5,205, Visits: 4,280

I admire your ability to make lemonade out of your very sour lemons, but I'm sorry you have the lemons. I can't really help you but I do suggest you post this on the RA Connect Rheumatoid Arthritis forum on this site. That is by far the most active forum and you are most welcome there. You might sent a private message to TeacherRobin because I know she had lots of trouble with a prolonged migraine. I doubt that the cause was the same but she might have some tips to offer and she is a very kind and helpful person. I look forward to seeing you on the other forum. (I'm about a week behind in checking that site so you may already be there, but I check these other forums just to see if anything is new.) God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter. Doing well on Methotrexate and Remicade.

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